[Webinar Recording] The Victory SUMMIT® Virtual Event: Care Partners

FEATURED IMAGE care partner victory Summit

On November 13, 2021, we held The Victory Summit® Virtual Event: Care Partners, providing resources for the care partners and caregivers who are an integral aspect to living well with Parkinson's.

In case you missed the event, you can watch all the recordings of the presentations below.

Welcome and Introduction

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You can read the transcript below. To download the transcript for "Welcome and Introduction," click here.

Polly Dawkins (Executive Director, Davis Phinney Foundation):
Good morning, everyone. And welcome to the Victory Summit for Care Partners. I'm Polly Dawkins, and I am the executive director of the Davis Phinney Foundation. I want to tell you a bit about a really exciting new resource we have launched for our Parkinson's community. Last month, we released our first edition of our Every Victory Counts manual for care partners. This Every Victory Counts manual, you may order a copy free of charge. If you go to that website that is listed on the screen here, everyvictorycounts.org. If you have a hard time getting at that website, put it in the chat and we'll let you know, there's also a 8 5 5 number you can call, which is 8 5, 5, and then the word Phinney, just like Davis Phinney. So 8 5, 5 P H I N N E Y. You can order it through that number.

This manual as the slide shows really includes some of the most frequently asked questions that we receive from care partners. And it has the responses from us, from experts in the Parkinson's community, as well as from care partners. And this is a really accessible and exciting as well. We have launched a new edition of the Every Victory Counts manual which is the sixth edition. So Leigh, if you'll go ahead and stop sharing screen, thank you. This is what the manual looks like. Also, this one for Every Victory Counts manual, as well as the Every Victory Counts manual for care partners, you can see it's quite small, but it's really packed full of wonderful information. Again, that's available free of charge to you all, and I do have another piece of information here. We have polls. We'd love to know who you are and what, what's your care partner role.

So let's go ahead and start some polls here. So I'm going to launch a few polls here, and if you go ahead and answer those, and then I can if you are, if you really, if some of these questions don't apply to you, feel free to ignore the polls. If you will go ahead and answer these five questions we have for you. So we're looking to see, are you a care partner? How old your person with Parkinson's is? How long has your person been living with Parkinson's? Whether you're with another person or by yourself watching? And how many Victory Summit events have you attended? I'm going to share the results just so that you all know who's here. So most of you are spouses of care partners, excuse me, spouses of people with Parkinson's. And many of you are caring for somebody who's 70 years old or older, and boy, 30% of you have been with your living with Parkinson's for 10 to 20 years.

Mood and Mental Health Strategies for Care Partners

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You can read the transcript below. To download the transcript for "Mood and Mental Health Strategies For Care Partners," click here.

Polly Dawkins (Executive Director, Davis Phinney Foundation):

I am going to introduce our first speaker. I am thrilled to welcome Jessica Shurer to our virtual stage. Hi, Jessica. Jessica is the director of patient and care partner advocacy for the cure Parkinson's or excuse me, Cure PSP, whose mission and services are dedicated to the awareness, education, care, and cure of atypical Parkinsonism diseases. Prior to joining Cure PSP, Jessica served as a center coordinator and the clinical social worker of the movement disorder centers at the University of North Carolina Chapel Hill. And she was in that role since 2012. So, Jessica, welcome. I'm going to go off my screen here and turn it over to you. Thank you for being here today.

Jessica Shurer, MSW, LCSW (Director of Patient and Care Partner Advocacy, CurePSP):

Oh my gosh. It's my pleasure. Thanks everybody. So, yeah, I've only been in my new role for just over a month now. So I'm mostly working with folks with a progressive supranuclear palsy, corticobasal degeneration and multiple system atrophy now, but I spent nine and a half years primarily working with people with Parkinson's disease. And that will always be, I mean, y'all will always be and still are just did incredible you know, so close to my heart, this, I never want to fully leave the Parkinson's community. So it's really special to still be connected to everybody. I also had the honor of being part of actually I have a copy here too next to me, I just got it in the mail the other day of being one of the authors for your Every Victory Counts manual. And anyway, I just think Davis Phinney Foundation is a wonderful, so it is great to be here.

So let me share my screen. It’s always the fun part of the whole zoom thing is doing the whole screen share thing. So yeah. Hi everybody. I'm Jessica. Happy Saturday. I am wanting to talk about the importance of addressing mood and mental health for care partners. I think that in the caregiving world and the Parkinson's world, we very often talk about the importance of self- care for care partners. But sometimes we don't always break that down into more specifics about what that can really look like or mean, but attending to mood and mental health is really a huge part of that. So that's really what I want to focus on today.

I have to acknowledge this is the tip of a very large iceberg. Mental health is extremely complex, right? It's dynamic. And it's also a very subjective topic. We could spend many hours, way longer than 50 minutes talking about this topic, but I do want to use this as an opportunity for reflection and to really have a conversation. I'm going to try to save as much time as I can at the end for conversation and questions. I really wanted to start a conversation around mood and mental health of Parkinson's care partners. I think it's really important for us to normalize this as part of the human experience. And to think through ways to be more intentional about addressing this. Now, of course, I also want to recognize this is very personal and everybody defines mood and mental health very differently. And so thinking through how you define that for yourself is a part of this process.

Okay. So what is it, what is mental wellbeing, mood, mental health? I mean, these are all really big and sometimes broad, in general terms. Like I said, everybody defines this differently, but very generally what we're talking about is the emotional, psychological, and social health aspects of our health. But again, thinking through what this really means for you, and you all know, I mean, in that poll, we saw that many of you have been living with Parkinson's in your lives for many, many years. We know that in Parkinson's historically there has been so much attention to the physical health of Parkinson's. We call it a movement disorder. We focus on you know, on exercise and on pharmacological treatment and on your mobility. And of course, all of that is extremely important, but we also know it's equally as important to attend to the non-motor symptoms of Parkinson's disease.

But this goes for everybody as well, we talk about the importance of exercise and of going to the doctor and everything, but are we really talking about our mood and our mental health enough? So I think a lot of times care partners, just like we get real used to as care partners attending to the physical aspects of Parkinson's. You know, that's, we're seeing the same things with how care partners are taking care of their health. Parkinson's disease brings up a very complex emotional journey. This changes over the course of Parkinson's and I'm sure many of you can think back to when Parkinson's first came into your lives and how you and your partner reacted to that. How you felt about it, the fears, the questions, the considerations that that brought up for you, how you coped, how you've been coping with it, whether diagnosis was two months ago or 20 years ago, Parkinson's disease can bring up what we call anticipatory grief.

So a lot of feelings around what is this going to mean for me in the future? And you know, what's going to happen next? What should I expect? There's a lot of unpredictability with Parkinson's disease and it can be really hard when you don't get those answers from your providers about what to expect. And so it's sitting with that uncertainty. Again, I mention this because all of this is part of the complexity of what mental wellbeing means. I recently had this as a topic in one of my Parkinson's support groups or really, you know, an open discussion topic. And it was around this point, when we were talking about the emotional journey that one of the Parkinson's care partners called it a two-way street. She said that how I'm doing as a care partner mentally and emotionally has an impact ultimately on her partner with Parkinson's disease.

And she said how her partner with Parkinson's disease is doing mentally and emotionally impacts her. And so it was really you know, it was really this two-way street between the two of them. And I thought that was just such a good point. Also, when we talk about mental health and mood, and this could be its own whole topic by itself, but wrapped into that is the care partner identity. You're, just like when someone gets diagnosed with Parkinson's disease and they have to live with that label, like now I am a person with Parkinson's or a patient. And what does that mean for my sense of self? We see that with care partners too being labeled as a care partner or a care giver and what does that mean for yourself incorporating that role and adjusting to that role into your sense of self into your lifestyle and your routine.

We also see when we talk, and this is important when we talk about self-care, but we see a lot of care partners, not having these conversations around mental health and mood or self-care because they share, they feel like they have to stay strong all the time for their person with Parkinson's disease. They have to keep, one of my support group members recently called this, they have to keep an even keel. So that means not really showing a lot of emotion about the journey. And that also means not showing vulnerability themselves because so much of that energy is centered around how the person with Parkinson's is doing. They don't want to bring that focus on themselves and feeling vulnerable. Of course, we also have to recognize the intersection of mood and mental health with Parkinson's disease, with other life challenges. Parkinson's disease does not happen in a void. There are other factors and situations in your life that are going to bring up difficult emotions or positive emotions. And how does that intersect with your life with Parkinson's disease?

Our mental health can also be reflected in how we talk about ourselves, how we talk to ourselves, are we very self-criticizing? Are we recognizing our own strengths or really just focused on what we could be doing better? Are we being nice to ourselves? We ask for others to be nice to us, but we're not always super nice to ourselves. And I'm sharing that from my own personal experience as well. But I hear that a lot from care partners, I'm not patient enough. I wish that I could do this better. When I brought this up in my support group recently, someone very pointedly shared that when they're asked the question of how are you, it's a very loaded question. And I think that even outside of Parkinson's and the care partner role, we see this too. I know from personal experience. You can have a lot going on and you run into someone, and they go, how are you?

And there's this very quick thought process of like, how much should I share? And you know, how much do I want to disclose, do I want to be honest with them? I just had this hard thing happen. And then you end up being like, I'm fine. How are you? Or, and this came up in my support group recently, you end up saying something that might be very true and a little bit difficult of like, oh, you know, we've had this and this going on and then kind of dismissing it very quickly with, but, you know, I can't complain. Often, you know, I just think that this brings up the example of, are we really being honest with ourselves? Do we want to be honest with ourselves? Do we want to be honest with other people? Oftentimes the Parkinson's journey, the care partner journey is an experience that other people can't see outside of you and the other person with Parkinson's or sometimes your family or the people in the immediate, your immediate circle and network of support with Parkinson's. And we're kind of keeping that close to ourselves. I know that I'm talking about some very existential stuff at this point, and I will move forward now I promise, but I'm just, my point is mental health is very complex. But in our society, we're not really talking about this enough, or are we talking about this enough? And especially are doctors talking about this enough? Is it really coming up in healthcare to the extent that it should?

A lot of this is wrapped up in stigma as well. Stigma is very complicated in itself, but just to define it for y'all, it's a very complex construct that shapes a negative attitude towards something, it's impacted by self, cultural, and structural components. We can have self-stigma, we can have stigma towards others. It shows up with generalizations and stereotypes and behaviors. Mental health stigma by itself is embedded in the historical treatment of mentally ill and also of women, you know, around historical views of hysterics and emotions and how much we're allowed and not allowed to share our feelings. This can become internalized for us. So, you know, I, you know, when you have a feeling and then kind of shutting it down with, that's not normal, I shouldn't be feeling this. This can be a major barrier to participation in mental health services.

And it's also a barrier to people recognizing their own mental health challenges and to sharing it with providers and to providers asking about mental health. And of course, we also have Parkinson's stigma layered on top of that, Parkinson's stigma is very much related to ageism and ableism in our society. There's many misconceptions around what Parkinson's disease is and looks like. And this very much leads to people not, some people not sharing the diagnosis or trying to hide the diagnosis or not talking honestly about it. This leads to marginalization and isolation of not only people with Parkinson's disease, of care partners, but of people who are struggling with mental health challenges. It also leads us as a society to pathologizing what is really a normal part of the human experience. Parkinson's disease, other health conditions, mental health emotions, all of that. Now, I don't know about all of y'all robots out there, but most of us are human and these things happen, but we're abnormalizing them.

I don't know if abnormalizing is a word, but there you go. We're making them seem abnormal. And because of this, there's under recognition and under addressing under treatment of mental health challenges. But, and, you know, I will say I have seen more awareness around this, especially in recent years, but still I find that mood and mental health seems to be a bit of an afterthought sometimes in healthcare. Especially when you compare it to physical health, we see this in health care sometimes we call it the hand on the door phenomenon that you go to your appointment with your neurologist or your primary care doctor. And you talk about, you know, the symptoms that have come up since you saw them six months ago with your walking or your voice or your medications, or whatever's going on. And that's really what the doctor is asking about.

And then your 30 minutes with the doctor's over, and you're literally leaving the room and you have your hand on the doorknob, and then that's when you turn and you go, oh, by the way, he's been struggling with depression recently and the appointment is over and that's something, that's a conversation that we don't want to rush. And you don't want to rush, but it's, again, it's almost like an afterthought. Another little phenomenon that we tend to see that has come up recently and I'm glad that it's coming up more recently is what I once heard a doctor called the tissue dance. So you come in for your appointment, whatever doctor's appointment and you're having conversations around what's been coming up and your questions and your concerns and all of that. And that can be very emotional, and someone might tear up, the person with Parkinson's, the care partner.

It brings up some, you know, some fears or some emotions, and they start tearing up and the doctor, there's this whole tissue dance of like, oh, they're crying now. I need tissues. Let me, where did I put the tissues, here they are. And so it's almost, instead of just being kind of prepared with tissues are here, this is a safe space to talk about some hard stuff. But a really cool thing is that we, all of us, we have the power to change this. So again, why I'm wanting to talk about this today. I want to empower ourselves, empower you all to know that we can change and normalize conversations around stigma, around mental health and mood. It's important to know the signs of what is, I don't want to call it not normal, because again, this is a normal part of the human experience, but know the signs of when, of depression, of anxiety, of caregiver burnout.

When it's time to really address this, that this is not sustainable, that something needs, something’s not good here. And we need to manage this a little bit better. So with depression, we can see this with frequent crying just general sadness, maybe not finding joy in the same way that you used to, a big sign for us is when you're experiencing decreased pleasure in previously enjoyed activities. Of course, we always have to look out for thoughts of hurting yourself or hurting somebody else. Hopelessness and worthlessness is a big part of this as well, because we want you to still feel worth and value and productivity in your life. We want you to still find hope, even if that means reframing what hope means for you. So looking for those signs of depression in yourself, or in somebody else. With anxiety, I mean, everyone experiences depression and anxiety sometimes, but what we're really looking for is very much preoccupation and worrying or negative thoughts.

Maybe they're causing you're causing sleeplessness. You can't even relax at night because there's just like this mental chewing gum, this rumination of all the things that you have to do, or that's worrying you. And it's hard to move past that. Of course, looking for situations where you have this sense of panic and that can show up very physically for a lot of people, are you avoiding certain situations or settings because they caused this anxiety or panic or increased stress, and then just general sense of fear all of the time. All of that is not good. It's not normal. You know, if these are signs that we really need to do something differently here so that you can, you can relax that you can find joy. Also knowing the signs for, you know, you care partners out there of caregiver, care partner, burnout, or a burden to the point where, you know, all these situations are going to have difficult feelings.

We're going to have stress involved. But when you hit this point of just significant exhaustion, not being able to enjoy yourself, I have a lot of care partners share that when they're, they become very short tempered with other people, and that's not normally in their nature, that can be a sign that they're hitting that burnout kind of wall. Of course not attending to your own physical health. Like when your life can seem to revolve around Parkinson's and somebody else's need to exercise and take their medications on time and go to appointments. Are you doing that for yourself too? Thinking back to like, when's the last time I saw my doctor or am I missing my medications, or have I been having some physical challenges that I'm really not attending to right now? Anger and resentment, all of these feelings are normal, but when you're feeling a lot of resentment of like, that's so focused on someone that it's hurting your relationship with them or your feeling towards them, that's again, that's not, that's not great. And that's something that is a sign of, we need to change the situation or maybe get a little bit more support or step away from this role so that you can attend to your mental wellbeing through the experience of caring for someone with Parkinson's disease.

All of this takes an incredible amount of intention and self-awareness, and checking in with yourself just as you would be checking in with somebody else. So you can ask yourself questions, like, how am I feeling, but not on a surface level? Like, how am I really feeling? And what does that mean for me? What are my triggers and how can I better manage those triggers or maybe step away from those situations that are triggering for me, thinking through and knowing it's okay to think through what is the most stressful aspect of caring for and about somebody with Parkinson's disease, but also knowing that you can ask yourself sort of the flip side of that, of what's the most rewarding aspect and knowing it's okay to hold space for those seemingly opposite feelings and perspectives about the Parkinson's experience, ask yourself what are the three things or more than three things, but in a minimum three things that bring me the most joy, or are there things that used to bring me joy that maybe I need to get back to a little bit. Also asking yourself a part of my mental well wellbeing that I need to pay more attention to is what, fill in the blank there.

And once you answer that, what do I need in order to make that happen? And maybe that just means one small change in my life that I can make in order to make that happen. It doesn't have to be huge or earth shattering. It could just be one small change that I make. But when you ask yourself these questions really listen to yourself and really be honest with yourself in these answers. Make a plan for yourself for how you can be more intentional about addressing your mood and mental wellbeing, gather support through that journey, through that process, just as you're checking in with yourself, ask somebody else if they can check in with you too. I have, this actually just came up in a conversation yesterday. I have a patient and her husband who tell me that they, I think it's every Friday, it's once a week, they have a special sit-down time where there's no screens, there's no TV, it's just focused on each other.

And they told me they always make eye contact during this conversation where they ask each other, how are you doing? And what are you needing right now? And I thought, that's so smart, building into your routine time for you to check in with yourself and for somebody else to check in with you and for you to check in with them, find ways to manage your stress. I know that's kind of a loaded thought and it could mean whatever it means for you. A lot of people have been sharing with me, especially recently this means getting outside, having a change of scenery, stepping away from Parkinson's and from that role and from your house and these four walls for just a little bit, so you can kind of recharge and come back to it, make sure that you're connecting with other people. This has been, this has looked differently, this has been a little bit harder over the last almost two years, right?

A lot of people shared, they feel isolated. So, you know, finding ways that you can still connect with people and maybe do that safely and doing that in ways that you're comfortable with. Support groups are really great way to connect with other people who can perhaps relate to your experience, or at least to some extent where they can validate a little bit about what you're going through, tell your healthcare provider if you're having mood and mental wellbeing challenges, especially if they don't ask you, if it's something that is priority for you and it's not coming up naturally, you have the power to reach out to them to say, hey, this is something that I'm struggling with, that I'd really like your help with. And that also means seeking professional help.

Again, a lot of this is wrapped up in stigma of if I have to talk to somebody about my feelings, it means that something's wrong with me, but that's not true. Sometimes it's just really helpful to process an experience with an unbiased person. I have so many people who tell me I don't need that because I have my sister or my best friend or whoever to talk to. And that's great. I'm glad that they're part of your support network, but this is different from that. It's different from having a friendly sounding board at someone who's trained in mental health, who can really break down that experience and give unbiased insight and focus on coping strategies around that. When you look into mental health providers, and I did put a resource up here, which is called psychology today, on that website, but just generally, it's hard to find someone who is specially trained in Parkinson's disease.

That is something a lot of my folks want to look for, but they're kind of few and far between. So my recommendation is to look for providers who say they specialize in things like coping with chronic illness, coping with medical diagnosis, caregiving, aging, grief, anxiety, and depression, because at the themes that we see across all of those are you know, going to be despite Parkinson's disease or a different diagnosis. But if that's what they're specialized in, all of those things I just mentioned, chronic illness, caregiving. They should be able to process what's at the heart of what you're needing to talk to with them.

I told you all, this was a topic in my support group recently, and I took notes as they were sharing about what mental health means for them. And here's what they shared with me. They, one person very flat out was like medications and therapy. This person has struggled with anxiety for a very long time. And she said, and I quoted her you know, I wrote down what she said, “people with Parkinson's don't understand what it's like to live with Parkinson's, people without anxiety, don't understand what it's like to live with anxiety and what she needs for that is a combination of mental health therapy and pharmacological treatment, just as people with Parkinson's need physical therapy and carbidopa levodopa,” she addresses her anxiety from that same approach. And I think that can go for care partners as well. I also had someone in that support group share, “it means finding time away from Parkinson's, from not talking about Parkinson's or not thinking about Parkinson's for just a little bit.”

I brought up how a lot of people have been sharing how they need to get out of the house. They need to connect with nature. They need to take walks. That definitely came up in my support group. I had someone in my group say it means learning how to breathe. And I really liked that. I mean, being intentional about connecting with your body and taking a moment and kind of grounding yourself and breathing in some fresh air. Chatting with a friend was something that a care partner shared. And then someone else shared and this led to a very rich conversation, having a safe space, to talk about it, to talk about Parkinson's, to talk about mood and mental wellbeing, instead of trying to fix it. A lot of people want to try to fix it when you talk to them about tough things. And that brings me to a little video, just three minutes that I want to share with you all. And I'll kind of talk about it after, and hopefully this works. Everyone cross your fingers.

Hopefully you can hear it.

So what is empathy and why is it very different than sympathy? Empathy fuels connection, sympathy drives disconnection. Empathy. It's very interesting. Theresa Wiseman is a nursing scholar who studied professions, very diverse professions, where empathy is relevant and came up with four qualities of empathy, perspective taking, the ability to take the perspective of another person or recognize their perspective as their truth. Staying out of judgment, not easy when you enjoy it as much as most of us do, recognizing emotion in other people and then communicating that. Empathy is feeling with people. And to me, I always think of empathy as this kind of sacred space when someone's kind of in a deep hole and they shout out from the bottom and they say, I'm stuck, it's dark, I'm overwhelmed. And then we look, and we say, hey, and you climb down, I know what it's like down here. And you're not alone.

Sympathy is, Ooh, it's bad. Unh huh. No, you want a sandwich? Empathy is a choice and it's a vulnerable choice because in order to connect with you, I have to connect with something in myself that knows that feeling. Rarely, if ever does an empathic response begin with, at least. Yeah. And we do it all the time because you know what? Someone just shared something with us that's incredibly painful and we're trying to silver lining it. I don't think that's a verb, but I'm using it as one. We're trying to put the silver lining around it. So I had a miscarriage, oh, at least, you know, you can get pregnant. I think my marriage is falling apart. At least you have a marriage, John's getting kicked out of school. At least Sarah is an A student. But one of the things we do sometimes in the face of very difficult conversations is we try to make things better. If I share something with you that's very difficult. I'd rather you say, I don't even know what to say right now. I'm just so glad you told me because the truth is rarely can a response make something better. What makes something better is connection.

I'm going to try to make sure that doesn't start again. So I share that video, which is by Brené Brown, by the way, she is a social, she has her PhD in social work and she's in Texas. And she focuses most of her research around vulnerability and shame and finding strength through vulnerability. And I share that about empathy because I find that many people don't talk about hard stuff. And aren't honest with themselves and others, like when they're asked, how are you? Because they're afraid of making somebody else uncomfortable or feeling, fearing the reaction that they're going to be pitied or seeming ungrateful for the good things that they have or getting a reaction like someone trying to fix it or make it okay. And I share that because I want us to recognize it's okay to ask for empathy. It's different than asking for sympathy. Empathy takes practice. It's meeting other people where they are and it's meeting ourselves where we are.

I think all of this, what we're talking about today takes, like I said, self-awareness, but it also takes self-advocacy. So again, defining what mental wellbeing means for you. It's trying to change conversations around mood and mental health. It's allowing yourself the permission to describe your needs and also your boundaries. So saying here's how you can help support me.

Or when someone reacts with something or offers a certain kind of help, saying, you know, that's actually really not what I'm needing right now. Here's what I'm needing right now. So a lot of this takes courage. It takes permission to feel all the feelings that's going to come up during the Parkinson's journey, whether that's feeling overwhelmed or sad or anxious or annoyed or angry, existential, but also permission to feel hopeful, to feel joyful, to feel grateful, to feel opposing emotions at the same time, knowing that it's okay to feel vulnerable and to reframe that vulnerability, finding strength through that vulnerability. Recognizing your own capacity through this, each of us has capacity for change, for growth, for empowerment, and also showing up for yourself just as you're showing up for your person with Parkinson's disease, it's important to show up for ourselves.

I was, I have a three-year-old son and I was recently reading him. I know this is a little bit a little bit different, but I was recently reading him the book, “Oh The Places You'll Go,” by Dr. Seuss. And I was reading this part of it. And I was like, this is a really good analogy for Parkinson's disease and for the care partner experience. So I'm going to read that to you now. I'm afraid that sometimes you'll play lonely games, too. Games you can't win because you'll play against you. All alone, whether you like it or not alone will be something you'll be quite a lot. And when you're alone, there's a very good chance you'll meet things that scare you right out of your pants. There are some down the road between hither and Yon that can scare you so much you won't want to go on, but on, you will go, though the weather be foul. On you will go though your enemies prowl. On you will go though the hacking cracks howl (hacking cracks are Parkinson's disease), onward up many a frightening creek though your arms may get sore and your sneakers are weak, on you will hike and I know you'll hike far and face up to your problems, whatever they are. You'll get mixed up of course, as you already know, you'll get mixed up with many strange birds as you go. So be sure when you step, step with great care and great tact, and remember that life's a great balancing act. Just never forget to be dexterous and deft and never mix up your right foot with your left. And will you succeed? Yes, you will succeed. 98 and three quarters percent guaranteed. You'll move mountains. So be your name Boxbum or Bixby or Bray or Mordecai Ali van Allen O'shea. You're off to great places. Today is your day. Your mountain is waiting. So get on your way. Thank you all so much. I think we have a little bit of time for some discussion and questions. I'll stop sharing my screen.

Polly Dawkins:

Jessica. I'm smiling so much. That was tremendous. We do have some questions from the audience. Some of them are pretty hard and we may not be able to dive into them with the time we have left, but let me start with one question that somebody asks. She says, I'm a really private person and I will not normally share my trials with others. How could a support group helped me?

Jessica Shurer:

Oh, that is a good question. And I think so many of us are sort of taught very early on that we don't share the tough stuff or that we're, you know, to keep a lot of that close to us and to be private. And I think that's fine. Everyone is just so different in how they approach this, but you know, support groups, I always recommend trying one or two. You don't have to go into it sharing your whole life story. I have a lot of people who will just say to me, is it okay if I'm just kind of a quiet observer or listener for this first time? And yes, you know, you can go in just to hear the kinds of things that other people are sharing and checking in with yourself. Is this something that I, that is resonating with me that’s helpful for me?

Do I feel safe or want to share? There's no obligation when you go into a support group to share. I think that just knowing that you're not alone in this experience, that there are other people out there in the world who might be able to relate to you or share sometimes very tangible pieces of advice is just very validating for a lot of people. Now, of course, if every single person went into a support group being just a listener, then nobody would end up sharing in it. But it's, you know, there are people who share a whole lot and there are people who kind of just sit back and listen and all of that’s okay.

Polly Dawkins:
Is your support group today virtual or is it in person?

Jessica Shurer:

It's been virtual since March, 2020. And with having left UNC, I am also continuing to run my local support group until my replacement starts next month. But you know, eventually we'd like to go back to at least somewhat in person, whatever that means. But I think that it's a good point to talk about that too, because with virtual support groups, there can be a lot, it's a lot easier to practice anonymity in that, you know, you don't have to have your video on, you don't have to share your full name in that. It's a little bit, you're sharing space with others, but not in the same physical space so you can, it's a little bit easier to just be like, I'm gonna just sit back and listen right now.

Polly Dawkins:
Somebody asks if your support group is open to anybody in this video here?

Jessica Shurer:

You know, it's funny, I guess it technically is because it's virtual. I've had three people since the pandemic hit who moved out of state and two people in California and someone in Washington who keep, who are still coming because they can. So I guess it technically is, but it's also technically the Chapel Hill Parkinson's support group. So most people are in the area.

Polly Dawkins:

Yeah. Another question, somebody asked, if you could define from your slide, the phrase pathologizing the human experience. Could you explain that just a little bit more? What that means?

Jessica Shurer:

Sure. I mean, it's complicated, right? But so much of what we deal with on a day-to-day basis of getting a diagnosis of a physical condition or these emotions that can come up, all of that, you know, again, we're human, all of it's normal. It's normal to live, it's normal to die. I know that's a hard thing to talk about. Sometimes it's normal to get sick. It's normal to feel fear. All these things that sometimes we don't like to talk about because it's like, you know, that's too tough or that's abnormal. And you know, again, a lot of it's embedded in stigma. And so people don't like to, it's so complicated, I'm not explaining this well at all and I, but, when someone is struggling with something like depression or anxiety, or when a new diagnosis comes into our life, like Parkinson's disease, there's this fear of people are gonna look at me like something's wrong with me.

And then there's an internalization of that of something must be wrong with me because I have this diagnosis, or I'm having this experience when at the end of the day, you know, it'd be weird to go through your life just with nothing, with no vulnerability, with no health conditions with, it's okay to recognize that that's normal. We don't want to treat things that are part of the human experience as, ooh, my video just changed, what just has happened, I'm not explaining those well, it's not all, we just, we can't address things without first saying that this is okay. I did not explain that well. Did I?

Polly Dawkins:

I think that's all right. And for everybody who's listening in, if we can't get to your questions with Jessica, we will follow up in our follow-up email with some, a deeper dive into some of these topics. And so don't worry about not getting your questions answered here. And we have time for one more question. And do you have a recommendation for somebody who their person with Parkinson's has moderate dementia and the care partner is extremely depressed and isolated and needing help, needing counseling, needing to get away. Do you have like one recommendation of where that person can start?

Jessica Shurer:

Where that person can start? Yeah, well, I'm biased because I'm a social worker, but I think if you have a social worker at your clinic, or you can find one at like a local department on aging or something like that. It's real, they're really helpful at connecting you to resources. So whether that is bringing in a little bit of respite care so that you can step away and attend to your own needs or connecting you with mental health professionals in your community, who they know have been recommended by other people who might specialize in things like caregiving and depression and coping with illness. Social workers are really good resources, but of course, you know, organizations like Davis Phinney Foundation, Parkinson's Foundation has a helpline too. I mean, calling these organizations that understand Parkinson's disease and seeing if they know resources in your community that they can connect you to, I think is really, really important. And of course your local support groups, it's really helpful to reach out to other people, like I said, who can relate, but where you can actually say, I'm struggling with this thing. Do you have any recommendations for a mental health professional or an in-home care company or something that's worked well for you that I can reach out to?

Polly Dawkins:
Thank you for that, Jessica. Thank you. Oh, go ahead. Do you have one more thing?

Jessica Shurer:
I was going to say, I didn't know you couldn't see the book when I was reading it.

Polly Dawkins:
I could see you, but you were a smaller screen.

Jessica Shurer:

I just want to show everybody, cause I kinda zoomed in on this. I said that the hack and cracks are my analogy for Parkinson's and I just want to make sure everyone can see it.

Polly Dawkins: That's great.

Jessica Shurer:
Thank you for having me.

Polly Dawkins:

Yeah. For those of you. who would like to know more from Jessica, she's got a terrific article she's written in the Every Victory Counts for care partners manual. We gave information. We'll send information about how you can order a copy for yourself. Jessica, thank you so much for being here today. I'm going to say goodbye for now and welcome our next presenters to the stage. Thank you so much, Jessica.

Jessica Shurer:

Thank you for having me. Thank you all for showing up for yourselves today and I hope you have a great rest of your conference.

To download the presentation slides for "Mood and Mental Health Strategies For Care Partners," click here

Care Partner Panel

To download the audio for "Care Partner Panel," click here.

You can read the transcript below. To download the transcript for "Care Partner Panel," click here.

Polly Dawkins (Executive Director, Davis Phinney Foundation):

And now it's my pleasure to welcome our care partner panel to the stage. So for those of you who are joining us on the panel, please turn on your videos. We've got a wonderful group of individuals who have been care partners, are care partners, and to lead us in a bit of a Q and A. Again, if you've got questions for our folks here they will answer them. I want to start off by asking our panelists first to introduce yourself and tell us where you're calling in from. And then tell us a little bit about what your care partner role has been or was. So I'm going to go across my screen as I see you all, so Bud Rockhill. You're the first person I see on my screen. Would you introduce yourself?

Bud Rockhill:

Morning Polly, morning, everybody. I'm Bud Rockhill. I'm in Golden, Colorado, and I was a long distance care partner for my mom who had Parkinson's for 20 years.

Polly Dawkins:
Thank you. And John Paul Lederach.

John Paul Lederach:

Yeah. Hi everybody. Hi Polly. I'm calling in from Tucson. My name's John Paul Lederach. And I'm a care partner for my wife, Wendy whose going into about the 14th year, since diagnosis.

Polly Dawkins:
Good to see you, Angela. Welcome.

Angela Robb:

Hi Polly good morning. I'm Angela Robb. I live in Fairfax, Virginia, and I am a care partner for my husband, Carl, who has young onset Parkinson's for over 30 years. And we will celebrate our 25th wedding anniversary at the end of the month.

Polly Dawkins: Congratulations, Barb.

Barb Ankenman:

Good morning. I am Barb Ankenman and I'm calling in from Burlington, Kentucky. That's Northern Kentucky outside Cincinnati. I'm the care partner to my husband Dale. He was diagnosed 20 years ago at the age of 46. He had deep brain stimulation surgery about 11 years ago and we're get through it all.

Polly Dawkins:
Thanks for being here. MaryGail.

MaryGail Anderson:

Hey, I’m MaryGail Anderson, just a little North of Nashville, Tennessee, as if you couldn't tell with the accent. I actually had the privilege of being a care partner for my father for about 11 years, nine years, a little closer than not.

Polly Dawkins:

Wonderful. Well thank you all for being here today. Today's going to be a conversation amongst ourselves and for those of you in the audience, feel free to ask our panelists questions. To start off, I thought we'd dig into this, this topic that Jessica also spoke about is how do you, especially for those of you who are spouses, how do you maintain your identity amidst caregiving, and go ahead and take yourself off mute and just let's have a conversation here.

Barb Ankenman:

This is Barb. I find it just so important that I have a purpose and a relevancy that's not connected to Parkinson's whatsoever and the way I've been able to accomplish that is through volunteering. And I find volunteering gives me a chance of social interaction of helping others and really focuses me away from Parkinson's or any of our challenges that we face. A lot of times this is something I can also do in conjunction with my husband. And that also gives him that purpose, that relevancy away from Parkinson's also.

Polly Dawkins:

Yeah. And Barb and I are going to really dive into that topic this afternoon and a breakout session called how to step away from Parkinson's. And we're going to have a conversation and invite you all to talk a bit about strategies that you all use to step away from the day-to-day Parkinson's. Angela or John Paul do you have thoughts on maintaining your own identity?

Angela Robb:
Go ahead John Paul.

John Paul Lederach:

Okay. Thanks. I wasn't sure, I didn't wanna interrupt you. I, you know, I think there are elements that are natural to particular life place that we're at. I continue to work. I'm traveling a good bit less. We used to travel together, but that's been more impacted, but my work connects me to a pretty wide global community where what I'm doing doesn't connect necessarily, you know, directly to Parkinson's. I think the harder piece is more the close friendships and the intimate you know circle friends that we have where Parkinson's has impacted to some degree, the amount of hosting and other things that Wendy would have done very naturally over the years. And so how to find ways that the constant question is not how's Wendy doing, but that you've got conversations that don't start with that question, always that don't have to be exclusively about what's happening in that.

And that's taken some intentionality and especially where we're navigating kind of in life cycles, in our, you know, just proximate to a full retirement and looking at locations where we're going to plan to be more permanently, that opens up the possibility for new friends, but it also makes it requires you to be more intentional about reaching out. And I've had to do that independent of whether we do it together. Now as a couple, we always did a lot of stuff together. So it's not, it's kind of not an easy dance in some ways I'll be honest, because but you have to be, I think find ways that you just say, you know, I need this I'm going to reach out, I'm going to go have coffee with somebody I haven't met yet. We're going to try and make that maybe once a month or something and that's okay. And those things don't have to circle exclusively around how significant Parkinson's actually is in our life.

Polly Dawkins:
Angela, where are you gonna comment?

Angela Robb:

I was gonna chime in a little bit with what John Paul said. You know, yeah, it does take a lot of intention to make sure that I have a separation. I'm very intertwined with the Parkinson's community and my husband and I work together. We live together and have a, you know, our marriage together. So I really enjoy those times where I can get together with my friends and go have coffee. It's been difficult with COVID. I enjoyed going to a gym at least four or five times a week, giving myself an hour away from the phone, the internet, and the husband. But you know, honestly, we've made it work by getting out more together and although I've missed my friends, you know, I still feel that I do have a separate identity. I guess I'm just more intertwined and I'm okay with that. Because he is my partner and my best friend.

Polly Dawkins:

That's lovely. I want to ask a question from the audience, and this is for all five of you. A person with Parkinson's, who's watching, asks the question, what can the person with Parkinson's do to make your roles easier or ease the burden on you?

Angela Robb:

I guess I'll go Polly. I'm the only one un-muted. So I'm dipping my toe in. Communication really. The more that we communicate with each other and talk about how both of ourselves are doing, I think Jessica made a great point. I heard her comment where a couple actually sets time aside to sit down and have no devices and have an eye-to-eye contact with each other. I think that that's a fabulous suggestion that I actually will do myself, but communication really is the key. The more that we're in touch with each other and what's happening, I think makes it easier for me to make decisions, to check with him, to, you know, figure out our direction and, you know, can we go out and do that errand right now or do we wait a little bit, but communication, I think is really the key for us.

Barb Ankenman:

I would agree Angela, that communication is big. And a part of that also is for the person with Parkinson's to be encouraging and supportive of other parts of your life. And to encourage that, and also to recognize that as Jessica had said before it’s a two-way street to recognize that it’s tough for you too, and to give you permission to not always feel great about things either.

MaryGail Anderson:

Barb, that's what I was going to touch on, was just gonna say, if there's something that could have been given to me by my father, it would be grace, because it was definitely a learning curve. And, you know, I didn't know how he felt and unless he was very honest, sorry, something's happening in the background, unless he was very honest with how he felt that day or how medication had made him feel, or, you know, I wouldn't know, because I am not the one who physically had Parkinson's. So I think grace, and then a lot of honesty.

John Paul Lederach:

I’d just concur Polly just a quick note that I have found personally that sometimes it's really the small things that make a difference. So, you know, kind of a simple gratitude practice, just how much it means to me when Wendy says that she appreciates something or that she knows that it's hard and how much she appreciates, I think on her end, a recognition that, you know, a small thing that she did, that was a big accomplishment for the day is recognized. And just to say it, so there's something about gratitude that combines, I don't know what it is, something about recognition and appreciation, but to express it and not to kind of keep silent about it. It has been, I think the places where I've felt the most I guess, combinations of empowered and able to keep going.

Polly Dawkins:
What does your gratitude practice look like if you don't mind sharing?

John Paul Lederach:

Well, I have a whole range of practices, but it's the, in this particular instance, it's been trying better to say the times that I'm grateful for things that were done, knowing how hard those were to get accomplished, whether it was like last night, you know, Wendy cooked a meal and it was, that doesn't always happen depending on the energy of the day. And you know, that that was wow. That was really good. And so it's more, I may come back to this later, but it's more how you are present at a given moment, but to find ways of expressing that and how easy it is to let a thousand of those slide every day that you don't take note of. And that I think is what has been for me at least more about.

Angela Robb:

Yeah, I think John Paul's right. You can get, there are times where I know I get really busy during the day doing things and I'm not full of maybe gratitude is just last on the list, but I do the same thing. I really try to acknowledge as Davis says all the time, the small victories. And I always try to make sure the least, I have an intentional thank you at the end of the day and nighttime to Carl, to thank him for anything that he's done during the day. Cause I think that's important. I will also make a shout out for laughter. We do laugh sometimes at the smallest craziest things. It does make, it makes things easier sometimes. So we try to mark those moments as well.

Polly Dawkins:

Bud, you were a care partner to your mom from a distance. What would have been easier for you or what would have helped you that she could have done from a distance for you to make your job as a care partner a little bit easier?

Bud Rockhill:

I think the only thing there would be the communications and, you know, I think you've touched on it here with the honesty and the communications you know, knowing how she really is feeling and whether it's, how are these drugs doing? Cause I think part of the role from a distance, you know, which is certainly not nearly as complex as the other panelists here you know, is what can you do? And I think it's being an advocate. And so that role, like I have a sister who lives close to where my mom was, and I was the long distance one. So for me, you know, a couple of things were, and this isn't like directly answering your question about what could my mom could have done. Cause I think that starts with the communication piece, but related to that was having the, you know, being very clear on what she wanted.

And so the documentation piece, again, especially from a distance, you know, the power of attorney, medical power of attorney, the HIPAA disclosure, you know, what does she want? And, you know, those conversations are not always natural, but you know, for me, positioning it as all I want to do is fulfill your wishes and make sure that, you know, things are taken care of in the way that you want. And then we were able to do that before things got worse. So I think it was comforting. And then I think this being an advocate piece, so I would fly in for the more important appointments with a neurologist so that she had somebody there taking notes so that I was clear on what was really supposed to happen because sometimes in the moment it can be information overload for the patient. And so, you know, my role there to sort of filter through it and be able to review it with her afterwards.

Okay, this is what he said. And you know, to that your resource manual is really, really helpful for her, planning for appointments and then recording it afterwards and gave her a sense of being involved in her own care and wellbeing so that we walk that fine line between role reversal. And then, you know, I wouldn't call it the gratitude piece, but the being the cheerleader, you know, kind of like what John Paul was just saying is recognizing accomplishments, even from far away, you know, hey, this is what she did in physical therapy today. Or I was able to walk 50 steps instead of 30 steps and just really encouraging that. And it, you know, it was good for our relationship and I think it certainly helped her because the day- to-day existence is pretty challenging.

Polly Dawkins:

Yeah. Both MaryGail and Bud here are children of people with Parkinson's. And I wonder if you all could speak about how do you start to involve other people in the care partner experience that aren't just you as spouses, whether it's your children, if you have children or it's other friends, how do you start to bring in resources so that you, as the primary care partner don't have to do it all?

MaryGail Anderson:

Sorry. For me, I was able to use the contacts that I had through my association with health care. And I just made sure that everyone understood what I was going through with caring for my father. And I was eager and very hungry for all new information because I knew if I had gotten information, then I could deliver it to other people as well, you know, to educate them. So they didn't have to work so hard, but any of the information that I received I had noticed as we got a little more advanced into my dad's disease that I had to really be on top of it. And if I weren't on top of it, then there were a lot of problems, and I was playing catch up at that point. So I think with getting that education and getting the right training involving age, discipline, and health care, for instance like I never even thought that I would need in the beginning speech therapy, occupational therapy you know, physical therapy, that was kind of a given.

And then we had multiple doctor's appointments, started out with a primary care who was at least knowledgeable enough to say, hey, you need senior ology, specifically movement disorder. So, you know, I think getting the right people involved so that I didn't feel like I was so stressed and anxious about what's the next step in the healthcare, was the first step of the health care. And then my dad also had confidence in knowing that, you know, I would go after that information for him and that he would have the right people caring for him. And that also allowed whenever we had that under control, it allowed for me to be able to be with my family, although I would have to be with him a lot and very often, but I could have my family there with me. And I had three daughters, I have three daughters and my husband, but, you know, being able to involve him as much as possible in holidays.

And, you know, if my girls had games, I wanted to be able to take care of him and then go to be with them because you still have a lot of balance in that. So I think, you know, just getting everyone involved that you can so that you have that core group that can help you with care and support. That was the biggest thing. And I think that's a very good key point for this session too, about just being supported and being cheered on, as you all have said, but once we were able to do that, there was good balance and my dad had confidence and that made me feel better about caring for him too.

Polly Dawkins:

Yeah. Thanks, MaryGail. I just really quickly, I want to invite our other panelist to the discussion. Juwairiya, would you say hello and yourself and tell us what your care prtner role was?

Juwairiya Syed:

Absolutely. I'm so sorry for being late. I don't know why I had 12:30, but my father had Parkinson's he passed away this past May from unrelated to Parkinson's, but he was officially diagnosed in 2018. But we suspect his diagnosis should have come a lot earlier. And you know, this was especially the challenge, the biggest challenge with it was not knowing it was Parkinson's for a very long time. And his parents, my father's parents had died when he was quite young. And from what we have heard in the story, we also suspect that his mother also had Parkinson's and I don't know the research, I've done a lot of my own research, my amateur research, but about in terms of having a genetic component for Parkinson's.

But we didn't have a lot of time with him with the diagnosis, but when we first got the diagnosis and even the months leading up to the diagnosis and a month after you know, we did a lot of research, my family and I, and I did a lot of research and we also had limited means, so we weren't rolling in cash as I wish we were for all of us. So we did a lot of research specific to how we can get him resources through Medicare, which is what we qualified for. And that was, that was tough. That was a big challenge. So yeah, I'm looking in the chat communication is a challenge. It was, it was a big one. I mean, he's a, he comes from a very specific generation and demographic of men.

My dad, he came from south Asian men in south Asian community. So therapy wasn't exactly an option. Always. It wasn't always something he was open to, but it was really important for me and my family. If he wasn't willing to do it, we had to figure out how to do it for ourselves, at least. And the biggest thing that was really important to remember is that we're not being selfish in that, right? In setting certain communicative boundaries, even when he's getting really upset and he's frustrated, or he hasn't, you know, properly taken his medication for his day on the right time. And the time that it takes to, those months where we're figuring out which medication dosage works and how much works and how it affects his mood to remember, to not take it personally for ourselves. And that was a big one that was really important for us in our family. And he did also have towards the end Parkinson's with dementia which, you know, can only make communication a little bit more difficult and challenging. So I mean, I'll try to offer as much of that insight on that as I can.

Polly Dawkins:

That's a question that is coming up quite a bit in the chat. And some of you have had experience, I know MaryGail, particularly MaryGail is also a care partner to her mom who has Alzheimer's. So for those of you who have had experience with a person with Parkinson's with, or I guess Alzheimer's for MaryGail with dementia, how do you, how can a care partner navigate the journey with somebody who has Parkinson's disease dementia, as well as all of the other complications of Parkinson's?

Juwairiya Syed:

Yeah, I'm just going to jump in on this one. The first, and I think the most important thing for us as a family, especially because my father, the dynamic was that he was the head of the family, logistics, putting, you know, the communication and emotional side of the conversation to the side for a second. The logistics of getting paperwork in order was really, really, really important and helpful, getting, and it's really tough because the tests and the diagnosis tests for Parkinson's patients in general is difficult along with the dementia part added is also tough, but getting that diagnosis on paper from a medical professional, from a doctor, getting those tests done, and then getting, you know, medical power of attorney, legal power of attorney, all of those documents in line, the minute you suspect that there's dementia, it is so key and clutch and really important for having a smooth journey. So that is something that was really important for us and a big hurdle we needed to get done first.

Polly Dawkins:

Yeah. And, Bud has written a whole piece in our, Every Victory Counts manual about getting, essentially getting your ducks in a row and what you need to do to be prepared well before you need it, Bud, do you have any thoughts on that? And we're gonna have a breakout session this afternoon specifically on this topic.

Bud Rockhill:

No, I think I mentioned it before, but to that comment just made, I certainly would not, I think you should just do it period, like when people are in good health, if possible, but in this case, given the potential progression from Parkinson's to dementia like do it, and I don’t mean this in just Parkinson's, but to do it when it's Parkinson's because the dementia piece adds a whole different level of complexity to it. And so, and again, you know, the conversation, which is not a natural conversation is just about, I wanna make sure, you know, be the kid, you know, I want to make sure I'm doing things the way you want them done. And so it's not like trying to position it as well when something bad happens, it's really just, you know, being a faithful implementer of what the person wants. And so it, actually, we had some really good conversations about it, and it set the stage. Hey Polly, are we going to come back to the facilities question? Because somebody just, oh, you know what? It came up a minute ago on the timeliness of medication and there's a whole different challenge if somebody’s in a facility. So if that comes back, I just...

Polly Dawkins:

Yeah, let's circle back to that. I've got a chat document over here. I'm keeping track of those. So let's come back to that. I wanted to, you know, you talk about making decisions and making tough decisions. I want to ask the folks here who are spouses of a person with Parkinson's about that partnership in making decisions and how do you maintain a partnership with easy decisions and then with hard decisions? Do you have any experience or thoughts on that, John Paul or Angela or Barb?

Angela Robb:

Well I just put it in the chat Polly, but we just lost a couple of people in our lives in the last few months that were really close to us. And we kind of saw some of the decisions that were made. We weren't the ones making the decisions, but we were kind of to a step or two back from the people who were, and it kind of elevated that issue. So we've had a lot of conversations, especially as I put in the chat we don't have children, so we really do need to step up our game in specifying, you know, what kind of measures do we want to have taken? And then how do we proceed with that? And I think it's extremely important. And you know, I think during COVID it kind of came up and then we put it aside, but now it's back in the forefront.

So yeah, making that time, I think is vitally important and although we communicate all the time for everything else, you know, it just, once again, sitting down being quiet and with paper and trying to make sure that we both know what the other person wants. So, yeah. And I also feel additional responsibility to make sure that, you know, there's some connections for care that he might need if I were to pre, if there is a serious health issue on my part, you know, is there people in place that would help him initially to get through the daily activities that I probably, that I cover right now. So.

John Paul Lederach:

I don't know that I have brilliant insight on this because it's something that I struggled a lot with. Let me just put it confessionally. This is hard because in Wendy's case there, you know, obviously there's some cognitive declines, it's harder to get words out, sometimes, put thoughts together to concentrate on certain things, but it's not at that end where it's headed into, you know, any kind of dementia. So you're in this kind of challenging gray area and it's like emergent learning. And the hardest things are actually, I don't, it's not easy to know to distinguish between small and big decisions. It's not easy to know when I've overstepped and taken away the opportunity for her to continue to do something that could have been done and just because it'd be quicker and easier, I, you know, moved ahead and did it compared to like really big ones, like where are we going to live?

And when are we going to retire? You know, me in particular, Wendy's done it for a long ways back, but those things are not conversations that are like, once it's over, you just keep you circle back around them quite often. And I find it to be something that we're still learning a lot about. I think obviously communication is important, but I think behind the communication, what becomes significant is to have enough presence of mind to recognize when something has been under or overstepped. And that that can then be talked about with greater specificity because that gray area just keeps everything kind of ambiguous as to how you might want to take it on. And I think expanding into the children, it's also a kind of an intriguing, ongoing process of how to engage the people that are really significant in your life.

In our case, our children and grandchildren, how, and when to have those conversations, when to have them you know, it comes up naturally in one-to-one walks that you might have with one of your kids. And then there's questions of whether you've overstepped in what you've said, and, or, you know, there's a whole range of things and what you try to hold, you know, having the opportunity to ask questions about wider family responsibility is not easy because you know, lives are busy with young kids and whatnot. So I find it's really, you know a learning curve kind of assumes that we have this notion that we're going to arrive at the mountain top of clarity. And I don't think that there is such thing as a mountain path of clarity. It's like every day you're learning. And so when I figure out a way to be patient with that learning and to recognize that you're not going to be perfect is maybe the most important thing that we've figured out. We're going to choose to be ourselves and imperfect with each other but honest.

Angela Robb:

I agree with that, John Paul. Yeah. You have to give yourself, there's no such thing as a perfect answer. And it, yeah. And there are times where I, we both apologize to each other for overstepping each other and I sometimes have this discussion, is that Parkinson's or is it just marriage? I don't know. It might be a marriage, but it could be Parkinson's.

Barb Ankenman:

Yeah. I, that really resonated with me also about the overstepping or under stepping and you know, my husband does not have dementia. He is not at that point. Hopefully won't be, but he has Parkinson's. And I think when we're making decisions and having discussions like that, we have to remember that they're a person, that we don't define them by their Parkinson's. And what they have to say is, is vitally important. I'm not in charge of everything. You know, we're both in everything together and it's not just up to me. So it's treating him with that respect and dignity, he's as valuable as a person and his input is as valuable as mine.

Polly Dawkins:

Such important comments. Yeah. I love the, is this Parkinson's or just marriage, Angela, especially Angela, your husband has had Parkinson's the whole time you've been married. So.

Angela Robb:

Yeah. So I don't know Carl without Parkinson's. So I, you know, and I, you know, I think maybe couples who don't have chronic conditions have the same questions, like, you know, or different chronic conditions, maybe they have the same conversations, but yeah, I just try to approach it sometimes I don't use the filter of Parkinson's. I just say it's husband and wife and chalk it up to that.

Polly Dawkins:

Yeah. I want to ask another question about husband and wife and then let's shift to the topic of care facilities that Bud brought up, cause I know Bud and Mary Gail have some deep experience in that area. One of the questions is for those of you who are spouses, how do you balance your relationship with your person with Parkinson's while, if you have, while raising children or teenagers if you have children, how do you do that?

Barb Ankenman:

Flexibility. I might, my children are young adults now, but certainly when Dale was first diagnosed, they were preteenagers and you know, it's flexibility. And with Parkinson's being so unpredictable, you don't know, I'm sure all of you have experienced, you don't know what each day is going to bring. Some days you can take that three-mile hike through the woods and other days, you know, it's a challenge to get from room to room. You know, I think we both recognize that we are individuals, and we are people and we do have other responsibilities. Life is more than Parkinson's and you just, I'm not sure what else to say on that just being flexible each day.

John Paul Lederach:

Yeah I, a hundred percent agree with that. In fact, one, I think you know, we're at sort of that 14 year location, which means a decade and a half more or less, and you suddenly realize that the time thing is so paradoxical this, the slow progression in some ways, but are you looking at it in reference to decades or you're looking at it in reference to the hour to hour is part of your daily reality? And for me, I think the question of balance really, I mean, the main thing was that I had to realize and it took a few years to get there that the space to really have a daily set of things that were significant to me that brought me joy what the earlier session was talking about. And but also the brought me to, I refer to, I mean, I tend in the direction of walking every morning and evening and I write haiku poetry.

Haiku has been very significant for a lot of reasons. It's a very simple, a very simple practice, but it's very much moment based. It's about what you experienced in a given moment, what you, how nature touches you, how you touch it back in some ways. And those small things had to be daily, because the ability to take note of what the moment meant might be precisely I think what Barb was saying that yesterday, and maybe next week, a bike ride will be possible, today, barely getting out of the bedroom and not feeling like anything is functioning in the digestive system means everything's thrown up completely. And you're, how you're present to that for me was where I had to place it. So I refer to it as my daily dose of vitamin “awe” that I have to find a way for something every day, every minute, every second, to have a capacity to realize that life is ultimately an extraordinary gift. This relationship is the most significant thing in my life and not to lose track that because things are going haywire in one hour that that means the whole week's gone. This is the part that's so weird about it. So I try to figure that out. You know, I try to have practices that are those kinds of things that I do on a daily basis, because you, can't kind of be in a position that it’s going to get better next week, or it's going to get better next year. It's about the fact that you're living with it as it is at this moment. And that's very unpredictable. So how do you live well in unpredictability? That's the challenge.

Polly Dawkins:

I see so many heads nodding here, and I can hear it in the audience as well. Super important. Any other comments before we do a segue into this topic of care facilities, any moments of vitamin “awe” that you want to share?

Angela Robb:

Mindfulness? I think it's a lot John Paul, that it's a lot of mindfulness, you know, meeting each moment as it comes. And that's always an ongoing practice along with patience. And I just read Tina Hahn wrote in his one book about lettuce and he talks about the lettuce issue and how that you know, do you yell at the lettuce if it doesn't grow? No, of course not. You don't yell at the lettuce if it doesn't grow, you try to nurture it and hopefully give it what it needs to grow. And then we need to do the same thing for ourselves and our loved ones in our life too. So that's really resonated with me in the recent days. So.

Juwairiya Syed:

If I could add from a child's perspective or the child, that's, you know, a father with Parkinson's and I had, I have two younger brothers who were teenagers when my father was diagnosed and something that was hard for me as an older sibling. And I know it was a challenge for my mom as well is accepting, I guess, the reality, right? For a teenager and for a child to understand, you know, I'm not going to get a different dad and some days are going to look different and having a parent with a chronic illness is difficult, but it's also our reality. And really kind of helping myself and my siblings, you know, my brothers kind of come to terms with that, you know, their friends have young dads who are healthy and are playing with them out in the park and doing things, and they have to, you know, help their dad walk out of the car and into the car. So creating that space for that conversation for them to be able to voice yeah, it does suck that, you know, you have a dad, that's not a thousand percent mobile every single day, but you know, let's talk about it. Let's have that conversation and help you get to a space where you're not wishing for something that can’t happen and really being in a space of acceptance. So that's something that was helpful, I think, for us to get to.

Polly Dawkins:

Thanks for that. A question from the audience, a person who is curious about care facilities, and especially if you are you don't have children. How do you assess are there care facilities that are particularly good for people with Parkinson's? How do you find a place if you, as the child or as the care partner can't physically take care of your person with Parkinson's, MaryGail, I know you worked with your dad in facilities, and I know Bud, you've worked to find places for your mom. Tell us a little bit about that journey and how you assess and how you find the place.

Bud Rockhill:
MaryGail, why don't you go first, then I’ll jump in unless you want me to go first?

MaryGail Anderson:
Well you go first Bud, you go first.

Bud Rockhill:

I don't know. So this goes back like seven years, I think when we had to make the decision to put my mom into a facility instead of continuing independent living. And so I don't know if there's many that actually specialize in Parkinson's somebody else could weigh in on that. So for us, it was like anything else doing the online research, getting information from like the county aging resource, and then narrowing it down, doing visits, asking the question, do you have experience with residents who have Parkinson's and then doing site visits, meeting people, and then the best technique on that one, just the facility visit was after the official quote tour was over, was hanging out for a little while. And just going up to people randomly, like looking for family members who were visiting somebody who lived there and just saying, hey, excuse me, you know, my mom's thinking of living here.

Could I talk to you for a minute? And that way you got, I found that to be pretty helpful on both sides and you got a lot more color commentary on, you know, the people are great, but the food's terrible or whatever it was. You just, you just sort of got a sense of the feel of the place, you know? So that's the, you know, and we got really lucky, frankly. But I do think asking about their experience with PT or with Parkinson's and then do their physical therapists have experience with people with Parkinson's and just trying to, and then like so many things in life it's a little bit of a gut feel. And how do you feel when you're walking around? You know, and how does the staff seem, do the staff all seem like they hate it there or do they seem like they're, you know, they're pretty good knowing how hard they work. So yeah. And then why don't we flip to MaryGail and then I can come back. I do have some comments just on the once somebody is living there part.

MaryGail Anderson:

Well, so I had the fortune, or I guess misfortune, probably, you know, sometimes you have too much knowledge about something and that can be scary, but having been in the medical field, I knew, you know, what really happened. And I actually left my career at the hospital, and I went and I started a program in a facility because I knew that my dad was a frequent flyer in and out, in and out. And that was a rehab facility. So I knew because he would do rehab. I thought, you know, the only way to really beat ‘em is just to join ‘em. So that's kind of what I looked at that for, but we did take him from home where I did initially care for him at home, and with the balance of trying to have a job and raise my family.

And he lived further away. We just had transitioned. He was not trustworthy. He definitely had an opinion. So, and it's also about meshing those you know, how someone is, you know, like is his personality going to go well with someone else, you know, but going in and just exactly as Bud said, you know, is the staff happy? One of the questions that I asked was, what's your turnover? How much do you pay your people? You know, are they going to be looking for another job? And then I would always, when we would decide, and my dad was definitely a part of that decision-making if he would go in if they didn't offer to let him try their food, we weren't going to go there because food was very important to him. You know, if you didn't have food with your medicine, none of it was going to work anyways.

So it was, it was really the things, those little details, but there were so many of them, and as you progress with his disease, there were even more things so in the beginning, it was about the aesthetics and the people and the food. And then maybe the next time that we had to make a move, it was all of those things and then is there enough staff in this building? You know? And then the next time it was all of that and then, you know, do they understand what Parkinson's is? And so to address what someone had asked about, are there facilities specific or who are very well versed in Parkinson's disease. Through the experiences that we had, I did learn that there are a couple in the country and we're on the east Eastern side of the country. So I know that there were a couple close to me, but it wasn't close enough, and I wasn't going to drop my baby off without being able to make sure he was okay.

So you know, do some good research for that. But the biggest thing that I saw was that the people who were taking care of my dad, they just lacked the education of what is it that he needs. And honestly, once I just told them what he needed and I befriended them and yeah, I would take coffee and say whatever they wanted, I would take it, you know, because they knew I'm going to be there. You gotta be present. And even like with Bud, with having to be far away, you know, from his mom, but that constant, that phone call, they know you're going to call, but also would mix it up. I wouldn't do it the same time every day, because I didn't want the Sunday school answer. I wanted to get what's happening, what's happening right now. But something that I learned and this was after I met Polly and I learned about the Davis Phinney Foundation that Every Victory Counts manual is just, it's like the Bible.

I mean, you take that and you can take somebody who knows absolutely nothing about anyone with Parkinson's and they even taught, you know, it addresses caregiver needs really in the people, they work in those facilities. A lot of times they're burned out. They don't, you know, they're tired. They don't understand how to care for someone and not become just exhausted or you know, you gotta to take care of yourself. And then just the little things and allowing for my dad with Parkinson's allowing for him to still do as much decision making as he wanted to. Do you, Mr. Chrissy, would you like to go from the dining room back to the activity room? Yes. Even whenever he was in a wheelchair, he could peddle himself and if he didn't use it, it was lose it. So it was a lot of encouraging. Let him do it, you know, encourage him to do it. And I think you just have to find people who are willing to be really good cheerleaders, but you gotta keep your eye on them. For sure. Alright Bud.

Polly Dawkins:
And then we gotta close with Bud here.

Bud Rockhill:

I mean that’s it. Three things. One, what you said, the appreciation of staff, they have an unbelievably hard job. And so literally I would bring cookies, I'd bring coffee and bagels. I would do what you said, I'd mix up the time. So I made sure I brought something for the night staff as well as the morning. And so I think it helped the care, but it set the stage too, for me to be able to do what you said about calling. Like, I wasn't the jerk relative calling. I actually cared and I was nice to the staff. Second, it came up earlier. Biggest challenge. I found timeliness of medication because I think for other meds, like an antibiotic, you know, typically you got a two- hour window. This was my biggest thing. The education piece, like, no, I'm sorry, you don't have a two-hour window. You got like maybe 15 minutes.

And so to their credit, you know, after a while and me being nicely assertive you know, they did set up some educational seminars for their staff. Like, you know, this isn't me just being a pain.

This is important. You know? And then I think the third thing is the reality, as I understand, that a lot of living facilities, is the physician on premises is not actually an employee of the facility. It's a contracted service and they frequently will not have a physician who has expertise in Parkinson's. And so finding somebody in the surrounding community who is a movement disorder specialist, and this, I learned through Davis Phinney Foundation, that was a game changer. Once we went from, I don't mean this bad about general neurologists, but when we, once we went from general neurologist to movement disorder specialist, the care level and the prescription, and the willingness to play around with the timing of the meds improve dramatically.

How occupational therapy can help you and your loved one live well

To download the audio for "How Occupational Therapy Can Help You And Your Loved One Live Well," click here.

You can read the transcript below. To download the transcript for "How Occupational Therapy Can Help You And Your Loved One Live Well," click here.

Polly Dawkins (Executive Director, Davis Phinney Foundation):

Amber is going to be leading our next session. She's going to start with an incredibly useful presentation on how occupational therapy can help you and your loved one incorporate therapy into your daily practice. And then she's going to move into a presentation. To start, let me tell you a little bit about Amber. Amber is a graduate of Kent State University, and she's a state licensed in Idaho and nationally board certified in occupational therapy. Her primary goal in this work is to always help her clients live their best, most independent lives, whatever that may look like. Amber, you ready to take it away?

Amber Crawford, COTA/L (Occupational Therapy Assistant, Ada Therapy Services, PLLC): I think so. Can you hear me, okay?

Polly Dawkins: Perfectly.

Amber Crawford:

Okay. All right. So I'm going to start off. I'm going to go ahead and share my screen. So today I was asked to speak thank you so much. First of all this is my very first time giving a presentation. So I get to do it through zoom, which is a little bit different, but I think it might be better maybe because I don't have to actually see everyone staring back at me. But if I do make any mistakes, just go ahead, and laugh. I won't even know it. So again, my name is Amber Crawford. I am a COTA or a certified occupational therapy assistant. Just a little bit about me. I am from Ohio. I graduated from Kent State, as she said, and I work at a small private outpatient occupational therapy clinic.

It's called ADA therapy services and we see people with a range of neurocognitive disorders, a large population of the people that I see have an autism diagnosis. Some adult ADHD, mild cognitive impairment. And I do see people with Parkinson's from time to time. I have a house full, I have an almost nine year old daughter, Josie, my husband and my husband's grandparents actually live with us. So I kind of have a unique position, I guess, to speak on the aging process. And then we also have our little puppy Finn there.

So I got into OT. It was kind of fueled by a combination of growing up in a split family. So I grew up with around a dozen grandparents, all of whom I grew up very close with and some of them, I was there as they crossed over. And I also worked as a nursing assistant for about a decade. And during that time I worked in long-term care, skilled care, acute care, all kinds of different facilities, memory care units. And within that, I really got to have a front seat to not only the aging process, but the aging process as it looks from a care partners point of view. And I just kind of developed a passion for being able to help people carry on with as much of their independence as they could. So I guess we'll kind of get started in, I don't know how many of you are aware, but OT, the most common question that we get is, well, what are you gonna do for me?

I'm too old to have a job, or I just retired. I don't want another job. We actually don't have anything to do with the employment field. However, if you need a job and that's something that's meaningful to you, we are more than happy to help you with making a resume or applying. But what occupational therapy really means is any meaningful activity. So it's very broad. And whenever you put that together with the word therapy, then we get the healing of participation in meaningful activity. So as you can imagine, that kind of spreads out across the board and it's intentionally that way because an OT, we are very aware that every person is going to have different goals and different things are important to them. And if it's not important to you, we're not going to worry about it. Let's talk about what some meaningful activities are.

So if you think to yourself, is it meaningful for you to get up and get dressed every day? Probably. Right. Is it meaningful to you to go fishing on Saturdays? I can tell you, my husband would say yes, doing your laundry, standing up off of the couch, being able to make dinner, going to church. All of these things come in and we see them as this is what makes you functional and OT, we are based off of the idea that in order for a person to live a fulfilled life, that they also need to feel purposeful. So if you think about that in your own life, when do you feel the best? It's usually after you've done something that made you feel some sense of accomplishment or some source of purpose. So today I'm going to cover how OT can be helpful, not only to our patients who have Parkinson's, but also to the loved ones that are taking care them.

Again, I see this as kind of one of the most important parts of my job is helping the people that are taking care of my patients. So we're going to touch on a few different topics. We're going to talk about home evaluations, adaptive equipment and some simple modifications in your environment. Doing some global exercise. So we're going to talk from, you know, physical cognitive standpoint and activity analysis and care partner training. So we will jump right in because I want to make sure that I get all this information to you all. Okay. So we're going to start with home evaluation. So home evaluation is going to probably be one of the first steps in your OT process. This is going to involve an OT coming to your home and just inspecting things that are possible risks. So we're talking about fall risks or you know, just safety hazards or just things that can improve your day-to-day life.

We're looking at things like grab bars here, where to install them the right positioning to install them actually matters. Little things like having a handheld shower can boost someone's independence greatly. Also things like lighting or contrast. So color contrast, if you look at the stairs in this picture, just that difference in the tread and the riser is going to increase our client's visual acuity, which means that there's less of a chance of them tripping and falling. So even little things like that, we might suggest the height of seating. So this one can go both ways. We might suggest a shorter toilet or lower chairs. If you're vertically challenged like myself, it's hard to get off of one of those tall chairs or a tall toilet, my feet dangle, and it's not safe. But then if you're tall, like my Papa, you probably need a taller toilet.

So these are things that we're going to suggest. They're going make our patient's life easier and your life easier. A few other things, non-slip surfaces, gone are the days of the suction cup shower rugs or whatever. We don't like those, those aren't safe. They actually have like different materials that you can put on your tile that safe, that will make a texture in your shower, having a shower bench, furniture layout. We're talking about things as big as a stairlift so that our loved ones can still get up and sleep in their own beds. This is actually one of the places that I find people are most resistant is if they've lived upstairs their whole life. And that's where their bedroom has been. They don't want to move their bedroom. So something like a stair lift, we might recommend, also like lighting changes or little things like these new wireless doorbells, like the ring doorbells.

So when we hear the doorbell, how do we usually react? It's like, right? Like oh, we got to go get that. Well. That's when we're gonna fall, is when we're in those kind of situations where we're trying to move quickly, we're flustered. So with a doorbell like this, you could look and say, oh, it's just my buddy, the Amazon guy. I don't need to get up and rush, or you could even speak to them through the camera and let them know that, you know, I'm coming to the door, go ahead and let yourself in. So just some different kinds of changes. In this home evaluation section, we're talking about things that are a little bit more heavy lifting. So we're going to make these suggestions. However, we're probably going to refer you to a general contractor or a home modification specialist, something like that, to do the installation, because these do have something to do with the structure of your home.

So that part is not really up our alley. But these things, these adaptive equipment options and some environmental modifications, these are things that we can do. These are kind of the smaller, cheaper, a little bit easier to find type things. So with this adaptive equipment I'll tell you, my favorite thing on this page is the the bed cane. So I actually had a patient who had a Parkinson's diagnosis and she was the first person I saw with one of these. And she was getting sucked into her couch and she had one of those really nice soft couches. And once she sat on it, that was it. She wasn't getting back up unless someone helped her. So she discovered one of these bed canes. It was able to go in her couch and it's super light, easy to move.

So if she was embarrassed, when she had guests come over, she could kind of tuck it in the closet. It also has a little bag for your remotes. It helps, you can use that in your bed and it's let my Papa be able to scoot himself up on his own now. So we don't have to help him, you know, every time he kind of slides down. We're also going to be talking about things like these silicone handles. There are so many different options for like utensils and eating things. I could have done a whole segment probably just on kitchen adaptive equipment, but those things are going to try and we're trying to make these people more independent. At the end of the day, all these things that I'm talking about are mostly treatments for the person who has Parkinson's, but this is affecting the person who is the care partner, because they're not having to provide all this care when said person is more independent in an area.

So silicone handles toilet, riser, shower chairs, things like that. All of these things are to increase safety so that the person needs less assistance. The reason that you want to come to OT instead of just ordering all this stuff off of Amazon yourself is there's training involved, not everything here is used as it appears. There are special ways to use a shower chair that pokes out over the edge of your tub. There are safety steps that we can help you with as well as we might have things in our office already that you can kind of try out before you purchase. And we'll have access to catalogs that have further beyond what Amazon offers. Okay, next, we're going to talk about an activity analysis. This is one of my favorite parts of OT.

When we were in college, this was something that we focused on really heavily, and it was, it's just, I don’t know, I think it's probably my type A personality, but I really like breaking things down and finding that one step where something's going wrong. So basically, that's what these activity analyses are. We're going to come in and we're going to say, hey, let's go through a task that you typically could do on your own. And let's see what the holdup is. Where are you getting stuck? So to show you kind of how deep an occupational therapist mind thinks I want you to think to yourselves, I'll give you like 30 or 45 seconds. I want you to think to yourself, how many steps does it take to make a simple glass of chocolate milk? So I'm going to give you a few seconds, but just kind of count counting yourself in your head, see what you can come up with.

Alright, how are we doing? So did anyone get around 25 steps? Probably not, right. That sounds really excessive. Like it's just chocolate milk. Well, we're going to break these things down. I'm going to run through the steps that I came up with for it. Honestly, I probably could have went a little deeper, but for the sake of time, I didn't. So the first step I'm going to think of is, well, I have to get to the kitchen. So I'm either going to have to stand up from a sitting position or from a lying position, right. Then I have to ambulate to the kitchen. Once I'm in the kitchen, I need to be able to open up the cabinet. I need to be able to reach for a glass. I need to be able to grab onto the glass and then lower it without dropping it.

And then let go of it. Walk back over to the refrigerator. Now I'm going to open the refrigerator. I have to reach in, pick up a gallon of milk and maybe my chocolate syrup, turn, walk some more, set these things down. I have to be able to open up a drawer and grasp a hold of a spoon, twist the cap off of the milk, pour it in. However my chocolate syrup or chocolate powder works, whether I have to take the lid off and scoop some or have to squirt it in that's another step. Then I have to be able to get my spoon into the top of the glass, that can be tricky with our tremors, I need to stir until dissolved, I need to be able to carry the glass wherever I'm going. And then I need to be able to drink out of it without dumping it down my shirt.

So it's a lot of steps. And the reason that we don't think about things like picking up a spoon or opening a drawer or taking off a milk cap is because those things are almost like involuntary to us at this point in our lives. Our brain is really, really good at making shortcuts for things that we do a lot. And so then it has this shortcut. And so that you really don't have to think about picking up a spoon or taking the lid off of something. Unfortunately, whenever you have tremors or Parkinson's or several other different diagnoses, those little steps are going to be where you find hang-ups. And that is going to be, why are people quit doing them for themselves? It's well, I can't get the cap off the milk anymore. I keep dropping my spoon. You can ask, those are the reasons that they stopped being functional is because they don't want to be embarrassed by the small steps that they're having trouble with.

So with these activity analyses, what we're going to be doing is we're going to come in and we're going to want to watch them do something that was once an activity that they enjoyed participating in. Maybe it was their responsibility. Maybe your loved one used to be the one who was in charge of feeding the dog every day. And now they get the dog food out of the garage and they're walking through the house with it and they're spilling it everywhere. And it's just easier to do it yourself. Right? OT doesn't like that. We're going to say no, no, no. Let's move the container closer to the dog dish. Let's get a container that has a lid on it so that they can still carry it or better yet. Let's just buy automatic feed, an automatic feeder. So it's nobody's responsibility. Something in the kitchen, if your loved one used to be the cook, and now they're not safe in the kitchen.

Let's figure out why they're not safe in the kitchen. Maybe it's because you don't trust them with a knife, but their tremor, something like this cutting board pictured or a chopper a food processor or something like that. There might even be times where we'll suggest, hey, you know what? Your loved one actually is safe to do all the prep work. Like they're good sitting down chopping. What we're worried about is standing at the stove. So then we'll tell them, hey, why don't you have them do all the prep, work for dinner a couple of days a week. And then you come home and you, you know, you do the cooking or you take over whenever it gets to the point where there's some heat involved.

Okay. So it really is about just adapting and overcoming. That's kind of how OT looks at things. If your loved one used to love gardening, and now they can't get down on their hands and knees and garden anymore. We're going to build raised beds. It's all about relearning ways to do things that you used to be able to do that meant something to you. Now we're going to get into this is the one that nobody really likes to talk about, but it really is important. So exercise, we're going to start out talking about just some physical exercise.

So research shows that a regular physical exercise can improve coordination, strength, balance, gait, tremor, flexibility, strength, and mental health. That's a lot of stuff that you may be able to lower medications for. Right? We are definitely going to encourage physical exercise for anyone that we see. It doesn't matter what the diagnosis is, it's good for everyone. However, for our patients with Parkinson's, there's more to be sought after with this exercise. So I'm not going to go crazy into detail about physical exercise too much just because there are tons and tons and tons of Parkinson's dedicated exercise programs out there. Things on YouTube, physical therapists are really good in this area, and I kind of want to touch more on exercise and the process of exercise improving your mental health and slowing the progression of neurodegeneration. So things like Parkinson's disease, things like dementia, where it is a neurological diagnosis, and it's going to progress, we’re aware of this, right?

So as that's happening, what we want to do is we're going to encourage exercise specifically things that involve getting your heart pumping, increasing your oxygen intake. So aerobic or cardio exercise, which don't worry, we're not talking about treadmills. Or at least I'm not talking about treadmills. But so it's been, there's tons of research that is still going on. And lots of it that has already been done to show that physical exercise and increasing the oxygen level helps our body to engage in neuroplasticity. And so what neuroplasticity is, is it is our nervous system's ability to strengthen and continue to use old circuits within our brain, as well as establish new ones. So this is why maybe you've seen someone who has got a stroke, like my Papa that I was talking about earlier, he had a stroke about 16 months ago.

And because he lives with a therapist, he was immediately doing therapy after a stroke and he's regained back all of his function, his leg still gets heavy. It still gets tired. It's not quite as strong as the other one, but he can still walk independently. And that's because we started those exercises immediately. That's what I suggest to anyone as soon as you find out that you have a Parkinson's diagnosis, get signed up for some kind of program where you're going to be exercising regularly. So if you think about that neuroplasticity, if we're exercising, we're growing those new connections, and we're trying to strengthen the old connections. As the other ones are kind of declining or degenerating, then we're kind of maybe evening it out a little bit, which is how we slow the progression. So it's not necessarily that you're going to improve bounds over what function you're able to do now, but maybe just hold on to what you have currently.

Okay. Another thing, so like I said, no treadmills, you don't even have to lift weights. Any OT will tell you that the best kind of physical exercise is the kind when you're being functional. Again, this is helping my care partners out because now you guys get to give back some responsibility. So like pictured here, one of the best things you could do is have your partner do some laundry. Think about all the movements that are involved in laundry, right? Like reaching and lifting and squatting. And then if my patient has Parkinson's and they're folding, I'm going to encourage them to do these big, exaggerated movements when they're doing those things, because I want them stretching and getting those big movements in that you'll hear suggested in most Parkinson's exercise programs. Even something like, you know, cooking a meal or you know, doing a YouTube exercise class or something like that is an option that we might do.

And then last for this physical exercise is fall recovery. So this is one that maybe we don't necessarily think about too much as an exercise, but unfortunately, people who have Parkinson's fall a lot, it tends to happen to everyone at some point. Falling is bad, it stinks. None of us want to deal with it, but when you fall, can you get back up and can your care partner help you get back up without hurting themselves or also ending up in the same position? So let us come in and teach you some fall recovery. This is an area that PT also can help you with. Just kind of learning those ways to take some of the strain off of you physically. We're gonna move in now to, sorry some cognitive exercises. So something that you know, we typically think of when we think of Parkinson's is a tremor or maybe stooped posture, maybe shuffling, right?

Those are the typical things that come up. Unfortunately there is more 50% or more of people with a Parkinson's diagnosis are eventually going to be diagnosed with mild cognitive impairment or possibly dementia. What mild cognitive impairment means is it's kind of like thinking about your brain shifting down a gear. So it's not one area of the brain necessarily that you're having trouble with. It's kind of global, but it's just like, everything's kind of slowed down a little. So in our clinic we see, everybody we see has something like this. Everyone we see has some kind of cognitive decline of one type or another, and they're pretty surprised to learn that just like your body, you can exercise your brain too, and your brain can improve. Again, that neuroplasticity, right? So if I want to get big biceps I'm not going to go to the gym and walk on a treadmill every day, right?

I'm going to lift some weights on the same thing. If I want to improve my cognitive function, my attention, my memory, my processing speed, my speech, problem-solving and all those kinds of things. You know, I'm probably not just going to play solitaire. I need to do something that's challenging my brain, challenging those other parts. So one of my favorite activities as an OT to do is cook a meal, follow ingredients, follow a recipe. Let's see how we do, we'll start simple. And if you do really good with a simple recipe, move on up to something more complex. You want to be at any kind of exercise. You want to be at a level where you are challenged, but it's not impossible, right? Because if there's no challenge, then you're not really benefiting from it. In our clinic, we do things a lot of like pencil, paper tasks.

We do things on computers. We a lot of different activities, Sudoku, and you know, different puzzle things. Behind me, we have a driving simulator that we have some of our patients use, kind of just a very big realm of things, but always, always, always the best treatments are functional ones. We are right next to a grocery store. So we'll take our patients grocery shopping, practice with a cart. Can you find the aisle that has the crackers? Can you get through the store as efficiently as possible with our grocery list, paying bills, things like that, paying, you know, paying a bill over the phone with a credit card can be pretty challenging sometimes. So maybe I'm going to have, you know, maybe I'm going to have your loved one do that instead of doing paper pencil tasks today, so that I'm challenging those parts and I'm still keeping them, keeping them active and last for our ergonomics in body mechanics.

So this is where we're kind of looking more at the care partners. So the chances are that if you have a loved one with Parkinson's, there's definitely at some point you're going to have to get them out of the car, right? Get them out of bed, get them off of the toilet, something like that. In that process, there's a right way and a wrong way. Whenever I was a nursing assistant, I remember getting really envious that my patients, when they were with their therapist, they only needed one person to get up and like a gait belt. But whenever I was trying to get them out of bed, we had two people and a Walker and a gait belt and, you know, somebody holding the wheelchair and it was always so complicated. And whenever I went to school, that was one of the first things I wanted to learn was like, how do you transfer people without it being some like big situation?

And there are tricks. I'm actually gonna show you. But using things like gait belts so that you are safe, wearing safe footwear, having a clean environment, no clutter taking away those tripping hazards and things like that. And then learning proper lifting techniques and transfers. All of these things are really going to be helpful. You know, if you think about just the fact that what happens, if you get injured, who takes care of them? You know, we were talking, they were talking earlier about, you know, going into a home or something. That's a long process trying to find some respite care. So if you get injured and you have to find respite care quickly, then it's gonna be a difficult situation. So we want to help you avoid that. So we're going to get up and move around a little bit.

First of all, if you are at home and you are a fall risk, if you have any chance that you could be injured or hurt yourself during this, please don't do it. Make sure you have someone next to you or do them seated. I'll try and show you some of them seated. But the first thing I want to talk about is posture. We all have posture problems. I was just looking at pillows this morning for my neck pain. So I want to show you some stretches. These are some things that you could do with your care partner and your loved one, maybe every morning or at lunchtime or something. It should take about three minutes. Each one is about 30 seconds long. So one of the things that is a concern for us when we are talking about people with Parkinson's again, that stooped posture, right?

So we see a lot of this, all right. Our body's natural reaction is to start going inward. So when we get into that state of flection, think about walking, where is it? Where am I looking at? I’m looking at my feet, which that's a no-no, when we walk, we don't look at our feet. We look at our environment around us. So we want to bring that posture back to here. Okay. We want to have our head up and be looking forward. So the first one I'm going to show you is pretty simple. Anybody can do this with, using a wall and again, if you need to stay seated for this, you can do this in a chair. Maybe not quite as effective, but still works. So you're going to stand up against a wall. And the goal is to have your heels, your butt, your shoulder blades, and your head, all touching at the same time and you'll kind of do that wing shape with your shoulder blades, where you're feel like you're trying to pinch something back there. And what this is going to do is it's going to open up your chest and stretch these neck muscles. Now, if you're not already in that stooped posture, this might not seem that difficult. However, you can ask the people that are like this, that's not an easy thing to do. Okay. So now we're going to go through the six stretches for just your neck. I'm actually going to sit down and do these ones.

Okay. So the first one that we're going to do is we are just going to look side to side, and we want good posture through this whole thing. So keep your shoulders square and you're looking forward. And for all of these neck exercises, we're going to hold onto our chest right here, because our bodies have a tendency to kind of cheat a little bit. And if your chest is stretching, then your neck muscles aren't going to be as much. Okay. So we're holding on and we're just going to go side to side. And where you should feel this stretch is right here. So you have this muscle, it's your sternocleidomastoid, I’m sure I butchered that, it is connected to your sternum, your clavicle, and your mastoid process back behind your jaw. When we get this posture, what actually happens is those muscles get trunk up. This is kind of gross, but I think about like like beef jerky, it goes from being like this big to this big, it shrinks. So as you can imagine, you're being held like this. So that's that muscle right here.

Okay. The next one that we're going to do is up and down. So we’re just going to look up and look down as far as you can go, holding down those chest muscles. Again, I'm feeling a lot of stretch here. Not as much in the back of my neck, but a lot in the front. Okay. The third one, you're gonna look a little funny doing these. So the third one, I call it the chicken. So you're going to go forward and back. So this angle you go out and back. You're going to have a few chins when you do this one.

Good. Okay. This one's the hardest one. The video I originally watched, they called it the Janet Jackson. I don't have much rhythm. So you hold onto your chest and you're going to try and just move your head. Okay. This one is actually targeting these muscles that are in the back that connect to the base of your skull. So it's kind of a weird feeling. You actually feel it like on the inside of your scapulars. Okay. This one's my favorite. I really feel this one. So hold onto your chest. And you're gonna put your head to the side, when you're doing this, you're not thinking about bringing your ear to your shoulder, you're thinking about bringing this ear as high as you can. So we're trying to bring it as far up to the ceiling as we can. And then switch. Again, this one, you should feel the side of the neck and you even feel at some in your traps.

Okay. And the last one, again, holding on, we're just going to do a half circle, so you're going to go forwards. Okay. All right. Good. So again, three minutes a day, and that could really increase your loved one's visual acuity, could help your neck pain. Good for everyone. Okay. So I want to show you guys a trick. So those transfers, one of my favorite exercises to have my patients do, who have pretty much any kind of physical diagnosis related to aging at all, is sit to stand practice. So whenever I'm trying to get up from a chair, if I'm leaning back and I have my legs, see if I can kind of tilt this down so you can see my feet.

If I have my feet kind of spread out in front of me, I'm leaning back. I have all the things working against me. Gravity's not going to help me here. I'm not helping my care partner. If they try to pull me from this position, they're gonna hurt themselves. So a few simple steps. First thing is you say, scoot forward, you’re gonna come up to the edge of the chair, not to the point where it's tipping, but to the point where you're just barely on it, you're going to bring your feet back. You want your feet behind your knees. So when I look down, I shouldn't be able to see my toes. I should only see my knees and carpet. Now, if you had a Walker, you had a grab bar or something like that, you would hold on somewhere differently, but we're going to hold on right here.

So we're going to push ourselves up. Now, this is the trick. When you are going to stand up, the only thing you need to do from this position is lean forward. Don't believe me, try. So from here, we're just going to lean forward, put the weight on your toes. Once you get to a certain spot, you'll feel kind of gravity shift you. And then it's really easy to just pop up because all you have to do is use your knees, all you have to do straighten them. So you're going to push yourself forward, nose over toes. And as you get to the point where you can feel gravity shift to your toes, then you're going to straighten your knees. And this works really well whenever you have a gait belt on someone. So you want to put the gait belt right around here, where their center of gravity is at.

Okay. If I'm leaning forward, I'm putting my center of gravity forward and it's pulling my bottom up off of that chair. Okay. So we're using that gravity to our advantage. Okay. And then for cognitive exercises since we're on here I didn't have anything interactive because I can't see you or hear you. So just to give you a few ideas one of my favorite cognitive exercises to do with pretty much everyone is verbal fluency. So I'll just say, name as many breeds of dogs as you can, as many as you can, or maybe I'll say, tell me as many words as you can think of that start with the letter M in one minute, no proper nouns. So no like names or cities. So if I do that and they are spitting them out that same center of my brain processes information when it comes in.

So I'm increasing my processing speed by just saying a bunch of words, really fast. The goal that you want to hit is about 11 words per minute or more. Also I like to do this working at a working memory activity where we'll say, I'm going on a camping trip and I'm bringing a tent. And then my patient will say, I'm going on a camping trip and I'm bringing a tent and a flashlight. Then I'm going to go attend a flashlight and a sleeping bag. And we're going to just keep going back and forth and see how far we can get. Sometimes it's kind of embarrassing cause sometimes my patients can remember better than I can. I try to sneak and take notes in session, but another one is simple item retrieval activities. So say, hey, can you go get me the flour, the cinnamon, and the butter, but I want you to wait three minutes and then go get it. So what you're doing there is you're changing from working memory to short-term memory. So working memory, I just have to hold onto it just for a few seconds. My short-term memory, I'm going to have to grasp it a little longer and then any kind of puzzles or anything like that are going to be good for you. Okay. I'm going to go back to sharing my screen now.

Let's see. There we go. Okay. So moving on, our last topic here is care partner training specifically. So again, I know a lot of this seems like it's geared more towards your loved ones. But our whole goal is making them more independent so that you don't have to do as much for them. So these are my burnout tips. First of all, burnout is a real thing. It happens. I've seen it time and time again, if you don't experience caregiver burnout at some point, then you are some kind of saint. First thing is get help where you can. Take it. When people offer to come and sit with your mom or your husband or whoever, take the help say, sure. Yeah. What day would be good for you to come over for a couple hours or yeah, you can take them to lunch, let other people share some of that responsibility.

And with OT, we can brainstorm. If you don't have family or friends close, you’re by yourself somewhere, you know, we'll come and help you, we'll try and help you figure out some exercise programs or some support groups where they could go without you there. The next one is scheduling time away. So it's important to take breaks from each other. My husband's grandparents have lived with us for 16 months and we were really open with each other about not wanting to, you know, smother each other. And so we take weekend trips a lot. We'll go stay at an Airbnb just like in the next town over even just to have a night away. And then have, you know, his mom, my husband's mom will come and stay with them, or they will have a day where they're set up where I just know that they're going to be safe because our neighbors are home.

So it really is important, you know, weekend trips, that kind of thing. You need to fuel yourself if you don't want to run out of gas. So it is very important for your mental health to keep feeding yourself, you need to fill yourself up. Okay. And then also scheduling time with each other. There are so many parts of caregiving that are un-fun, right? There are a lot of stuff that's not so fun, but don't let that un-fun stuff get in the way of still having some real interactions and some real moments with your loved ones, play board games, watch football together. You know, have a movie night. We do that a lot in my house. We'll find a movie that we think everybody's gonna enjoy and will suggest, hey, let's all just pile on the couch tonight and watch this together.

Have a meal together once a week and just talk about anything other than Parkinson's. Keeping your loved ones as independent as possible. So again, this is OT, this is all that we care about. At some moment in every every client that I see, there's some moment where I tell them my job is simply to make you as independent as possible in whatever it is that you want to do. So if they want to cook again, if they want to help out around the house, again, silly things like tying their shoe or putting a sock on for them will turn into something that you're going to have to do forever. So let's not do it, have an OT come in and teach them how to put their socks on a different way, find a different way to tie your shoes or buy different shoes that you don't have to tie. We want these people to be independent because again, if they have purpose, they're going to feel more fulfilled and you are going to be able to get a little bit more of a break.

So getting organized, this part I'm super type A, so I have a hard time sometimes remembering, like not everyone uses nine or 10 calendars to get through their life. Using things like calendars, having routines, having an alarm set on your phone for things, or for them, keeping alarms set so that they remember to go take meds, while they can take them without help. Having especially the solid morning and evening routines are really helpful because it's just kind of those end caps of the day where like, you know what I know what's going to happen at those times. In the mornings this is our routine every single day. This is just how it goes. I know that it's going to take two hours for them to go from getting ready to, you know, getting out of bed to being ready to go to the doctor's appointment.

And in the evenings, I know that for them to get in bed by 10, they have to start getting themselves ready at 8:30. You know, prepare for that kind of thing. You want to link new things to old routines. So if there's something new that you're trying to, you know, put into your routines, try putting it with something that you don't forget. So for me, it's coffee, like if I have to take a new medicine or do something that I don't typically do in the mornings, I'll just put it with my Keurig because no way that I'm going to forget to drink my coffee. And then planning accordingly. So this is both, you know, like medication-wise, so somebody had mentioned that earlier about being a facility and how important it is. It really is important that medications are scheduled correctly with Parkinson's.

I've had patients where I've went in to get them to exercise for the day and they haven't had their carbidopa yet and or levodopa and they are just stiff, right? It's just not going to happen. And then an hour later I come back after they had their medicine, they're a whole different person, super important. And then also engaging these people in activities outside of you. So things like I know a lot of the YMCAs have Parkinson's exercise groups, having them go to like a delay the disease class or a Parkinson's boxing class a couple of times a week, not only for the benefit of exercise, but the socialization right. With Parkinson's, depression is very common. With isolation, depression is very common. So let's try to balance that out where we can, keep them as social as possible, keep them engaged. And then while you have them at those activities, you can go and you can, you know, get your nails done or get your errands ran.

Okay. And so I saved the best for last here. So self-care, thankfully we do live in a much kinder world in terms of this now. So people are starting to kind of recognize more and more that it's important to take care of yourself. And I always think about on an airplane when they tell you like, you know for your oxygen mask, you have to put your own on before you can take care of somebody else. That applies everywhere. I cannot care for my loved one effectively if I, myself am running ragged. So doing things like journaling, I put my headphones in a lot when I put my headphones in, people tend not to talk to me. So I'll stick my headphones in whenever I cook dinner, that gives me like a half an hour where it's just me and my podcast or my music.

And it's enough to kind of give you that little bit of a reboost. Also, you know, making memories together. So continuing to find ways to enjoy each other. I'm very aware of how difficult it is to travel with someone who has a neurodegenerative diagnosis, but it's still worth it. It's still worth it to take that stuff and do it and let OT help you. We are really, really good at thinking 10 or 12 steps ahead and saying, hey, you know what, if you want to go on a road trip, you totally can, but let's set it up this way so that you have, you know, you're taking extra time to get there, or you are planning out bathroom breaks at cool spots along the way. Okay. And then my final tip here, not so much an OT tip, as just a human tip.

I have had the privilege taking care of a lot of people at the end of their life. My family included, and I can promise you that none, not even one of them is still upset about the time that Thanksgiving dinner was two hours late. Nobody cares about the time that dad helped wrap the Christmas gifts and they look like a dumpster fire under the tree. Nobody cares. That's not the stuff that people are going to hold on to. Take two extra hours to make Thanksgiving dinner so you can spend it together, let them wrap Christmas presents or birthday presents, let them have fun and be a part of things still. Don't take life so seriously, try to find fun where you can. And then if I still have time and they did ask us to give you guys a few action steps. Is that okay?

Polly Dawkins: Absolutely.

Amber Crawford:

Okay. So a couple things real quick. So lids, if you have somebody with Parkinson's put lids on stuff, everything, so they can still carry it around or buy deeper containers for things, play games together. So not just for fun, but for that cognitive stimulation. So we want things that are a little bit challenging, anything that involves strategy. So like playing different card games is really good. Pictionary, Yahtzee, anything like that, where there's a little bit of thought involved. It's going to be great. And then allowing extra time for tasks. So like my Papa really enjoys grocery shopping. And you know, at 86, he's not that fast anymore. And it’s definitely not easier for me to shop with him, but it's meaningful to him. He likes to go, it makes him feel like he had a purpose for the day.

So once a month or so we go grocery shopping together and it, he looks at all the lunch meat and usually takes several hours of our day up but when we go home that day he's fulfilled and he's happy and he has something to talk about. It makes all the difference. And at the grocery store, the carts are really good for providing some balance. I like walking with carts there. It's pretty nice for our people with balance issues. Okay. And then I have two Parkinson's specific things that I wanted to talk to you about. So first one is if you have your partner doing exercises. Again, posture is a problem with our people with Parkinson's. And I will tell you one thing about being a care partner that gets old is repeating yourself. So have them in front of a mirror, have a mirror and tell them you are responsible for checking your posture.

You might have to give them some cues, but now, instead of saying, put your shoulders back, bring your head back, you know, the whole thing. Now you can just say, hey, look in the mirror, do you look like you're sitting up straight and they can kind of self-correct and then last do we all know what freezing is? So it's probably one of the most frustrating parts of Parkinson's. Freezing happens a lot like in a doorway or a threshold of a room. And when this happens, our body just kind of decides to rebel and our brain is saying, hey, let's walk. And our body says, eh, I think I'm just gonna stay here. So when that happens, a good trick for you to do is to tell your person, so typically it'll happen something like this, where they're like mid step and they just get stuck. And so what your job is, is to say, hey, take a step backwards and tell me, what is your mom's middle name? And then go again. So what you're doing is that is a little bit of an interruption between your brain communicating with your body, just hitting the reset button. You're telling your brain stop thinking about that. And then when you come back, it's like you hit the refresh button. I think that that's all that I have for you.

Polly Dawkins:
Thank you for being here today.

Amber Crawford:
Thank you. Thank you so much.

To download presentation slides for  "How Occupational Therapy Can Help You And Your Loved One Live Well," click here.

Occupational Therapy Exercises for your Person with Parkinson's

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Amber Crawford, COTA/L (Occupational Therapy Assistant, Ada Therapy Services, PLLC):

So we're going to get up and move around a little bit. First of all, if you are at home and you are a fall risk, if you have any chance that you could be injured or hurt yourself during this, please don't do it. Make sure you have someone next to you or do them seated. I'll try and show you some of them seated. But the first thing I want to talk about is posture. We all have posture problems. I was just looking at pillows this morning for my neck pain. So I want to show you some stretches. These are some things that you could do with your care partner and your loved one, maybe every morning or at lunchtime or something. It should take about three minutes. Each one is about 30 seconds long. So one of the things that is a concern for us when we are talking about people with Parkinson's again, that stooped posture, right?

So we see a lot of this, all right. Our body's natural reaction is to start going inward. So when we get into that state of flection, think about walking, where is it? Where am I looking at? I’m looking at my feet, which that's a no-no, when we walk, we don't look at our feet. We look at our environment around us. So we want to bring that posture back to here. Okay. We want to have our head up and be looking forward. So the first one I'm going to show you is pretty simple. Anybody can do this with, using a wall and again, if you need to stay seated for this, you can do this in a chair. Maybe not quite as effective, but still works. So you're going to stand up against a wall. And the goal is to have your heels, your butt, your shoulder blades, and your head, all touching at the same time and you'll kind of do that wing shape with your shoulder blades, where you're feel like you're trying to pinch something back there. And what this is going to do is it's going to open up your chest and stretch these neck muscles. Now, if you're not already in that stooped posture, this might not seem that difficult. However, you can ask the people that are like this, that's not an easy thing to do. Okay. So now we're going to go through the six stretches for just your neck. I'm actually going to sit down and do these ones.

Okay. So the first one that we're going to do is we are just going to look side to side, and we want good posture through this whole thing. So keep your shoulders square and you're looking forward. And for all of these neck exercises, we're going to hold onto our chest right here, because our bodies have a tendency to kind of cheat a little bit. And if your chest is stretching, then your neck muscles aren't going to be as much. Okay. So we're holding on and we're just going to go side to side. And where you should feel this stretch is right here. So you have this muscle, it's your sternocleidomastoid, I’m sure I butchered that, it is connected to your sternum, your clavicle, and your mastoid process back behind your jaw. When we get this posture, what actually happens is those muscles get trunk up. This is kind of gross, but I think about like like beef jerky, it goes from being like this big to this big, it shrinks. So as you can imagine, you're being held like this. So that's that muscle right here.

Okay. The next one that we're going to do is up and down. So we’re just going to look up and look down as far as you can go, holding down those chest muscles. Again, I'm feeling a lot of stretch here. Not as much in the back of my neck, but a lot in the front. Okay. The third one, you're gonna look a little funny doing these. So the third one, I call it the chicken. So you're going to go forward and back. So this angle you go out and back. You're going to have a few chins when you do this one.

Good. Okay. This one's the hardest one. The video I originally watched, they called it the Janet Jackson. I don't have much rhythm. So you hold onto your chest and you're going to try and just move your head. Okay. This one is actually targeting these muscles that are in the back that connect to the base of your skull. So it's kind of a weird feeling. You actually feel it like on the inside of your scapulars. Okay. This one's my favorite. I really feel this one. So hold onto your chest. And you're gonna put your head to the side, when you're doing this, you're not thinking about bringing your ear to your shoulder, you're thinking about bringing this ear as high as you can. So we're trying to bring it as far up to the ceiling as we can. And then switch. Again, this one, you should feel the side of the neck and you even feel at some in your traps.

Okay. And the last one, again, holding on, we're just going to do a half circle, so you're going to go forwards. Okay. All right. Good. So again, three minutes a day, and that could really increase your loved one's visual acuity, could help your neck pain. Good for everyone. Okay. So I want to show you guys a trick. So those transfers, one of my favorite exercises to have my patients do, who have pretty much any kind of physical diagnosis related to aging at all, is sit to stand practice. So whenever I'm trying to get up from a chair, if I'm leaning back and I have my legs, see if I can kind of tilt this down so you can see my feet.

If I have my feet kind of spread out in front of me, I'm leaning back. I have all the things working against me. Gravity's not going to help me here. I'm not helping my care partner. If they try to pull me from this position, they're gonna hurt themselves. So a few simple steps. First thing is you say, scoot forward, you’re gonna come up to the edge of the chair, not to the point where it's tipping, but to the point where you're just barely on it, you're going to bring your feet back. You want your feet behind your knees. So when I look down, I shouldn't be able to see my toes. I should only see my knees and carpet. Now, if you had a Walker, you had a grab bar or something like that, you would hold on somewhere differently, but we're going to hold on right here.

So we're going to push ourselves up. Now, this is the trick. When you are going to stand up, the only thing you need to do from this position is lean forward. Don't believe me, try. So from here, we're just going to lean forward, put the weight on your toes. Once you get to a certain spot, you'll feel kind of gravity shift you. And then it's really easy to just pop up because all you have to do is use your knees, all you have to do straighten them. So you're going to push yourself forward, nose over toes. And as you get to the point where you can feel gravity shift to your toes, then you're going to straighten your knees. And this works really well whenever you have a gait belt on someone. So you want to put the gait belt right around here, where their center of gravity is at.

Okay. If I'm leaning forward, I'm putting my center of gravity forward and it's pulling my bottom up off of that chair. Okay. So we're using that gravity to our advantage.

Lessons I've Learned

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Polly Dawkins (Executive Director, Davis Phinney Foundation):

And now I have the wonderful honor of welcoming Connie Carpenter Phinney to the stage. Many of you know Connie from her work with the Davis Phinney Foundation. For those of you who don't know Connie, Connie is an entrepreneur, an artist, an author, a lifelong athlete, and she's also chair of the board of directors of the Davis Phinney Foundation. She's got her master's degree in exercise science, and she has had well over 20 years of experience as a care partner. Today, she is going to be doing a presentation on lessons she's learned. Connie, take it away.

Connie Carpenter Phinney (Board Chair, Davis Phinney Foundation):

Thank you, Polly. Appreciate being here. And I just want to, let's start, and I also appreciate everyone who's sticking around. I know it's not easy, especially if you're somewhere where the weather's really nice, but I promise to tell you a good story. So stay with me here. But before we get started, let's just kind of digest everything that you’ve learned this morning. We've had some great chats from Amber and Jessica and all of our other caregivers that, you know, just have such a wide range of knowledge. You know, we're not professionals. But we talk like we are, right, this isn’t something that we thought we'd be getting our PhD in, in being care partners. But here we are. So let's take a minute, everyone just kind of be here together. Maybe drop your shoulders a little, close your eyes for a second. And let's just take a few breaths together while we're in this space, worrying about our person with Parkinson's and wondering how we are going to take care, how on earth we are going to take care of ourselves. Just let that thought in and let that out. And maybe let's start this conversation with the notion that we're all doing our best.

I want to set that intention right at the top for you to think about how good you are at this job. And it can be a job of being a care partner. And thank you for showing up today. Let's go ahead and open your eyes. Feel better? I hope so. I'm going to also show you a little PowerPoint today, so we can go ahead and put that up. And you know, I, when Polly asked me if I would do this talk, I said, yeah, but I know way too much to condense it to you know, 40 minutes. And I also feel like many of you have heard me talk before. And so to be honest with you, first of all, I'm still learning lessons. So this isn't the final chapter by any means. And you know what else, it's also appropriate if you don't mind, I'm going to give a shout out to Susan Imke. She was actually supposed to give this talk. And I wish she was here today, and she had a fall and had some health problems and her husband also had Parkinson's and she lost him earlier this year. So Susan, this one's for you. She has been a long-time speaker at our Victory Summits, and is really a wonderful resource. So I'm trying to channel some of you Susan, as we go into this. So again, first of all, thanks for everyone for showing up. I don't usually lead with the fact that I won the Olympics almost 40 years ago in Los Angeles for my sports cycling, but I thought I’d kind of tell a story from that today. It's a little something I don't usually share with the Parkinson's care partner community, but I think it's important because I teach you a little bit about me, might give you a little inspiration and also a lot of food for thought.

So on July 29th, 1984, I won the Olympics by a 50-mile road race. And I like to say I won the Olympics because wow, it sounds like I won everything, not, I won the first race on the first day of competition in Los Angeles. And it was the first-time women's cycling had been included in the Olympics. So let's go ahead and show the first slide. I want to show you how close it was. I am sprinting to the finish line, a pack of six, there were easily half a million people lining a 10 mil course. The women had five laps, the men did 11 or 12. I don’t know, Davis is in the other room. So he would be correcting me about now. But the point is we all raced in this beautiful venue in Mission Viejo with all of these screaming, crazy people.

And I beat my teammate to the line, which you can barely see at the bottom of this picture, by an inch. So I could talk to you know, and I do talk to a lot of groups about what it takes to be an Olympian, but that's not what I’m really going to talk to you about here. I'm going to talk to about what an Olympian is thinking about when she wins the race. So the first thing I did was cross the finish line with my arms in the air. I knew I'd won, even though it was close. And I really didn't know it was that close until the next day when I saw it on a, I think I was on Good Morning America or something and I was like, oh, that was close. And and so Davis was right after the finish line.

I was able to give him a big hug. We were married at the time. And the big story was, could the, you know, the married couple, both medal or both win on the same day and the media had, of course decided that we could. The odds were really stuck to against us. No American had won the Olympic road race in any Olympic history. So we were basically you know, kind of between a rock and a hard place. And I'm sorry, Davis, that you had so much pressure, because I got to get mine out of the way. I raced first. He raced after me. And he was right there at the finish line and he had been trying to watch on a tiny little black and white TV or something that was over in the secure team area.

And he actually couldn't tell at the moment had I won, and I literally fell off my bike in his arms saying, I think I won! So that's the first thing I did. The second thing I did after kind of collecting myself, maybe I combed my hair, I was a little sweaty. Maybe I sponged the sweat off, to be honest, I think I changed into a dry stars and stripes suit for the medal ceremony, but the medal ceremony, wouldn't be for about half an hour after the race. And it was scheduled kind of in that secure area. So I couldn't see any of my family or friends who had come to the race, my brothers, some really good friends, and Davis's parents were there, but my parents stayed home, and I was born and raised in Madison, Wisconsin. And my mom was diagnosed with multiple sclerosis when she was 30 and I was five.

So I don't have a recollection of my mother without, you know, without MS. MS is also a neurological disease. It can be very debilitating. It's different from Parkinson's in many ways. And it's actually there's much better treatment for it now, but in my mother's day basically she put it on the, tried to put it as best she could on the back burner and not talk about it too much. We're different now, you know, she didn't have these kinds of resources. And part of the reason we started the Foundation was that so many Foundations are, you know, cure based looking for the cure. We want the cure, but I heard throughout my lifetime that a cure for MS was around the corner and while treatment is much, much better there is still no cure.

And so, you know, a big part of why we started this Foundation was that Davis was 40 when he was diagnosed, and we knew this would be a very long journey. We didn't really know how unpredictable it would be. And I think that's the thing that we all know now. Many of you listening today have been living with your person with Parkinson's for 10, 20 years, those of you that are signing on new, good for you to have this resource and other care partners that are sharing such important information. So, we feel lucky and blessed that we've been able to start this Foundation and work together. We rode our bikes together, and now we work on supporting the Foundation together. But in that moment, when I finished the road race, and I was in fact Olympic champion, which in all of my career, I had been very successful, but I had never imagined, fully imagined that moment and what it would feel like and what I would want to do next. And let's go ahead and show the next slide, because I want to let you know that what I wanted to do was phone home.

This was actually in the time before cell phones, actually, some people had big clunky cell phones, you know pretty silly, but I didn't have a cell phone. I didn't have any communication after I finished the race and I wanted to phone home and talk to my parents. So I got on a little frantic search for a telephone, and I was assigned, as I finished, there was a little volunteer that was sort of my shadow and to make sure I got to the medal ceremony when I was supposed to be there. And I said, do you know where I can find a phone? We were in the middle of a residential neighborhood so that there weren't any payphones. I didn't have a quarter anyway, but I started searching for a phone and it's kind of, I've written about it.

And I'm going to just read a little bit to you because I want to keep it straight, but it is ironic today when you know, we can't put our phones down that that's the first thing I did was go look for a phone. So when I asked my turquoise clad volunteer escort, phone? Telephone? she just shook her head. There has to be a phone I thought. Phone? I mimicked. I looked around, I looked at the coaches. I looked at the other volunteers, the course marshals, phone? Everybody just shrugged. They also might've congratulated me, but I wasn't interested in that. I was interested in finding a landline to call home. So what I did was I started walking toward some scaffolding that was right at the finish line and it had some big, the Olympics were televised by ABC that year.

And so big, big signage, lots of cables coming out of this rickety scaffolding. And I was like, I'm going to go ask those guys in the announcing booth if they have a phone. Cause I knew they would be on a break. Our race was finished, and the men's race hadn't started yet. So I climbed up into the scaffolding and there was Al Michaels who's a very famous football announcer actually. And Greg Lamont, who has won the tour de France and Eric Heiden who grew up in my neighborhood. And as you maybe recall, won five gold medals in 1984 speed skating, which was also my first sport. So I knew two out of the three guys pretty well, and I kind of sheepishly poked my head up into the scaffolding where they were sitting and I said, hey, can I use your phone?

And they they were surprised to see me. They all congratulated me and patted me on the back and pointed over in the corner to where the phone was. And so I said, I’ll chat later, I really need to call my parents. So they stayed home because it would have been too hard for my mom. And we never envisioned there'd be so many people there at the race course, but it would've been too hard for my mom to watch and move and be there. So this was the first time women's cycling was on television. And it was the first time and the last time my parents would see me race on TV because I actually stopped racing right after that race in fact. So I grabbed, you know, I sit down, my legs are trembling. I'm really thirsty, but I start dialing (608) 249-5822, my home phone number.

And it starts ringing, oh good, they're not on the phone. I thought maybe they'd be on the phone, then it’d be busy. We didn't even have call waiting at that point. So the phone rang and rang and rang, and I'm starting to think the worst. Like they forgot, my dad had a heart attack, what's going on? And I just let the phone ring and I was holding the, you know, the ringing phone up to my ear. And I was just like, rolling my eyes, like come on parents. And and so all of a sudden, just as I thought they'd forgotten, my mother answers the phone, winded, out of breath. And I have to tell you I've never, ever, ever seen or heard my mother out of breath. And so, you know, she just didn't move fast enough with Parkinson's. She had a wobbly gait, shall we say, oh, with MS. Sorry. She had a wobbly gait, and I think you can all relate to that, not being quite as fast. And she, you know, she was a pretty young woman then, but she was early fifties. I'm calling that young. And when she got on the phone and my first words to her as my dad also chimed in on the other line were mom, jeez, where were you?

And I just love that memory because now that I've had my own children, I can appreciate you know, me just kind of, you know, not just giving them the breath to say, you know, well done. And instead I'm like, at least you answered the phone and they said, yeah, we're great. And you know, I let my dad talk, you know, you did it, it was so fun to watch you on TV. How are you? All of these questions. And then I just was like, but where were you? Why did the phone ring so many times? And my mother answered, oh, dear, we were out in the backyard shooting off bottle rockets.

And you know, this was my mom and my dad, my mom in full flight with her disease, my dad, as the most wonderful care partner. And they were making the most, the sweetest lemonade from the lemons that they had been delivered. And that's what my mother always said. I could always feel her smiling through the phone. She had such an upbeat, positive attitude, and it's something that, you know, I've been able to embrace throughout my life and especially in this journey with Parkinson's. And so, you know, I always tell people what did it feel like to win the Olympics? And, you know, in a big way it was relief, but in the other way, it was this deep feeling of joy and and a time and a capacity to connect over time, actually, with all of the people who had supported me in such wondrous ways.

And so my first instinct was to connect, and connection is such a big part of living during this time of pandemic and also living with someone with Parkinson's. And so I would ask you just to sort of sit for a second with that crazy little story and think about your team, your connections, and who's important to you. I think it's very important that we acknowledge how many people lift us up and carry us. And if you feel cut off from family and friends, because you don't live in close proximity, there's always the phone and better than that, FaceTime. And there's also new friends. We've found that many of our new friends are actually better at supporting us than our friends that we knew when we were racing. And that's because they've really only known Davis when he's had Parkinson's and he's had it now for 20 plus years.

Team is important. Team is number one, I think really. Let's go ahead and pull up the next slide. So that's what joy looks like, but I was so far from all the spectators. I couldn't see any of my family members that were there. And so in a lot of ways, all I really wanted to do is get off that podium and go, you know, throw myself at the crowd and find my family. Who I wouldn't see until much later. So that's my Olympic experience. And because of that, let's go to the next slide, because of that my tips to you all may be a little different than what you're used to. I want to give a shout out for the first pamphlet we produced for caregivers, which was called Rewriting the Rule Book, which you can download online.

And it has a lot of practical tips from me from my caregiving talks I've done at our Victory Summits and what I've learned from myself or from other caregivers. And you've had a lot of that information today as well. And I think you all know, and I'm so proud of this, that we now have a Every Victory Counts pamphlet, thinner than the EVC for Parkinson's patients, but also wonderful for the care partner community. And I would encourage you to have your person with Parkinson's read this too, just as you can benefit greatly from knowing more about Parkinson's and your person with Parkinson's, you also want to be able to really, you know, stand there fully informed on both sides of the equation, because care partnering is a two-way street. It's not a one-way street. And so communication is key.

I think you've heard that a few times today, but thoughtfulness between the two of you is also really important. And that kind of thoughtfulness and kindness is what will keep both you and your person with Parkinson's happy or happier, I hope. I know it's challenging and we're all in different places in terms of what challenges we're experiencing right now. But I know one thing, when Davis was diagnosed, he was 40 years old, I was like, we're going to be with this for a long time. It is a long journey. And my first little sketch on the far side of the, on the left side of your slide there is how I represent the journey up, down, and all around. But the number one thing as an athlete, an elite athlete, who was an endurance athlete, I want to say, you have to pace yourself.

And so that's not always possible because some of you are really in the thick of it and it feels like it's 24/7. But part of pacing yourself is also figuring out who you need to bring in to help you. That's so important. The really super, secret tip and kind of unknown and unexplored part, of an elite athlete’s lifestyle is rest. And too often, especially I think most of you are older and many of you are retired. So you're not trying to work and balance care partnering, but some of you are, and this is where it gets tough, right? Is when you're exhausted and or maybe you the care partner has other health concerns. But your person with Parkinson's concerns are put before yours. What you need to do, it's just like the stewardess tells you on airplane is put your oxygen mask on first. And that number one thing might be just to get more rest and whatever that means to you, whether it means having separate beds, whether it means sleeping in a different room, whether it means just having time to do your yoga practice or meditation practice without interruption.

And to be honest, if you did the last two, the meditation and the yoga with your person with Parkinson's, it would be better for you and for them, but be a little, so the other thing about an elite athlete is that we're very good at knowing when we're too tired or too overworked and we'll rest. And I say, we rest hard. It's Olympic level resting. So when you see those champions at the Olympics, when you saw them last summer, or when you see the winter Olympics, this coming winter, you know what they do better than anything is they rest. So I want you to think about how you can rest more. Olympic athletes are also terrific at asking for help. They have coaches, physical therapists, they have a whole team around them. They have psychologists. And so who do you need to support you? Think about that.

Who do you need to support you? And think about your team, the people that are on your team that maybe aren't serving you as well now. Maybe that's time for them to move off the team and make room for someone else. So think about that from a very selfish standpoint, from your standpoint, you, the care partner, what do you need and who do you need? And line those people up and learn to ask them for help, help in the kitchen, help with groceries, just coming to get your person with Parkinson's and get them out for a walk or a regular exercise class, if that's possible and coming to sit with your person with Parkinson's. So you can go off on your own if you need that kind of support. And I also wrote down seek nourishment. You know, you don't race a two hour race without eating something and nourishing yourself, you know, having good food beforehand, having good food after having good food during, nourishment, what form does it come in for you? I read a lot. I write a lot and I do a lot of art and that's nourishment for me.

That's nourishment for me. What nourishes you? Optimism. I consider myself an incurable optimist, and you may not feel that way, and you don't have to be like full on optimistic about your person with Parkinson's lot in life or your lot in life. But the more you learn to see things through a positive lens, the better it will be for you and your person with Parkinson's. And it’s probably meant you've had to slow down, but you also need to understand that, you know, optimism is learned. You can learn it. It's not the same as toxic positivity. Okay. Where you're just going to say, I'm fine. Everything's fine. Nothing's wrong? I'm good. That's not the point. The point is, is to know, to know how you are for sure, but if you're not doing really well, you have to take steps to help yourself.

And it might be a medical intervention. It might be a friend intervention. It might be a weekend away, but as an elite athlete burnout is a constant fear because if we train too much, we get over-trained, and the symptoms of over-training are very similar to the symptoms that you would feel if you felt burned out. The number one thing that happens is you lose your sense of humor. And humor’s so important too. I didn't put it on the list today, but I, as everybody knows, if you’ve heard me talk before I am a big fan of humor. And if you don't tell jokes, you can at least listen to them and maybe keep a little tickle notebook. We had a great talk about that on one of our recent, our mental health webinar Victory Summit, which was really a great idea to just write down jokes, write down funny things, watch, you know, comedy central, get some humor in your life.

But if you really don't find anything funny, then you probably are burned out. You're languishing, not flourishing. And the best thing for that you can do for yourself is to figure out how to flourish, not languish. And many of us feel like we're languishing in this time of the pandemic, it's so difficult to not feel bad. And the great psychologist, Esther Perel, who has a number of podcasts was talking about the time that we're living in, where we all feel because of COVID and especially during the more tightly restricted times in COVID, how we're all feeling like we're in some enforced presence, you know, the present tense of a present, right? And so she and Davis and I were listening to this in the car, and we literally stopped the recording to say, wow, you know what, enforced presence, that's Parkinson's, because we don't know what it's going to be like tomorrow.

So we just had to focus on right now. And that's a good life lesson for anyone. And for all of us, sure, it's difficult. You don't know if you're going to make it to, you know, your nephew's wedding because A, maybe it's not the right thing to do health wise, B, your person with Parkinson's just might not be able to make it. And so we have to stay flexible. Right. And that's up there too, you know, and I was joking, can you touch your toes? That's not the kind of flexibly of course we're talking about, we're really trying to just keep our minds agile and kind of go with the flow, but also be able to, you know, guard our best interests. We need variety. We need connections. Up top, you'll see, it says, make connections, DIY, do it yourself, or do it together. Do it together, find support and do it together and make it, you know, make your life a little bit easier just by having, you know, that little extra connection.

And it doesn't mean you're not doing that with your person with Parkinson's. Davis and I do most things together and we enjoy our time together, but I know that I have to be careful, and I have to guard his energy more than I have to guard my own. Stay curious. There's nothing better in life than to be curious about something and keep learning. And so when you're listening to a podcast, a lot of times, like some of these podcasts are so good with Brené brown, or, you know, I listened to Dax Shepherd’s podcasts. And that leads me to all kinds of podcasts. And I take notes when I listen to those, you know, I listen to Poetry Unbound. If you love poetry, their channel has has this whole series of podcasts that are just exquisite featuring various poets and discussions around poetry, but what makes you happy?

You know, what makes you happy? Find that, you know, happiness and joy, we've discussed that before too. And it's really, you know, you're aiming as a John Paul Lederach said earlier, you’re aiming for this moment of awe daily moment of awe, right? Just something that takes your breath away. And I think we all live, everybody lives in a place where there are natural moments of awe every day, most times in our house, it's the sunset. Let's look at the next slide real quick. Davis took this yesterday, yesterday evening. He races out to our deck because the sky is so beautiful and captures that, and that's almost a nightly occurrence for him. And then he likes to fuss around with those images and, you know, it just gives him a lot of pleasure to you know, crop and look at some of these.

So what brings you joy? Is it a photograph? Is it is it a bike ride? Is it a walk in the park? Is it a nap? All activities around the table. Can you go back one once? Yeah. And so, you know, I'm going to share also the notion to practice gratitude. And I want to add to that journaling, because when you write things down, whether you're taking notes from a podcast or an interesting documentary, you might be watching or a book you're reading, you're really engaging in something that lifts you out of yourself. And when you practice gratitude, you're acknowledging that you have many things to be grateful for. I'm usually pretty grateful just that I woke up in the morning that it’s just starts right there. Thank you. I’m awake. Let's go, let's do this. So, you know, it, you can keep it simple.

It could be a list of names. It could be events that happened in your past or that you hope will happen in the future. The fact that you're still planning your future is something to be grateful for. So just take a look at what all those various you know, factors are, and spend some time with that in a journal. I love to journal. And most of the time I'm doodling like drawing pictures and, you know, just writing. And sometimes, I refer back to them sometimes I don't, but it's just important to write it down and get some of your hard feelings out of the way too, some of the resentment, because that's a natural reaction to being confined by a person with Parkinson's. But it's also important to know that you can write it out. You're gonna put it out there in the world where it's not going to hurt anybody.

And it might make you feel better. I think it will make you feel better. And a lot of my writing I've been doing recently has been about my childhood and I just love sharing it with my three brothers. And I love when they send me thoughts back about things they remembered or how they remembered things. And so you can time travel. You might not want to travel too much right now, but you can always time travel. And I do that a lot with my mind. I've traveled extensively. I've been very fortunate to have done that. And a lot of times I'm just thinking about, you know, the, the Mediterranean Sea, a beautiful place I might've sat and watched little things like that just can turn your mind to more positive feelings. And that's how you learn optimism if you don't already have it, is to daydream back into things that mean something to you. Let's go to the next slide.

So yeah, a few action steps. Put yourself ahead of your person with Parkinson's on a regular basis so that you are healthy mentally and physically for them. Take time to exercise, of course, and keep making connections, keep making connections, even if they're via zoom. I know people say they're having fatigue from zoom. I understand that if you're in the workplace and you're on zoom all day, but it's a great way to connect with people. And I really encourage you to set up regular conversations with people. You know, I used to, my mother used to call her her mother every Sunday. And so then I had to call her every Sunday and you know, just having that schedule is sometimes really, really helpful. I think we've talked about the other points there. Let's go to the last slide. I'm going to try to get back on schedule a little bit here.

I want to acknowledge that some time being a care partner for someone with Parkinson's kind of feels like you're stuck in a dark tunnel. This is a shot I took of Davis riding through a tunnel in Grand Junction. We had gone back to visit and ride our bikes through an area that we raced in called the Tour of the Moon. It’s just got fabulous rock formations. And I think this is kind of a nice metaphor of just kind of coming out into the daylight or coming out into something that you didn't remember was so beautiful. That was our experience there, just coming out of this kind of darkness. And this was, you know, we actually went to get our vaccinations in Grand Junction because the Boulder ones were kind of backed up and I was like, let's go somewhere.

And so we drove out to the Western edge of our state, took a couple of bike rides and hikes, and it was just such a relief, not only to be vaccinated and feel like the world was opening up a little bit again, but also to ride in this familiar place and revisit a memory that we both shared and had really strong memories about. So don't be afraid to do that. You can always do that via your photos, photo albums, but, you know, take the time to remember what is great in your life. And I think it will help you on so many levels, but as a one Olympian to another, because you're all Olympians in the field of caregiving. What I want to leave you with is this, you need to rest, you need to nourish yourself and you need to stay curious. And by staying curious, you'll stay open. And in the words of my wonderful not my wonderful, but a wonderful Zen teacher that I got to spend some time with what we really want is a soft and open front and a strong back.

To download the artwork Connie displayed in her presentation, click here. 

Care Partner Q&A

To download the audio for "Care Partner Q & A," click here.

You can read the transcript below. To download the transcript for "Care Partner Q & A," click here.

Gail Gitin (Ambassador, Davis Phinney Foundation):

Hi I'm Gail Gitin. I am very involved with the Davis Phinney Foundation. I was married for 52 wonderful years with a man who passed away from Parkinson's just one year ago. And I don't know, I just can't leave the organization because it did so much for us. And it really helped me through some really rough times. So I feel that I want to keep working with them.

Connie Carpenter Phinney (Board Chair, Davis Phinney Foundation): Pat, why don’t you introduce yourself.

Pat Donahoo (Ambassador, Davis Phinney Foundation):

Well, hi, I'm Pat Donahoo. I'm a care partner to my wife, Cidney. We're both ambassadors like Connie mentioned. And she was diagnosed in 2010 and it's been a journey and it's continuing, and we love it and hate it. Welcome everybody.

Connie Carpenter Phinney: Go, Gail.

Gail Gitin:

One of the things that was said this morning, someone said Parkinson's is predictably unpredictable. I really liked that.

Pat Donahoo:
Yeah. I call it sometimes it slaps you in the face without you knowing it's coming.

Connie Carpenter Phinney:

Yeah, no, that's true. And I mean, you just lay some plans down and then all of a sudden you know, you gotta just call an audible as they say, in football parlance. And since it's you know, college football day, we might as well use that, but you know, call an audible and not even be too apologetic about it because you know what, there's a lot of events that, you know, you can easily say no to, and the ones that you really want to go to and can't get to, you know, it's unfortunate, but there's also other ways, you know, you can connect via FaceTime or zoom with people at the event that maybe you're missing, especially if it's like a family event or something, you know? I think that there's, you know, in this day and age, there's so many ways to work around it. Somebody just asked, can you describe how your role as a caretaker has evolved through your journey? Who wants to hit on that one first? That's a good question.

Pat Donahoo:

It's still evolving. That's the thing. You know, I started off on this, what are we supposed to call it now, Connie?

Connie Carpenter Phinney:
I don't know. Just some people don't like journey. It is a journey. I mean, life is a journey, come on.

Pat Donahoo:

So anyway, I call it the journey. But anyway, trying to fix it and trying to fix the problem, trying to fix the everything. And you know, I learned that you can't fix it. I think that was, I think one of our speakers today mentioned that and it's just, it continues to evolve. Right now we're going through anxiety and things like that. Areas that you know, it's just like, oh my gosh, what did I do? The anxiety that, you know, it's like the iceberg where you don't see everything down below the water and everything that you don't that isn't part of the visible parts of Parkinson's right now, we're looking at educating the close members of our team that don't understand all of those things, because, you know, as we talked in the last, in our last monthly meetup, my daughter and her family has invited me to go with them on a trip to Hawaii in December. And that has created a whole lot of anxiety. And my wife, she finally said, well, yeah, go ahead and go. And then I said, cool. I felt that relax. I felt relaxed enough that we made the plans and then the anxiety just erupted. And so we were able to make new plans and pivot and...

Connie Carpenter Phinney: Anxiety in you or anxiety in...

Pat Donahoo:

Anxiety in her. That's the Parkinson's anxiety that was talked about today. That's why I was on the edge of my seat when they're talking about, when she was talking about anxiety and taking care of yourself and taking care of your person with Parkinson's. And that it's a real thing. And that's part of my evolving right now.

Connie Carpenter Phinney:

Yeah. I think too, and I guess we're not going to do survey, but I'm going to guess since we asked this at the start, you know, so many of the people that were signing on today, many of you were first timers to the Victory Summit and to this format, but many of you have been living with Parkinson's, a person with Parkinson's for a very long time. And I would encourage, when you talk about the journey or your role, I think one of the things that Davis and I have realized that's helpful is sometimes you just gotta call for a reset, you gotta hit that reset button. And, you know, you might've dug a little bit of a hole for yourself, whether it's an anxiety hole or a, you know, apathy hole or, you know, whatever, give yourself permission to just sort of put that behind you and with your person with Parkinson's and just really have those important conversations around, you know, this is hard. I know it's hard for you and I don't know what it feels like to be you.

I say that a lot to Davis, you know, I don't know what it feels like to be you. And I know a lot of times your person with Parkinson's actually, while they're not feeling very good themselves, they're also feeling not so good about what they've brought to your life. And so it's important to talk about that, to acknowledge that, you know, yeah, this is hard. It's not what I thought. And here's how I think we can make it better. You know, when you learn something new or you want to try something new is to use that kind of phraseology to get started you know, maybe a fresh track because the Parkinson's does change. And that's why, when I wrote the little pamphlet, the handout, it was called Rewriting the Rule Book, because I felt like the rules are changing so fast, you know?

Let me give one example, Gail, and then I'll throw it to you is the Olympics have changed so much because of COVID this last year in Tokyo and now going winter Olympics are in Beijing. And I just got the, I follow all the kind of tangential stuff that goes on within the Olympic movement, and I got their updated playbook. And I love that because it's a playbook around how the athletes are going to be dealt with in terms of COVID and you know, what the rules are and you know, how to best prepare and how they're going to do the distancing and all that stuff. But it's like, we need that too, right? We need updated playbooks, like kind of regularly. And so I would encourage all of you, if you haven't thought in those terms, the terms of, you know, I need to write down my thoughts like what's working. I think that came up today is talk about what's working and talk about what's not working. And you know, let's not do this anymore. Let's not have these arguments that are going to trigger your symptoms because then I feel guilty. And then you feel guilty that I feel guilty. You know, it's just this vicious circle. Right? So Gail, what do you got? You were going to add something to that.

Gail Gitin:

Well, you were talking about the journey. So, the first part of my journey was not quite understanding what was going on. So that was just confusion. When my husband was diagnosed, then there was denial that came into the picture, as his, and I didn't really want to share it with anyone. I asked him not to tell anyone, and I didn't want to tell anyone because I was in denial, figuring I can hide his symptoms. That was a job for me to hide his symptoms. So I gave myself a job right then and there. Then as that progressed, I had the journey of him telling me, Gail, you don't, you have to understand, I'm not doing this on purpose. I'm not being slow getting ready, or I'm not sitting at the table staring when there are things to be done. So I had to begin to understand that. At first, I refused to read anything about Parkinson's because there aren't too many happy examples of Parkinson's.

So I thought I would stop reading about it, but of course, as things progressed, I then realized it's very important to me to understand so that I can be more tolerant of the things that are irritating me and understanding it. So I went from denying to then getting involved in reading it. And then of course, as my husband became worse and worse, I then became a caregiver. And then I did a lot of reading. Then I really jumped into it with, well, the Davis Phinney Foundation, everything like that. So I could actually empathize with him. You know, there was a whole empathy and sympathy, but and really understanding, which made it easier for me because I didn't take things personally. And also, I didn't, I stopped trying to control his disease. I went with it and realized that things are going to happen, and I can't control it. So I gave myself that ability to throw away the guilt and just do the best job that I can do. So that was my journey.

Connie Carpenter Phinney:

Yeah. Huh. I think that's a good point too. Like you, we do go through, I think some of the stages that the newly diagnosed go through, right? Like confusion, denial, resistance. I would say too, and I meant to say this during my talk earlier is that one of the best things you can do for yourself is to avoid negativity around you. And that would be like watching the news or don't watch the news, you know, don't keep your TV on all day to you know, a news channel that is really only designed to bring you the bad news, you know, and change your point of view too, so that you can keep yourself more upbeat, because I think that's a big part of grappling and dealing with this successfully. I'd also like to throw out there, Pat, you actually changed jobs in order to better accommodate your person with Parkinson's, would you like to talk about that a little, because I think that's another interesting aspect. And again, you know, many people on the call are maybe past their prime work years, but you did a pivot fairly late in your life to make your family situation work.

Pat Donahoo:

Yeah, to say the least. I actually was in a, I had a career in advertising and radio and television and for a long time, 30 years about, and when Parkinson's came, I knew, we knew that something had to change because of the stress that I would bring home. You know, you're only as good as your last sale. And sometimes I’d bring that home and I’d bring work home and that was needing, we needed to make a change on that because of the stress, because of the negativity or what have you, that might be coming around with that. And so we started looking at it and eventually what I did is I went back to school. I was well into my fifties. And I went back to school, I now have a master's degree in special education and I'm a special education teacher at a high school here in Las Vegas.

And I'm loving it. And it also gives us, it provides us you know, it still has its stresses, but it provides us with the opportunity, number one, to have the benefit of a decent insurance program which is important. And the other thing is that it allows for our schedule to take time in the summers to take time, to get out of the, we're in the middle of the desert. And I don't know if your person with Parkinson's likes the heat, mine doesn't and so we get out and go up to Colorado and we actually ride our bikes all over the place, but yeah, that's just really how it's evolved. And, but changing that job was a big deal. I'm now six years, I'm in my sixth year of teaching and I'm the oldest teacher with the youngest amount of years with the least experience.

Connie Carpenter Phinney:

The least experience, yeah. But I think it's also just like everything that we do as a care partner with our person or around, you know, life choices like this with, and for our person with Parkinson's affects us. And we need to you know, really assess how we're living. Davis and I downsized pretty early into a single floor condominium with a wonderful view, which is where he takes his sunset shots from. And you know, it's really served us well. It's not for everyone, you know, and I know Amber, the occupational therapist was talking about, you know, trying to get your person with Parkinson's up and down stairs. You know, there's several places in the home that become pretty unhealthy for your person with Parkinson's and stairs can be one of them. And if, especially frequently, and especially if they're running late and they're trying to come down the stairs fast, one time Davis came down the stairs on his back as if he was riding a sled, because he was wearing his some ski boots or something.

And they slipped out and we had a friend waiting at the front door, and I was just like, oh my God. But, you know, he turned it into like a smiling moment as if he'd done it on purpose as if he was the one man, you know, it was a luge run, but, you know, fortunately he didn't get injured, but, you know, that was like, I was just going oh my God, we got to get out of this place cause you know, he’d just run up for something that he'd forgotten. And then, you know, in his hurry and being in boots that he would normally not be wearing in the house fell and, you know, falling is difficult. We talked a little bit earlier today too, about what was one of the topics on the OT, I was thinking, oh, one thing that wasn't included, I wanted to mention was talking about driving. Are any of you concerned about your person with Parkinson's driving?

Yeah, so I just wanted to add that the occupational therapist can also sometimes either direct you to, or help you with an assessment for driving. And yes, the best choice is not to drive, but if they are going to drive, they need to stay in practice driving. And that's another great point that Susan Imke who was meant to be among us today also would talk about with her husband, you know, that when you decide that it's not safe and they drive very, very, very infrequently. You want to remember that they do need to practice. And so infrequently, it's not good. It's better just to not drive at all, if there's a concern. And that's hard, it's really hard. Yeah. And a couple of people are saying their person doesn't drive or decided not to drive. And I think that's, it's a rough one. It's hard with elderly parents, even if they've been healthy their whole life, right, when they should stop driving. And there's nothing worse for your body than a car accident so much better to avoid that if possible.

Jackie Hanson (Education Content Associate, Davis Phinney Foundation):

We had a question, I think, right at the beginning from Alison, she asked, so often when I plan an activity with my husband at the last minute, he doesn't want to participate. How can I best handle these situations?

Connie Carpenter Phinney:
He doesn't want to participate, so you've made a plan and he wants to change the plan basically.

Alison (Audience Member):

Right. I feel like he it might be that he's not feeling well, but I don't take it that way. I take it that he's just doesn't want to do it. And it hurts my feelings. And it, I feel like he's just trying to not go along with what we thought we would do.

Connie Carpenter Phinney:

Yeah. That must be frustrating. And I think, and I think we've all probably experienced that on some level. And I think that's where, and so at the moment that they decide not to go is a hard moment to then have a careful calm conversation around it. Right? And so, you know, let me use it analogy that I would say when my daughter was young and she was in like middle school let’s say even grade school, she would ask, she would go to a friend's house for dinner, they'd be playing and would lead to dinner. And then she'd call, and she'd say, can I sleep over? And one of the number one rules in the house was there was no unplanned, there were no unplanned sleepovers. So once we, you know, if she would have asked me a few days before, and I could have talked to the parents and we had it set up, then we might've done that, in this case with you, with Parkinson's.

Can you see the link here? You need to have a rule between you that says you don't get to change the plans, you know, especially about something that's near and dear to me, unless it's an emergency, and I'm only gonna give you like so many, like little cards, like you're gonna make some little cards up, like monopoly, you know, the get out of jail, free card. This could be the, you know, you don't have to go card or I'm going to get someone to come here and stay with you while I go card. But I think that this leads to that bigger question of communication. And then also the bigger question of who's on your team that you can get to support you. And especially if it's an event that's important to you, if it was, you know, your family get together, if it was your friends and you want to still go, you need to be able to have an option right to still go. And that's where you have, that's where you just need this either a bigger team or, you know, some good rules around that, because nobody likes a surprise. And even though we all have to agree that that does happen. I think if you started to have that conversation, when it wasn't go time, it would be most effective. Pat or Gail, do you have anything on that?

Gail Gitin:

It's tough. It's really tough. You know, you plan these things. This is for your mental health, your physical health, and not only don't, you get a chance to go, but then you have more stress because of the situation, it's difficult. Connie, your suggestion is good. I can't imagine other than whatever condition. I mean, if your Parkinson's patient is in pretty good condition, then you just say, here's your dinner, help yourself, I’m going. But that depends on what condition they're in of course.

Pat Donahoo:

Yeah. Yeah. I try to keep an open mind, if she doesn't want to end up not wanting to go to something that we have planned to go, if I don't really care to go, you know, if it doesn't, if it's not gonna affect me either way. I mean, if it's not a planned thing where it's something that I'm really looking forward to, then we can, you know, we talk and everything, but I, like, I was asked if I'm going to Hawaii, I am going to Hawaii, and she is going on a trip of her own to her sister's house. So we've got it all worked out that way, but it could, you know, you never know it could still change, but yeah, keeping an open mind and being willing to give and take and but you do need to take care of yourself and if it's something that's really planned for, for sure, I mean, there's your dinner, I'll be back.

Jackie Hanson:
Richard looks like he has a question. Yeah, Richard.

Richard (Audience Member):

Actually I'd like to make a contribution. Hi, I'm Richard Adler. My friend, Gail, who's been wonderful to me has been keeping me alive for a long time. My wife's in her 17th year, I just said to the chats on a completely different subject. I want to make a contribution. I'm a lawyer for 54 years, former prosecutor, and I specialize in traffic law. I have had many friends and relatives and referrals who ask me, what do I do about somebody who shouldn't be driving? They won't quit. You are playing with fire. Somebody could get killed. Somebody could be maimed, your loved ones could be injured, permanent more permanent ways than, you know. Number one, try to find somebody they trust and make a limited contract with them, maybe for three months, five months where they won't drive. And then it's a renewable contract and have both of you sign it, excuse me, and have both of you sign it so that you're both responsible to each other. And I.

Connie Carpenter Phinney:

Hey Richard?

Richard:
Go ahead Connie, sorry.

Connie Carpenter Phinney:

Yeah. Richard, let me add to that. So interestingly in our case, and I'd just like to share that because I do agree with you that if you feel your person with Parkinson's is unsafe it's a tough call, but you need to help them to stop driving. And I think a contract between you might work, but we also, we paid money to be evaluated, to have Davis evaluated by an occupational therapist who does this for elderly people and people that have challenges like Parkinson's and she and Davis made a contract. And that was that Davis wouldn't drive after dark. And he wouldn't drive in unfamiliar places because she could see where that would cause problems. He doesn't have trouble driving in his town. We live in the town, he was born and raised in, he doesn't have trouble driving to the airport and back because it's a simple, you know, drive. And so that was, to me, was a fantastic suggestion because I think driving an unfamiliar places, is hard for all of us, much less a person with Parkinson's. So, and I was told Richard at one of our talks by someone with similar experience to yours, that having, getting your person tested and an approval for that will actually be a form of defense if your person gets in, you’re shaking your head, Richard is that wrong?

Richard:

There are two ways. First of all, I love what you did with, I just learned that my wife through you Connie and a program, is suffering from some dementia after 17 years. Now, she's in a wheelchair for the last two. And I didn't realize that dementia, it's cognitive patterning, but it's also responsiveness to patterns, these could be traffic lights in your scenario, or it could be at home, not even being able to sort sweets and numbers of decks of cards. So the reason I’m mentioning this is if you can find a way there's two ways to do this, number one, you can write to your licensing issue body in the state, usually called the DMV, department of motor vehicles, who in our area, it says Illinois secretary of state, whoever issues the license and write, and ask, say that this person anonymously say this person's unsafe. They'll cancel the license, take the burden off of you to take away your loved ones privileges and have it resolved that way, anonymously. And then a doctor has to write a written approval for that license to get back reviewed by a medical board at the DMV. They have a professional board that does this all the time.

Connie Carpenter Phinney:
I think that’s probably state by state right?

Richard:

Every state has this, all 48 states, remarkably. The second thing that you mentioned. My father-in-law took the test. I drove him there cause I didn't feel safe with him driving. This was years ago, we got to the DMV, they took him around, I waited, they came back. I said, how'd you do figuring he failed. And I'm off the hook. He said, I passed. I said, Oh God. Congratulations. Give me the key to the car. Where did you park? He said, I have no idea. He had no idea where he had just parked his car with the person who tested him, that tells you about cognitive patterning. And he had the beginnings of dementia. I'm sorry. I'll stay out from now.

Connie Carpenter Phinney:

Yeah, let's jump topics. But thank you so much for that because I think it is an important topic and we didn't cover it. We didn't talk about it today. So what else do we have? We have a long, is this a question from Darlene, Jackie?

Jackie Hanson:
Darlene, did you have a question associated with your comment or just contributing?

Darlene (Audience Member):

Yeah. My husband has become, it is a question and it's about me. He doesn't take very much medication, just carbidopa, levodopa, but he's become convinced that his worsening symptoms in the evening come from more and more medication. And so he keeps wanting to reduce his medication and his symptoms keep getting worse and worse. And so I'm watching him suffer. My caregiver burden is increasing, and we've had numerous conversations about this, but he's convinced that his worsening symptoms in the evenings come from his medication, and he wants to reduce it and reduce it and reduce it. He keeps saying, I keep saying, well, are you willing to try whether more medication helps? And he's like, oh, I'll try it maybe sometime, but then he never does. Because it doesn't make sense to him on some level. And I have no idea is this cognitive decline? What's, you know, what's going on here? I don't think that the carbidopa levodopa is causing worsening symptoms. I think it's disease progression.

Connie Carpenter Phinney:

Sure. It could be a combination, but you know, you're not in a position to make that determination, kind of, but you're seeing it right? And so you want to know, is this normal?

Darlene:

Well, here's the caregiver problem too, in his doctor's appointments, he's far more functional than at home. So our doctors follow, our doctor tends is young and tends to follow his lead is what I'm seeing so far. So as a care partner, how do I, I just, I’m at a loss.

Connie Carpenter Phinney:
Okay. Darlene, are you seeing movement disorder specialist?

Darlene:
Yes. Movement disorder specialist.

Connie Carpenter Phinney:

Yeah, that's good. So I think what you want to do is communicate with the doctor's office privately, are you able to do that? Do you have the HIPAA release forms?

Darlene:
I don't know. I have not tried to do that before, so I could try that.

Connie Carpenter Phinney:

Let me make a suggestion. And that is you call the doctor's office and ask them, what do you need from them to sign on? He probably has to sign it too to say that you can speak to the doctor. And I think every caregiver on this chat right here, and I've said it many times should have a HIPAA release form signed for all care for their person with Parkinson's so that you can be an informed member of the team. And doctors do know that people show up in the, in the office, people with Parkinson's doing their best. And very often they ask people to come, you know, make the appointment at a time of day when they're not doing their best. So I would encourage you the next time that you do see your doctor, which I know it always takes months to do this, but schedule it for late in the day.

Darlene:

That would have to be seven or eight o'clock at night, which is not when doctors have appointments, but.

Connie Carpenter Phinney:

Schedule it as late as you can. And maybe ask him to go the appointment unmedicated or ask your doctor to ask him to go to the appointment unmedicated, because they need to see what you're talking about to help you manage it. He's not capable of managing himself. If what your, if he's experiencing worsening symptoms and more discomfort, then he's not going to sleep as well. And, you know, executive function is, you know, decision-making function is highly affected by Parkinson's and by fatigue.

Darlene:
It does seem to be a spiral. Yeah. There's kind of a bit of a spiral going on at this point.

Connie Carpenter Phinney:

Yeah. And it's hard for you and because it's hard for you it needs to be remedied. Okay. And it could be that when you do take more meds, you sometime get more dyskinesia. And that, you know, when you're in more of the on-off cycle variations, Pat or Gail, do you have anything to add to that?

Darlene:

He's had no dyskinesia for several years. He's just, he never takes enough medication to get to that threshold of dyskinesia.

Connie Carpenter Phinney: How old is he?

Speaker 7:

63. Diagnosed seven years ago. So he's still relatively functional, but you know, it's just, it's tough. Like if he can't button his shirt and he needs me to button his shirt and what he really needs is adjusted medications. I'm just like, how bad does this have to get before he realizes?

Pat Donahoo:
Well, they do have shirts that with magnets on.

Darlene:
Oh yeah. We'll get to those eventually. I'm well aware. I just think we can delay that a few more years.

Pat Donahoo:

I mean, I read your comment a while ago and where I got, where the red flag came up for me was where you say the doctor is somewhat passive and follows his lead and so forth. And I can empathize with that.

Darlene:

I've experienced that in a lot of medical settings, you know, we went to occupational therapist and she's like, show me how you put your jacket on. And he puts it on one sleeve after the other. At home, no, never. And she was like, oh, okay. And you know, not to be pessimistic or anything, but at home it's like, oh my second sleeve, I can't do it, can't do it. And I'm walking over and, you know, helping him. And it's no big deal, but why can he do that in the doctor's office?

Connie Carpenter Phinney:

Okay. Listen up. I hate to say this, but I guess we're at the time where we need to wrap this up. Jackie’s saying, yeah, we were just getting to some good questions and I'm sorry about that. But I do think many of you come, yeah, thank you, Darlene, for asking that, that's an important question. And if you, I'd love to hear what happens, I hope you get success with that. Have some success. I know it's hard. And your husband is actually in the age range of someone who, you know, is still experimenting. You know, I mean, we have to honor the person with Parkinson's feeling around taking their medications, but when we can see that it's not working it's very frustrating and there are options and I call it being under- managed when you have, especially if it's a long period of time, so you need, where he’s uncomfortable.

So let's hope you can find better management. And I just so appreciate everyone showing up and you know, just being here for us and for your person with Parkinson's, it's so important. There's a couple of things that I was wanting to just close with. And I didn't say earlier, even in mine, I’ve been listening to a lot of Brené Brown and she talks about, you know, a lot about believing in yourself. And so I hope you can maybe find some of those resources to listen to. Gail always articulates so beautifully how each of us is doing our best. Oh, there you go. Yes. Showing a book, very good. Is that a Brené Brown book? I can't actually see it, but we're doing our best. And if you look for confirmation that you're not good at something, you'll definitely find it. But if you look for confirmation that you're good at something, you'll also definitely find it. So let's go down that road again, that's just this cultivating a little bit more optimism, and that will help you to cultivate joy and then dig into those wonderful moments of awe.

And I think that's where I'd like to leave it today with, with all of you and hope that some of this will trickle out and help you go forward and live a rich life.

Getting Your Ducks in a Row

To download the audio for "Getting Your Ducks In A Row," click here.

You can read the transcript below. To download the transcript for "Getting Your Ducks In A Row," click here.

Judy Kinney (Executive Director, End of Life Washington):

Hi, my name is Judy Kinney, and I'm the Executive Director of End of Life Washington. I was really looking forward to being with you today in a big zoom room and talking about being end of life ready. But I'm also very thankful to be partnering with the Davis Phinney Foundation folks, to record this video and get it to you. And I will work with them to also identify how we can make arrangements so that any questions that you have can be answered. So thanks for your flexibility. And again, I wish, I was so looking forward to being with you this afternoon, but this afternoon, or right now, whenever you're looking at this recording, I want to talk with you about being end of life ready and what that can mean, why that's important and what are your choices when it comes to being end of life ready.

As I mentioned, I come to you from the End of Life, Washington, where we provide free services, education, and awareness, resources like this presentation today, as well as resources that we have on our website, support for individuals and clients. We have over 70 client advisors across the state of Washington that are providing one-to-one support for individuals who accessing medical aid in dying and VSED, which I'll discuss later today as well as very active in the arena of advocacy. So we played a leading role in passing the Death with Dignity Act in 2008, and we continue to work on multiple levels to increase access to end of life choices. Last year, and this upcoming legislative sessions we're looking to really make improvements to the Death with Dignity act as well.

In today's session, there are two parts. The first part is really thinking about or talking about planning ahead, being aware of end-of-life choices, what's important to you. And then the second part really talk through in more detail, what are our end-of-life options within the state of Washington? So I grew up in a family where we talked about things we weren't supposed to talk about. And definitely we talked about end-of-life choices, my mom lived to be 97 and a half. And for the last 27 and a half years of her life, we talked about death and dying and choices. And I kind of grew up thinking that everyone talked about end-of-life choices. And yet that isn't true. And so one of the most important things that we can do to really access the kind of death that we would like if that's available to us is by beginning to talk about and exploring what's important to us.

So you'll hear me talk about in multiple ways, multiple times the importance of having a support team. So it could be a care team, could be a care pod, you could call it different things, but it's both professionals and personal people in our life that support us in making our end-of- life choices. A first good place to begin is to explore what's important to you. We have a values worksheet that allows you to rate what's important to you. There are other value resources, value worksheets that are out there. The idea here is to take time. These are really personal questions that we may, there may be, you'll have people that you care a lot about and you're going to have different values. You're going to want different things at the end of life, and this really, worksheets, whether it's ours or others really allows you to think through what does living well mean to me?

Do I want to be at home? Do I want to be in a hospital setting? Do I want to pursue all choices, all options available to me, do I really want to reduce my suffering? What is quality of life? And again, these are really, really very individual decisions and taking the time to go through a values worksheet is really one of the most important things that you can do. It is, only you can do, and it really provides the foundation for all the other things that I'm recommending or exploring today.

And we raise this because what we have found is that individuals who take the time and who can take the time to think through what's important to me, to talk through that with people that they, that are potentially in their care circle, circle of care, and also document for medical and legal reasons, what's important to them. Individuals, when we do this, we are way more likely to reduce our own and our loved ones’ stress and also have autonomy throughout our you know, living and dying process. So after you've completed a values worksheet, again, whether it's ours or someone else's you know, obviously we've put a lot of thought into ours. You can find ours on our website but there are others. It's the process for you that matters most. And once you do that values process, a next step is twofold is to create a set of advanced directives.

And one is a healthcare directive and this, or some people call a living will. And the next is identifying a healthcare agent completing a durable power of attorney for healthcare. So it's a set of advanced directives. It has these two parts to it that are really important. And the healthcare directive really gives both of these combined, gives directions on what kind of treatment you may want or not want if you're not in a position for speaking for yourself, if you're unable to speak for yourself. And there's a combination of your healthcare directive and your durable power of attorney for healthcare it’s that healthcare agent that makes decisions for you. What we're hearing from medical providers is that in an acute situation, doctors are going to turn to your healthcare agent and say, what do you want me to do? And so who you identify as your healthcare agent is needs to be able to make recommendations that are important to you, that you've articulated in your values and in your healthcare directive that may not be what they want, right? It's may not be what they would want for themselves. And so you need someone who can stand up really in tense situations and say that this is what you want for your quality of life and quality of end of life.

You know, it's important to keep these, your, both your DPOA and your healthcare directive close by. You can share it with your care team. You can have it posted electronically so people can access it. Again, in an acute situation, when decisions need to be made right away, people aren't going to pull out your health guard directive. It really is a legal backup document that supports your healthcare agent and your healthcare provider to make decisions based on what you want. I'm going to keep saying that. You know, when I think about who I've chosen as my healthcare agent, it’s not my best friend, it really is someone for a variety of reasons. It really is someone who I know can, they live close, they're not afraid to speak up on my behalf and they are comfortable doing so. A third part is to consider and evaluate a need for POLST.

So POLST are not, at this point are not recommended or needed for everyone. It is a medical order needs to be signed by your physician, POLST stands for either portable or physician order for life-sustaining treatment. If you have a serious diagnosis serious illness diagnosis, and end stage of your life, you want, this is a medical order that documents your choice around life- sustaining treatment. Again, this is a core choice. You know, am I, are you a do not resuscitate? Do you want to be resuscitated? This is directives. And again, this is your POLST form needs to be available and visible. It's in your home. People put it on their refrigerator. Your doctor, physician's gonna sign this. They're going to keep a copy as well. This isn't for everyone, but you want to evaluate a need for it.

So all of this can get complicated and this slide, I liked. It really like lays out what this process looks like. So if end of life, Washington, if we had our way, all adults 18 and over would complete an advanced directive and identify a health care agent. Obviously, these need to be periodically updated, you know, like our choices, where we are in our life stage, things change, and they are to be periodically updated. When you have a serious diagnosis or serious illness. They need to evaluate a POLST. And again, updating as anything change when they document, these, you want to share these with people in your care team and your physician and your wishes are well-documented.

So in this first part planning ahead, really, again, it starts with what's important to you. What matters to you? Going through a process, a values process to think about what's important to you, what matters. As you're doing this, it's really natural to talk with others about that. It's great to hear what others want to do, what they, how they would do differently. For me, this is really best when it's a conversation. It is hard to do this alone, even though so many of these decisions are very personal decisions. You want, these are things we want to talk about. The more we talk about in the process of talking about values, what's important to you in that process. You're just naturally putting your care team together. You want to talk with your physician about this is what's important to me, and we'll talk later in this presentation, can you support me in what's important to me, right?

Not all physicians can or won’t, right? You want to complete set of directives, a legal binding document, advanced directors for health care directive and choosing a healthcare agent. I want to emphasize again, the importance of identifying and choosing a healthcare agent, because that individual likely is in the position when you can't communicate your preferences yourself, it's that person who's going to be ensuring that your needs and wishes are met and then also evaluating a need for a POLST. So that's planning one, putting those pieces together. And to support you in this section around what's important to me, important to you. This next part is really I want to walk through end of life choices, what's available to you.

Let me get my notes organized here, hang with me for a moment. Great. And when we think about end-of-life options, I want to emphasize that you always have a choice. You and we always have choices at a foundational level. You can accept and refuse treatment at any point in time. You can change your mind, right? There's really important decisions. And our culture, our medical culture really knows how to pursue treatment by any means and as much as possible. We're not as familiar or comfortable or aware or value around refusing treatment or not pursuing all options. Again, you can choose and accept any and all treatment at any point in time.

And that's always true. A next level of choice is called comfort care. Palliative and hospice care are focused on symptom relief, which is often referred to as comfort care. Examples of comfort care could be pain reducing medication, symptom relief, a massage, breathing, could be emotional, psychological support. It's really any and all measures to provide comfort, whether it's physical or emotional, that's associated with an illness that is either being cured or one that is terminal. You can see on that palliative care side that palliative care can be offered at any stage of a disease, even as you are receiving curative treatment. Palliative care really is considered about reducing anxiety you know, and can include reducing depression, anxiety, you know, fear of death, as well as physical pain. Palliative care is often paid by insurance or by individual paying. Hospice care on the other end is provided at the very end stage of life when someone has stopped or is unable to receive treatment and has a prognosis of six months or less to live. Hospice is covered by Medicaid, Medicare and insurance. It can happen in your home, in a facility or hospital, it includes resources for family and the support team, and often comfort care is provided along with medical aid and dying and voluntary stopping of eating and drinking, which are two choices I'm going to talk about next. And so you can see these are comfort care is, can be treatment, but is often, can be provided in conjunction with other choices.

So I want to transition to talking about hastening death, ending suffering, so along with the choice to stop or refuse treatment, you have the choice to hasten your death, to end suffering, enabling you to die on your own terms with autonomy. And if or when you find quality of life so diminished that you may choose these options. These options, I'm going to talk about medical aid, dying and voluntary stopping eating and drinking, also known as VSED, are not for everyone. Obviously, we all have different cultural, spiritual, and philosophical beliefs about death and dying, but these options are available to people within the state of Washington. And we really believe strongly that we want to introduce these options to everyone so that everyone within the state of Washington can make informed, value-based decisions for their own end of life choices. Right? So we're not twisting any arms, or we're not saying what's best for anyone.

We want you to be aware of, know how to access these choices. You know, again, as I said earlier, like we talk about end-of-life choices because our system is so focused on sustaining life and treatments. It's challenging for medical providers to talk with patients about their end-of- life choices because they don't want to be in a position of conveying that they've given up on them. You know, and so it's hard for providers. So oftentimes it is really up to individuals to initiate this conversation with their provider. It's really important way before you need to access any end-of-life choices, to talk with your providers about what's important to you and to identify if they will and can support you because not, not all providers will or can. And so way in advance, you want to be talking with your provider and letting them know this is what's important to me.

So first to talk about I want to talk about medical aid in dying or MAID you may also you'll hear us interchange made with death with dignity or DWD. These are interchangeable. In medical aid in dying allows someone who is terminally ill to control the timing of their death, to reduce anxiety, pain, and/or suffering. Death is inevitable. So these individuals simply choose to die using a medication to have control over the date and time of their death. What we find is that so many will as I mentioned earlier, many will, many people who choose medical aid in dying are also involved with hospice and palliative care or palliative care. We find that there's two statistics that I want you to know. One is that, so we're serving over 600 people annually in the state of Washington. I'd say 95% of the people in the state of Washington come through End of Life Washington for support. And we find that 20 to 30% of people who sign up as clients and go through the process of obtaining the medication don't use it. For many people just having kind of facing all the unknowns that come at the very end of life, having that safety net, or just having medical aid in dying, the medication available to them really reduces stress. That's important.

The qualifications to access medical aid in dying, death with dignity is you need a terminal diagnosis, terminal diagnosis with six months or less to live. You need to be a resident of the state of Washington. You need to be 18 years or older, you need to be capable of self- administering. This is a really important criteria and that's really is a safeguard in the law that protects against euthanasia which is it protects providers and individuals from euthanasia, which is when a provider administers the medication. So with death with dignity, with this law, an individual needs to be able to self-administer, very, very important, and that self- administering can come in a variety of ways, can be orally and other ways, but an individual needs to be able to self-administer. We have, this is where our volunteers and our physicians really help individuals make these decisions, need two doctors who can and will support death with dignity. Of our clients we support, 70% of the people who come to us need help accessing one or both physicians. So we definitely help people with this and individuals accessing death with dignity need to have decision-making capacity, right? So the timing really matters a lot. The disease matters here. So individuals, which I'll talk about in a minute, so individuals with Alzheimer's do not qualify for death with dignity.

Again, this law was passed in 2008. There, currently Washington is one of 10 states, entities, including the district of Columbia who support medical aid in dying. And Montana has a court decision that says, doctors can do this. But it wasn't passed by, like it has been in other states. Washington was a leader when it comes to advancing death with dignity, we were the first state that had initiative before a ballot measure, a bill, a ballot measure for people to vote on, back in, I think it was the nineties. So a leader in this area.

Let I just look at my notes real quick here. See if there's anything that I'm missing. You can see here, we have worked with people as young as 18 and up to 104 years of age, you can see that cancer is a primary diagnosis. There is a waiting period, so there's a 15-day waiting period. There is a very involved process for people to access death with dignity. And oftentimes, you know, because we, facing our mortality is hard. Many people wait till the last minute and are not really able to go through the process that it takes to sign up and go through the steps to access death with dignity. I really want to encourage you, I’m gonna say things over and over again. I really want you to encourage you if this is a, if you qualify for death with dignity, if this feels attractive, just because you go through the process, just because you get the medication, again, doesn't mean that you're going to use it or that you have to. Going back to that first choice, accepting, and stopping treatment, you can change your mind at any point in time.

And I think it's important for all of us when we're thinking about end-of-life choices, to realize that individuals are in control of their choice all the way through. So the choices that we're talking about are very, very patient or person centered all along the way.

Let me take a quick drink here, but as you can see that medical aid in dying is not an option for all people. So when someone does not qualify for death with dignity, someone has a neurodegenerative disease, like Alzheimer's, ALS, Parkinson's included with long trajectories of decline and potential loss of decision-making capacity the end-of-life decisions are more limited, but they are available. And we want to talk about what's available to you. So one option we talk about is called voluntary stopping eating and drinking, or VSED. VSED has been around for hundreds of years, although it hasn't been called VSED. It is a natural death. It's a natural supported death that's legal and is really, really important to have a care team in place. So it's a voluntary choice to hasten your death, it's by removing nutrition and hydration.

So when we're not eating and drinking both, our body’s dying naturally within one to two weeks. Managing this process of dying naturally in one to two weeks, really requires a support team. From palliative care, hospice, medical providers, family members to support this process. Again, someone choosing to VSED is in control of their choice to stop food and drinking food and water and their caregivers are following their instructions. That's articulated in a healthcare directive throughout the whole process, the individual can change their mind. And again, at any point in time, VSED is not a decision to be chosen lightly. None of these decisions are, but it does require tremendous support and a good plan. And it's very effective for people experiencing present and eminent suffering who do not qualify for death with dignity. Again, VSED is a voluntary choice by the person with decision-making capacity, right? So you can see that decision-making capacity is a core protection in both MAID and VSED. For someone making this choice, they're making the choice while they have decision-making capacity, in advance. So it is advanced planning.

You can see that a client suffering from various diseases, such as Parkinson's, ALS, early Alzheimer's, severe arthritis, muscular dystrophy, other diseases, this is a good choice. And there VSED is a, so the last, End of Life Washington has been supporting people with VSED for many years, this past year, we supported 12 people, there’s a growing awareness and a growing level of support for people to VSED. Let's see if there's any other things that I want to say. Let me just look at my notes here, again, when it comes to VSED, I just want to go back to this for a moment. So for both medical aid in dying and VSED, we help you through this process. If these are processes that you want to explore, again, many people call us, we provide support and consultation. Some people become clients, some people don't, and all along the way, you get to change your mind. You're always a decision maker all along the way.

So when it comes to end of life choices you know, you can see why we started with what's important to you. What matters, how do you want to live until your last breath? Like what's important to you, how that builds into a health care directive, healthcare agent, and then understanding what your options are, kind of reinforces or informs particularly those documents. So you always have a choice of stopping, continuing treatment, medical aid in dying is a choice, as well as VSED. We want you to, so not all hospitals or providers will support your decision to access medical aid in dying, or to VSED. We have access to a team of providers who do across the state to support you with your decision.

We have client advocates, we have support people. We have relationships with hospice. So, so we also want to be on your team to support you in your process. So in review, going all the way back, that first act of what's important to me, how do I, what does quality of life mean to me? And talking with documenting that and talking with people about it, documenting in a values worksheet, and also documenting legally and a healthcare directive, director of power of attorney for healthcare. And it's really important talking with people and sharing those documents is how you create your team.

This slide, I like this slide because it includes both the formal and informal lists of people who's who you need to work with to support your end-of-life choices. So you can see that advanced directive, POLST, refusing or stopping treatment, hospice, palliative care, death with dignity, VSED, these are choices on the left. Here in the middle column is the required facilitator. So you need notary, two witnesses. Some things need to be, your doctor needs to sign off on and improve. Death with dignity requires two supportive providers. And we really encourage to have medical doctor hospice involvement in voluntary stopping eating and drinking. Hospice gets involved with VSED after your, after you stop eating and drinking whether you have a six- month diagnosis or not prior to that, as soon as you stop eating and drinking, you become eligible for hospice.

It's important to put that in place in advance. But when you stop eating and drinking, you become eligible for hospice. Other supports include ourselves, friends and families, other healthcare providers, death doulas, spiritual leaders. It really helps to create a team care pod, we all call these things different names, but it is about, although death is one of the most individual things that we do having others with us and supporting us is really important and really a key motivation, early motivation for End of Life Washington came from individuals who didn't want anyone to die alone. And we support a significant number of people without family every year. We become people's families.

So we want you to check the boxes, really know what's important to you, help using that, to create a support team, identify your healthcare directives, complete your health care directives, evaluate the need for POLST and most importantly, discuss and provide copies of your advanced directives to your core team. So a lot of information, there's no test. You never have to understand all of this. We want to be a resource to you at any point in time. And if you go to our website, so end of lifewa.org, we have a host of resources that you can access. There's videos, there's documents. We have healthcare directives, you know, we have support for physicians. If your doctors, you know, is supportive of you, but doesn't understand the process we can support your provider. We get, another way is to call us. So we get over 1500 phone calls a year. We will talk with you and consult with you. What's important, what you're wanting, what you're needing and help to connect you with the best resources. You don't have to figure any of this out on your own. We want to be here for you. And again, all of our services are free of charge.

So you heard me say earlier that I would love it if everyone completed a health care directive and understood their end-of-life choices. And again, this is about quality of life, quality of death is about quality of life. And so we want everyone to know, everyone to be able to access, and so help us find people to educate, whether it's friends, community groups, organizations that you're involved with, let us know, help to connect us with other people so that they can also get this end-of-life ready campaign, this end-of-life ready presentation. We do tailor the presentation for the group. So let us know, and that's it. I wish we could talk and ask questions. Again, I will collaborate with that Davis Phinney Foundation, folks, staff, to identify how we can get some, your questions answered.

So thank you so much. I guess the other thing I want to say is an easy way to stay in touch with us is to go to our website and to sign up for like, stay in touch, we send out a monthly, mostly a monthly e-news that we know what's happening, how to get involved, changes in laws, what's happening in other states, we tell stories. So you get a sense of things. We also have an active, End of Life Washington is active on Facebook as well. So thank you so much. And I look forward to connecting with you further.

To download the PowerPoint Slides for "Getting Your Ducks In A Row," click here

How to Step Away from Parkinson's

To download the audio for "How To Step Away From Parkinson's," click here.

You can read the transcript below. To download the transcript for "How To Step Away From Parkinson's," click here. 

Polly Dawkins (Executive Director, Davis Phinney Foundation): Hello folks, as you're joining us. Hi Barb.

Barb Ankenman (Care Partner): Hi Polly. Hello everyone.

Polly Dawkins:

Welcome back. So today is a panel, a panel of Barb and Polly, and this summer, Barb and I had a lovely chance to meet here. She was in Boulder and we had a chance to meet and over coffee, outdoors and the beautiful Colorado, and we have a chance to talk about her experience as a care partner to her husband, Dale, and really some of the strategies and tips that she and Dale have used and she's used for herself to really not make Parkinson's the center of everything. And we got into deep conversations about volunteerism and other ways to get out into the community. So I thought we wouldn't necessarily recreate that conversation, but we would have a very similar conversation and welcome you all to that. And maybe get ideas that you all could share about things that you do to step away from Parkinson's and not make Parkinson's the center of every single thing that you do. So, to start off, for those of you who may not have heard Barb on the care partner panel, Barb, would you mind introducing yourself? Tell us a little bit about you, maybe about your family, where you live, how long you've been a care partner. And again, if you'd like to be on video in the audience, please feel free to be on the video.

Barb Ankenman:

Okay, well, hello all. My name is Barb Ankenman. I live in the Northern Kentucky area right outside Cincinnati, Ohio, and my husband Dale was diagnosed with Parkinson's almost 20 years ago at the age of 46. And he also had, about five years in, he had DBS surgery. So we have gone through that. And so, likewise, I've been the care partner for 20 years. We really are in this together as I'm sure you all understand throughout it. And you know, I think we've had such a wonderful amount of information already today. What a day? Something we have heard a lot about and Polly was introducing about the need to step away from Parkinson's because you know, I don't know about you, but I feel sometimes it's every minute of the day, every action we take, every decision we make, one way or another seems to revolve around Parkinson's and it's that way for us as caregivers, it's also that way for our partner who has the diagnosis.

And we found, even though that can be a 24/7 role, we do need, we need an identity, a purpose, some relevancies, some accomplishment, that has nothing to do with Parkinson's. We need that for ourselves, and our partners need that also. So I think we're here today to talk about strategies. The one thing that Dale and I have found works for us both individually and also together has been volunteering out in the community. It gives us a chance to focus on other people, interact with other people, focus on maybe challenges and issues that don't have to do with Parkinson's, allows us to give, be relevant and feel good about ourselves as we help others too.

Polly Dawkins:
What are some of the things that you do? Tell us a little bit out of your volunteerism.

Barb Ankenman:

Okay. Something that I do myself is I volunteer at a women's prison and I do a ministry for women's prison and help them as they're in that very, very dark place, find hope for themselves and forgiveness. Forgiveness is a big part of it, just forgiving, not only other people and circumstances that have often caused them to be where they are, but to forgive themselves. It's been very, very worthwhile and eye-opening to me also, because I speak to these women who are literally in a prison, their movements are restricted, they cannot do what they want to do when they want to do it necessarily. And it also made me understand Dale and his Parkinson's as well because someone with Parkinson's and sometimes us as caregivers, we're in a prison also. It's a different prison, but it's a prison where we can't always do and go and be what we want to do and go and be and you're caught up in it. And you do have that feeling of hopelessness. So that's been the great one that I do. And that has taken me out of not only taken me out of Parkinson's, but also at the same time kind of, given me insight into it as well.

Polly Dawkins:

Hmm. That's an interesting analogy. How do you do that Barb and feel comfortable leaving Dale?

Barb Ankenman:

For we're very blessed in that he is still very mobile, still very much able to care for himself for periods of time. So we are able to do that. Sometimes when I've done it will be for a weekend though. Oftentimes I'm just going up there for short periods of time, but sometimes we do what is like a weekend retreat there within the prison. And during that time I'm looking for friends and family who are helping to check in on him, be with him. And they help make that happen there. It's finding those people to support you and what you're doing, and Dale understands how important it is for me. So he supports it. From that standpoint.

Polly Dawkins:

I'm just saying we're welcoming quite a few other people are joining this conversation as you're joining, Barb and I are chatting about ways to step away from Parkinson's. And she's speaking specifically about volunteerism in doing ministry in a women's prison.

Barb Ankenman:

We also have, Dale and I will do, we'll volunteer together at different places, and this has taken a different, it's changed over time as some of his physical abilities have lessened. We used to do a lot of very active ones, but more recently with COVID, we started volunteering at a local food bank where, if you have Kroger's and click lists, you'll understand it, we're loading the food into people's cars, they pull up and there's, you know, very little contact, wear masks, and we're taking the food for them and loading them in the cars, at the same time, able to, Dale will usually tell them a pretty stupid joke and get them laughing and they get a little interaction. We get a little interaction. That has become more difficult as Dale's balance became more challenged.

So we now look at different ways that he and I can do something together and volunteer. We're getting involved with transporting rescue dogs. So oftentimes they need to be taken from out of the shelter and into a foster home. And there may be some traveling involved with that. So we will transport the dogs, rescue dogs. And Dale is also looking at a volunteer opportunity with, he's a veteran with the, oh, I'm drawing a total blank, the O S, at the airport where they have a little welcome area for veterans.

Polly Dawkins:
Ok. Yeah yeah yeah.

Barb Ankenman:

And so he can talk with them, again, getting some social interaction and just getting out of that Parkinson's for a bit.

Polly Dawkins:

So rescue dog transportation, delivering groceries for folks during COVID, volunteering in the women's prison. That's a lot of things you're doing.

Barb Ankenman:

You know, the prison ministry, I mean, that can be as little as an hour a month a few hours a month, it's, you know, little bits and it allows flexibility with the transporting the rescue dogs, you know, they'll put a word out, we need a volunteer for this. And so you can see if that fits your schedule or how you're doing that day. So you're not totally locked into it, but you're able to take advantage of it.

Polly Dawkins:

Great ideas. I want to open up to those of you in the audience. Does anybody have ideas or things that they are doing or to volunteer or step away from Parkinson's that you want to chat about with us? And as I'm seeing those of you join, I understand that one of our presenters for the breakout session didn't show up. So we will for sure have that session and deliver it some other time. Apologies for that. Feel free to take yourself off mute and put your video on and join in the conversation.

Pat (Audience Member): Polly?

Polly Dawkins:
Hi, Pat. Welcome.

Pat:

I do volunteer as well. I've volunteer at the local historical museum here, but I had to time my volunteering, we've I talked to my husband about it and we chose a time when he is normally napping. So right after lunch, I get in my car, I drive downtown and I've got a couple of hours when I can be away from the house, know that he's going to be okay. And one of the advantages is that I bring back a different perspective. So it gives us something more to talk about when we're at home, but I wanted to ask Barb. One thing I had to overcome was a feeling of guilt because I was leaving him at home and he didn't have anything to engage in.

Barb Ankenman:

That absolutely is nice, I still get those twinges because you know, I'm out and about talking to people, seeing people. And one, he's just so supportive of me and he understands my need to do that. And that's where you can have some real honest communication between you of what you need to be a better caregiver for them and a better partner for them. But that's also why I've searched for opportunities that we both can do. You know, again, with the like the transporting rescue dogs. If he's not able to drive, I can be the driver. If he's having a tough day speech wise, you don't have to have a conversation with the dog. And we can get out there and still feel both of us in, in for him, particularly that he's doing something with a purpose he's helping out he's being relevant. So I do search for those opportunities that we can do things together. But we do have to consider the physical limitations there.

Polly Dawkins:

And Pat, if you are volunteering when he's resting, how do you ensure that you do as Connie was suggesting earlier that you rest yourself?

Pat:

You know having something to do, well, and I only volunteer two days a week. I'm able to get away. So on those other days, I do sit down, and I have some quiet time for myself during his nap time, if you would. So that's, it's okay. But I love the idea of Barb and trying to find something we could do together. It's just difficult to find those opportunities sometimes and then to convince him that it's a good idea. I am going to look for that. Thank you for that suggestion.

Barb Ankenman:

Yeah. And I think once someone gets out and does it and sees how rewarding it is, it's kind of like exercising at the gym. A lot of times, you just, you really don't want to go, but once you get there, you're glad you came. So hopefully that'll be helpful in getting them there and get a taste of it.

Pat:
Thank you.

Polly Dawkins:

Thanks Pat, for those ideas. Anyone else have ideas of either how to get out into your community, how to get away from Parkinson's or perhaps how to get your person with Parkinson's out from having Parkinson's being focused every day?

Catherine (Audience Member): I'd like to say something.

Polly Dawkins: Hi Catherine.

Catherine:

Hi. My husband, COVID really threw a wrench into a lot of different things, physically being present, like volunteering. But what I suggested when COVID started is that my husband call five friends every day, because they were isolated. And I thought that it would enable him to reach out and touch somebody else's life. So it was kind of like his own personal ministry and you know, it's amazing. He really took it to heart and he called, oh my gosh, I can't even tell you people he knew in high school people that, you know were in our wedding. I mean, people that, you know, we, our son had grown up with in school. I mean, he just connected with all these different people and, you know, it was, it really was a wonderful thing because he would come to the dinner table then and talk about the conversations that he had. And, you know, it was just a real, you know, it was such a wonderful experience, even in the midst of COVID. So there are opportunities even with COVID.

Polly Dawkins:

That’s such a lovely idea. Catherine, how, I know so many people talk about sort of overcoming that lack of inertia or that initiative to pick up the phone. Did you and your partner, your husband struggle with that piece of it, or did he immediately take to this idea?

Catherine:

Well, my husband is the more personable of the two of us. So he actually was like all gung ho for this since the very beginning. And, you know, it's really been so interesting because we, he has friends even that have Alzheimer’s and he checks in with them all the time. And so, you know, he may be the only call they get, you know, I just think it's really you know, it's helped him and it's helped other people, but he didn't seem to have any reservations about making the phone calls. And maybe it was because, you know, he didn't have a chance to see people on the street like he normally, we used to take a walk all the time down to the avenue and he would, you know, be like the mayor of the town saying hi to everybody. So you know, for him to pick up the phone was not that big of a deal. He just took to it, so.

Polly Dawkins:

That’s great. I think that's not everybody's experience. You're lucky that he was able to do that so readily.

Catherine:

Well, then it took the focus off of him and put the focus on somebody else. You know, that's the beauty of volunteering too, is that it takes the focus off of yourself and we all are healthier when we're focused on somebody else rather than ourselves so.

Polly Dawkins:
Exactly. Hi Jeannie Quam, I see you've gone on video and off mute. Welcome.

Jeannie:

Thank you Polly. It's good to see you. So I think Polly, you may know, but the community may not know that my husband loves to play his instruments. And so our community, we live on a lake and so every Friday evening, he goes out and gives a concert on the lake that other members around the lake can hear. And that gives him something to look forward to. And he gets applause and cheers and other things immediately. But then when we have opportunities to be what I would call face-to-face, there are opportunities for more feedback on how that's going for him and connections, oh, you're the guy that plays the saxophone, you know, that kind of thing. So it gives him a lot of stuff. And as time has gone on, I am involved in making sure that how he proceeds to the lake is safe and things like that.

But then when I'm in the community, then I also get some feedback about what they have enjoyed as far as that goes. And then we, we also both volunteer at our church to play in the band and the community there. So that is a big part and we have felt safe lately to get back involved in our church from that standpoint. So that's really nice as far as some other involvement. So getting involved with people, the other thing is when he has responsibilities and maybe it's not a good driving day for him, I'll go along and then in whatever community we happen to be in for that volunteering position, I’ll check in with friends that I haven't seen for a while. And so that gives me some opportunity to do that visit in person like Kathleen was saying, Catherine, sorry, was saying about making the phone calls and checking in with friends.

Polly Dawkins:

Yeah. Somebody is asking the question. Deborah is asking the question in the chat about a really tough topic. I don't know if anybody in the audience or Barb or Catherine or Jeannie have suggestions. She says that her husband is really limited in his ability to even communicate. He's got Parkinson's disease dementia with dementia. He's really hard to understand and to communicate, and she doesn't have family. She doesn't have friends who can help, and she doesn't have a lot of money to hire help. Does anybody have any ideas for Deborah's, how she can get away, how she can help provide extra care and have a little time off, feel free to unmute yourselves or Barb if you've got ideas.

Barb Ankenman:

Yeah, I would search for maybe a senior care association where they may have day care in different senior centers where possibly she can get a respite if they could care for him or send someone in just so you can have lunch with a friend.

Pat:

In our area we have, and I know there are throughout the nation area agency on aging and disabilities, and they often have small grants for respite care, but they do have care, not provide, well, they have care providers, they can share lists of information about, but they have case managers who can help, especially folks who are on limited incomes. So I would really recommend looking into your regional or your local area agency on aging and disability to see what they might be able to help with.

Polly Dawkins: Thanks for that, Pat.

Iris (Audience Member):

It is the communication that is really a problem for us. Les has adjusted to be having Parkinson's. He’s had it for about I suppose, 16 or 17 years. And I just, I'll put myself back on video again. Yes. I can't get back on video, but anyway, our problem is communication because his DBS that he had probably, I don't know, eight or nine years ago, affected his speech. 1% of the people that have DBS or the brain stimulation for those of you who aren't familiar with that term. So he cannot speak clearly. And so I need some help with that because if he could speak clearly, I could understand what he needs when he wants. I'm having to consider putting him in or having him placed in a home after the holidays just because it is so frustrating for me to try to communicate with him. So if there's any ideas of what can happen with the stuttering and fast speech, after that, I would be very grateful.

Jeannie:

Has he had any speech therapy contact or did anybody ever suggest a communication board of some sort that would help with that?

Iris:

He has speech therapy every day and and his coordination isn't good enough for a speech board.

Polly Dawkins: That’s challenging.

Barb Ankenman:
Very, very challenging.

Iris:

Now, you're hearing my Alexa and that has helped us greatly in his medication. He takes the carbidopa levodopa every hour cause we're trying to be our own pump. And that, so that's really helped. So that is one tool that we have used and really helps us. We have Alexa that reminds us to take the medication every hour.

Polly Dawkins:
That's a great, we heard her in the background.

Catherine:
Yeah. I just put something into the chat about LSVT loud. Have you heard about that?

Iris:

Oh, yes. We've had that too. We live in a remote part of Iowa. Lamars, Iowa, the ice cream capital of the world, but we do have very good healthcare here. So we've done everything that we can find other than we don't have a local boxing program, but with Iowa State University, we do have a boxing once a week on zoom. Zoom has been wonderful for us. We do yoga twice a week with Peter Lynch. That's a free thing for Parkinson's. So that's the Iowa State. Iowa State has a zoom every day at two with something singing or whatever. So we're doing what we can, I think, but there's, the last six years have been pretty tough.

Polly Dawkins:

Zoom certainly has enabled all of us to tap into resources where we live to access things, especially as we were talking about things that are outside of Parkinson's, but even for your person with Parkinson's accessing classes and therapies that you wouldn't otherwise have, but there are many other church groups that are meeting and singing groups and quilting groups that are meeting on zoom if you have a hobby like that to, if you can't get out of your house, if that's part of the challenge.

Barb Ankenman:

And sometimes if you can't get out of the house, is there something you can do in your house? Can you invite others over, friends over to do a book club, you know, who aren’t going to care if the house is neat, or, you know, something like that, but you know, perhaps there's an activity you can engage right there and bring others in.

Polly Dawkins: That's a good idea.

Catherine:

You know, there was a group that was in the bay area called the hummingbird project and they used to do travel videos. And they could, they went to different countries, and it was to help people that were in Alzheimer's or dementia go back to a place that they, you know, when they traveled, when they were younger. And we went to one with Ireland and another one in Norway and they integrate music, stories, language, and then pictures. And sometimes it just stimulates memories for the person. And it was something that you could just do at your computer.

Polly Dawkins:

Yeah. I've heard about virtual tours of museums that you can do. Barb, you were mentioning when we met this summer that even during, or especially during the last 18 months during COVID time, it's been hard to get out and do some of the volunteerism things that the prison hasn't been necessarily open. You've done some of that on zoom, some of the ministry on zoom. But I love the idea that, you know, delivering rescue animals and delivering groceries, I think that's such a creative idea of how you can continue to get out together and do things even if your options are fairly limited.

Barb Ankenman:

That was, that helped us get through COVID, that absolutely did. Cause you can do some of those things with very minimal contact and and do it safely, but still get out and about in that way and get some interaction. We at the beginning of COVID, I mean, what, the other thing we did was walk our dog and we've had to be more flexible with that. I mean, it's, as you know, with Parkinson's, things can change very quickly and we're at the start. We could hike with our dog, two or three miles, and now on a good day, a really good day, Dale may be able to do a mile, but more often than not, I'll be walking the dog, but that again, just getting out and walking the dog even just staying in the neighborhood. So I'm not gone from the house. I know he's safe for the next half hour and I can get outside, walk the dog, maybe see some neighbors, and certainly feel the sun and the wind and enjoy the changes in seasons like that.

Polly Dawkins:
Yeah. Hi, Susan, did you have a comment?

Susan:

Yeah. Just to support Barb's volunteerism. I have volunteered for several years with an organization called hospice Niagara. And so I live in Niagara on the lake in Ontario. That's why it's called Niagara. And part of our besides taking care of end-of-life clients, we also do bereavement programs for those who've lost someone that they've loved. And one of those activities is a weekly grief walk. And I volunteer for that and I have found it extremely helpful to be able to listen to other people's problems and be empathetic to them during COVID of course now when the phone starts ringing let me, so part of the problem has been that we haven't been able to do the grief walk, so we've done telephone counseling and I've learned more about people dying of cancer and heart disease and other things than Parkinson's, but it's kind of even though it's somewhat related, it's taking me away from my own and from my husband's actually disease and I have found it very rewarding quite frankly, and comforting.

And so this has kind of gone on to even include some family situations this year. So I've started to become me the counselor and of record, I guess. And what I've noticed is that I've developed a really close relationship with the care partners. And when I kind of send out good messages from the universe to people, I have more care partners on my list than I do people with issues just because I can synthesize more with them. And, and as we all know, most people don't know what you're doing anyway or what it means. And when you are one, you certainly do. So anyway, this has been wonderful. I usually sit in on the monthly meetings and I have found them very interesting because sometimes I'll go and say, oh, do I really need to do it today?

And blah, blah. And then there's that little comment that Gail makes, or Connie and you think, oh, wow. I had a question. I didn't know it, but I've got an answer. Anyway. So thank you for that. And thank you for today.

Polly Dawkins:

Oh yeah. Susan, thanks for your comments. Quick question for you. How did you find the grief walking, that organization and get involved in that?

Susan:

Well, you know, it's interesting when I retired, I started to do a lot of volunteer work. Most of it was for cultural, theater and whatever. And I thought, well, this is great, but you know, other people could do this. And I at the time I thought, well, I'd really like to do something where I could maybe touch people and maybe make a change in somebody's life. Well, little did I know because my husband hadn't been diagnosed that time, that the life for the person I might have been touching was closer to me than I thought. At any rate there was a lot of training involved because you really need to be able to deal with people's you know, whether they're nearing the end of life or they're, they've already gone through that process. But what I really learned was it's more about listening and I don't have to give a whole lot of advice. I just have to be there and maybe ask some questions but try not to say some of the obvious things that are totally meaningless, it's about listening.

Polly Dawkins:
Yeah. It's such a good point.

Barb Ankenman:
It is and as we touch others and help others, it always helps us. Then it brings it right back.

Susan:
It really does.

Polly Dawkins:

Yeah. Thank you. Barb, how did you originally get involved in the ministry, in the women's prison?

Barb Ankenman:

That was through not directly with my church, but through a a group of women I knew through just a religious organization, and I'd heard about it, and I'd thought about it. And I always said, oh, I'll do that sometime. I'll do that sometime. Wasn’t sure, I guess I was kind of putting it off, but then I had a good friend who was doing it and she said, come along with me, try it out. And I was hooked. It's actually an organization that's throughout the country. It's Kairos Center National Prison Ministry. They have it for men and for women and it's throughout our country. And in 14 other countries around the world they've been around.

Polly Dawkins:

Would you be able to put that in the chat? So if others are interested in that work, they could, or it might spur ideas for them about ways they could get involved in something that's completely unrelated to Parkinson's, but super meaningful.

Barb Ankenman:
Absolutely. Will do that now. Thanks.

Polly Dawkins:

And speaking of chat, I'm gonna pop the main zoom link to go back to the main webinar as we close out here in about three, four minutes. Well, probably three minutes. We'll close out. I'll pop that in there. So you can just click on that and go back to the main webinar. And we'll have a really quick wrap up there before we do that, I want to see if there's anybody who has any other comments. I see such lovely conversations, people helping one another in the chat here with ideas on respite care and all but do you all have any ideas or comments for Barb or for each other about ways to step away from your day-to-day role as a care partner and perhaps get away from Parkinson's.

Catherine:

I like to go into nature. You can see by my picture, I go to Fioly which is near close to us. It's a, I've a membership there. And just to kind of go down there and just take a walk. I try and arrange to have somebody with my husband, and then I go just for a couple hours with you know, a girlfriend or our son, or, you know, just something like that and just the whole change of venue. It just, it resets my mental and emotional state. So that I'm that I remember who I am.

Polly Dawkins:

That’s so important and the research around nature and nature's impact on us as human beings is so compelling and strong. There's a book written by Florence Williams called The Nature Fix. And it’s just such an important part of our every day and the other topic of getting yourself into sunlight every day and reset your clock in the morning, your circadian rhythm every day in the beginning of the day, to get that natural light to reset your day, tells your body it's time to have a new day, and perhaps reset your emotional state as well.

Catherine:

That's exactly right.

Polly Dawkins:

As we're wrapping up here, I have gotten a message that the, if you were hoping to see the presentation on “Getting Your Ducks in a Row,” the presenter got her time zones mixed up. So currently she's doing that presentation on zoom to know audience, but so that it's recorded, and we will share that with the show notes today or at the end of the session, probably close to two weeks from now we'll send out everything to everybody. Here's the link to, oops, let me see if I can get this link into here. If you'd like to go back to the main session, I'm going to click on this here, put it in the link. Sorry, put a link in the chat for you, bear with me, and we'll just be there with Connie and everybody and wrap up for the day, probably be five minutes. So if you'd like to come back and say goodbye and get some last-minute resources, we will see you there. I'm going to end this zoom by thanking Barbara for sharing her experiences, and at least getting this conversation going. I'm hopeful you've walked away with one or two things that you might try, suggestions that Jeannie or Catherine or Susan or others had, try out some new things, thanks to everyone for giving each other ideas in the chat. Barb much gratitude.

Barb Ankenman:
Thank you for involving me.

Polly Dawkins:
You're welcome. Take care.

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