[Webinar Recording] The Victory SUMMIT® Virtual Event: YOPD

YOPD VS featured image

“Give yourself permission to not only grieve what you’ve lost but also celebrate the fact that there will be joy, there will be laughter, there will be freedom.”
– Amy Montemarano, Davis Phinney Foundation Ambassador living with young onset Parkinson’s

On June 26, 2021, we held The Victory Summit® Virtual Event: YOPD, shining the spotlight on people living with young onset Parkinson’s disease (YOPD). All of the speakers offered knowledge, wisdom, and above all, the message that your life is not over because you have Parkinson’s; it is just the start of something new.

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

WELCOME AND Inspiration

To download the audio for “Welcome and Inspiration,” click here.

You can read the transcript below. To download the transcript for “Welcome and Inspiration,” click here.

Amy Montemarano (Davis Phinney Foundation Ambassador, YOPD Council Member):
Hi everybody, and welcome to the Davis Phinney Foundation Victory Summit Event today where we’re going to be talking about living well with young onset Parkinson’s. My name is Amy Montemarano and I’m gonna be your host for today although we have learning this morning that my computer and my zoom connection are having difficulty so I might end up freezing and coming back, but we are going to solve that problem as we go, I apologize in advance. One of the things that being diagnosed with Parkinson’s forces on a life is the need to shake off some things that don’t matter, the small stuff, and this is some of the things I would consider the small stuff. So, I’m hoping the technical difficulties don’t get the best of us. Another thing that Parkinson’s forces on a life is the need to reassess the things that you say no to in your life and the things you say yes to. I have been saying no to a lot of things that I normally would have said yes to before my diagnosis, but when it comes to the Davis Phinney Foundation it is always a yes. I always say yes, and that has improved my life immeasurable and that’s a really easy choice. So, I really want to thank the Davis Phinney Foundation for this opportunity. I love everything you do, I’m happy to be here and happy to be part of it, thank you so much.

I was diagnosed six years ago at age 48. And like many of you, the diagnosis came as a complete surprise. I was otherwise in the middle of a very healthy, active, busy life. I was still, am married and working full time and my two kids were in middle school.

Six years later, I am still working in the same job full time that I was before. I’m a faculty member at a law school here in Philadelphia. And I have also started some coaching on the side, career and life coaching that has morphed a little bit into travel coaching, so we’re having a lot of fun. And, well, my life has been made harder, of course, by having Parkinson’s. But there are many ways in which Parkinson’s has made it better.

And I want to put a disclaimer on that at the end, but in the ways that life is good, right, in strengthening relationships and finding purpose and meaning and personal growth and finding your own strengths and creating new things and helping other people and realizing the power that you have to do some good in this world, those are the things that Parkinson’s can turn from good things into exceptional things in your life and I know that that’s how it has happened for me.

Virtual Event: YOPD

You’re going to be hearing today from a bunch of panelists who come from different roles in the Parkinson’s community. Some are doctors and some are the wonderful people who work at the Davis Phinney Foundation, and others are people like me who are people with Parkinson’s, and they are all incredible but they’re also ordinary people who have who have turned their post diagnosis life into one with meaning and purpose and joy. And that’s what we’re here to talk to you about today, and I think if there’s going to be one theme that bubbles up over the course of the day it’s going to be this; Being diagnosed with Parkinson’s is not the end of you. It’s not even close. And I have personally received enormous gifts of spirit from being involved with the Davis Phinney Foundation and I want to encourage any of you who are out there in the audience who are newly diagnosed, to give yourself permission to not only grieve what you’ve lost, which is a really important step in moving forward but also celebrate the fact that there will be joy, there will be laughter, there will be freedom. There might even be some lightness of being after your diagnosis and the rest of your life and I want to encourage you to not just give yourself permission to enjoy that and celebrate that, but I also want to say because I’m kind of a preachy person, that you owe it, you owe it to the world, you owe it to your loved ones and to your family, and you owe it to yourself to enjoy the rest of your life in the ways that you can, and to live the hell out of life because you can, and others cannot. So, um, that’s my lecture.

And before I turn it over to to Mel and, and everybody who’s coming next, I do want to say that the messages that you’re going to hear today are going to be overwhelmingly positive about living the rest of your life after being diagnosed with the young onset. We don’t want to sound tone deaf, we definitely recognize that having Parkinson’s is really difficult, and that many of you and many of us struggle on certain days very much, and the message is not that you need to disavow that suffering or ignore it or pretend that it doesn’t exist. The message is that it takes some work and daily practice to shift your mindset to something more positive.

And in that sense, a particular quote by Mel, it’s something that I actually put up on my mirror and I look at every morning and that is, quote, “You cannot think your way into different behaviors, behave your way into thinking differently,” which I think is exactly what is needed in our post diagnosis lives.

And with that, I have the pleasure of introducing our first speakers today, although they probably need no introduction, Mr. Davis Phinney himself and Polly Dawkins who is the Executive Director of the Davis Phinney Foundation.

I am sure that Davis and Polly have a lot in common that I don’t know about but the one or several things that I do know that they have in common are that they’re both extremely resilient people who challenge themselves to their limits and have enormous hearts.

Mr. Phinney as you know is a former professional cyclist who turned all of that grit and strength of character and discipline that he used to become a professional cyclist into building this very organization after he was diagnosed with Parkinson’s at age 40 over 20 years ago.

And he is personally responsible for an enormous amount of good that he’s done in this world and tipping the world’s energy into something that’s really exceptional and remarkable, I just want to thank him for that. His sheer force of nature, himself, that’s doing all this, and I think it’s been so fabulous for this community.

And, Polly Dawkins is, will not remember this and probably doesn’t know that she is my personal hero, but I met her when the Victory Summit was not virtual, when it was going around the country and they came to Philadelphia where I live.

And she was on stage, and she not only was an enormously powerful speaker with a great message, but I was obsessed with her boots that she was wearing, so much so that I went up to her afterwards, and just I wanted to know more about her boots I couldn’t get enough of them. At the same time, she is someone who can finish the Ride the Rockies bicycle ride, which is over 300 miles, 20,000 feet up on a bicycle. And I think it was last week, maybe two weeks ago, in that hundred-degree heat right, so I mean, thus my personal hero, someone who can do a ride like that and also rock that fabulous pair of boots on stage. That’s Polly. So I’m going to turn this over to Davis and Polly.

Polly Dawkins (Executive Director, Davis Phinney Foundation):
Thanks, Amy. I don’t remember that, but thanks for that. Good morning everyone, morning Davis. We got to get you unmuted so we can have a conversation here.

Davis Phinney (Founder, Davis Phinney Foundation):
Yes, the proverbial zoom. Thank you, Amy so much. Can you hear me?

Polly Dawkins: Perfect.

Davis Phinney:
All right. Well I’d say that we should almost straight away give a victory salute for Amy.

Polly Dawkins: Ready?

Davis Phinney: Yeah, 123.

Polly Dawkins:
So, Davis, we have 20 minutes here to chat together today, and help our audience understand who you are a little bit more deeply and why we do the work that we do thanks to your leadership and your vision. So the first thing I’d like to ask you is, it’s been 20/21 years since you were diagnosed, but if you could take a journey back to the day when you were diagnosed, and the initial months after that. Can you tell us all what was going on in your head?

Davis Phinney:
Well that’s an interesting question because I almost have to back it up a little further and go to the days when I was searching for diagnosis but hadn’t yet found one. And that search was proved fairly exhausting because my wife and I would go to various specialists. And I’d have to tell my whole evolving health history, and never getting the right answer but having some alarming conversations with like a neurosurgeon who said, I don’t know what’s going on, but we better get inside that skull and find out. And so that being said it was kind of, it was almost a relief to have a diagnosis that wasn’t like terminal brain cancer And so, I would say that then going from that one conversation which proved correct, my diagnosis, that was, it was sort of the start of my learning to accept having this disease.

Polly Dawkins:
Great. Davis, what was the catalyst for you to seek a diagnosis?

Davis Phinney:
Well, I mean I had struggled for years with physical ailments that I couldn’t resolve via my normal athletic ends but really it was when I was working in Australia and this camerawoman was shooting me doing what you call on TV, a stand up. And I was sitting there shaking like a leaf and she was like, “Davis, what’s wrong with you mate, it’s not cold it’s like, it’s boiling hot here, you know, there must be something going on.” And so, in that observation, and that feeling of having this uncontrolled tremor in my body led me to go home and start down this adventurous path that I’ve been on.

Polly Dawkins:
So at that time, it sounds like you weren’t professionally, you were retired from racing, and you were a sports caster? Tell us about that.

Davis Phinney:
Well, yeah, I mean, I had been retired from racing for almost seven years at that point and had involved myself in too many endeavors almost. I was in perpetual motion and constantly traveling and going to events and broadcasting and working in sports marketing, and Connie and I had our bike camp business, and two small kids and I was like the proverbial soccer dad. So I was just going like so fast and so I had to sort of take stock at that point and figure out A, how I could maintain an income stream, but B, what jobs I had to let go of as they weren’t going to be conducive to my good long-term health.

Polly Dawkins:
Which jobs did you choose to stay with?

Davis Phinney: Relinquish or stay with?

Polly Dawkins: Yeah, to stay with.

Davis Phinney:
I mean the choice was between suffering for my job, which was mainly in television, and the travel and stress there. And I’d already noticed a decline in my ability to come across naturally, and what not. And so that job went but the job that I hung on to for almost 10 years longer was the bike camp business that was controllable to a degree and my wife was the architect of those camps.

And in a large way what the camp provided for me was somewhat what the Parkinson’s community is now on a much greater scale, which is that I was able to connect directly with people and get them enthusiastic about cycling and change their lives in a positive way.

And that I felt was really powerful for me, for someone who was starting to lose ability in various areas, just to have that capacity to still inspire, is what’s gratifying.

Polly Dawkins:
Sure. So when you were diagnosed and you were going through the process of deciding what you were going to keep in your life, your career, your kids were young, you said, you were 40. Tell us a little bit about what resources were out there when you were diagnosed, and what were you told to do.

Davis Phinney:
Resources? What resources… I mean one reason that I started the Foundation was to help guys like me, who were middle aged or, at some point midstream in their lives and had had this big interruption. And to help to provide answers for some of the questions, because I felt like I was very much alone in those days, and that was not a good feeling.

Polly Dawkins:
Yeah. So, when you’ve talked about starting the Davis Phinney Foundation, when you were diagnosed for a few years, when did you realize that your own experiences and the tactics that you were employing to live with Parkinson’s and your voice could ultimately help others with Parkinson’s?

Davis Phinney:
Well, I mean it was a few years from diagnosis to the Foundation starting, and even in that the Foundation didn’t start with quite the same vision that it has today. But again, I mean my basic personality is to be able to inspire people, I mean that’s what gives me energy and whatnot. And I would see people, and they would remark that you know, geez, you look pretty good.

And I would think well I must be doing something right. And so, those kinds of interactions, as well as running into people who would say, well, I’m just waiting for somebody to cure me. But while they were waiting, they were precipitously declining because there was no action oriented in that way.

And so, I felt like if I could stimulate my own neurons to fire more to behave a little bit better that maybe that same protocol would work for others.

Polly Dawkins:
Was that grounded in your experience as an athlete and how have you used that perspective to live with Parkinson’s?

Davis Phinney:
Yes. I mean, that’s a great question because I think that all my life, I’ve been training in a sense to live well with Parkinson’s.

And the way that I define how you live well, and what you need to do, is to stay active and stay engaged, and as Amy said, stay positive. And it’s not one thing. It’s all the things that you do throughout the day. And it’s all the engagement and it’s not saying no, again, as Amy said, it’s not saying no to the invites, to do a class, or get involved or in some way, find those moments of joy. And that’s what I would say equates to making every victory count.

When I was a bike racer, making every victory meant every town sprint sign that you’d go by in a training ride was like an opportunity that you couldn’t let pass up. So the group of riders who were just out for a training ride would all sprint for these town city limit signs and you know, yeah, if you did that sprint, that counted for something.

And so today, living with Parkinson’s, it’s quite a bit different, but the feeling of victory can be somewhat the same if you give it the attention. And you’re able to focus on the little things whether they’re, you know, your daughter coming upstairs as she does because my daughter lives downstairs from us and she’ll come up just seeing her smile, that’s a victory. You know or taking the dog for a walk. You know, whatever it is, if you give that positive spin then I feel like that’s a way of living well on a consistent basis.

Polly Dawkins:
Have you approached living with Parkinson’s exactly that way for 20 years or have you grown into that perspective?

Davis Phinney:

I’ve grown into it because you know initially when you’re diagnosed, you end up, I mean I ended up floundering around a little bit, because it was not as the doctor advertised, which was the, you know, once you take meds, you’ll feel as good as you ever have.

And that was not true, but also at the time, conventional wisdom said that Sinemet was something to be avoided until you had gone through your choices, but the agonists didn’t work for me. And so I ended up kind of falling off a cliff in the beginning, and I had to scramble up and climb back up and figure out how to deal with this disease but again, I didn’t have the information, which the Foundation now provides to find those answers to the difficult questions.

Polly Dawkins:
You must be proud of that.

Davis Phinney: Yes, exceedingly.

I mean, I feel like you and others give me too much credit for being the namesake of the Foundation. But if there’s one thing I’ve done, it’s been true to the vision of how do we help people the most to live their best with this disease.

Polly Dawkins:
So if you were to look back over lessons that you’ve learned and thinking about our audience today of what seems like a lot of people in their 40s, maybe recently diagnosed or living with young onset Parkinson’s for some time, what would you say are three pieces of advice that you would give to our audience as we wrap up here today?

Davis Phinney:
I would say again, to reiterate, just be consistent, create healthy, sustainable habits, and then stick with those habits, and define how you’ve achieved your best day recently and then focus everything on recreating that.

So that would be one piece of advice. And I agree with Amy that attitude is so important, and if you can manage to stay positive and stay upbeat and use your smile to fight the mask, then that’s another critical component of living well.

And lastly, I would say, if you can connect to this wonderful community, which is our Parkinson’s tribe, then that is as important as anything to know that you’re not alone. And that you can reach out to someone, and they’ll have, and they’ll be a friend or give you an answer to your question. And so, connecting with the community, especially in this time as we transition out of the pandemic, the pandemic has certainly been hard for all of us, but I feel like if we can count on each other and back each other up then that’s an important point to true.

Polly Dawkins:
That’s so true. Wise words from Davis Phinney. So, I heard, create good healthy habits, stay positive, your attitude and connect with your community, this community. Really sage advice from the one and only Davis Phinney.

Additional resources from “Welcome and Inspiration”:

Hindsight is 20/20: Thoughts from an Old, Young Onset

To download the audio for “Hindsight is 20/20: Thoughts from an Old, Young Onset,” click here

You can read the transcript below. To download the transcript for “Hindsight is 20/20: Thoughts from an Old, Young Onset,” click here.

Melani Dizon (Director of Education and Research, Davis Phinney Foundation):
I’m excited to introduce Pam Quinn, she is going to be talking about hindsight is 20/20, thoughts from an old young onset.

Pam danced professionally for 20 years and has had Parkinson’s for over 25 her personal experience of Parkinson’s along with her keen knowledge of the body allow her to analyze movement problems and create solutions to help manage them, among many other things. Pam developed PD movement lab, a functional dance class for people with Parkinson’s which she teaches regularly in New York, and at conferences around the world so we are so grateful to have you here today, so Pam I’m gonna let you take it away.

Pamela Quinn (Founder, PD Movement Lab):
Okay, thank you ma’am. And thank you, Amy, and Davis for your perceptive words were right on target. And I have a little quote that I use, keep a smile on dealing smile and mast face, and this this this. So you can use that.

I’d like to thank the Foundation for inviting me to share my thoughts and experience with all of you. I’ve always thought that Davis Phinney Foundation is a great organization, and I’m honored to be here.

I’m going to begin by showing a video of a dance I made a number of years ago. It’s called Welcome to our World. And you need to make sure your volume is all the way up when we play. Okay, let’s take a look at that.

{Video Transcript, Pamela Quinn speaking}

My first son was in first grade, he came home one day and said mommy said you’re gonna die soon. I said, we’re all gonna die, sometime but I’m not gonna die soon. He had only known me with my Parkinson’s. How I moved was normal to him. He had never seen me as a professional dancer.

It angered me that his sense of security my world was being affected by this disease. It was a beautiful spring day. I was walking up out of the subway and a man’s eyes locked onto me, he said I’m going to heal you. He was wearing a big black cape he said I’m gonna heal you and he found me down the street, and he did kind of heal me because he made me walk a whole lot faster and once I got away from him I thought maybe he’s an angel in disguise.

My second son, Liam, was two when the World Trade Center was attacked. I was pushing him in a stroller up the West Side Highway. There were throngs of people, they were hysterical, they were calling on phones, they were shaking. Everyone was shaky.

I felt guilty for taking pleasure in that moment. I didn’t tell anyone because it felt disrespectful. Parkinson’s is full of surprises. And contradictions. Sometimes we can’t move. And other times, we can’t stop ourselves from moving. We’re like athletes because we nurture our bodies, we could cajole them, we work them every day, and how we feel about ourselves at any particular moment is directly related to how our body functions. I’ve had this disease for over 15 years. I hate it. And I’m thankful for it. I hate the fact that it’s robbed me of my body, of my dreams for my future, of things I can do with my kids. I’m grateful for the patience it’s taught me, the compassion, perseverance of spirit.

Welcome to our world.

Pamela Quinn:
None of us chose to become a member of this group. We may not appreciate the assumption that we would even want to be extended a welcome. But despite our anger, bitterness, shock or deep sadness that result from becoming a person with Parkinson’s, there are some profound and good experiences that accompany it.

I am deeply moved by the joy, and determination I experience from my students who take my PD movement lab class. All the while dealing with adversity, and sometimes great difficulty and I, myself, understand like I never have before the power of helping others.

And this nature’s not completely charitable because helping others is also about helping myself. It’s the best antidepressant around. Would I wish this disease on anyone I know? Never.

But all we can do at this point is take what we have and make it into something worthwhile and hope that that process will bring relief to those who suffer, and a renewed sense of purpose to ourselves.

And is it the last World Parkinson Congress in Kyoto. I passed room that had vibrant energy coming out through its door. The room was full of people with young onset PD. They were a talkitive vicious group. I realized that that instant that I had aged out. I was no longer part of that group.

And at that moment I thought we need each other. The younger set could learn from us, older young onsets, how we had managed with families in work, how we dealt with having to trash our long-held dreams for our future.

How and from whom did we hide our disease? And what advice did we have about financial planning, etc? And in exchange our weary efforts could sure use a dose of their youthful energy and fresh determination they displayed to further our cause.

And I also thought, if I had to relive my PD, all over again, what I change, and what would I keep? The posing of that question and its answer is going to be the focus of my talk today and then we will move together.

The we have a title slide. All right, the title slide, it says, “Hindsight is 20/20: Thoughts from an Old Young Onset and what to keep and what to throw.”

First thing I would keep is my faith, and my own perceptions. In the beginning, I knew nothing about the disease. In many ways, this was a godsend, it gave me the freedom tonight easy and presumptions presumptuously think that maybe, just maybe I could beat this condition such delusion was good.

It fosters creative thinking and approaches to the challenges I faced. I was not afraid to try things, anything that came to mind. And upon diagnosis to my surprise, by doctors advised me to limit my movement. This was the pervasive and accepted as to exercise at that time.

The fear was that strenuous or complex movement will lead to a fall. But it didn’t appreciate the level of physical training, I had as a professional dancer. My knowledge of the body was extensive, and I knew I was at my strongest when I was training hard and really, I questioned their advice. And my suspicions were further aroused by the fact that there was no physical training whatsoever as part of my first doctor visit, because they call themselves movement disorder specialist. I naturally assume that they would offer me some advice that I haven’t moved.

So when they offered no training. I was surprised crestfallen, and curious and suspect. I resolved myself that I would follow my own instincts regarding movement, and I would do it made sense to me, which in this case with to do just the opposite of what they recommended.

I would embrace movement and engage myself and whatever ways. My body’s into me. I would experiment to find what movement forms helped me the most. When I started to limp, I used my dance training to understand what was going on and topically and tried to find ways to coax my body toward normalcy.

There was also a certain shame factor that inspired me to correct myself. I just wanted to be normal. And on top of that, I wanted a second child. So improving my physical stuff with medication was out of the question.

I was determined to find nonchemical ways to help myself move. And I did.

But the main point and tell you this is not to encourage you to ignore your doctor’s advice, but to encourage you to question whatever doesn’t make sense to you and to pursue those questions.

I love my doctor and thoroughly dependent on her knowledge of disease, and the drugs that are available to me, but I’m also glad I followed my own instincts in regard to physical activity.

Science eventually caught up with me.

Second, I didn’t keep analyzing and thinking about my medication. A few years into taking my meds, I asked my doctor, how can I get the most out of the medicine I take? I couldn’t believe I hadn’t asked her that sooner.

She said, if you can tolerate it, take your meds on an empty stomach with a full glass of water and wait about 30 minutes before you eat. This was an important question both being able to function as soon as possible. And for keeping my dosage as low as possible by getting the most of the meds, I was taking, subjects also introduced me to the relationship between eating and medicating, and the relationship between constipation, and the effects of medication. Basically, you can’t absorb the meds, effectively, human levodopa is our main chemical. I’m surprised that more research hasn’t occurred that would let us know more about optimal use and absorption.

There’s a second part to this medication section as well. That is increasing my dosage in small increments and the makers of the medicine manufacturer. I cut my Sinemet into corners when I need to increase my dosage. Why increase by 100%, 120% when 5% will work.

As I broke my pills into approximate corners. I had to wonder if the chemical substance in the tube was evenly distributed. Manufacturing these methods in smaller increments would be a big help to us early onset, and it would be something easily accomplished. In addition, it might deter, postpone dyskinesia as much as possible.

I understand about the relationship of Sinemet and dyskinesia, it’s that it’s not a cause and effect relationship, but they are connected. Beyond medication for longer at higher doses, basically more likely to develop it. But that doesn’t necessarily mean that this is something you will experience. It does mean however you want to be careful and specific in order to find the right dose.

You take what you need to exercise vigorously is exercise, the only known preventive measure we have the same time you don’t want to overload your system, finding the right balance require where you’re tweaking and collaboration with your doctor.

I faced this issue a few years ago and changed my medication to positively effect with my doctors helping lesson.

Let me show this video. There’s purposely no sound here. {Shows a video of Pamela with dyskinetic movements}

See the movement? So, I had been on retiree for about a year. And I suspect that that was covered in making me disconnect, because that’s the only change I had in my drug regimen. I asked my doctor if there’s any problem with me going back on Sinemet.

She said there wasn’t, and she made the intelligent suggestion to taper off my drug dosage in the afternoon. Because artificial dopamine tends to build up over the course of the day. So, I only took half a Sinemet from investors may this adjustment and my dyskinesia mostly disappeared.

My friend, Josh Coats, a prominent neurologist from Columbia Medical Center, talks about the sensitivity and complexity of the energetic system, which is one reason why it’s so difficult to understand and emulate. By contrast, the drugs we take function in a growth manner. So, that medication can be emphasized and variable costs, individuals are analysis of how drugs are affecting our bodies, is a very important part, getting the most out of our treatment.

Third, this means being specific and detailed with my descriptions of how I’m doing, listening to a doctor’s advice, questioning what doesn’t make sense and approach in that relationship as a true collaboration. If your doctor isn’t willing to do that, look elsewhere, get a second opinion.

So those are some practices, I would keep.

What would I change? The first change would be to strike a better balance between physical challenge and safety on behavior, I regret not having not finding the right balance between physical challenge and personal safety. I love moving, combined with my lack of heat and awareness to warnings that signal that particular threat of moving in a certain way, by running backwards, caused me to permanently injure myself.

I overestimated my physical prowess and overstepped my physical limits. I broke my wrist, elbow both badly, and will not have normal uses them, the rest of my life. If I had been sufficiently observant, I could have avoided these two breaks. Denial, and ego worked together to blind me in a major way.

Second, I would change the time I waited before going on Sinemet. If I could go back in time, I would go on this drug sooner than I did. It’s an amazing drug, and it allows us to exercise, which is the only known preventive measure we have initiates manage sensitivity and a willingness to endure some of the difficulties of being in an off phase and taking the drug earlier is well worth potential downside that may accompany it.

I missed out on doing some activities with my kids, which I was too embarrassed to them, because my physical state.

Third change. Don’t put off experiences you’re saving for retirement. You will never be as good as you are at this very moment, seize the opportunity. Take that rafting trip you’ve always dreamt about, don’t put things off do them I can travel. So a shame and live your life force change how long it took me to go public with this disease.

I was reticent to share my diagnosis. I didn’t tell anyone except my husband. This can be isolating, very alone, is I process. This new reality. If I had to do it over, I would shorten the time in telling people my news. I could have developed friendships sooner. I wouldn’t be so alone and dealing with the trauma of the diagnosis.

So, these are my main achievements and regrets. I hope you can benefit from parts of my approach. I will keep and seriously consider what I would do differently to bring my talk, out of the past, into the present and the end video I made my students that our covert experience. I hope you relate to it. It’s called Boston. Let’s take a look. And then we will move together.

{Shows video}

Pamela Quinn:
All right, now we’re going to move together. I need you to be a firm chair, preferably without arms, so you have moved to the side to move your body. If there’s anything I do that hurts, back off. If you have balance problems when we stand up, you can hold on to the back of your chair.

These are all exercises that are made specifically to address PD symptoms, mainly rigidity, amplitude of movement, lack of extension. I’m not going to have you learn the sequence, you can just follow me, the moves and the tempo are slow enough to do that.
{Pamela leads a dance}

Additional Resources for “Hindsight is 20/20: Thoughts from an Old, Young Onset”:

YOPD: Biology, Treatments, and Living Well Today

To download the audio for “YOPD: Biology, Treatments, and Living Well Today,” click here.

You can read the transcript below. To download the transcript for “YOPD: Biology, Treatments, and Living Well Today,” click here.

Amy Montemarano, JD (Davis Phinney Foundation Ambassador, YOPD Council Member): Next up we have Dr. Rodolfo Savica who is a Professor of Neurology of Practicing Neurologists and Movement Disorder and Behavior Specialist at the Mayo Clinic in Rochester, Minnesota.

He’s also a PhD. He has a particular interest in early onset Parkinson’s, and initiatives regarding the clinical practice and research of early onset, and he is the chair of the International Movement Disorder Society Task Force on early onset Parkinson’s, and he leads a lab with the goals of finding a cure and improving the quality of life for people with Parkinson’s, Welcome Dr. Savica, thank you so much for being here.

Rodolfo Savica, MD, PhD, (Faculty, Rochester Mayo Clinic):
It is my pleasure. So, I would like to first of all thank everyone at the Davis Phinney Foundation. Thanks all the people, speakers, thanks Melani, thanks, everyone, that I’ve had the opportunity to listen to and talk to. And that Foundation that gave me the opportunity to talk to you today.

And I wanted to say right away, there is in its own nation is doing an excellent job to feel as we heard earlier on, Mr. Phinney talking about that. There was a purpose fill the gaps that are there for young onset Parkinson’s location that working and trying to put people together. That is a very important mission and we’re going to talk more about it.

I decided not to prepare slides, not put slides up for a major purpose, because I think that our audience, everybody have heard 50 million times about Parkinson’s disease, what he develops, how it goes, what are the proteins, and the problem that we have in these, in this situation is that we are talking about that condition, but he’s not very early on one is know what we’re facing here today.

We’re using knowledge of a condition that affect people in their 70s. And we are translating it in a condition is affecting people in their 40s/50s. The important thing that I want to cover, a few messages I want to mention is that the biology underlying the condition, the young onset Parkinson’s disease is absolutely, totally different than what we see in late onset Parkinson’s disease. So then why we call it Parkinson’s disease when it’s a different condition?

Well, you don’t have better term, I would say, not so far. And in the past, there was this tendency to put together to clump together this condition, as one. We know now that we are not talking about one single disease.

Virtual Event: YOPD

We’re talking about a number. A number of diseases that are different, our biology that are ending, ending we got the degeneration, with the death of some of the neurons, of the brain, but their final outcome is caused by a number of different problems, not by the same problems. So that’s why talking about that first a new clean, talking about all the positive everybody’s in the brain in somebody in his 50s and 40s.

I don’t think it’s going to be a good idea because it doesn’t represent the real truth here from a biological standpoint, what we know now is that for a reason that I get quite unclear.

There is a group of cells, the cells of the basal ganglia, the famous cells of the basal ganglia, So the nuclei of the caudate, the putamen, nuclei that are indeed involving Parkinson’s disease, for a reason that we don’t know. In the younger individuals can be affected earlier on by a number of other biochemical pathway that are causing the damage that is equally similar to what we see in late onset, but it’s different.

What is different about it? So late onset, we do have an accumulation, a lifelong accumulation of alpha synuclein, something that starts like in our 20s. We know symptoms are minimal symptoms, and with time, it grows, it grows, it affects that the bowel. It affects the olfactory bulb so causing people to have hyposmia, it affects our tendency to smell, to have insomnia or having agitated dreams. And then, after 20, 30 years, 10 years of mild symptoms, then people are having tremor, people are having the rigidity people are falling, therefore the diagnosis of Parkinson’s disease starts.

There will be totally fair, and right, if we are talking about Parkinson’s disease in general. But we all know we have 136 participants, and I’m pretty positive, pretty positive that what we are, indeed, experiencing, as a group is not what I just told you, I don’t think that many people experienced for many years, constipation, I don’t think that people are experienced for many years dream enactment behavior disorder before the disease start. I don’t think that people have hyposmia for a long time. What does it mean? It means that the biology is different. It means that right away, younger onset Parkinson’s disease we have an immediate damage, that is faster, is somehow more precise, less slowing progressing. That affects specifically the nuclei. Specifically, those cells, any just one question I want to tell you, I see you, I don’t see me talking, I don’t know if the audience are seeing me talking or you.

Amy Montemarano:
Dr. Savica, I just want to jump in for a second. So, there are some questions being asked but I will take them from the chat.

Rodolfo Savica:
I want to make sure, I don’t know if they see you or me when I talk.

Amy Montemarano:
I hope that they see you, they see you, and I don’t want to interrupt you,

Rodolfo Savica:
Oh good. I see a little version of me, that’s why I’m asking. But that is an important thing. A much more focused and much more precise damage to where the basal ganglia. Coming, as I mentioned from different sources. What are the different sources? I think that this is a moment to understand that we are dealing with multiple disease, even young onset Parkinson’s disease.

I’m pretty sure that what we just saw what we just heard may apply to some but not to all what we just saw what we just heard is different in all our 136 participants, and everyone, as they need, and we had the necessity biologically, and in terms of treatment to understand the differences and to customize the treatment, make sure that we are dealing with a unique pathology. I want to mention and then we’re going to talk more about some of the questions and totally happy with that but there’s couple of things.

Nowadays, every patient with young onset Parkinson’s disease that comes to my door has been heavily tested to look for what they call mimickers. So, conditions that are called Parkinson’s disease or Parkinsonism because this is what we call it. Why, because the symptoms are tremor, rigidity, stiffness, falls, but they are inherently different, because they have a different biology, I give an example.

A very common condition is a disease, Gaucher disease is that pediatric, so pediatric condition that seems to be affecting more Ashkenazi, Jewish people, causing a lot of GI problems, but we know that if a patient is carrying one gene not two, one defective copy, so if you have two copies of defective gene, then you have Gaucher disease, but if you have only one copy it may be another another gene that is not yet clear, a variant, what we call a variant of uncertain significance people may have Parkinson’s disease, people may look like Parkinson’s disease. People may have a metabolic condition characterized by an increase level, of one group of proteins that are belonging to the class of lysosomes causing the damage, similar to Parkinson’s disease. Why this is important. Well give an example, there’s some ongoing trial, about potential medications that are available in Europe already over the counter that can potentially block these accumulation

of these proteins. I am working heavily on that with some colleagues from Israel. But unfortunately, couple of things happen, other than coronavirus.
As you may know, just a couple of weeks ago in Israel, there was some sort of work and sort of attacks or this delayed many things with my colleagues in Israel but guess what I’m working with the pediatric people I not working with adult neurologists because they are not aware of that. I give an example if my patients coming back with this result, then I had to involve a pediatrician, one of my colleagues, which is an expert on this particular pediatric field.

Pompei disease, Pompei disease is an incredibly rare condition. But it’s, again, caused by an accumulation of some proteins that are membrane proteins that are important for the neurons well-being. But yet to search for that why? Because if somebody has Pompei disease, if somebody has Gaucher disease, if somebody has some other condition that are rare mimickers, rare conditions affecting the kids that then can linger in the adults, they may not respond to the medication.

They may not absorb the medication, and therefore the delivery of carbidopa, levodopa, whether you do immediate release control release inhaler or whatever is completely impaired. And that is a problem.

In terms of customization, my patients are coming here and we have to study their biology, extremely different, each single individual. But then one thing that you do almost everyone. We end up looking at the genes. Not because genes are the genetic background, it is the answer to all our questions, because sometimes, many times, some genetic defect., genetic mutation can explain some paradoxical response of the treatment, and it’s very important. I give an example. I was doing before giving slow increments of carbidopa/levodopa which is always what we do, whether it’s a quarter, a half but there is some genetic mutation, which is a more benign Parkinson’s and so something that doesn’t progress as fast, very small doses of carbidopa/levodopa can cause a lot of problems, can cause dyskinesia, can cause dystonia, can cause a paradoxical response, way more than what we see in life, way more than what we see in our patients so the entire idea of understanding their biology, one individual is this.

I need to be knowing what I’m dealing with. And what I’m dealing with personally is different than what the other patient next door will work with. I’ll give an example also is important, Ms. Quinn, was very good at talking about the young onset patient, I always say to my patients once you’re a young onset patient, you’re always a young onset patient. In other words, you would be able to be different than the older individuals, but obviously there’s age, age comes along.

So if somebody started with a Parkinson’s disease diagnosis in his 40s. Then his 70s or 80s, and still as the condition it is aging ongoing. But, for example I recently seen an individual that has been having that these mutation part two for about 20 years. The disease has not progressed but every time I give a smidge of carbidopa/levodopa there’s massive reaction. So then we have a problem to work to do, but the entire goal is to really focus on customization of treatment, prognosis and medical management.

The last few years, I tried to dedicate myself to develop a different idea regarding young onset Parkinson’s disease the idea is to have a complete holistic approach that goes from medication from prognosis for sexual dysfunction from social aspects for exercise and go on and we’re going to talk more about some of these aspects because those are part of our life, and it’s very relevant that we do that.

One thing I want to mention that is also quite important for a biology standpoint. One of the big original sins, let me pass a biblical term of young onset Parkinson’s disease is to think that people that have young onset Parkinson’s disease, have a strong family history of Parkinson disease. It’s not the case. It is possible. I’m sure many of our people that are in the audience here, do not have anybody in the family with Parkinson disease, despite having young onset Parkinson’s disease.

And this sin, this original sin, came to the fact that the first studies looking at young onset Parkinson disease were looking at young individuals that were part of large families. And this prompted to identify about 26, 27 genes that are the most common genes of Parkinson’s disease, that are indeed relevant for the prognosis, and they can tell us more about it, but these 26 genes are showing only are really partial part of the truth.

They show only the group of patients that are positive are the ones that can have, maybe some sort of family history or maybe they don’t know they have, this is an important point because the vast majority of patients do not have a strong family history.

So when we look at our genes we are looking again at a very small portion of the truth, and I keep saying that, and it’s an important theme.

Amy Montemarano:
Dr. Savica:
Can I ask you a question, that sort of frames up what you’re talking about.?

Rodolfo Savica: Sure.

Amy Montemarano:
I know I’ve heard you say before it’s difficult to define what young onset is versus what early onset is. Can you explain that a little bit more?

Rodolfo Savica:
That’s right, yeah. Okay, okay. No, I’m joking about it. But he’s an important point. One of the first purposes of the task force that I am honored to be the chair of is indeed to have a clear-cut definition of the age.

And this is a problem. This is a problem because age is different, that consideration of early, young or not, is something that depends a lot in terms of culture, as cultural differences, country differences, I always give the example and some of you have already heard about this example, in Australia 65 is the age considered young onset just because it’s the age of retirement.

I don’t know about that, you know, it’s not necessarily the truth there. I think that currently young and early onset are considered synonyms. I say, early onset, when we are talking about something that is earlier than what we are expecting in the population.

The age of Parkinson’s disease in the population, the median age is about 65 to 70 years old, more or less in terms of onset of the motor symptoms of Parkinson’s disease. So, everything below before that can be considered earlier onset. Nowadays, the idea and the nomenclature seem to be moving more toward the idea of using the term young onset, which I like. I was not convinced about that, but with time I convinced myself it’s the best term, young onset, and the idea is to use more or less 55, in terms of age of onset before 55, but then you say what about somebody 57, 60, where we going with that?

Well, they are still considered early onset to some extent, but we don’t know. In terms of biology, are we dealing with somebody with an earlier biology or with a later biology? That is an important point because, as I told you before, this changes completely the way we treat the condition.

And that is a, that is an important thing. A very important thing, because that is a major fight. I’m serious about it, that’s why I say, let’s get ready to fight because that is something that constantly, and I’m losing years of my life trying to put together, try to put together with my colleagues and not only my colleagues, but also reach out to some patients, and patient groups, and everybody has different ideas, but why is it important to define? It’s important to define for research, but it’s important to define also for legislation to advocate, right? If, let’s say, the Davis Phinney Foundation wants to go in front of the Congress to advocate more resources for young onset Parkinson disease.

The first thing that a congressman would ask is, okay what is the age we’re talking about. And if you’re vague about that that is not going to be good. So, that seems to be a silly dispute but it’s an important issue because there are biological and also practical very practical implications. That’s an important thing. I hope I answered the question but it’s not very easy to answer this question.

I have some other questions here that are actually very, very nice. And I think I can cover some of them as I speak a little bit. For example, somebody saying, in Canada young onset is under the age of 50.

So, you see that is not stable across, it’s not defined across the different countries, even in North America. If you ask 10 colleagues, as somebody said before, so called movement disorder experts, and somebody said, can you give me the definition of young onset, you get 10 different answers. Trust me, you get 10 different answers so it’s something that we are required to adjust and we are trying also to educate.

I don’t want to drift a little but it’s important, education, teaching residents, teaching future movement disorder experts that we are not dealing with Parkinson’s disease, our patients in the 40s and 50s, they’re in top of their life. We are not dealing with patients, with all due respect in their 80s, or 90s, again, with all due respect, we need to deal with these patients as well. But there are some social, some situations, some issues, kids are young, you are still working. If we do not educate that there’s a difference there and if I don’t start doing that, we don’t start to do that, there’s a disaster. That’s what I like about your Foundation because it’s trying to do that and it’s a very important thing.

One thing I want to tell you. Let’s move because I’m concerned I’m gonna run out of time, I want to leave some time, I want to answer some questions.

Okay, let’s say you see your physician, whether he’s a so-called movement disorder expert or a neurologist or whoever, you receive a notice of Parkinson disease, what to do, what to do next.

Okay, make sure that all the mimickers, you need all the tests, all the scans, all the genes. Everything is pointing to a young onset Parkinson’s disease, maybe you’re 48. What do you need to do? Well, I need you to treat you. We need to make sure that you’re good now. I really like what Ms. Quinn said, I wish I had started medication earlier. I wish I didn’t defer anything for later. That’s important. I always the analogy with diabetes.

If somebody has diabetes and their glucose is too high, we can try as much oral agents we want, but ultimately, we need insulin. Our insulin here is Levodopa. And there’s a point that we need to use it, because otherwise people, as mentioned before, cannot exercise correctly. People can be slower, people can suffer. And we are not talking about movement, sometimes, levodopa is actually for mood.

Many times, it is used to increase the mood, increase the memory. As many patients say, I have brain fog. Why? Because the dopaminergic system is not yet simulated correctly. So first thing is to find a treatment that works for yourself. Whether it’s a quarter of a tablet, whether it’s three tablets, whether it’s a different drug. It’s okay. You have to partner closely with your physician, and we need to tell your physician that the patients know the body better than anybody else. I don’t know your body, especially if you know about, you know, dancing or martial arts or you’re very well aware of your body, or you’re an athlete, you know your body better than anybody else so you can tell your physician, what is your requirement, your daily requirement of medication, that can vary according to the days, and according to their physical needs. What I mean with that.

I want my patients, all to exercise, all of them, but clearly if you have somebody in your 40s and 50s, I want them to exercise regularly. I want them to go, they want to do a boxing class? Good. Go to a regular boxing class.

I have some people doing grappling, wrestling, go to regular wrestling class, but then you say, you know, they’re saying that the problem is that when I go to this class, I am feeling good, but not necessarily immediately. Sometimes, I feel that I need more Sinemet. Okay, before class, on that particular day you go to class, you take a little bit more.

And we customize, we tailor the treatment according to your individual needs. But then you say okay, but what about dyskinesia, I’m terribly worried about dyskinesia and you’re right. There are some group of patients that have some specific mutations, particular genetic characteristics that make them more at risk of dyskinesia, compared to others. Our current studies shows that 52% of patients at eight years, with early onset Parkinson’s disease, defined before the age of 65, they experience some dyskinesia.

Some of them is really modest, some of them are having severe dyskinesia, but this means that 48% are not developing that. 52 are, and this means that dyskinesia as shown before requires some adjustments, requires some clear ownership from the doctor and from the patient to adjust according to the needs, and according to what we can do. But people can tell you, I have many patients that prefer to be dyskinetic than be unable to move and this is a true story. It’s something that we are required to find a balance according to the need. So this can be considered a very severe and bothersome symptom is not necessarily something that we cannot battle and we can work together to improve it in the vast majority of cases, that is an important thing and it’s true. The more medication you need, the dyskinesia there’s a risk of. Sometimes even small doses can cause that according to the individual needs of the patient. And maybe the characteristics of the patient.

One thing I want to mention, because the other part of my talk was living well, so treatment, as we know, we have one gold standard medication, which is carbidopa/levodopa, we have the agonists, we have other medications that are used at times, but the gold standard is the carbidopa/levodopa.

What about deep brain stimulation? Is deep brain stimulation the last beach, the last resort? Not at all. Deep brain stimulation is a procedure that can be done, needs to be done when it’s needed.

Sometimes it can be very early in the disease, sometimes it can be later in the disease, but it’s done when it’s needed, it’s not a last resort, and it’s important to see, what can I achieve with deep brain stimulation. I have a little tremor, fantastic, that works for you. I have a little tremor, I am stiff and rigid, will this work for me? Maybe not as much, but I’m generalizing here, but it’s important to consider deep brain stimulation as a possible tool that we have, but it’s not the last resort. And it’s an important thing to consider, because that is what some of my colleagues wrongfully are thinking still. And it’s coming again, to try to translate information from a different disease into young onset Parkinson’s disease.

Another big thing about living well, so exercise is crucial. I always tell my patients, pleasure. Pleasure doesn’t mean doing exotic things, it means carve time for yourself. Pleasure also is part of having a fulfilled life, which I like.

I heard even, Mr. Phinney say, please live your life at your best, and it’s exactly what we need to be doing. This condition has a social stigma that we are still working on, and it is tough to remove, but it’s a condition that once there, nobody would like to have it, but we have to face it, to have a full life. This means, please be vocal with your physician, be vocal with your friends. If the antidepressant that you’re taking is causing you to have urinary retention, or is causing to have erectile dysfunction, tell them right away. Those are examples of practical things that you can see.

If you see, and if your physician doesn’t want to change it, or blows you off, change physicians. I’m sorry to say that but it’s the way to be doing it at times, if you don’t find a good connection or somebody that is willing to work with you, customizing your treatment, that is not the right choice. Okay, that is not the right choice whatsoever.

One thing that I want to mention, I’m very big into supplements and diet. Supplements need to be cheap, need to be making sense. All my patients, as you may have heard, many times, are using folate, B6 and B12, all of them. And all of them are eating more flavonoids.

So the little chemicals that are present in the skin in purple and blue vegetables and fruits. What about all these very expensive supplements that you find online that are claiming this or death effect, are these detrimental? Not necessarily, are they detrimental for your pocket? Absolutely. They’re cost a little money.

Do we have strong evidence that this would work? Not necessarily. If I don’t have that strong guidance that something would work, I don’t give to my patient, because I am not happy about giving something just to try. That is for sure. And supplements, there’s so many. One thing I want to tell you right away. And please bear with me and then I’m going to answer some of these questions, is what about natural carbidopa/levodopa? I don’t take Sinemet, I am anti- drug. It’s a normal thing I hear. I am anti-drug and I guess anti-pharma, I don’t want to use it, I don’t want to take drugs, but I’ve found this particular thing called mucuna pruriens that can use instead of carbidopa/levodopa. Is it wrong? No, it is not wrong, but it’s not right.

So, what is the problem? Mucuna pruriens is what we use to extract dopamine, to put it in the legal norm. But every plant, every single plant of mucuna pruriens has a different amount of dopamine. Sometimes you get 50, sometimes you get 70, sometimes you get 25, so we don’t have a clear dose that we can use. In addition, what is carbidopa? Carbidopa is used to kill the nausea, block nausea. Mucuna pruriens doesn’t have that.

So there is an increased risk of having people really vomiting, and having major puking if they use that. It is used in developing countries. It is used sometimes in Africa, where there’s not access to the drug, and I’m okay with that.

But I don’t see a good reason why using it here when we can have a pure and most purified and as you hear before we need to customize little doses, sometimes a little change of the dose can make a world of a difference.

So, I usually suggest my patient not to go that route. Some people are doing it, I don’t recommend that, I would say.

Now, if it’s okay with you, maybe for the last 15 minutes we can, more or less, we can, we can answer some questions. Some of them are very interesting actually.

Melani Dizon:
Right. Okay, so I’m going to ask this question I thought was super fascinating, “Research suggests reducing the amount of alpha synuclein in the system is a possibility of slowing the progress of Parkinson’s much as the forthcoming someday repurposed meds will do. Is there a possibility of needing to have a certain stage of Parkinson’s to have them work?”

Rodolfo Savica:
Man, what a great question. I really appreciate this question, it’s great. So, there’s a couple of things to talk about here, number one, it’s true. It is possible that reducing alpha synuclein can improve the condition in patients that have an excessive amount of alpha synuclein. But if, as I mentioned before, you have a condition and maybe when alpha synuclein is not the major driving force, even if you remove that it is not going to change too much, number one. Number two, the dogma, it is a dogma, that is the same as Alzheimer’s disease, it accumulates above normal proteins, and cause the damage. I remove the normal protein and things should be working better. That is a dogma, and it’s something that maybe it’s not working all the time, and I always say this, imagine alpha synuclein as the trash bins, that you have in your house.

So, when you produce trash you put in the trash bin, and then every week, there’s a trash company, usually every week here, maybe somewhere it’s maybe less than a week but every, every week, they come, the big truck removing the trash.

And this is what our brain does all of our life. We have a scavenger mechanism that is removing alpha synuclein. What if at one point, you are having a drug that kills alpha synuclein, what is going to be the trash. The trash will be all over your house. And maybe, the other condition where the truck company comes every three weeks with a smaller truck, so what happens. The junk that alpha synuclein is not able to contain is accumulating all over the house, causing more problems. It’s an important thing to consider that, I don’t think, and there’s many ads that report that, that removing alpha synuclein would work in everybody.

As usual, our effort, is to work on identifying who and what works for myself, and not for Melani, and not for Amy, and so forth. That is an important thing. It can work, totally, I agree with the fact that it depends on the stage, clearly, all the neuro protective trials that have been done so far have failed. Why? Because likely the condition was to advance, the condition was already present when there was what, a motor onset.

But if we talk about regular Parkinson’s disease. We know, and I told you before the disease can start 10, 15 years prior to that. So, we want to work at the very beginning at the inception of the disease for neuroprotection, not when it’s already happening for a few years, that is a problem.

And I agree. There’s a number of drugs that are used for a different condition, some anti diabetes drugs, anti-pressure drugs, uric acid that are showing some biological potential, in treating Parkinson disease in mice. And sometimes epidemiological, you see some association, but depends a lot on the stage.

One thing that I want to say that is very important. I’ve seen a number of cases nowadays people that are reached out to me with positive immuno stain of skin, so they go and do the skin biopsy, searching for alpha synuclein, and if it’s positive clearly, they’re worried, even without symptoms.

And they say, okay, do I have a disease? And the answer is no. I mean you might have the positive alpha synuclein in your skin, but that doesn’t mean that you have a deposit in your brain.

That is not a surrogate marker of the brain progression. And that is, answering this question, we do not have currently a surrogate marker that can tell us what is the stage of the disease.

And this an important thing because if you have nothing in vivo that can tell us, we cannot put the disease at the inception, we can just see and try drugs, as things are started. It’s a very complex phenomenon, but it’s very important I would say.

Melani Dizon:
Okay, this is a great question and I have a feeling that a lot of people are probably having it as well. It says, she says, and actually Pam Quinn says this, I have always taken my drugs in relation to what my day looks like when I need to be ON. My doctor doesn’t like this because I’m not taking my medicine at the exact same time each day. What is your opinion on that?

Rodolfo Savica:
Doesn’t matter. It doesn’t matter. So, the answer is it doesn’t matter, you require more dopamine, and some days you need to take more medication that day. What is the problem, especially later onset Parkinson’s disease but also in young onset Parkinson’s, so why doctors are insisting on taking medication at the same time?

Number one, because of the food interaction, you know, we know that the medication, I heard before, was 30 minutes before meals. I always say one hour before meals just to play it safe, or two hours after meals, that’s my recommendation, one hour before or two hours after. The problem is that at times some people are having the wearing off of the drug.

So therefore, you want to have a predictable kind of response, let’s say, taking medication at 8, Sinemet at 8 and they know that every day by 11:30 my medication drops down, so I will take it again at 11:30 and avoid the drop. It’s a valid point, that’s why people want to take it every single time. But, as I mentioned before, let’s say Mrs. Quinn. She has to teach classes that day, she has like four classes one after the other.

She needs more. And it’s okay to take more, and it’s okay to take the relationship of what you need as long as you don’t present wearing OFF, as long as you may have a predictable response, guys. To me, the analogy with insulin is the same.

If you are having diabetes type one and you work out and you need more insulin. There’s little to say, and this varies according to the day. I hope that one day we will have the ability to measure, live as things are needed. The requirement of dopamine, as it happens with diabetes, like with the pumps that allows you to fix the amount of insulin that you need, but we are not yet there.

We are not yet there.

Amy Montemarano:
I think I probably speak for several people on this call who are kind of jealous to hear about your individualized treatment, because a lot of us have neurologist who don’t do that. And one of the questions in the chat is, how do we access this kind of individualized treatment in the US? Do you have any advice?

Rodolfo Savica:
Absolutely. I’m sorry, this is a problem, there is a problem, and I am in contact with some patients, it has to do with education, has to do with training, it has to do with thinking outside the box and sharing the frustration that we are in 2021, and we don’t have a cure for this disease, and it’s insane to me, that we are still banging our head about dopamine and about alpha synuclein and we don’t know even what is working for and then we know that is not the case and so forth.

How do we have access to that? Well, I am not I don’t like to use that advertisement at all. But at the Mayo Clinic, we do have these opportunities, and we are accepting more patients currently. So, if you contact us, we will not more than happy to put you in contact with these people. We know there are two people, me, basically it’s me. There are two centers, unfortunately, as far as I’m aware, so maybe there’s more, but two in the globe. In the world that are dealing specifically with this approach us, Mayo Clinic, and Nijmegenin in the Netherlands.

And it’s interesting because these two centers are really working together we are trying to organize our efforts in order to keep things, at bay. Don’t get me wrong. There are centers all over the US with people that are absolutely expert and they are great in dealing with this condition. But the idea is to try to have a larger view of the patient not just adjusting the medication but going a little bit beyond that. That is, to me, a very important and relevant aspect. And to me, what we should do when I say we, I mean myself, but I’m one voice.

Despite, I have a big institution behind me, I am still one voice. We need to advocate and allocate. So, advocate for more resources to allocate for young onset Parkinson’s disease. And this has to be advocated, you know with Michael J Fox foundation, even with Davis Phinney, what you guys are doing, but then with NIH, the government to promote and develop training opportunities to increase the number of centers that want to increase their knowledge, and want to work closely, that’s important thing, closely with a patient about what to do, or what not to do.

Because, the most important thing somebody say, oh what drugs to avoid, yeah there are things that you don’t want to do. There are things that you want to do, and things that you don’t want to do, but we’re in an era when there’s a sea of information online.

And you can lose yourself, you can lose yourself in the sea. So we have to make sure that we have a very good system in place, and a good networking, I heard before, Mr. Phinney was mentioning that the pandemic has been tough for all of us and I agree. It’s been tough on everybody.

But has allowed people to accelerate their virtual networking. And since we are talking about a rare disease. Zoom meetings Facebook pages can be a great source of opportunity to build up a network that can help support each other, as Mrs. Quinn said and I keep on citing her was, I would say right away, I would try to meet more people and have more friends. It’s up to you if you want to say you have a disease or not, I am not going to tell you what to do or not, but for sure, if you have opportunity to connect that helps. If you know oh there’s the center there that can help you with that. That helps. But it’s very frustrating to me, that 2021, we are still struggling to try to allocate resources and and try to see anything beyond our own nose. In terms of treating patients with young onset Parkinson’s disease.

Amy Montemarano:
We have a number of questions in the chat that were asking about light therapy and your opinion on that.

Rodolfo Savica:
Well, that is coming from Australia for the most part, so that was actually I don’t remember if it was, I do apologize, I don’t remember if it was Australia or New Zealand.

There are some, the judge is still out there, the jury’s still out there, it is not yet judged positive or negative, clearly it doesn’t seem to be detrimental. So the most important thing is that is, is it harmful? No. Doesn’t look like it. Is it helpful? That would be the second question, and the answer is that we are not sure, do I have things against that? Not necessarily, as long as it doesn’t cause very much damage, that’s my only problem, but the only problem is that the light therapy depends a lot on the penetration.

So, anything depends on penetration of the skull. There’s a coefficient of penetration that depends on the thickness of each other’s skulls. And unfortunately, there are some people that have a thicker head. Therefore, nothing penetrates, even a magnetic, you know the magnetic stimulation will not work because it doesn’t penetrate the thickness of the skull.

So there is a coefficient of thickness that is very hard to to predict, just by doing that, to the point that once, I’m talking about two years ago I was asked to be part of the scientific community to review one of these possible light therapy, one of the things that I requested was an MRI. You need to have an MRI or a CT scan that does tell us how thick is your skull, because if your skull is too think there’s no reason to do that because he will not penetrate.

So there’s some practical problem but if from a detrimental standpoint it’s not detrimental doesn’t cause me you or anybody any particular issues right there.

Melani Dizon:
Dr. Savica, I have a question about exercise, and this was something I remember you told me a long time ago I thought was super interesting and really want to share it with this community. Can you talk a little bit about how you say, how you’ve said in the past, for you know, YOPD, young onset, earlier onset, go to regular exercise classes if you can and then can you talk a little bit about, you know the difference like maybe you won’t tell your older patients?

Rodolfo Savica:

Correct. This is an excellent point. Thanks. Thanks a lot Mel. So if somebody, again, I’ll give a specific example, if somebody is 43, 44 45, 50, fit, always work out, I don’t feel that sending them to boxing class for Parkinson’s disease will be of any help.

Number one, the intensive training, it’s not going to be the same. Number two, psychologically you will see somebody that is maybe in their 90s, that can be or you feel that that going to be your outcome, but it’s not.

So, psychologically that is wrong to me. Third, if you been always exercising but even if you haven’t been exercising. What do you need to be doing, you need to test with people your age. You have a condition that limits somehow your movement. But still, you have the same age as somebody 40, 50, so forth. So always, please go to regular class, let’s say, I will disclose too, who cares, I am a martial artist, I trained martial arts I teach martial arts, I spend hours in the gym. And I tell many of my patients, okay, going to Brazilian Jiu Jitsu go to grappling, go to MMA, go to boxing. Tell the instructor, hey I am a person with Parkinson disease, so I may not be able to get at the level, maybe. But your goal is to go to that level you got to get that dopamine level higher, and to do that you need to go to regular classes.

You can go to a Parkinson’s class but I say, if you work out all your life, if you’re fit, if you run marathons, if you’re a cyclist, you need to measure yourself with people at the same age that you at, even if you have Parkinson’s disease, that is crucial. If somebody is in their 80s, it is a different story. I say then go to a Parkinson’s one, because sometimes there may be other problems. Let’s say in your 80s you may have problems with your knees, that will not allow you to work and move very fast. So something beyond Parkinson’s that can contribute to Parkinson’s.

What we are doing, we are really trying to develop, and I’m really trying to develop something specific for young onset, but, again, nothing gets to be specific, it has to be regular classes. It’s phenomenal to do that because we need for people to go to a higher level of requirement. To give an example, I follow a patient for now 15 years, young onset patient, he was complaining sometimes ago because he was 20 seconds behind these his friends, as he was cycling in Utah. This guy was 53. I said, sorry, okay 20 seconds. But you know, if I was sending him to our regular to our Parkinson cyclists class, he wouldn’t feel good about it.

I prefer for him to be a little bit frustrated about missing few seconds, 30 seconds is a lot in cycling, I know that, don’t get me wrong, but I would prefer that and you challenging yourself to a regular activity than going to a different activity. Make sense?

Amy Montemarano:
Yeah, thank you. We have about three minutes left, I want to ask a question that also has come up in the chat and that is your thoughts on neuro plasticity.

Rodolfo Savica:
Oh yeah. Well, neuroplasticity is a big word, it’s a big word. What is neuroplasticity? It is the ability of the brain to recover, to change, to change characteristics. We are constantly undergoing the neuro plastic changes throughout our life.

If, if you guys remember Clockwork Orange. If I have you doing the clockwork orange treatment for sure, for 10 years, for sure your brain will be wired differently because I’m forcing use and specific information. I’m, I’m exaggerating but I’m telling that everything that we do every day changes brain. Clearly when we were younger kids, we have a sprouting of millions of neurons and information as we get older, things are different, and not as good, not as fast.

The entire goal of working on neuroplasticity is to try to find activities or drugs, or treatment that can help rewiring, re-changing the configuration of receptors and neurons in the brain. So far, so far, the only activity that seemed to have a neuro plastic role that seems to be working, is unfortunately exercise.

So, what about reading a book? What about doing one of these tests online? What about going to a play well, now that we can go back to plays and theater? Is this helpful? Absolutely helpful. It is part of the other aspect that I work with, pleasure. Do something that is good for you, because this positive, this good feeling, these fun things help your brain to recover.

Later, we’re going to talk about music. Some people love music, some others hate music. So, find your activity and try to work on that. But are there medication or things that we can do to improve neuroplasticity. Other than exercise in this moment, we don’t have anything pointing that direction.

In the recent past, there were some trials, working for example, on stimulating the stem cells, not stem cells, stimulating the available stem cells that have not yet work very well, but, as usual, we are talking about late onset Parkinson’s disease.

We’re not talking about young onset, we cannot translate the knowledge of that time into our time. That is very important. And it’s the major source of frustration for many of us I would say.

Amy Montemarano:
Thank you so much. That was so helpful and valuable information. And so much of it was concrete, you know, we hear a lot about the research we hear a lot about studies. We hear a lot about theories, but some, much, if not most of your advice was really concrete and that’s really, really helpful because we have come away with a lot of action steps that we can take.

Rodolfo Savica:
Thanks for inviting me again.

Additional Resources For “YOPD: Biology, Treatments, and Living Well Today”:

Music and Movement

To download the audio for “Music and Movement”, click here.

Meaning, Mindset, and Purpose

To download the audio for “Meaning, Mindset, and Purpose,” click here

You can read the transcript below. To download the transcript for “Meaning, Mindset, and Purpose,” click here.

Amy Montemarano (Davis Phinney Foundation Ambassador):
Our next speaker is Dr. Allan Cole, and we have a couple things in common, he was diagnosed with Parkinson’s at age 48 with a young family, and a very busy life and he works in academia. He was diagnosed in 2016 and since that time he has spent a lot of time providing education and giving talks and raising awareness and fundraising fundraising and writing about his own experiences of living with Parkinson’s He is a professor and the Academic Team in the Steve Hicks School of Social Work at the University of Texas at Austin, and a Professor of Psychiatry at the Dell medical school. This is where our commonalities end and he’s published 10 books and dozens of articles, and he’s a wonderful speaker, we’ve seen him before. And Hello Dr. Cole, I’m gonna let you take over I think you have your own PowerPoints.

Allan Cole, PhD (Professor and Academic Dean, Steve Hicks School of Social Work, University of Texas Austin):
I do Amy. Thank you. Thank you very much. I’m going to share my screen here and make sure that is working, and then… okay. Great. Well, thank you for the opportunity to be here I’m grateful for the opportunity to hear from such wise and passionate people and to be a part of this community I greatly appreciate what the Davis Phinney foundation does and benefit from it. And so it’s real honor to be here today with all of you.

I’m going to talk about my experience with young onset Parkinson’s which as Amy said began will soon be five years ago. And in order to do that, I’m going to tell you first what some of the assumptions I’m making are. I’m a social work educator and in social work we talked about the importance, often of sort of knowing what our assumptions are and working with those and making others aware of what our assumptions are, when we’re trying to educate or to advocate, raise awareness, whatever the case may be and so I’m going to I’m going to start there.

My first assumption behind everything that I shared today about my own story. And as I invite you to think about your story is that we are more than illness. I know for me, when I was initially diagnosed, my illness consumed me and on my worst days it exhausted who I thought I was. I discovered that isn’t the case it’s a part of who I am, a very important part of who I am. It certainly has an effect on my life and on the lives of those I love.

But, but at the end of the day I am more than my illness and I would encourage you all to believe that about yourselves too.

Virtual Event: YOPD

I also think it’s important to, to name the fact that there is unity in difference and what I mean about that is Dr. Savica has said very wisely and others have said on the, on the panel today and probably will. As much as we are alike in our diagnoses. We are different as well Parkinson’s is very heterogeneous and its manifestations and, as Dr. Savica said in the, in the biology and the disease processes behind it.

And so, it’s important to name the both and in that for me, I think we are a lot alike and we’re also different in our in our stories are going to be different, inevitably, and it’s important to honor that. I think it’s important that we share our stories, I didn’t do a good job of that which I will talk about here in a few minutes for about a year after my diagnosis, but but I know professionally and I teach my students this often that there’s great power, both in telling our stories, and also in hearing others tell their stories and so one of the things we know happens when we tell our stories, is that we do what is called in counseling circles, we externalize our, our problems or concerns our experiences in ways that we can examine them or look at them, if you will, from some different angles, perhaps than we have before.

And as we tell our stories we inevitably are working on understanding the matter. They often evolve over time, so that the way we start telling our story, or the way our story sounds when we first tell it. It may sound very different as we’ve told it for the hundredth or thousandth, or the 10,000 time.

In the same way when we hear other people tell their stories, it helps us to feel like our own experience isn’t terribly unique that others can relate to what we’re going through. And both of those occasions build community and solidarity, which I’ll talk about as well.

Also important for me is the assumption that we is always stronger than I. For about a year I suffered in silence, mostly with my diagnosis I know many, many people who have had similar experiences. I assumed I could and should do this if you will, on my own, of course that nothing could be farther from the truth. but I think it bears mentioning that often that we are stronger together than any of us is by ourselves or alone.

And as Amy I think led off today saying life can can still be really good with Parkinson’s so if you’re just getting on the Parkinson’s road if you’re just, you know, if you’ve just been diagnosed or you’re still sort of reeling with that experience.

I want you to know that life can still be good. And in many ways, genuinely, which I’ll talk about today. Life can can be better in certain ways, at least that’s been the case for me.

So let me start at the beginning. And in order to do that, I’m going to read a brief excerpt from, from my book called counseling persons with Parkinson’s disease I am a writer that’s one of the things that I do for my Saturday and try to do to contribute to the Parkinson’s community and other communities. And I think this will help you sort of understand the beginnings of my story in a succinct way, and and so I will start there.

The chapter is called beginning of chapter one of my book.

“I sit comfortably at the cherry colored wooden desk in my campus office located in the Steve Hicks School of Social Work at the University of Texas at Austin. I can look out of my window and see the university’s iconic power and the Darrell K Royal Memorial Stadium, where my favorite team since childhood the Texas Longhorns plays football on Saturdays.

Having lived in Dallas for a few years as a child, pulling for the Dallas Cowboys and Texas Longhorns was my first religion. Rows of coveted books sit on shelves that line the wall behind me, books I began acquiring more than 30 years ago while in college and graduate school.

These books have titles such as the Varieties of Religious Experience, Essays of Ralph Waldo Emerson, the Cambridge Companion to Kierkegaard and Narrative Means to Therapeutic Ends. Together they tell a story of both my professional path, as well as of my existential searches.

As squealing bus breaks announced the arrival of students for early morning classes. I take quick sips of warm coffee between spurts of typing on my computer. My thoughts flow and I’m excited as something new begins to live on the page.

My left hand like my left wrist and forearm has been stiff for months and tries to keep pace with my right hand, more fluid keystrokes. A sudden twitch in my left index finger disrupts my work.

Each time I extend the fingers such as when reaching for the T key it shakes quickly back and forth. You know how a parent shakes a finger when telling her child know or not to do something. This is the kind of movement my finger is making, and I cannot stop it.

It does not move when it rests on the keyboard or desktop but anytime I use it purposefully, such as when typing or pointing at something it swings back and forth like an erratic pendulum on a wall clock.

I chalk it up to having drunk too much coffee and I don’t think much more about it. However, that afternoon and keeps twitching and the same thing happens the next morning.”

So, the finger twitch led to a conversation with my wife a couple of days later I said you know I have this finger that won’t behave, you know, what do you think? And she’s always been the partner in our 30 year almost 30 year marriage who worried about health issues for both of us and she said you know you should probably go get that checked out. It’s probably nothing but, you know, why don’t you go get it checked out so I made an appointment with our primary care physician.

She’s been our doctor for coming up on 19 years almost and went in and said to her, you know I’m here for you to tell me I don’t have Parkinson’s disease or ALS.

I had begun googling symptoms which I don’t recommend, but I am a researcher and so I wanted to sort of know what could be going on and so I knew that there was something not right but sort of playfully wanting to dismiss it, I went in and my doctor’s playful banter you know which is sort of common in our relationship, quickly changed when she examined me and long story short was, she said, Allan, I’m sorry I can’t tell you don’t have Parkinson’s or ALS.

I want you to see a neurologist and that’s where the story began. I was misdiagnosed by a neurologist who was wonderful, but not a movement disorder specialist, finally saw a movement disorder specialist, received the diagnosis on October 26, 2016.

I was 48 years old had two daughters, 10 and eight at the time now they’re 15 and 13. And then I began 11 months of suffering in silence.

My wife knew about my diagnosis, my, my physicians knew, two or three very close friends, some of whom are in the medical community knew, but other than that my children didn’t know my parents didn’t know my colleagues didn’t know.

And I started out on this journey, trying to do it on my own, suffering a great deal with fear and anxiety, a lack of knowledge, making all kinds of misassumptions that I’ll talk about here too that proved untrue.

And so I say all that to say, if you’re struggling with disclosing your, your condition and it’s always a personal choice. We have to disclose when it’s time to disclose. I wish I had done it sooner because as I’ve indicated, and will say more about, my life in many ways got better almost immediately once I told people about it.

So let me talk about what I’m what I’m learning in this journey. Again, almost five years ago I’ve been public now coming up on four years.

And here are some things that I’m learning and I stress learning because I think it’s an ongoing educative process, I’m not sure we ever fully exhaust ourselves on this journey but I think we can and do learn lots of things that can help us along the way and really what I’ve devoted myself to is learning as much as I can from others and then trying to be a conduit means for other people learning from my experience too.

So, the first thing I want to mention and offer for you to think about is the importance of distinguishing between illness and disease.

This is not my distinction I wish it were this comes from a philosopher, British philosopher named Avi Corral. She teaches at the University of Bristol and she herself suffers from a chronic illness a pulmonary condition, but she helped me understand the distinctions between illness and disease and so I want to talk a little bit about that.

When we focus on disease, we tend to look at a person more objectively which is to say we objectify a person, whether we mean to do that or not. And that’s because we start to look at a person in terms of his or her, their physical body and it’s function, we reduce them or we have the tendency to reduce them to sort of what’s going on with them physiologically physically biologically.

And that has its place, but it’s also potentially problematic. When we hold this is why it’s problematic when we hone in on what’s wrong with us, our heart or lungs, our brains other vital organs whatever we linger on how medicine may help them work better and more efficiently well that’s what we all want right we want medicine to do its job.

But if we if we linger there exclusively, again, we tend to miss a whole other side of the experience of living with Parkinson’s, which I think is best identified as the illness experience and so what is an illness in comparison to a disease? Well, illness in my view, it tends to the subject subjective, or the so what questions of the disease.

And what I mean by that is it attends to the lived experience of disease. Illness is not what is going on within me if you will physiologically as much as it is, what’s it like for me by virtue of that disease process.

And I would really encourage you if this hasn’t been your experience when you find a doctor or a care team, and it does take a care team in my experience, make really sure that those folks can appreciate the distinction between illness and disease, it’s not just semantics in my experience and it’s not just sort of, you know, words, but it really these words carry a lot of meaning and the best health care providers in my experience are those who really live fully on the illness side of this sort of comparison, not at the exclusion of disease of course we need people focusing on that, but sort of where the rubber hits the road for all of us is on the illness side.

And one of the things I love about the Davis Phinney foundation is that they spend their time and the resources and their energy around helping people live better with the illness of Parkinson’s disease and I think that’s a real contribution. So, in practical terms, viewing Parkinson’s principally as an illness helps me hone in on the colors and contours of what my life is live day to day moment to moment that’s what I’m getting at.

Another thing that I’ve learned is that it’s really important for me and maybe for you to live in the moment. To live today and not to worry so much into emphasize so much what may be coming in the future, whether we view that positively or negatively many of us view it negatively because we worry about how we’re going to be in X number of years and how we’re going to look and how we’re going to function and what we’re going to not be able to do anymore.

All of which may or may not manifest itself in the ways that we fear or imagine by the way, but that robs us of what today may offer and my experience has been that there’s a lot in in the moment in the multiple moments of any day and in a single day, that we miss if we’re too focused on on the future. I’ve been really guilty of that most of my life, living too much into the future, having one eye on the horizon if you will have one eye in front of me and Parkinson’s has really brought both of my eyes, if you will, to look at what’s right in front of me and to really take in the beauty and the joy and the opportunities that come with each of those moments in each and every day that we’re alive.

One of my favorite writers, a person by the name of Wendell Berry one of my intellectual heroes, has this line in a book that’s titled “What are people for?” that goes like this, “Let tomorrow come tomorrow, not by your will is the house carried through the night.” And I say that to myself, often my wife and kids, you know, hear me say it to them and they say it back to me it’s really sort of a mantra for us.

Tomorrow will come tomorrow. The future does not exist yet by the way, and so why give so much energy and particularly worry to the future, when it doesn’t even exist, let’s focus on today and let tomorrow come tomorrow.

Here’s some more lessons that I’m learning hopefully really practical ones for you. We have a lot of agency as human beings living with an illness that we may not recognize, or that we may not remember as much as we could. Remember, there’s a lot that, that we may not be able to control with respect to Parkinson’s, particularly over time. And we can focus on that.

I don’t think that’s helpful. I think it’s better to focus on what we can control, and we can control things like our attitude toward the moments and the days and the multiple days and months and years that we live with this illness, we can control the people that are part of our lives and who are life giving for us as opposed to life taking if you will, we can control the kinds of passions and commitments we make, the ways in which we use our illness and our experience not only to benefit ourselves but to benefit others. We have a lot of agency, a lot more than we probably recognize, and I think it behooves us to to be mindful of that and ask those who are around us and close to us to remind us of that.

Because there’s an awful lot we can do to live well with Parkinson’s. All of you who are here today, made a choice to do that that’s your agency you’re here because you know that it will benefit you. And there are lots of those opportunities that sometimes I think we don’t recognize as well as we could.

There are a lot of misperceptions about Parkinson’s, you probably know that, as well as I do. There’s dire need for more education, for more awareness and really since I became public, I’ve devoted my energy and my passions, to try to change some of those misperceptions and to try to broaden people’s awareness and understanding of of this illness and of what people who live with Parkinson’s and other kinds of chronic illnesses can do as opposed to what we may not be able to do over time.

I also have learned that consultations are really important. Bringing people with particular kinds of expertise into your life, especially after a diagnosis like Parkinson’s and so I reached out to an employment attorney for example, I’m still working, I was diagnosed in my late 40s again, had two young children, that I was raising with my wife and, you know, getting ready to educate and all of that. I wanted to know what my rights were what my protections were what my employers’ obligations were, these vary from state to state and industry to industry to some extent.

The good news is that the law is on our side, on the side of people who live with illnesses and who live over time perhaps with disabilities, I really encourage you to gain some awareness and knowledge of what those particulars are for you and to bring this kind of resource onto your care team, and then the same thing about, about a financial planner, estate planning all of that, we should all be doing this anyway, of course, but sometimes these become more apparent, these needs become more apparent and immediate when a diagnosis is involved.

And then I want to say again that life can still be good but it can be even better. I’ve learned that, I’m living that, I tell everyone who reaches out to me that pretty quickly when they just been diagnosed because I needed somebody to tell me that when I was first diagnosed and I can assure you that it’s the case.

Here’s some other things that I’m learning that are helpful for me and maybe helpful for you. I’m a doer and so once I became public with my illness I wanted to get involved with, you know, doing some things that try to move the needle to the direction of more support and advocacy and resources, awareness, all of that for people in our community.

And so, you know, here are some organizations that I’ve gotten involved with, you will know some of these if not all of them you’ll have your own organizations but again we are stronger than I, and there’s no substitute in my experience for you know really rolling your sleeves up and getting involved to whatever extent you are, you know, desirous of doing that, unable to do that, you know, folks in organizations like the ones that I’m showing here on the slide and many others like them will become your people if you will allow them to be your people and I think you will, I know you will benefit from those opportunities as I have, community is a big part of the advocacy and awareness commitments for me.

These are slides of communities I’m a part of. I think that probably most of us in the North American context anyway could benefit from more community involvement and by that I mean really meaningful community involvement with people that you can be authentic with and you can trust and you can live in solidarity with and for me that’s been vitally important, I wish I’d done it sooner than I did. But I got started as soon as I could and I commend those efforts to you as well. Find your people, lean on your people let them lean on you. Dare to be vulnerable with with those people that you trust. And I think that all of that makes for a better longer term journey on this on this road.

I mentioned purpose and passion I want to say something else about that. There’s a great quote that I also, you know, read and repeat to myself often and share with others, it comes from David Brooks, who’s a columnist with the New York Times and Brooks writes the following, “we’re all fragile when we don’t know what our purpose is, when we haven’t thrown ourselves with abandon into a social role where we haven’t committed ourselves to certain people, when we feel like a swimmer in an ocean with no edge. People are really tough,” and I would use resilient in that place too, “only after they’ve taken a leap of faith for some truth or mission or love. Once they’ve done that, they can withstand a lot.”

And I just think that’s really true. And for me, you know, identifying passions and purposes, not only the ones that I had before Parkinson’s, but the ones that have developed and are developing since Parkinson’s has been really important for building community, for having opportunities to educate and raise awareness, but equally important for doing but what I call meaning making or engaging in meaning making.

And I want to say a few words about that for the next few minutes. So meaning making involves our mindset, you know, what do we think about all kinds of things that inform the way we view the world and our place in it.

And in the meanings that we find in our everyday experiences, the values that we embrace the causes that we adhere to, all of that relates to our mindset and I think you know for me when I received a Parkinson’s diagnosis, there were a number of questions that I had to really delve into and answer honestly for myself as a way of beginning to make meaning with my new life, a Parkinson’s life if you will and the first question that I really had to wrestle with is, who am I? Who am I now that I have this illness that is going to presumably progress over time, it’s going to impact various aspects of my life over many years and my relationships? Who am I going to be and all of that? That was really important for me to spend some time thinking about.

Equally important was the question, who do I want to be? For me, this diagnosis really called upon me to examine my life my values my commitments the priorities that I had operative in my life, and to really sort of interrogate those and ask, who do I want to be and are these the facets of my life that are reflective of who I want to be, and I commend that question to you as well.

What are my values and my priorities, how am I spending my time, all of that.

And then, as I think Mel said or maybe Amy said, attributing that to Mel earlier on in the time together today.

What are my habits and practices in relationship to the mindset that I’m adopting or trying to adopt for myself? I completely agree that you know our thoughts follow our habits and our practices and our actions as much as those follow our, our thoughts. There’s a real reciprocal relationship there so what kinds of habits and practices, do I want to, to I want to adopt for myself or revamp for myself?

So the questions that involve those sorts of explorations were the following, how do I maintain hope? Am I a hopeful person and if I am or I want to be what kinds of practices and habits, inform my being more hopeful?

The question of hope was one that was important for me.

How can I begin to use Parkinson’s for good? Parkinson’s is not good. I don’t think any of us would say that, but it can prompt good things in our lives, and that’s certainly been the case for me, and by virtue of my asking, how can I use this thing that I would never want or sign up for for good has allowed me to find meaning. I hope to contribute to others lives, certainly to meet people who contribute to my life in countless ways for the good.

How can I make something not good do something good in my life and the life of others?

And then again, you know I’ve mentioned this, how do I spend my time, who do I spend it with, my other resources. All of that is a habit and a practice that relates to the mindsets that we have, which inform the way we make meaning of all kinds of things in this case living with an illness called Parkinson’s.

So, here’s my unsolicited advice with respect to some things to avoid when you’re engaging in this meaning making process. First of all, living stuck in the past. I think it’s easy for us, particularly early on after a diagnosis to sort of think about yesterday. If only we could go back and, you know, life could be simpler and you know I can do all of this, you know, five years ago and maybe almost do it all today, what am I going to be like five years from now? Avoid being stuck in the past live in the present again.

Maybe in the immediate future but I really think living in the present is the key. Don’t get fixated on how you used to be.

Maybe you’re giving some things up, that you wish you weren’t but if you’re approaching this the right way, my belief is my experience has been that you’re going to gain some things that you didn’t envision to. So, not asking how I used to be but how am I now.

Don’t focus on what you can no longer do. And again, there’s one takeaway I want you to have today, don’t suffer in silence, don’t go it alone. We is stronger than I.

And again, living too far in the future so, alternatively, here are some things I would encourage you to embrace, and I wish I had embraced them more quickly than I did. Personal agency. I’ve mentioned that again. Focus on what you can control, influence, shape.

Let go of the things you can’t, because you can’t, and, you know, using your energy and attempts to change what you can is never a good thing.

Remember that you have some control over your Parkinson’s experience but maybe not full control. Focus on what you can control again and let the other stuff go, power of community I’ve mentioned, the strength of your will, Davis Phinney is the poster person for the strength of the will, you and I know others like that no doubt.

We can do a lot that we don’t realize we can do until we have to do it, and reminding yourself and having others remind you that you’re a strong person, that you have resilience and you can build it even further over time for me has been part of the meaning making experience.

And then you know for some of us spiritual values and commitments will be, you know, very much a part of this meaning making what is my purpose you know what is true and eternal and lasting and valuable all of that which can relate to our spiritual commitments. I’d encourage you to embrace all of that as you’re trying to make meaning in your new your new life.

Here’s an exercise that I want to offer you a call it exercising hope I’ve written about this and it’ll say more about that at the end but I do this every day, several times a day. This may not be your thing if it’s not, you know, fine. Works for me, but maybe you can use it as an impetus to think of something that does work for you.

But when I wake up in the morning, I begin each day by saying the following words. I’m grateful for another day. I will do my best to make today good. I will focus on my strengths. And I will be hopeful.

I’m grateful for the day I’m going to do my best to make it a good day I’m going to focus on my strengths. I’m going to be hopeful. I say it several times a day so that I hear myself speak these words right sometimes I say these words silently. Sometimes I say them to myself if I’m by myself.

And what I found is that over time and especially if I do this when I’m struggling, I become more proficient with it and I internalize these words, and they start to change my mindset or to help my mindset be pulled back into sort of the frames that are most helpful for me, for living with this illness.

They help me conjure up hope when I am feeling less hopeful so I commend this to you, make it your own. If this isn’t your mantra but it’s been very helpful to me.

So I want to go back to passion and purpose. A lot of what I do involves education, I’m a professor at UT Austin, an administrator.

I like to write. So I do a lot of writing I have a blog called PD wise, which is just over two years old and it’s really a hub for, you know, sharing experiences about life with Parkinson’s and I write a lot of the content but but others in the community, write for the blog too. Blogs may not be your thing, but my point is this is my passion and it really serves to connect me with other people in the community who are themselves passionate and helps us to do Parkinson’s together.

And that’s my family that the little guy there is like a family member, he’s a son of a friend but that’s my wife and my two daughters Meredith and Holly. That was after the New York Marathon a few years ago I like to run that’s one of my passions, as well. But finding your purpose and your passion I guess is my takeaway. I have one final thought for you and then I’ll stop because I think we have a little bit of time for Q and A, but this is a quote from Epicurious that I also find very meaningful and he wrote, “don’t spoil what you have by desiring what you have not. But remember that what you now have was once among the things you only hope for.”

And, you know, I had no idea what I would have that’s good in my life by virtue of having Parkinson’s disease five years ago. But, it’s been beautiful in many ways, and I still wish I didn’t have it. But I wouldn’t give up so much if I didn’t have it, that has come to me because I do, and I want you to at least consider that if you’re not in that place yet. My hope for you is that you will be sooner rather than later because I think it’s true. And I think we have a little bit of time for Q and A right, Amy?

Amy Montemarano:
We have about three minutes left. I would like to ask the question, and if anybody has some questions they want to put in the chat we can ask those too. When you talk about hope, what do you mean about hope, what does that mean to you?

Allan Cole:
Yeah, you know, when I first started, I guess I thought hope meant that there would be a cure for Parkinson’s disease right and of course I hope that and I devote a lot of my life to try to make that happen.

But my hope is that all of us, and others who are living with, you know, chronic illnesses and other hardships can, you know, find the best ways possible to do that. And that in doing that can contribute to the betterment not only of their own lives but to the lives of the collective and I think, you know, for me, maybe that’s a qualified hope.

I want cures, I want better treatments, I want people not to suffer, but it’s sort of what we can do again our agency along the way, that helps us make meaning that hinge a lot of my hope on.

Amy Montemarano:
How much time do you spend in a given day on the reflection that’s needed for those questions that you ask yourself about making meaning?

Allan Cole:
Well, I’m an academic so I don’t have a hard time living in my head as my wife would tell you. You know my challenge is getting out of my head sometimes, but this is where the community comes in, but you know I do think many of us could benefit from being a little more self- reflective right and sort of diving into some of these existential, philosophical, spiritual, you know, emotional, all the above questions more frequently and one of the gifts that Parkinson’s has given me is it’s really made me not gloss over the answers I give to those questions and to recognize that maybe they’re provisional and they’re not final, and that that’s okay.

So you know for me I try to spend time every day on being reflective on some aspect of this while also not letting it consume me right that’s the other side of it. It’s part of who I am, but it’s not all of who I am.

Amy Montemarano:
And we’ve got some questions in the chat that are around, working full time with Parkinson’s. What are your tips and tricks for managing that?

Allan Cole:
Yeah, I think being really honest with yourself and with your employer, knowing what your rights are and the employers’ obligations are. The law’s on our side. Reasonable accommodations are not only allowed they’re mandated by virtue of, you know, national legislation.

And so know what those are and, you know, be honest and communicate what you need and what you’re having trouble with and protect yourself but I think there’s always risk right and you know there’s professional risk there’s social risk that comes with living publicly with Parkinson’s, but I think the risks of not doing that are even greater. And especially on the professional side. And so, I think you know, empower yourself, model, and empower yourself or other people who may not, you know, be ready yet to share their own struggles with their employer, and just keep the communication open. I think those are my, those are my tips.

Amy Montemarano:
Was there anything that surprised you about the law when you consulted that employment attorney?

Allan Cole:
Well just how many measures are in place to protect folks who have chronic illnesses or disabilities. You know, it doesn’t mean that it goes as it should for everybody but the law is a lot more on my side than I would have imagined. But people are also reasonable and compassionate for the most part, and I think if we’re doing our due diligence with respect to educating employers, my experience has been not only personally but in talking to others it’s almost always the case that most of the time, employers meet you know meet us where we need them to meet us.

Amy Montemarano:
Great, thank you so much that was right up my alley, for sure. And I think that the mindset work is so important. So you articulated it so well. Thank you.

Allan Cole:
Thank you, Amy. Thank you all.

Reinvention of Self

To download the audio for “Reinvention of Self,” click here

You can read the transcript below. To download the transcript for “Reinvention of Self,” click here.

Amy Montemarano, JD (Davis Phinney Foundation Ambassador, YOPD Council Member):
I want to introduce Mr. Luke, who moved across the country and made an enormous change in your life. Externally, and also internally at your diagnosis and so I was hoping that you could just tell us about when you were diagnosed and the emotions that you went through after that.

Luke Waaler (Senior User Experience Designer):
Yeah, sure. Thanks very much Amy, it’s great to be here, and thanks to the Davis Phinney Foundation for having me. And also, thanks to Dr. Cole, a lot of what he said parallels my own story. So, and I’m sure with a lot of folks that are that are dialing in today, so my experience was fairly similar. In the spring of 2016, when my then girlfriend Jennifer, she noticed, kind of a strange thing that walked in my arms weren’t swinging and maybe after particularly after a workout, one of my arms would have a tremor to it.

And we looked up, what are kind of Hallmark symptoms of Parkinson’s disease, and she would list them off and I would say yes or no, yes or no. And a lot of those were yeses and we said well we better go check this out so similar to Dr. Cole just went to the family doctor and he said, well, I’m not going to rule anything out, so maybe better go see a neurologist. So, it was actually diagnosed on, believe it or not, James Parkinson’s birthday, April 11, of all things, and similar to a lot of folks on this call the trajectory of my life changed on that day. Of course.

So, in terms of emotion. I felt lost it felt kind of scared of the unknown, not knowing a lot about the disease, and, where it would take me and what would happen next. And, and I think I lost some measure of self confidence in myself and my abilities, and that sort of that sort of feeling I guess, is where I started.

And I can keep going on with that but if you get other questions, I can keep going or respond to your questions.

Amy Montemarano:
So, when we were talking, we talked about taking that first step. and what that requires in terms of courage. So, that first step of moving forward, out of your old life and into your new life. Do you remember that moment when you decided to do that?

Luke Waaler:

Yeah, well, so I had been working in Colorado. And I said leave my job in 2018 it just wasn’t a good fit for me. And I thought I was going to live the rest of my life in Colorado and that’s where I live out my days and that sort of thing.

But in the meantime, we decided that as time went on and I wasn’t finding job opportunities that I wanted to that other places, started popping up on our radar and North Carolina was one of those places that came up.

And one day my wife sent me a text for a job opening for an aerospace company in Charlotte, and I thought well this sounds kind of interesting. Let’s take a look at this and so I applied for it, and they did a phone screen and I flew out for an interview and in a matter of a few very short weeks I was made the offer and so then we had a choice to make.

And we decided that would be best for us to make a change, and it was a really big step and well what may seem like a small step for for others was a giant leap for me so very big change.

Amy Montemarano:
Were you worried at all about the job interview and disclosing or not disclosing?

Luke Waaler:
I remember during the phone screen that my Sinemet had started to wear off after it’s maybe an hour phone screen and I hadn’t timed it just right or I had too much protein beforehand or something.

And so, I’m sure people are familiar with this, half of your brain is trying to concentrate and answer the questions in the interview, and the other half of your brain is trying to keep your body from shaking on the camera.

So, I distinctly remember that during one of the interviews. And then pause there, it was while after I started the job in Charlotte. I didn’t disclose my diagnosis for about six months, maybe, and then recognized that it was becoming more and more difficult to hide my tremor while is in the office, and decided to pull together, my closest teammates and say hey, this is what’s going on. I’ve got this, this illness and I manage it through medication.

But every once in a while, you might see a tremor and that’s that’s what’s going on. And bless their hearts all of the people on my team said okay that’s fine. Now let’s move on to the project and, and that was it. So, I’d really built it up in my mind is this this very scary event and wondering what people would think, and they were all just very casual about it. Not that they didn’t care. They just sort of said, well it doesn’t change what we think of you, you’re still our designer, and we still have work to do. So, let’s get back to work.

Amy Montemarano:

And you’re still working now right?

Luke Waaler:
I’m still working there. Yes.

Amy Montemarano:
So what advice do you have for people who are working full time and managing symptoms?

Luke Waaler:
I think the first thing to say is it’s different for everyone. What Dr. Cole said was very interesting about the freedom that he felt, and that resonates with me is getting that feeling of freedom.

The interesting thing was that maybe a month or so after I revealed my diagnosis was when COVID hit, and I’ve been working from home ever since for the last 14 months or so and so on the zoom call, it’s actually a little easier to hide Parkinson’s symptoms than being in an office across the table from somebody, so the people I told about the diagnosis at the time, that’s sort of my circle of trust that hasn’t expanded since then.

So, I guess, to answer your question, it’s sort of a case-by-case basis. And I don’t, I don’t have any hard and fast rules for when to share your diagnosis or when not to.

Amy Montemarano:
It’s interesting that you say that because I’ve been getting some inquiries from people who have not disclosed during the pandemic because zoom is so much easier to hide it, and now that they’re headed back into the office, everyone’s wondering what to do, what to say. It’s been an unusual, there’s been a lot of calls in that area, so it’s probably something we should talk about more but so now you’re over here, you’re over in the east coast, you’ve made that big jump. And how was changing your medical practitioner process. How was, was that difficult?

Luke Waaler:
Yeah, it was more difficult than I thought. I think that’s one of the things that people don’t necessarily take into account when they move from one community to another is finding a new insurance agent for your car, a new dentist for your family, you know a new primary care physician and movement disorder specialist and all these things that you don’t really think of. The first movement disorder specialist that I found just through a Google search of ones in the area. He was sort of a younger guy, meaning younger than me.

And during my first appointment I said you know I’m glad I found you through my Google Search. I’m glad to see you’re kind of a younger guy. I can see us going on this trajectory together this path together for the next 20, 30 years or so, with you being my provider. And he said, well, thank you very much that’s nice you to say but I got bad news. I’m leaving the state, and this is going to be our last appointment together.

So, I had to start my search all over again but I’m very content with the fella I’ve got now.

Amy Montemarano:
I, again when you and I started talking about this, I had just, I’m a member of a jillion Facebook group for people with Parkinson’s and other things which I’m learning from all of you today is a really good way to get through this journey together.

And the day that you and I spoke a question came across one of the groups, I wish I remembered who said it because it’s a really good quote and he said, for me, Parkinson’s is turning out to be the result of a lifelong struggle for the freedom and safety to be my authentic self.

Does that sound anything like what you feel too?

Luke Waaler:
Yeah, yeah. Freedom, authenticity, safety, those are kind of related in a relationship standpoint, you want you want to have that freedom to feel authentic and to be, you need to have that safe space with whoever you’re talking with to be authentic and and reveal as much as you’re comfortable revealing and being vulnerable. And that I think can can lead to some freedom.

Amy Montemarano:
Do you think you’re a different person now than you were before diagnosis?

Luke Waaler:
I would say definitely in several different ways. Physically obviously there’s been changes and Sinemet has helped manage those symptoms. I think self-confidence is still an issue. And I’m certainly far from perfect. I deal with depression. And the exercise seems to help that. I try to do that as consistently as I can. But there’s certainly things that have changed.

As Dr. Cole mentioned, you know, today’s what we have. So, I think it’s sort of, his comment about having one eye on the horizon that kind of resonates with me as well.

Well, maybe that horizon isn’t quite as far as we thought it was and let’s focus more on today and even this morning, when my wife and I were watching some of the earlier speakers and they said, don’t put off that vacation that you want to take when you retire. Go ahead and enjoy life now. My wife always says don’t put don’t postpone joy, let’s get out there and take that trip, especially now that COVID is starting to get in our rearview mirror.

Amy Montemarano:

And you also had a great quote, which I didn’t write down. Do you remember what it was? It was about respect and honoring, but not fearing, right?

Luke Waaler:
You know, early in my diagnosis, as we researched what Parkinson’s was all about we decided that we will respect Parkinson’s, but we were not going to fear it. I’m just sort of taking it head on. And, and understanding that you know there’s there’s doctors here to help there’s there’s people, other folks within the tribe it’s Davis likes to describe it.

So we’ve got tools in our tool belt that we can use to fight against it, certainly respect it but you don’t have to fear it.

Amy Montemarano:
I love that. And if there are other people out there are people in the audience who are thinking about making a big change in their lives like you did. What advice would you give them?

Luke Waaler:
I think I’d start off by saying, life is short, you know, you only go around once. So, if you have any question, go for it. You don’t want to have regrets you don’t want to grow up to be 85 years old and say, doggone it I took too many chances with my life you know and too many things I think it’s good to take those chances and not have regrets.

Amy Montemarano:
Is there any advice that you would have given yourself, knowing what you know now?

Luke Waaler:
Yeah, I’d start by saying, although currently Parkinson’s is in treatable it is manageable. So, relax Luke you’re going to be okay. You don’t have to panic, either keep exercising or start exercising to slow the progression. And then live, love, and be grateful for what you do have. Today is what we have.

Amy Montemarano:
Yeah, we have some points on the PowerPoints, I don’t know if we can bring that up again, that are drawn from the Luke’s experience, and the different ways of looking at having Parkinson’s. And we talked a little bit about this before, which is, I read a lot about what people say on their deathbed, there’s a lot of books out there right because you’re talking about regrets, no regrets life right, and from my reading which of course is was not an academic study was just me reading a few books but from my reading, these were the top four regrets that people say at the end of their life. I wish I wasn’t so hard on my loved ones. I wish I had let myself be happier. I wished I’d had the courage to pursue my dreams. I wish I had slowed down and not worked so hard.

And those struck me really really deeply, especially the one about letting yourself be happier. And I think that’s what Luke, I think that’s what you’re talking about right is just giving yourself permission to not stress, and just enjoy the moments that you maybe flew by before, right?

Luke Waaler:
Yeah, even something as simple as as sitting down for a meal. When you go to a restaurant you know you go to your favorite restaurant and you order your favorite meal. And then you wolf it down and the moment is over and about two or three minutes and I’m trying to get myself to just slow down and enjoy the moment and relax and enjoy every every morsel, every bite and just enjoy.

Amy Montemarano: Savor. Yeah, the savor.

Luke Waaler: Yeah, yeah.

Amy Montemarano:
And part of the post traumatic growth concept, which really just means that something that’s been known forever, is that when people go through a difficult time, whether that’s trauma or other kind of struggle in your life that they can change, and that change can be good, not necessarily always just damaging. They’ve known about that forever but they’re just starting to research on why that is.

And they took a look at these mindset shifts, which is your life can get better in these areas your relationships get stronger, which I think Luke you were describing that a little bit too.

And then sitting down and saving your dinner right greater appreciation of beauty and joyful moments. I have found post diagnosis that the moments in my life where I feel happy are scaled way up. I’m not saying that there’s more of them.

But the level of joy and happiness that I feel is sort of like off the charts now because of, you know, the gratitude I guess that comes in.

Luke Waaler: Yeah.

Amy Montemarano:
And the catchphrase for post traumatic growth is, is this, it is, “I am more vulnerable than I thought. But much stronger than I ever imagined.” And I also think that it’s that awareness of this of your inner strength that gives you the power to feel good. Right.

Luke Waaler:
Yeah. Very well said, yeah. Going back to the first bullet point under the one of my relationships get stronger. I would even add as a symbol of new relationships that you never thought you’d have, people that I met through the Parkinson’s community are just tremendous people. And they’re people I probably never would have met otherwise and I’m just so grateful for this entire new batch of friends that I’ve made.

Amy Montemarano:
Yeah, I don’t mean to sound flippant because I often do, but my occupational therapist who saved my life by being flippant with this heavy topic, said to me, at one point, you know, all the cool kids have Parkinson’s, which is kind of like yeah they are they’re all, they’re all you know this community is just full of so many kind hearted people full of integrity, and so much wisdom and so much to learn from and I’m so grateful to be a part of it.

Does anybody else have questions for Luke? or Luke, do you have any ideas about what what’s next for you?

Luke Waaler:
That’s a great question. Continue to explore the Carolinas we haven’t really had a chance to do that since Covid hit just shortly after we moved here.

Amy Montemarano:
Yeah, getting outside right I mean that’s really important to do that. I think it’s that book that Mel recommended that nature book which I probably got about how therapeutic it is in nature. A lot of us have been so shut in for the last year.

Luke Waaler:
Exactly, Yeah, I’m looking forward to that too. The nature fix. Yeah, I have it, it’s upstairs. And people talk about how they told their kids. Luke, kids? You have cats?

Luke Waaler:
We do, we have three cats. We never did tell them about the diagnosis, but they I’m sure that they knew it before you probably did, they’re pretty smart.

Amy Montemarano:
I can talk a little bit about how I told my kids they were in middle school at the time. I can’t remember what ages maybe 10 and 12 or something like that. I told him right away. I sandwiched the bad news, with positive news on either side. And I showed them examples of people who have had Parkinson’s and have lived a long time.

Someone who inspires me a lot is Janet Reno. She was diagnosed in her very first year as the Attorney General of the United States and she spent another nine years in that role.

So you can imagine how stressful that job was. And if you ever watch the Saturday Night Live skits where Will Ferrell, I think, plays her, and she, and it’s and it’s the Janet Reno Dance Party, which reminds me of all the dancers here. It’s really funny, anyway. But yeah I think being honest and showing them, you’re still their parent, you know, in a confident way, just, again, I think I said at the beginning, I think you owe it to your family to enjoy the moments, that helps them. And for a lot of us I think it’s a lot harder on our loved ones and it is on us.

Luke Waaler:
Yeah, yeah, yeah, a lot of times you forget when you’re diagnosed it’s almost as if they got a

diagnosis at the same time.

Amy Montemarano:
Yeah. And so if anybody else in the audience has anything to say about telling your kids, I think that’s a really important topic of conversation.

Melani Dizon (Director of Education and Research, Davis Phinney Foundation): So, Carol is asking, how does humor play a role in your everyday lives?

Amy Montemarano:
Oh, hey Carol. Luke’s got a dry sense of humor, it comes out very subtly.

Luke Waaler:
Yeah, I think I use humor in two ways. Number one is as a stress deflector, and number two build relationships or start relationships. I probably come across as somewhat quiet at first but as soon as I’m comfortable, I’ll let out some of the worst jokes you’ll ever hear so, yeah.

Amy Montemarano: And that helps.

Luke Waaler: And that helps.

Amy Montemarano:
And Carol, who we all know, as our ambassador who wrote a great book ribbon of road ahead about walking the Camino. Also, I know she uses a lot of humor in her book, and in her life, and I appreciate that as well. It’s one more thing about this community that I really like is that kind of like going through a bonding experience together and I hate to call it gallows humor, but something along those lines, is a a real bond that we all share. I think it really helps.

Luke Waaler: Yeah, I agree.

Amy Montemarano:
And we are at 2:40. So I think we’re taking a little break here if anyone has any. Actually there’s one question for you Luke, this is, I think is a really good question. Is there a checklist 8you have to assess a new movement disorder specialist or neurologists things that you learned when you had to start over to look for new one.

Luke Waaler:
No, is the short answer. If they’re board certified that seems to carry some good weight. I think for me it’s important that they’re easily accessible. So if it’s a three hour drive you’re less likely to go make an appointment there. But if they’re, you know, within your area, certainly that makes a big difference. And other than that it’s, I felt like it was a little bit of a crapshoot to figure out, you know if you’re going to get along with this person and if they’re going to talk on the same level as you.

If you can establish that relationship but I’m sorry I don’t really have a checklist per se.

Amy Montemarano:
Yeah, I don’t think any of us have a checklist right, there’s so many different styles of neurologists. I’ve been through three so far, and they were having wildly different styles. And I think it’s another area of advocacy that would be really helpful, especially after hearing, Dr. Savica talk about how good you know a neurologist can be when they’re really focused on custom prescription and treatment.

And that would be fabulous if we have a unified system of neurologists who did that.

Luke Waaler:
Yeah, I do have one very quick funny story, in my first visit with my new movement disorder specialist was over the phone. It was a zoom call over the phone, and he wanted to see these typical exercises you know how well you do with those sort of things. And part of it was a toe tapping exercise, so I held the phone, pointing down at my feet, and before he asked me to start the exercise, he said, hey, did you guys get that rug from Wayfair because we’ve got the same rug in our house.

And it was just a great way to break the ice and I knew from that on that this guy, he and I could get along just fine.

Amy Montemarano:
That’s good to hear. That’s good to hear. Yeah. Thank you, Luke. I love hearing your story because it was it was that temptation to sort of, like, start something big and something now, and you’ve done it, and so it’s very inspiring.

Luke Waaler:
Thank you, Amy. I appreciate the opportunity.

How to Live Well with YOPD

To download the audio for “How to Live Well with YOPD,” click here

You can read the transcript below. To download the transcript for “How to Live Well with YOPD” click here.

Amy Montemarano (Davis Phinney Foundation Ambassador):
So, I am excited now to introduce our last panelist of the day. This is Amy Carlson, and she’s been living with Parkinson’s disease 2012. She says that PD has changed her life but maybe not in the way that people would expect. She believes that Parkinson’s saved her life changing her ways that she never would have anticipated, which is exactly the theme for today. For her, life has become slower, more deliberate, and more immediate. And she finds joy and simple experiences and has come to realize that everyone has their own unique journey in life. And the challenge is to find the meaning in your own.

Thank you so much for joining us today.

Amy Carlson (Davis Phinney Foundation Ambassador):
Thank you, Amy. That sounded really fun. I wonder who wrote that. Typically, I start talking about my situation whenever I talk to people with Parkinson’s and to do a little bit of talk about my Parkinson’s resume.

And that is that I tend to talk about, just give you a sense of where I’m at, with my disease like Amy M. said, I was diagnosed in 2012. I was 44 years old at the time. I’m now 53, so we’re, you know year nine if you’re keeping track and I think an ant just bit me. Anyway, I take a certain amount of drugs like most people with Parkinson’s and since everybody always wants to know what drugs you’re taking, I take Azelect or Rasagiline, was actually every day.

I also take an agonist still I’m taking eight milligrams of were Ropinirol right now. And I take carbidopa levodopa. Let’s see. Six during the day like every two and a half hours, starting at 6:30 in the morning I go then at nine and 11:30 and two and then 4:30 and you know you can do the math, seven and I feel like my Parkinson’s is pretty well managed I also exercise a lot, and dance every morning for at least 45 minutes. I do some, some yoga also, and you might know that I host a zoom call called Amy Says Dance.

And that started during covid, and it’s become quite addicting but the the thing about it is I find that it’s really important to be in community and to, to make sure that I’m not trying to do things in isolation I think that being in community is wildly important for my management, my life, my everything in this disease.

Virtual Event: YOPD

It’s just so important to be in community. And so that’s, that’s a really important thing that I would put out to anybody that focusing on being in community is helpful. Now, I told Mel that what I wanted to talk about today was progression. Because to me progression is a really interesting part of Parkinson’s disease. We all talk about progression, and how its measured. Okay, so let’s talk about progression for a minute.

And, yes, anyone can join the Amy Says Dance zoom, and we’ll talk about that, or somebody will gratefully put up some information about it for me, so that you can get that information.

But progression, right now, if you’re on this call, you’ve probably been diagnosed with some form of Parkinson’s disease and possibly you’ve been diagnosed with YOPD, young onset Parkinson’s disease. And so, the first thing I did when I was diagnosed was like What does this mean? You know, how long do I live with this disease? Do I die from Parkinson’s disease? How do I know what’s going to happen next? And that started the big mysterious adventure of Parkinson’s because of course as you start to learn about Parkinson’s disease, after diagnosis, there’s a couple things that become obvious.

And that is that there isn’t a lot of really concrete information about where your life is going after diagnosis. There’s a lot of studies out there that you can read them most of them are based on people who have more of a typical experience with Parkinson’s so the average age of diagnosis is 65, and so then there’s different conversations about how long you would live with Parkinson’s disease had you been diagnosed at 65.

But that’s not quite the same as it would be if you were diagnosed much earlier. You’re going to live, most likely a long time that disease, and so the progressions, the classic, what’s that thing called, that scale… the hahn and yahr, it’s a subjective measure, just like your diagnosis was subjective it’s somebody taking a look at you and saying, oh, you look like you have Parkinson’s disease, and then with the hahn and yahr scale they’re saying, oh, you look like you have stage two Parkinson’s disease, and what exactly is stage two Parkinson’s disease, but kind of a nebulous description of some sort of physical movement motor function problems.

The reality with Parkinson’s, I think, my experience is, there’s a lot more than the motor scale and the biomarkers that they’re desperately looking for which you know we hear about all kinds of progress on these biomarkers. And if you think about a biomarker. It’s, it’s something like, you know, other diseases have biomarkers we don’t seem to have one yet.

But, you know, if you have if you’ve been diagnosed with cancer, you measure your progression of your cancer through these biomarkers, white blood cell count and different other things, tumor sizes, and all kinds of metrics, biological measurements that that tell you how you’re progressing and doing with your disease.

And we here live with Parkinson’s. We don’t have many of those, you know we compare to each other, how much meds are you taking? What’s your availability of movement during the day? How much OFF time are you experiencing? I hear about a lot about that now.

But there’s other things that are going on besides the motor function. And it’s important to think about. There’s a psychiatric profile that goes right alongside Parkinson’s, and alongside the motor part of Parkinson’s.

I experienced depression, at least 10 years before my diagnosis of Parkinson’s. And now of course I’m led to wonder, was that actually the first sign of my Parkinson’s? The psychiatric components are, you know, many. Anxiety, depression, apathy. Then the fun ones, hallucinations, delusions, psychosis. Yeah.

But these are pieces of this journey that you may walk alongside you may find in your journey. And as we move through the seas we go through some very interesting steps, psychologically.

If anyone here is experienced the loss of a friend, someone who’s died in your life, or maybe a tremendous loss of a job or a house or a marriage, you may be familiar with this thing called the stages of grief. And I would suggest that in Parkinson’s we go through those stages. Often, over and over again as we experienced new losses in our life based on the disease. And it’s hard.

One of the things that I think is really important to understand about somebody with Parkinson’s disease is they get kind of good at this. Accepting losses, they’re going to have to get good at it because we get a lot of practice.

So how do you live well with Parkinson’s disease? When you’re looking at all this. It’s a difficult question to get at. And I would suggest flipping the question on its ear. How do I die well with Parkinson’s?

We don’t talk about dying very much in the world, we certainly don’t talk about it much in the United States, it’s not considered a measure of success, I don’t think. But really and truly isn’t everyone’s life progressing from birth to death.

So, when you talk about measuring the progression of my Parkinson’s disease, how is that different from measuring the progression of my life from birth to death? I was much more flexible when I was born. Pretty much.

So because I might have trouble now sticking my toes in my mouth like I was able to do when I was a baby, do normal people, do typical people who don’t have Parkinson’s do they grieve that loss?

I don’t know, do we really want to consider that the progression of Parkinson’s disease doesn’t matter, this is really funny, my husband is right now trying to put his toes in his mouth and he’s rolling around in the grass. I wish you could see, he is on the other side of the camera, you would love it.

Anyway, how do you measure progression in your life? How do you measure progression in Parkinson’s? I talk a lot about having a plan for wellness. And all of that comes down to one thing and that is what is your definition of wellness? What is your definition of wellness? And what is your definition of living well or dying well at all?

One thing that I know for certain that Parkinson’s taught me is how important the present is right now. This minute right now and I know people talk about that all the time. This minute. This moment.

I choose to have a great quality of life, as much as I can. So, I know that I’m supposed to exercise and move, and any of you who know me at all know that my favorite movement is dance.

I love to dance. And thank God for Parkinson’s disease, because it allows me and forces me to spend an hour a day dancing or so. It’s the perfect excuse to dance, every single day. I did not do that before I was diagnosed with Parkinson’s. In fact, I didn’t even do it until I was like five years in.

I had to be convinced that it was important for me to spend time, exercising every day. And now I get to dance, every day. And because I dance every day, I’ve explored tons of different types of music. And I love learning about new forms of music and new forms of dancing. It’s so exciting. It’s so exciting.

And then, I’ve learned some other things. Some of the losses have meant that I have had to recreate my life a little bit. I have to think about how I can live well, and the decisions, while they seem like difficult decisions, each one as brought me more and more joy.

Recently I decided I could no longer handle the house, we had three-bedroom house with, you know that our kids had gone through high school in and and it was a bit of a chore, there was a lot of gardens to it, and it was beautiful and I loved it, it was mine. It was ours. But it was beginning to be very, very, very difficult for me to live there, and feel happy and well, because I constantly was surrounded by all the places where I was failing to keep it up the way it should be kept up, and I just couldn’t do it. So, we sold it. And that was a hard decision.

And I’m going to turn my camera around and show you what we replaced it with. That’s our sprinter camper van. If you can’t find your phone in that van, you’re in deep trouble. Now I couldn’t find it in my house, heavens no, I couldn’t find my phone. I couldn’t find my glasses. I couldn’t find my meds. But in that van, it’s pretty small. I can find anything in there eventually. There’s only so many places it can be. And you know what, the van has brought me here to Acadia National Park all the way from Los Angeles.

It was a hard decision to leave my house earlier than I ever thought I would leave a house to turn that decision on its ear and find a way to live well. This is an opportunity not many people get to have. I know that that sounds crazy.

One of my favorite memories of going to school when I was a kid was learning about the explorers. William Clark and Lewis, Meriwether Lewis right. I loved the idea of going off into terra incognita and discovering new things.

Now I don’t get to do that I’m not going into terra incognita as far as Earth goes, people have been to Acadia before me. But I get to live in a brain that’s different than other people. I get to live in a brain that has Parkinson’s disease. I get to see that from the inside. I’m an explorer. And I’m exploring uncharted territory for so many people.

The brain is a vastly amazing piece of machinery an organ, and I get to see it from the inside. And what happens when it takes a journey, that’s a little different. I choose that.
I choose to look at it that way. And I hope that that might be a way to live well, and to die well with Parkinson’s disease.

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