[Webinar Recording] Living with Parkinson’s Meetup: Q & A: August 2022

Living with Parkinson's Meetup Q & A August 2022

During this session, we decided to go through current frustrations and see if the panel and the audience could come up with some solutions together. Watch the video and read the show notes below.

*Important Note: The YOPD Council changed its name from YOPD Council to “Living with Parkinson’s: Everything you’ve ever wanted to know about Parkinson’s but were afraid to ask.” We are excited about this change and hope it will allow us to reach more people, not just those with YOPD. 

Living with Parkinson’s Meetup: August 2022

Read the transcript below or click here to download.

(Note: This is not a flawless, word-for-word transcript, but it’s close.)

Melani Dizon (Director of Education, Davis Phinney Foundation):

Hello everybody and welcome to Living with Parkinson’s Meetup with the Davis Phinney Foundation. We’re super happy to have you here. I was- My name is Melani Dizon. I’m the Director of Education at Davis Phinney Foundation and I’m here with this amazing panel of people. Okay. Let’s start with some introductions for those of you who are new or haven’t been with us for a while. Let’s do that. Kat, can you start us off?

Kat Hill, RN, NP (Ambassador, Living with Parkinson’s Panelist, Davis Phinney Foundation):

Sure. Hi, I’m Kat Hill and I am a Davis Phinney Foundation Ambassador, and I am currently in Sisters, Oregon. I am living with my husband and small dog in an Airstream trailer, and I used to be a nurse midwife, delivering babies, and directing a busy inner-city hospital practice. That’s me today, tomorrow, maybe something else.

Melani Dizon:

Thanks, Kat. Tom?

Tom Palizzi (Ambassador, Living with Parkinson’s Panelist, Davis Phinney Foundation):

Hi everybody. I’m Tom Palizzi. I’m from Denver, Colorado. I’m an Ambassador for the Phinney foundation and have been for a number of years, I wish I was following around Kat and her camper, but I’m stuck here in Denver. Thanks.

Kat Hill:

I wish you were, too, Tom.

Tom Palizzi:

Yeah, that’d be fun.

Kat Hill:

Yeah.

Melani Dizon:

Sree?

Sree Sripathy (Ambassador, Living with Parkinson’s Panelist, Davis Phinney Foundation):

Hi, I’m Sree. I’m a Davis Phinney Ambassador and I have Parkinson’s disease.  Yeah, I’m not sure what to say, but yeah, I have this lovely bottle of peach tea with me, because I’m all dehydrated. So, make sure you’re all hydrated in this hot weather.

Melani Dizon:

Nice. And Sree, where are you calling in from?

Sree Sripathy:

Oh, California. The Bay Area.

Melani Dizon:

Okay. Awesome. Hi, Pam Quinn. Glad to see you here. Heather?

Heather Kennedy (Living with Parkinson’s Panelist, Davis Phinney Foundation):

Good to see so many names here popping up. I just saw Pam Quinn and some other friends of ours. I’m Heather Kennedy. I work as an advocate and an activist for Parkinson’s. I’m passionate about this, any kind of education or any kind of information I can put out there., I’ll use whatever I can to just get the info out there and pass the mic along. And we’re just so glad you’re here today. This is really exciting, and I’m honored to be representing the Davis Phinney Foundation because I have something to tell you about this organization a little later

Kat Hill:

Dun, dun, dun.

Melani Dizon:

Heather knows how to keep you hanging. I love it. She’s a writer. Can you tell? Okay, so I was going to ask our panelists first, but I think I’m going to ask everybody in the chat first. We would love to know what is your greatest challenge that you’re facing right now. What is your greatest challenge? We have, I’m going to have the panelists answer that as well, but I’d love to know from you guys. We want to- freezing. Okay, great. Yeah, we want to get a sense of what’s really important to you and what is- bowel incontinence. Great. Balance, yes. Voice issues. The depression aspects of PD, discrimination in my industry. Interesting. Feeling hopeful. Mobility, apathy, memory, disconnected from social groups, memory. Oh my gosh. So many things. Sometimes

Kat Hill:

Heat.

Melani Dizon:

Oh yeah.

Kat Hill:

Heat I saw, too. The weather.

Melani Dizon:

Yeah. Yeah, for sure. Off times, constipation,

Heather Kennedy

Dystonia

Melani Dizon:

Concerns about providing for my family. Absolutely. Levels of energy change throughout the day. Loss of taste, smell, humidity. Great. Okay. We have so much to talk about and I would love

Kat Hill

All in an hour.

Melani Dizon:

We’re going to get it-

Kat Hill:

All in an hour.

Melani Dizon:

We’re just going to figure it all out. So, panelists, based on this, is there anything you want to start with? Because I feel like you guys are going to have a lot to say, and I think people on the chat and also don’t be afraid to share yours in experience and any tips and tricks that you have in the chat with people because we save the chat and then we share that information. And so, people learn a lot from being in the chat. Yeah. Heather?

Heather Kennedy:

I can pick up on something that I just saw: the impact on the care partners. I just want to say for the record, we talk a lot about how Parkinson’s impacts all of us and we’re all acutely aware that this disease affects everyone around us, especially the ones that we love the most. And it is, we didn’t volunteer for this. I mean we did for the panel, but we didn’t volunteer to have Parkinson’s and we do our best to manage, but communication is going to come up a lot in our talk today. So, I just wanted to add that in that we really appreciate people here that are here to support those of us with Parkinson’s. Thank you.

Kat Hill:

Yeah. I wouldn’t mind tackling the one that I saw about heat and tremor and part of what I’m dealing with personally. First off, I’m not going to have any perfect answers for anybody, but what I’m learning is that I just don’t regulate my body temperature well at all, anymore. And traveling around and being in different, slightly different microclimates, I’m trying to learn how to take care of myself and my symptoms when I can’t control the weather, which is all the time. So, and part of what I’m learning is that I just can’t be in the hot heat for very long in high temperatures. We’ve had some moments where we haven’t been able to plug in our Airstream, so I haven’t had air conditioning. And what I found is that I get almost heat exhaustion really quickly.

I sweat; I feel faint, I, and it’s frustrating because, you know, I’m working hard to not let Parkinson’s rule my life or to be defined by that, but then to have such a profound, physical reaction to something that I didn’t use to have. I mean, I swam swim team for years growing up, I grew up in the hot Central Valley in California, and literally, I am brought to my knees by the heat, and then it’s hard to recover from. And so, I’m trying to learn some ways to get creative about planning for that. One of them is we just are going to have to travel places where we have electricity and can plug in or I’m going to need to spend the hottest part of the day somewhere in air conditioning or in a pool or by a river that I can dip my feet in.

And so, I’m having to change and pivot my life a little bit in the moment, place to place, to do that. And that’s hard. That’s some giving up, that’s some loss that’s different than I thought we would be out traveling. So, there’s some sadness, but I also think that it becomes really clear that it’s not comfortable and sustainable to be out in the heat. So, and all my symptoms are worse. I tremor more, it takes me two days to recover, my dystonia. It’s almost like my meds don’t work as well when I’m fighting that hard to regulate my temperature. So even though I can hydrate, put water on, you know, do all the safe things. I mean, I’m a nurse, I can lay down and put my feet up and prevent myself from fainting. But it’s a little embarrassing to do that in the middle of a campground, you know, so anyway, I’m learning a lot. It’s humbling and brings me to my knees.

Tom Palizzi:

It’s all about adjustments, right?

Kat Hill:

It’s all about adjustments and the pivot. I’m going to quote our dear friend, Kevin, you know, pivot, but not falling is my hope.

Tom Palizzi:

I have a quick question for you, Kat, how long has it been that you’ve been experiencing this?

Kat Hill:

So, I will say it’s gotten progressively more acute. In other words, my window of tolerance has gotten smaller and smaller the last few years. I’ve been living in a house with the ability to switch the temperatures pretty easily. So that makes me not notice it as much when I’m outside a lot more. It definitely has been more acute the last couple of months, in the heat when it got really hot. Yeah. Yeah.

Tom Palizzi:

It’s been with me for a long time, I think.

Kat Hill:

Has it?

Tom Palizzi:

Yeah. I found the first thing that I was unable to do is to regulate my body temperature. It’s been-

Kat Hill:

So, did you sweat more? Or how did, how did you know that? Yeah, so that started-

Tom Palizzi:

Profusely. Yep. That started early. And I can’t, I really have a tough time regulating my body temperature, which is, causes stress and all kinds of stuff. And like all the symptoms just expound on themselves and just gets worse and worse and worse. I’ve learned how to cool my body.

Kat Hill:

Does it happen in the cold, too, for you, Tom?

Tom Palizzi:

No, unfortunately not. It doesn’t happen much in the cold. I don’t have much trouble keeping my body warm. It’s a lot. I think it’s a lot more difficult to cool your body than it is to keep your body warm. Of course, I don’t go, I don’t ski much anymore and stuff like that. So, I’m not out in it. And the humidity racks up it, that makes it worse. It compounds it big time.

Melani Dizon:

Yeah, I think Kat and also, I mean, just, I mean, obviously we can’t control the weather no matter what,

Kat Hill:

And trying.

Melani Dizon:

But being global like you, yeah. You know, you just have to be in- you’re in the elements all the time. Like even if you’re, you know, can confine somewhere that you can go, you know, you’re still dealing with that. And if it’s, you know, it could be a half an hour too long and then you’re not doing great. Yeah. We had; we were talking, I can’t even remember where I was hearing this. I think we were talking about it yesterday at work, but, you know, they were talking about how in super, super hot places, Dubai, everything like that, they drink hot tea when it’s a million degrees and that’s something that works for them. So that sounds awful in my opinion, to drink hot when it’s really hot out, but that’s a strategy that people have used. And then also they say covering up is actually, you know, counterintuitive, but it does, it, it helps if you have like a lot of, especially like those light SPF, like long white shirts, white things like that. Yeah.

Kat Hill:

Like, yeah.

Tom Palizzi:

There are techniques to cool your body, you know, that you can use, like, I’ll, I’ll have a cold rag and I literally put it over my head, around my neck and that helps a lot, something I used to wear when I rode my bike more, and stuff like that. But yeah, there are some tools and techniques you can learn to cool your body quickly, which helps me a lot. Yeah, running your hands under cold water. Running your wrist, just putting your wrist running under the water.

Kat Hill:

Right here, yeah

Tom Palizzi:

Yeah. Yeah. Just really cool it down nice and quick and opening your hands because they act like radiators come to dissipate heat much quicker than normal. So,

Melani Dizon:

And then don’t move.

Tom Palizzi:

Yeah. Don’t move. Yeah.

Melani Dizon:

And then don’t-

Tom Palizzi:

Find a fan.

Melani Dizon:

In general.

Kat Hill:

Yeah. Interesting. And I, you know, probably I had it longer now that you’re asking. It’s very interesting. I wrote everything off to perimenopause, but it may indeed have been Parkinson’s. Yeah. So. Interesting. Thank you.

Melani Dizon:

Yeah.  I think another one of the issues that came up a lot in the chat and I feel like I’m getting more emails about this topic lately is just falling, is balance, falling, moving around, figuring out how to move in your home without having to do some crazy remodel and stuff like that, like what, I’d love to talk to you, panel members, if you can share any information that you have around balance challenges, falling challenges, things that you do on a regular basis, things that you have noticed as your symptoms progress, that we can share with this group and Heather, I think you immediately went off mute. So, I think you probably have something here.

Heather Kennedy:

Well, I just want to say for the record, when I was first diagnosed, I was pretty cocky. I’m like, oh, we got this. How hard could it be? You take the world by storm. And I jump out of bed and go work out and get on my BoSu ball and balance and show everybody how easy it was. And as time progressed, I get out of bed now and I fall flat on my face if I try to do that. In fact, I can’t get out of bed. I have to rock around for a while. So, in terms of balance and falling, if you catch yourself doing that little stutter step, what I would recommend: pause, take a beat. I don’t care if people are behind you in the doorway and you’re stalled, take a beat, take a breath, do a count in your head, whatever you need to do.

I don’t care how crazy it looks. Just stop what you’re doing and be like. And do a little march to get yourself going or jump up and down if you can. Carry a walking stick with you in public so people don’t push you if you’re in public. But in private, there are a number of exercises you can do. We can get into those details later. I don’t want to waste too much time on those details, but there are a number of PT people can help you. There are people within our community. Davis Phinney can offer some resources on that. Freezing and getting stuck and balance are a problem. And they continue to be a problem. So, we got to work. We’ve got to work with it. So stay tuned.

Tom Palizzi:

Somebody said, in the chat, they said that their biggest problem was getting to the bathroom and back to bed alive every night which cracked me up. Cause that could be me easily.

Kat Hill:

It’s helped me a lot to only have two steps between my bed and my toilet. I’m thinking about padding it.

Heather Kennedy:

Who knew we’d be crawling?

Melani Dizon:

Yeah. So, I think, you know, a lot of people, whether if they’ve not even fallen yet, they have a big fear of it, right? Because they hear, oh, falling is the number one reason. And this is the biggest problem. And it’s also, obviously, one of the Cardinal symptoms, motor symptoms, is postural instability, which creates balance problems and falling. What are, has anybody had any of you had real scares or real any fears around it? Because I think that piece is big, like really nervous about it. And so that can’t help, right? Your nervous system gets all out of whack when your head is not in the right place.

Tom Palizzi:

Yeah. It’s just that multitasking thing that kind of concerns me like early in the morning at night, if I’m just trying to get to the bathroom, make sure you’re not carrying anything. Because if I’m trying to carry something and walk, that’s, like, stupid. So, I just make sure I’m not, I don’t even carry a cane. I just like, it takes me 20 minutes to get to, you know, the four steps to my bathroom and back. But sometimes it just seems like it takes forever. And to just take your time, like Heather said, just relax and concentrate and to focus on just the walking breath and take it. I always take a step thinking about it, put my heel down first, and follow my toes, heel toe, heel toe, heel, toe, heel toe. And so like, and then sometimes I can go in like a bat out of hell and then all of a sudden I get to a corner. Make sure you got something to grab on to.

Melani Dizon:

Right. Pam. Awesome. Yeah, you can. This is a great point. You can restructure your environment to prevent falling.  Use painters’ tape on the floor, make a ladder to get to the bathroom, and put furniture nearby so you have something to hold onto, watch out for rugs. Yeah. That’s super great advice. The other, sorry I got distracted, the other piece is that there are lots of tools that companies have created for balance issues. Like somebody talked about the U-Step, that’s a thing. The NexStride is something great. Urban Poling or any poles walking, I’ll tell you a story. It’s my, it’s still probably after all of my time at the Davis Phinney Foundation, it’s my favorite story. We were doing an event called the Little Big Things and we had all of these different devices and inventions that people had come up with.

And there was a gentleman that came into the event in a wheelchair. He could not move around at all by himself. You know, we were getting him into the bathroom and getting him back in the wheelchair. And later on in the day we had somebody from Urban Poling there and I look up and I see him with his poles basically running across the floor. It was unbelievable. He rolled into that event, totally unable to move around. And by the end, he had these poles, and he was moving easy. So, you know, part of it is like the pole is, you know, the pole comes up and so it’s giving your eye a trigger, you know, to go forward. It’s helping you with balance. There are so many cool things about the poles. Yeah, Sam just put in a link where we talk about pole walking.

But a lot of other people have mentioned it in here as well. And somebody emailed me yesterday and said that they are looking for somebody to create a trike kind of thing that works in the house. And I was like, oh, that’s really interesting. And so, I talked to somebody today and hopefully, I don’t know, there’s people that are really interested in creating things like this. So, hopefully, we’ll get that to somebody, but I thought that was a great idea. It’s not some giant trike, right? You need it to be small enough that you can pedal, I almost picture like a little kid’s trike.

Tom Palizzi:

Yeah.

Melani Dizon:

That just has bigger room for your knees or something that you know that you could get around. But any other tools that this group has used that have been helpful?

Tom Palizzi:

Well, there is a trike out there that’s just a really small one. It’s very lightweight, easy to carry around, put into a trunk of a car that, that has a small, very small seat on it. But it’s something that you easily use. I know a couple of people,

Melani Dizon:

Can you use it in the house?

Tom Palizzi:

Yeah, very much so.

Melani Dizon:

Oh!

Tom Palizzi:

Yeah.

Melani Dizon:

Can you find out the name of it?

Tom Palizzi:

I will, I’ll find out and I’ll let you know.

Melani Dizon:

Okay, great. We’re going to put that in the chat and if you happen to be watching, and you’re the one who emailed me, we might already have the answer for you. Does anyone else have any other tools that they use?

Kat Hill:

What, so I would totally echo what everybody else has said. And I, what I find where I have the most trouble is if I need to go to the bathroom urgently. And so, what I try to do is go back plan from that and just go to the bathroom often so that I don’t get in a situation where I’m trying to rush to the bathroom and end up incontinent and on the ground. I know that sounds funny, but it’s an embarrassing thing and I that’s when I’m in the most trouble when I back myself into a corner. So, trying to back plan, always, you know, go to the bathroom before I’m out doing anything and then knowing where the bathrooms are. I know it sounds funny, but if I know what’s going to trigger my trying to go too fast and getting symptomatic and tumbling, then I try to, you know, it’s kind of building my world again around the Parkinson’s, even though I don’t like doing that, but yeah, there are bathrooms.

Melani Dizon:

You set an alarm.

Kat Hill:

No, I don’t. It’s more a habitual thing. If I’m going to leave where I am, I always go to the bathroom first, but I was at my home. I did a lot of walking in my neighborhood. So, what I didn’t do was go to coffee and then try to make it home to go to the bathroom. I would go up to the coffee house, even if I had to wait or whatever. So, it’s, you know, it’s kind of that dual thing that urinary urgency and frequency and, and the then falling because I’m trying to get home so fast, I’m tripping over my feet. So

Tom Palizzi:

It’s like voting early on.

Kat Hill:

A timer’s a good idea. But see, I yell at my watch. You’re not in charge of me. The time will go off and I get sassy. I’m in charge of my life. So-

Melani Dizon:

What were you saying Tom?

Tom Palizzi:

I said it’s like voting: early and often, and in the bathroom, early and often.

Heather Kennedy:

A lot of people have mentioned, just before we leave the subject, about getting to the loo on time. If there’s the urgency with something and you’re, you know, your emotions, and as soon as you think you have to go, it’s like an avocado. You’re ripe now.  So, what I try to do is make sure that I have handles in specific places on the way to my bathroom. If I’m somewhere else, I count the steps or the lines on the floor, or I envision myself having a beat. I will literally say, dun duh dun dun duh dun, which is great to go to the bathroom. And if you have a partner, they’re like, what are you doing? It’s 3:00 AM. You’re singing Bee Gees. Do it anyway. That’s my tip for the day.

Melani Dizon:

Absolutely.

Tom Palizzi:

Right on.

Melani Dizon:

Let’s see. So many, so many

Heather Kennedy:

I know, I feel like I want to get it all in.

Melani Dizon:

Okay.

Tom Palizzi:

What about stress? I mean, we talked about that a lot, but you talked about, what’s the thing that’s bothering me most these days. It’s nothing to do with Parkinson’s, my Parkinson’s reaction to my mom moving into a home, into a new place, and that’s been really stressful for me.

Melani Dizon:

Oh. Yeah.

Tom Palizzi:

And you know, my gosh, it’s been, it’s been awful, but anyway, that’s just managing the stress and the daily environment can sometimes be daunting. Man, that’s something I still have yet to figure out how to master, but, or at least, get through okay. That’s been a struggle the last couple of weeks.

Melani Dizon:

Yeah. I mean, because Parkinson’s is just one of many, being a normal human that has all these stressors. Unfortunately, you are, you’re in a position where stress can have a much bigger impact.

Tom Palizzi:

Yeah.

Melani Dizon:

Because of your symptoms, what symptoms do you notice get worse, Tom, with stress?

Tom Palizzi:

Everything. Yeah. Pretty much, it compounds. It’s unbelievable how much it affects me. Like, I can’t stay on through a normal cycle of meds when it’s like this. You know, I end up being about a half-hour short and I go through a really deep OFF period. Like I’m just coming out of the OFF period now, trying to get back on for this, but that’s annoying for me. And of course, you have all the other things going on with the heat and humidity and blah, blah, blah, as we talked about before, mix mixing stuff. So, and again, it’s all the symptoms.

Melani Dizon:

Yeah. What about others on the panel when they’re, when stress is bigger in their life?

Kat Hill:

Well, you know, I left my job because the stress I just felt, was feeling so awful. And, and it wasn’t, I wasn’t diagnosed when I left, I was trying to figure out what was wrong. Right? And I had, I loved my job, but it was unpredictable. It was long hours, and it was a high-stress job. And so, what I found was that decreasing my stress level, it helped me to manage my Parkinson’s. And, but I had to make significant changes and we can’t change everything. Right? I lost my mom that year. You know, life continues to happen. I had teenagers, there was no control there and like, you know, like Tom, we can’t affect what the other people that are going on in our world. I’m going to mute it for a second and I’m going to hand it off.

Melani Dizon:

We don’t mind dog barkies, but Heather?

Heather Kennedy:

I was just going to say, we suffer such consistent loss. Like Tom was just mentioning, having to move his mother into a home, which is extremely stressful, we’re caring for elderly or caring for children, or, you know, none of this happens in a vacuum. We have people in our lives that we love, and there’s always going to be something happening we feel powerless about, and we feel powerless in our bodies. So that constant loss to manage that, that anxiety that comes with that constant loss, I really feel for you, Tom And we can all, like Kat says, and I’m sure Sree could, you know, there’s a lot of loss. So just being aware of and being gentle with ourselves in that arena really helps. So,

Melani Dizon:

Yeah. Sree, do you have anything to share on this topic or anything that we’ve talked about?

Sree Sripathy:

I’m just waiting for my meds to kick in.

Melani Dizon:

Okay.

Sree Sripathy:

Just tell you.

Melani Dizon:

No problem. I just didn’t-

Sree Sripathy:

It’s taking a lot longer than I anticipated

Melani Dizon:

That I wasn’t-

Sree Sripathy:

No, no, no, I’m fine. I’m just like, I, my whole body is kind of frozen at this point. Okay. But so, I’m just looking at myself and I’m like, oh, it’s always, Bitchface, that’s great. I’m just staring at myself and I’m like, am I falling? Am I falling asleep on zoom? So, anybody who watches this after can slowly see the process of someone frozen and waking up.

Tom Palizzi:

Yeah.

Sree Sripathy:

And right at the call end, then my energy will, the meds will kick in and my face will start moving and I’ll be like brain working. Can you repeat the question?

Melani Dizon:

Oh, no. That’s we, I was just seeing if there was anything around stress that you’ve had to deal with.

Sree Sripathy:

I think dealing with Parkinson’s itself is stressful. So regardless of, not regardless, but outside of that, you’ve got all the life stress, kids, parents, driving a car, backing out of the driveway. Backing out the driveway when I’m driving is stressful for me, a lot more now. Having to pay attention to the left-hand mirror, the rearview mirror, the right-hand mirror, it’s all very stressful. And especially when you’re driving on the freeway, having to manage a car moving in close to you gives me anxiety. So, like it used, you know, like when you’re driving and you see a car on the left lane or the right lane parallel to you, and I’m like, oh my God, why am I getting so anxious? This anxiety starts to build up and I get stressed. I’m like, am I going to respond quickly enough?

Am I going to know what I’m doing? And I haven’t had any problems, you know, a lot of us experience anxiety while driving. So, I hope nobody in the DMV or the CPD or whatever is listening to this. I’m perfectly capable of driving, everyone. But it’s anxiety-inducing. And the other thing that’s anxiety-inducing is closed spaces now. So, for me, that’s stressful. And, plus, part of my job, I have to be, because I’m a visual journalist full time now, I have to be part of a crowd. So, the other day I was covering a major event where a famous Indian film star from the south was in town. And the crowds were just overwhelming, people yelling and screaming and trying to get them. And I’m in the middle there photographing, and the security people were like, you can’t move, you can’t move.

And I’m thinking there’s like 40-50 people surrounding me. No one is wearing a mask. My mask broke and I’m just starting to have this anxiety attack. This stress is happening to me. And I’m like, I have to get out of this crowd. I cannot be in this crowd. So, it’s very overwhelming for me. So, I have to learn how to manage that, but I was not expecting to be so crowd, whatever the word for that is, you know what I mean? And I noticed this happening to me before I was diagnosed, actually, that I did not like crowds, and I would get very claustrophobic. So, you know, there’s that stuff I have to deal with. So, I think as Tom mentioned, everything gets worse with stress, everything, right? And for people who even don’t have Parkinson’s.

There’s a great book called Why Zebras Don’t Get Ulcers by Robert Sapolsky, who I love a professor at Stanford University and a, I think, a neuroscientist and a scientist, and it really goes into detail about how stress affects the body. And I recommend that book to everybody. And it does mention Parkinson’s briefly, but if you’re just a human without any major conditions, you’re going to be affected by stress. If you have Parkinson’s, you’re going to be affected by stress. Just thinking about what Parkinson’s is going to do, how you’re going to progress, how you’re not going to progress, looking at other people around you who have Parkinson’s disease, thinking if you’re going to end up being like them. Just the very fact that we are alive with Parkinson’s is stressful in itself and add anything on top of that. It amplifies it extremely. So yeah.

Melani Dizon:

Yeah. I think that you, that point, that last point you made as well was just so, we see it in the chat. It’s the worry, right? The borrowing trouble from the future. Am I going to get dementia? Am I going to get dystonia? Am I going to fall? Am I going to lose my mental capacity? All of those things they’re just, you might as well have them, the worry is so severe and deep, right? So, what are some, you know, what do you do? Somebody says, hey, I worry that I’ll get dystonia. How do people cope, manage or treat? I, you know, they don’t have it yet, but like they’re worried about the treatment, right? Because that’s what we do. So, what are some things that you do when you’re in the moment and you start going, oh my God? Or you see somebody who is worse than you and you’re like, oh my gosh, what do you do?

Sree Sripathy:

I’ll quickly answer that and then hand it over to Kat.

Kat Hill:

Yeah, go Sree.

Sree Sripathy:

I just don’t worry about it. When I worry about it. I just say, I’m not going to worry about it or because I can’t, because it’s so overwhelming that I cannot let myself go there. So, when I start to go there, I just think, at the moment right now, I don’t have this problem. So don’t think about it, but I can hold myself off for maybe 30 minutes, for an hour, maybe 45 minutes. And then I’ll call my doctor. I’ll send my doctor an email saying I’m worried about it. And she’ll really, she’s great at calming me down. She says, well, you’re doing great, now, you’re a slow progressor. Do not worry. And you’re not going to suddenly, one day, start waking up and freezing. She’s like, it doesn’t happen like that.

You’re not going to be just fine, you know, happily jumping around and then one day, it jus, like, happens. You know, she’s like, there’s a pattern to these things. So just relax. And she calms me down immensely and I’ll call friends like Kat and Heather and Tom, you’re on the list. I’m going to start calling you one day. But you know, they calm me down too. And they let me know, you know, just take it day by day, take it hour by hour. And then I just watch Netflix. I’ll watch Netflix, I’ll eat chocolate, I’ll eat ice cream, anything to get me relaxed and happy. And it, then it goes into denial. So, I go through, I go through a lot of different stages to get me over it, but I’ll hand it over to Kat so she can say what she had to say.

Kat Hill:

I love that, Sree. I love when you call me. You know, I think part of it is acknowledging that we’re going to have moments in the rabbit hole, what I like to call that rabbit hole thinking. And I think whether you have Parkinson’s or whether you don’t have Parkinson’s, you’re going to have some moments in the rabbit hole. I think with Parkinson’s there are, are things that happen that make it more triggering for us. We have more physical symptoms when we’re there. And I think we, we have a choice when we’re there. I think acknowledging that we are going to be there some and trying to learn and give ourselves tools, just like Sree said, tools, how to get out of it. So, acknowledging it, accepting it, grieving it. And then how do I get out? And the more practice that we have in getting out of that rabbit hole and even laying down pathways in our brain to do it. Okay, when I’m feeling sad, I know that I’m going to, you know, watch my favorite Netflix comedy. I’m going to try to go for a walk or, you know, whatever you do, I’m going to call, I’m going to have a bubble bath. I’m going to call my best friend. And the more practice we have at digging ourselves out of that rabbit hole, the better we’re going to get at it. And I think you know; life is progressive and degenerative. I’m sorry, again, the ray of sunshine, right? We’re all going to die someday.

But, so, I think practicing and allowing and trying not to judge it, because I think where we get stuck is then we get mad at ourselves. Because we’re stressed, we have more symptoms, then we’re mad at those. And we’re bummed because we’re having more symptoms and gosh, darn it. It’s more loss and it’s yeah, exactly. It’s bigger and bigger. I love it. I’m going to narrate while Heather acts out my thoughts.

Melani Dizon:

It’s an improv, we didn’t tell you that.

Kat Hill:

But I think we have the ability as human beings to learn things. And I think it’s easy to think about giving up and closing the doors and making our world really small and padding everything and putting handles everywhere and not picking up our phone. But when we do that, we’re digging ourselves further in that rabbit hole and reinforcing that rabbit hole thinking. And there’s going to be a really good book coming out about this.

Melani Dizon:

No!

Kat Hill:

I know, I was totally self-hiding that.

Heather Kennedy:

Who wrote that book?

Kat Hill:

But I really believe this, and it’s really worked for me, and it may not work for you, but it works for me. Anyway, the book will be out, they’re saying now next month, but anyway, we’ll talk more about that later, but I think you can do it, if I can do it, if I can learn how to dig out of that rabbit hole. Yeah. I think anybody can, you know,

Tom Palizzi:

It’s certainly worth the time to investing in that for sure. I agree with you, Kat. And I’m looking forward to the book myself. So that’ll be, that’ll be fun, but somebody brought up worry about dyskinesia. You know, I worried about that for a long time. And then what I discovered was quite the opposite that I thought would be, I’ve actually lost a bunch of weight because I’m moving all the time. You know, it’s like, I can’t just sit here and, and be still. Yeah, exactly. And I’ve just shed pounds. So, it’s been kind of nice. There’s a benefit to it. I know it’s it, I’m kind of poking fun a little bit, but there’s always a silver lining. Right? You got to find those silver linings and exploit the hell out of them. Right.

Melani Dizon:

Right.

Kat Hill:

I always say burn calories, burning calories.

Melani Dizon:

Right. I like Joe Narciso, one of our new ambassadors says, I tell myself, don’t trade today for a tomorrow that might never come. Meaning you might not get dementia or dystonia. True. Right. Like, you might not.

Heather Kennedy:

Yeah,

Melani Dizon:

Definitely might not. And someone says, Gavin, just consider that it’s possible that nothing gets to you. Not saying I’m there, but we need not assume stress is a given

Heather Kennedy:

Right. Yes. Also, I would add, don’t identify too strongly with your thinking if you can somehow remember as Kat says and, and we’ve all sort of said it in different ways, nothing is permanent. Everything is just this finite little blurb. Don’t sit there and think, oh my God, my symptoms are so much worse. Now it’s all downhill from here. I better get my euthanasia plan. Where’s my will and testament? Don’t catastrophize if you can help it. I do that regularly. So, I know what it’s like, you know, I mean, right in the next hour it will be different the next day. It will be different

Tom Palizzi:

Early on in my diagnosis, I remember asking my doctor once I said, well, I don’t have tremors yet. She goes, what do you mean yet? I said, well, I don’t have a tremor yet. She goes, you may never get a tremor. So, and I still don’t have many tremors at all. And it never occurred to me. I thought early on I was going to get all the symptoms and you know, maybe I will someday or maybe not. But that’s just to your point, I mean, that’s kind of how it yes. Woo.

Kat Hill:

Yeah. And even, so, my dad had Parkinson’s and died from Parkinson-related complications and his Parkinson’s was very different than mine. We were diagnosed at different times. I was waiting for me to my, for myself to have a lot of, and maybe I’m fooling myself, but most of the time I’m fair with it. And yes, I have trouble multitasking. I have some trouble with cognitive stuff, but I’m not struggling a lot with dementia, at least that I remember. So, my husband tells me it’s not bad yet either, so that’s-

Tom Palizzi:

Not bad yet.

Melani Dizon:

So, I had a great question in here that I think-

Heather Kennedy:

So many.

Melani Dizon:

So, Nikki says, how do you handle or grieve the loss of friendships post diagnosis?

Heather Kennedy:

Those hurts. Yeah. No, I feel that. I feel that so acutely, it’s so hard on others to see, we’re the ones changing so rapidly, and they see it and they just don’t know, like, for example, did you know a lot about Parkinson’s before you had it? I’m going to say I didn’t. I knew some people who had it, but I didn’t understand them and we’re asking a lot of our friends to come along with us and be on our level and learn at our, you know, and try to learn how to communicate with us. And you think it would be so simple, right? Like just have compassion for each other. But the truth is they’re going through their stuff simultaneously. And a lot of our changes aren’t seen with the naked eye, they’re not seen with the untrained eye. So please just be patient with them. It’s not personal. It hurts so much to watch everybody changing and growing apart, but friendship is voluntary. And family often doesn’t even understand, even though they try.

Tom Palizzi:

Yeah.

Heather Kennedy:

You know, so I just want to add that in.

Melani Dizon:

Sree?

Tom Palizzi:

Sure. That’s a good one. You know, I think it’s kind of interesting for me is I’ve, I don’t know that I’ve lost many friends. Maybe I have, I’m not sure. Most of them left because I retired from work and that’s where all my friends seem to be, in the workplace, but I made millions of new friends and it’s been a wonderful adventure for me in that sense. Just getting to know people all over the country this group here, none of us live in the same city, and that’s been good. So, there are ways. I mean, I know getting involved in being active is not everyone’s forte, but you know, get out there a little bit. You’d be surprised. You’d be surprised. My neighbor has Parkinson’s and he and I become close friends.

Melani Dizon:

Oh wow. That’s great.

Tom Palizzi:

Crazy coincidence, right?

Melani Dizon:

And Sree and then just one quick thing I want y’all to address if possible is I think when sometimes, at least, when we’ve talked to people about, hey, you know, there are a lot of people in the Parkinson’s space, you might meet them and you know, find new friends in the Parkinson’s space. And I want to stress that what I’ve heard, at least, and you guys can speak to this, is that, you know, when you’re with your friends who have Parkinson’s, it’s still not, it’s not all about Parkinson’s, you guys just happen to do things and happen to have this thing in common, just like somebody might happen to have a political or religious thing in common or you happen to have four-year-old boys. Right? This is just, it doesn’t mean that getting Parkinson’s friends mean your whole life, and everything you talk about is going to be Parkinson’s. Sree?

Sree Sripathy:

So, I think when we think about friends, for me, I’ve lost friends. Not because of Parkinson’s, but you know, I’ve lost friends. We’re talking, I’ve been around for a few decades. Strange to think that, but you have lost friends due to marriage.  , you know, somebody gets married, somebody gets a boyfriend, a guy, friend, a girlfriend, a partner, or, you know, they, them, whoever they get married, they get a partner and suddenly they disappear and suddenly their whole life is different than yours or they have kids and I don’t have kids and I’m single. So, I lose friends that way. So, it’s not that we’re just losing friends that because of Parkinson’s disease, we can lose friends for many reasons and it’s not really losing them. They’ve just moved on to something else. And I will say that the friends that I have lost, whether it’s due to Parkinson’s or not due to life changes, it hurts, especially when they’ve been around for like 20 years, 25 years. And all of a sudden they’re gone and you’re not sure why.

You’re thinking, okay, I didn’t tremor too much in front of you. I didn’t, like, pee in front of you. I didn’t. But what was it that you couldn’t handle? Was it your husband or was it your boyfriend, or were you just not able to see me get ill, or did you just get involved in your own life? So, I think the loss always remains, depending on who the friendship is, or the nature of the friendship, and you just learn to deal with it, and you build your life around new friendships or a new strength that you find in yourself. But that doesn’t mean the loss doesn’t still hurt. Because you look back on memories and think, oh my God, that’s who I went to prom with or she helped me choose my wedding dress or she’s my bridesmaid or I was her bridesmaid and now that’s gone, and it still hurts, but it gets a little bit easier with time.

Do you know what I mean? And other friends have mentioned to me, you didn’t leave the friendship. They did. Why would you keep thinking about someone who’s no longer putting in the effort? Because you want them to put in the effort you want them to be the person that you thought they were? And sometimes that’s not possible. So, for me, I just try and accept that pain or that loss as much and move on. And for me, the friendships I’ve made after that have been so amazing, so much stronger. So, you know, make new friends, and try and keep the old, one is silver. Some are gold. That’s my girl scout saying, yeah.

Tom Palizzi:

That’s a good one. I like that.

Kat Hill:

I do too.

Tom Palizzi:

Haven’t heard that in a while, Sree, Thanks.

Kat Hill:

And I-

Sree Sripathy:

Oldie, but goody. Yeah, yeah,

Kat Hill:

Yeah. I found the same thing as you did, Tom, kind of the retire or leaving work. And also leaving work hours, you know, in my forties, all of my peers were still working full time and, so that, it gave us less in common to connect around. I still have contact with a lot of my midwife colleagues, but it’s way more sporadic. And what I’ve found is that, again, I don’t wish Parkinson’s on anybody, but I do believe this community of people is pretty exceptional, and having shared that common ground, it just helps from having to spend a lot of time explaining about what’s going on with your body. You can kind of get to the good and rich stuff quicker because you’re not so busy explaining why your hand shakes and why you’re having trouble getting in the door or why you list one way or have bruises here and there. It’s compassionate and caring. So yeah.

Melani Dizon:

Yeah. Brian Reedy. Hi Brian. He says, I find making friends in the Parkinson’s community is easier. It’s like all of the normal pretenses are gone and people are just more genuine, open, and reachable, quick with vulnerabilities and honesty. I think that’s what you were getting at there. Kat is yeah, there’s just not that like, you guys just get each other, right?

Heather Kennedy:

Yeah. There doesn’t need to be a lot of explanation and there are so many little nuances and idiosyncratic things that happen that require explanation for some people, you know, there-

Kat Hill:

Like laying down in the middle of the floor and needing to put your feet up when you’re sweating profusely, that’s hot. Right. And me saying, don’t worry, I’m a medical professional. It’s all. Okay. I just need to be here for a second. I’m handling the situation.

Tom Palizzi:

Don’t step on me.

Kat Hill:

Right. And I’m not trying to be high drama. I am really not trying to be high drama. I’m just trying to not fall over and faint. Right. Please don’t step on me, Tom, right. Does anybody have a pillow?

Heather Kennedy:

And it’s especially painful for those of us who might be a little more introverted or maybe we just die drawing attention to ourselves. I happen to not fall in that category.

Kat Hill:

What are you trying to say, Heather?

Heather Kennedy:

Maybe many of us are more modest and they don’t want to bring attention to ourselves. They’re trying hard to just skip over it and, oh, I’m fine. I’m fine. When in fact they’re not fine and they do need support. So at least we can support each other on, you know, on the backside here. I would also mention always check your, what’s bringing you joy and having something to look forward to. I always ask people that instead of, “how are you,” or “what do you do for a living” at a party. I often say, hey, you know, what’s giving you some juice? What’s bringing you joy? Stay focused on something to look forward to. It is so important for your gratitude and just to lift your mood, Jan Grimes talks about this. A lot, many people have spoken about this because we get a raw deal.

Melani Dizon:

Sree?

Sree Sripathy:

What was I going to say? So yeah, the interesting thing to me is I would send links to my parents, to my family about, hey, I’m on this podcast talking about Parkinson’s, or here’s an article and not a single person read it. Not a single person looked at it. I think my friends did, but nobody in my family did. So still after seven, I think 6, 7, 8 years, something like that with this disease, my family still doesn’t get it. They still don’t understand it. A lot of my friends don’t, but I but many people do. And I will say what I did was, before Parkinson’s Awareness Month, I mentioned this, before last year I did a series of self-portraits and poetry about what the disease was like for me day to day to day. And I didn’t share it with anyone in the Parkinson’s community.

I mean, if they follow me on Instagram, they do, but they don’t because I didn’t advertise it, but I targeted it towards the people who don’t know anything about Parkinson’s, and they found it very helpful actually. And many of them reached out to me saying, oh my dad or my grandfather has Parkinson’s, and you’ve helped me understand what they go through. So that was really helpful. I did, I did a series of audio recordings of just about anything. It was like Kleenex. It was about orange juice, whatever. And I threw in a little tidbit here and there about Parkinson’s disease on my website, which I’d forgotten was even online. And I had a guy that I knew a couple of years ago, reach out to me to say, hey, I didn’t know that there was executive dysfunction in Parkinson’s disease. He says, my dad has Parkinson’s and I’ve never been able to understand him.

And his dad is like 50, 55 years old. And he said, thank you so much for this. I wasn’t expecting it. And now I think I understand him a little better. So, then I sent him a bunch of articles in English and French, because he’s from France to help him understand what his dad is going through. So, I think there are many ways to reach people. Sometimes the way to reach them is not specifically to talk about Parkinson’s but to include little drops and tidbits in your daily conversation, or if you are on social media or you are an active advocate to do it that way. The whole episode, the whole post doesn’t need to be about Parkinson’s disease. Do you know what I mean? You can think about engaging them or drawing them in other ways. And I found that’s been helpful.

Kat Hill:

And I have found it very, very helpful to have friends that know how to engage on social media and will teach you. Thank you, Sree. Thank you, Heather, because that is not my forte and I’m still an active student in this process. So, because I don’t know a lot about that part, but I agree with you not having it all be about Parkinson’s all the time.

Melani Dizon:

Yeah.

Kat Hill:

Or sweat or heat.

Melani Dizon:

Or heat and humidity. Somebody said, I think it was Pam that said, somebody had mentioned that somebody, you know, people will come to you and say with that, you know, how are you kind of question? She says I hate that question so much. And I think, you know, what do you guys do when you get that question? You know, she said something, somebody said something like, oh well I’ve showered. Or you know, they might say, are you talking about my Parkinson’s, you know, to get more specific, but what are some of the ways that you respond when you are faced with that? Because I know all of you are.

Sree Sripathy:

I just say it’s, “I’m fine. Everything is fine.” You know? Or people will come up and ask me, “how is your health?” And I’m just like a stab, stab, stab myself.

Heather Kennedy:

Yeah. Cane pain.

Sree Sripathy:

Yeah. And I just say like, if it’s a good friend and I know that they mean it from a good place, and I haven’t seen them in a couple of years just because that’s life, I’ll just say, you know what? It could be better. It could be worse. I should be doing things better and it’s progressing. But I do the best that I can. There you go. Heather’s getting at her S and M stick. Good job Heather.

Heather Kennedy:

Right? Isn’t that what we do?

Sree Sripathy:

TMI, TMI. Heather.

Heather Kennedy:

How about when they lean in and they call you ma’am?

Tom Palizzi:

They don’t call me that.

Heather Kennedy:

Oh, Tom.

Sree Sripathy:

Oh, it’s, no, I get called auntie now.

Tom Palizzi:

Yes, sir. Yeah. Yeah.

Sree Sripathy:

Getting called to auntie by someone who’s 30 years old is so disconcerting to me because I’m like, oh my God when you were 10, this was great. But now that you’re 30, I feel so weird. So strange. But yeah, no, I just treat them with as much kindness and compassion as possible. Because they’re doing the best they can, at least they’re asking, you know, and somebody thought I had cancer because I shaved my hair and she just approached me in public and said, are you ill? Are you sick? What’s wrong with you?

Heather Kennedy:

Is there a discount? Yeah, I’m kidding.

Sree Sripathy:

You know, I,  sometimes my patience gets, and I just make a very cheeky remark and then they just look at me blankly and I’m like, yeah, that didn’t work very well. So-

Melani Dizon:

I mean, I, so as an outsider, it’s interesting to me because of, right, we have, I feel like we have the same number of conversations around this. They’re coming up and they’re asking you and you know, we’ll say like, oh I’m fine. Or make a quick quip about it or something like that. But then on the other side, we’re like, but don’t think I’m okay because I’m not okay. So as somebody who’s talking to people with Parkinson’s, I don’t have it, what do I do in that situation? What is somebody who’s doing it in that situation? Where if you’re just like, oh I’m fine. And I don’t know anything about Parkinson’s. I’m like, oh, well they’re fine, but you’re a hundred percent not. And so, I just find that an interesting-

Kat Hill:

Lately, I’ve been saying, because people will say, gosh, but you, you know, you look like you’re doing so well. And what I’ll say is I’m ON right now and my meds are working well right now. Or I’ll say I’m well medicated right now, or this time of the day is a good time of day for me. Conversely, they never say, oh, you look like you’re doing horrid. Right. I just get more like, are you okay? Kind of stuff. Yeah. Later, you know.

Melani Dizon:

Do you ever use the terms? Do you ever tell them? I’ve always thought it would be a sort of straightforward to say I’m ON or I’m OFF and teach them quickly. What does it mean to be ON, what does it mean to be OFF? And I don’t know if that’s just too much for somebody, but I feel like if you’re like, oh I’m ON right now. My medication’s working really well.

Tom Palizzi:

It’s sort of like when you have little kids and the little kids ask you like they’re three or five or seven years old, they, they want to know what those two dogs are doing, you know, describe it in great detail. You just kind of give them what they need to know. Right. And move on.

Kat Hill:

Well, I’m a midwife, Tom. So, I did a lot of in detail.

Tom Palizzi:

My thoughts were-

Melani Dizon:

I’m sure the back seat, of Kat’s car when she was driving, her kids to school were full of all the really interesting information.

Heather Kennedy:

Oh God. It’s like, you’re serial killer or you’re helping people.

Melani Dizon:

Right?

Tom Palizzi:

My stock, the answer’s always been, I say, how are you? And I say, never better. And then I’ll say, well, that’s a lie. But, and here, you know, they laugh at that. It’s a lie, but you know, I’m never better. I couldn’t mean any better today than I was yesterday. Right.

Heather Kennedy:

And that’s true. We are fortunate. There’s a fun woman who does some MS Talks called MS  Confidential. And she says that people lean down and they’re like, ma’am, can she hear me? Can she hear me? Ma’am, she’s like, there’s a screenshot for you.

Melani Dizon:

Oh, we’ll get it. That’s going to be the feature image, Heather.

Heather Kennedy:

I know, come on and join us. We’re really like-

Kat Hill:

Intro conversation.

Heather Kennedy:

Yeah. Yeah.

Sree Sripathy:

I will say that when I’ve tried to honestly tell people how I’m feeling, they’re within, not even one minute, within 30 seconds, their eyes glaze over, and they start walking away. And I’ve tried that with even people that I know care about me. And I’m like, wow. So maybe you don’t care about me or maybe you just don’t want to handle it. Or maybe it’s that question that people ask, hey, how are you doing? And they don’t expect you to respond. So, they ask, how are you doing? How’s your health with the intent of you just saying I’m fine? And everything is okay because anything more they can’t handle. So, I think you have to know who your audience is, who the person is, and respond accordingly. And sometimes your brain isn’t capable of handling all that. So, I just say, I’m fine. And I move on. And if they really want to know, then they’ll figure it out because clearly if you have Parkinson’s, you’re not fine. So, they’re not able to figure that basic thing out, I don’t have the energy all the time to educate them. It’s not my responsibility to educate everyone all the time. Here’s the zoom link. Here’s the podcast link. Take the time. If you’re a good friend and you care, if you don’t, fuck off. Sorry.

Heather Kennedy:

Good point.

Kat Hill:

We’re getting symptomatic in here. Symptomatic. Saying symptomatic is a descriptor. I’m feeling symptomatic. I’ve used that from the very beginning with my family because I can have a great day and still be symptomatic. I can have a crummy day and look like I’m fine. Right? So, I think that just like anybody else, we just show it more on the outside if we’re having more symptoms and I don’t even like the medical establishment, you know, defining things as bad or good because that’s laden with judgment. That’s therefore saying that when I’m having Parkinson’s symptoms, I’m bad. Right. When I’m having Parkinson’s symptoms, I’m ill. I feel like I can live a healthy life even with a chronic disease, I can eat well, I can take good care of my body, I can work out, I can, you know, watch my other risk factors for disease. And if, but as soon as I start telling myself that I’m sick or that I’m ill or that I’m bad, that’s the language that that’ll take me into that rabbit hole. And yeah. I don’t know. Maybe I’m simplifying it too much for me. It’s almost that simple though.

Tom Palizzi:

Yeah. As I just saw a note from my good friend, Brian Reed, where you said it’s, it’s positive. It’s positive self-talk, Tom, when you say that you’re never better. That’s right. Brian. Brian I like that.

Heather Kennedy:

What about-

Melani Dizon:

That’s definitely, that’s a Davis thing. He’s, yeah, doing great. Yep. Big smile, right? Oh, go ahead Heather.

Heather Kennedy:

Oh, how do you respond when someone says, oh, you look better. You’re getting better. Kat, oh, you look better. Sree, oh, you look better today.

Melani Dizon:

Yeah. This one is funny. They, she said, okay, oh, somebody said, my oncology doctor, said, I didn’t look like I had PD and I responded I’m well medicated. This doctor doesn’t-

Kat Hill:

I get that.

Melani Dizon:

-know about that. Right. This is funny. People say, don’t worry. You’ll get better. Or have you tried tart cherry juice?

Kat Hill:

Or cinnamon? That’s my favorite. I heard that a lot of my son with type diabetes has, has he put cinnamon on his feet? Right? So that’s my answer to everything: honey, let’s try some cinnamon today.

Melani Dizon:

Joe said-

Sree Sripathy:

It’s a little TMI.

Melani Dizon:

I was an actor before I went on disability. And so many people say you look great. You should go back to work. I’m sure you guys get that too. Right? Like you should go back to work. It’s-

Sree Sripathy:

I’ve never gotten that. I think sometimes with Parkinson’s we all have to be actors not to say that the people who are seeing their actors are not actors, but I act a lot like I’m normal just to get through the day. And it’s if I acted how I, if I let people see how I feel all the time, which I’ve done on this call, which is shocking to me, someone who never likes to go on TV. I just have been completely blank as the meds haven’t kicked in. I didn’t have the energy to act today. Like I’m, I couldn’t really, but that energy we put into acting like we’re normal and that everything’s okay. It’s another level of exhaustion, you’re already fatigued or tired, exhausted from dealing with this disease. And then you have to act like you’re normal at a party or an event or make yourself be more on than you are possible. So, we do that all the time. And I think sometimes we do that for ourselves and this self, this, our own sake, and the sake of others. Because if you, they see sometimes the darkness inside, it can be overwhelming to them and us too, you know? So, we just take it day by day. When we say things like we’re doing well, we’re doing fine. We’re doing great because we need to hear that. You know, we do.

Melani Dizon:

Yeah. Chip Westbrook says, I think this comes from one of the early Stoics., it will be okay in the end if it’s not okay. It’s not the end. I love that too. I have that up in my mind. You and Steve Huanh, this is great. How are you? That question doesn’t bother me. I just respond naturally, I think maybe naturally, I assume that they care about me, whether they do or not. That is great. Excellent. Tumeric and marijuana. Yeah. Everyone going to do those two. That’s what?

Sree Sripathy:

There’s a latte. There’s a latte that has tumerica marijuana in it.

Tom Palizzi:

Oh my gosh. I’m missing the boat. I tell you. Got to get some

Sree Sripathy:

Come to the Bay Area, Tom, the Bay Area has got everything.

Melani Dizon:

Great. Oh boy. Well, thank you everybody for being here today. Thanks, everyone for showing up. We appreciate it, for participating in the chat, asking questions, and sharing your challenges. This is a full community and it’s really nice to have everyone here. We will send you the recording, the transcript, the audio, the chat questions, and anything that we talked about in the link. And if you have any questions whatsoever, you know, between now and let’s see, what month are we going to be, September?, you can just email us at [email protected]. And I’m not sure if I have this in the chat for everybody. Just going to send somebody. Yeah. Wow. 60 minutes here always, only feels like 10 minutes with a lot of good info. Agree, Brian, thank you guys so much for being here and we will see you soon. Thanks.

Tom Palizzi:

Thanks, Jean Hammond. Hi, this is a lifesaver for us too.

Kat Hill:

Yeah. Thank you. Great to see everybody. Thanks for coming.

Heather Kennedy:

Thanks, guys.

To download the audio, click here.

Show Notes

We covered many topics in this month’s Living with Parkinson’s Meetup. Thank you so much to our panelists and participants for their great suggestions. Here are some of the key takeaways from the ones we discussed.

Depression, anxiety, and apathy

Just as Sree said, Parkinson’s in and of itself is stressful. It makes you prone to anxiety and depression simply for the loss it adds to your life, such as loss of bodily control. Additionally, outside stressors are added, such as family, work, and societal obligations. Anxiety and depression are common symptoms for people living with Parkinson’s. So let yourself sit with those feelings. Pause, take a deep breath, and let them out. In a recent webinar, we discussed mood disorders and apathy. Check it out here for more information and to understand the difference between reasonable levels and levels that may require treatment.

Additionally, we had a conversation about worrying about symptoms. Tom mentioned how he fears developing a tremor. What his doctor suggested is making sure that he is not increasing stress about the situation he is in. You aren’t guaranteed to have every motor symptom of Parkinson’s. Some people never experience dystonia. Some people never experience tremor. Instead, focus on the symptoms you are currently experiencing and don’t worry about symptoms that may or not happen.

Bowel and urinary incontinence

As anyone with Parkinson’s knows, bowel and urinary incontinence are huge frustrations. Our panelists had several great suggestions on how to combat this.

  • Set up a “ladder” from your bed to your bathroom so you can get there easily at night. For example, tape down a ladder pattern to mark your steps. Have objects or handles around your house to support you on the way to the bathroom. Use a U-Step or other mobility aid to help you get to the bathroom safely.
  • If you are in public, scope out where the bathrooms are before you need them. On your way to the bathroom, count the lines on the tiles or the steps it takes for you to get there so you can keep yourself from falling. Again, bring mobility aids with you to ensure your safety.
  • Go to the bathroom before you leave your home. Even if you don’t have to go, go. You’d rather be safe than sorry.
  • If all else fails, do like our panelist and ambassador Kat Hill suggests and move your bed closer to your bathroom. (She’s living in an Airstream right now, so she’s lessened her commute considerably:))

We have many bowel and urinary incontinence articles, but we recommend starting here.

Balance, Freezing of gait, and falling

One of the primary motor symptoms of Parkinson’s is postural instability, which can cause a lack of balance and ultimately falling. It can be frustrating when you feel like you are constantly off balance. Heather Kennedy gave us some great advice:

“So, in terms of balance and falling, if you catch yourself doing that little stutter step, I recommend you pause and take a beat. I don’t care if people are behind you in the doorway and you’re stalled, take a beat, take a breath, do a count in your head, whatever you need to do.”

Do not be ashamed of your mobility issues. You can’t control them. Instead, give yourself time, learn how fall prevention works, and watch our latest webinar on FOG and mobility. 

Heat and temperature regulation

Heat and temperature regulation is an issue that often gets overlooked, but they can really impact how you feel, so it’s an important issue to address. Here are some key takeaways from that discussion:

  • Our ambassadors and visitors agreed that it’s much easier to regulate your temperature in cooler temperatures than in warmer ones. Sweating makes the heat even more uncomfortable. This can add to the stress aspect that people are already experiencing.
  • Wearing shirts that have cooling technologies helps a lot in regulating your temperature in hot weather. Here are some options we’ve found.
  • Find places with air conditioning. Make sure that you have access to cool areas if you are outdoors.

Dealing with friends and family

One of the main frustrations our panelists and participants have is with friends and family. While we were reminded that, before the Parkinson’s diagnosis of either ourselves or our family members, we didn’t know a lot about Parkinson’s ourselves, it can still be frustrating to be constantly asked questions about Parkinson’s. While it isn’t your job to tell people everything they need to know about Parkinson’s, it is beneficial to your friends to know what’s going on so they can help and feel closer to you. However, sometimes people ask but then do not take your diagnosis and symptoms seriously. Pick and choose your battles. You don’t have to re-explain everything every time, but make sure that the people who matter know what they need to know.

Another frustration we discussed was the “advice” that people give. Some highlights were:

  • Being asked, “How are you?” and knowing it means “How is your Parkinson’s.”
  • Being told, “Have you tried this?” when you and your doctor and your entire community already have tried it.
  • Being told, “You look better!” or “Wow, you’re looking great!” when people see you. This is often followed by, “Are you returning to work?”

You know your body better than anyone else, and you’re not alone in being frustrated with these comments. One of the suggestions our panelists suggested is finding friends with Parkinson’s. The conversations won’t always be about Parkinson’s but having people who understand how you’re feeling and not asking those types of questions may alleviate some of the tension you feel in anticipation of these questions.

Thanks for attending this webinar. we hope to see you again next month!

Missed this webinar? join us next time!

The Living with Parkinson’s Meetup meets on the third Thursday of every month, and every session is recorded and shared for all to access. Register for the Living with Parkinson’s Meetup here, after which you will be invited to join live and notified when a new webinar recording is posted. Are you interested in catching up on past Living with Parkinson’s webinar recordings? You can find all recordings on various subjects on our Living with Parkinson’s Youtube playlist, and don’t forget to subscribe to our channel to be notified when new Youtube content becomes available.

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