On Monday, May 15, the new documentary Still: A Michael J. Fox Movie played to a packed theater at IPH. It is a revealing, yet ultimately uplifting, look at the life and career of actor Michael J. Fox, who was diagnosed with Parkinson’s disease in 1991 at the age of 29. After the screening, a panel talked about what it’s like to live with Parkinson’s disease, its treatment and the latest advances in research. See the discussion below.
KIM GAMBLE: I want to thank everybody for staying after for the panel discussion. This is exciting after seeing such a great movie and presentation about Parkinson’s disease. My name is Kim Gamble, and I am one of the program coordinators with Atrium Health, and I also serve on the Parkinson’s Foundation Advisory Board for the Carolinas Chapter.
So the first thing, we will introduce the rest of my esteemed panel here. The first person to my left is Ms. Betty Chafin Rash, and I’ll let you tell a few words about yourself and your connection to Parkinson’s disease.
BETTY CHAFIN RASH: I was a full-time caregiver of my husband, Dennis. It was kind of a shock. He was a very athletic man, a community leader. He was in tremendous denial about his condition, and I can say more about that later. But pure and simple, as a caregiver, it was one of the hardest experiences of my life.
KIM GAMBLE: Definitely understandable. Besides Betty, we have Dr. Sanjay Iyer. He is a movement disorder specialist at Memory & Movement Charlotte.
DR. SANJAY IYER: Thank you. It’s great to be here to see so many people I recognize, and I’m honored to be here to see what Michael J. Fox has done to raise awareness. It’s really inspiring. I think I look forward to what everyone here on the panel has to say about what we’re doing and where we’re going to go from here. But I think in general I echo what Betty says. The journey she went through was tough. She did a great job and hopefully we armed her well.
KIM GAMBLE: Great. Thank you. And we have Ann Marie Worman. She’s the executive director of the Parkinson Association of the Carolinas.
ANN MARIE WORMAN: Hi, everyone. Thank you. I’m so excited to see this group and so many of you stayed afterwards. This is exciting. I’m the executive director with Parkinson Association of the Carolinas. We are an independent nonprofit organization serving the Parkinson’s communities across both Carolinas. We are headquartered here in Charlotte though. So we hope to be a resource to you, and I think we’ll get into that a little bit more: how we can help the Parkinson’s community. But I’m so glad to be here. Thank you.
KIM GAMBLE: And holding down the tail we have Phil Ritchy, who is the owner of Rock Steady Boxing, the Huntersville location. And just an aside, Phil travels with his posse, if you hadn’t figured that out. Rock Steady Boxing, you guys want to stand up?
PHILIP RITCHY: As these folks said, just an honor to be here. I received the opportunity to be called to coach about six years ago and lead an amazing group of individuals all battling Parkinson’s. In that time we’ve had about 156 boxers come through our program in little ole Huntersville, North Carolina, and they just represent what it means to fight back. I just like the opportunity to be called coach and to help out with that. So I look forward to the panel discussion this evening.
KIM GAMBLE: Great. So I think we’ll start with Dr. Iyer. I think the movie did a great job of defining Parkinson’s, talking about symptoms. But Dr. Iyer, just give us a brief recap of what is Parkinson’s disease?
DR. SANJAY IYER: Well, we have a very educated audience here, so I won’t belabor the point, but Parkinson’s disease is a condition in which the brain cells that make a chemical called dopamine start to die off. Dopamine is what helps the brain talk to your body to facilitate movement. The analogy that I would use, I learned from my daughter when she was in sixth grade, and I was showing her some videos of some patients and her reaction was, Dad, that guy’s moving like the Tin Man. So she had just seen The Wizard of Oz, and so she saw the Tin Man who couldn’t move, and it was the oil can that got him moving. Well, dopamine is the oil can, so more dopamine helps people move more fluidly, more smoothly, quicker, maybe reduced tremors, and too much dopamine helps people move too much, like when Michael J. Fox is squirming around with the dyskinesia as we know it.
Parkinson’s is the second most common neurodegenerative disease only to Alzheimer’s. About a million and a half people in the U.S. currently have it. It causes trouble with tremors, slowness of movement, stiffness of movement, some trouble with walking, maybe some balance and a lot of invisible symptoms that might be even more disabling, like constipation, changes in moods like depression, anxiety, blood pressure, fluctuations that cause dizziness and a lot of other things like that, but I think it’s manageable with the right treatments, and that’s what I would say Parkinson’s is.
KIM GAMBLE; Thank you. So with that are there any questions on the floor at this time?
AUDIENCE MEMBER: Yeah I have one. As a family member, what can I do to be supportive? I feel like sometimes I’m being over the top if that makes sense.
KIM GAMBLE: So the question is as a family member what can she do to be supportive, that she feels like sometimes she is over the top, and you think you can handle that one? …
ANN MARIE WORMAN: I think a lot of it is just communication with the person with Parkinson’s. Ask them what do you want from me? What do you need from me to support you so that you don’t feel like you’re being over the top, and maybe they don’t feel like you’re coming on too strong. So I always tell people, just open that line of communication and ask what can I do, what can I give you, how can I help, and then once they tell you those things, then you can come back to us, and we can say here’s a great way for you to do that. Here’s another way that you can handle that. But that’s what I always try to tell people is just communicate and really ask them, and if they won’t tell you, then maybe there’s another person in their life that’s close to them too, and you can say, hey, this is what I want to do.
Help me figure that out. I want to be supportive. …
AUDIENCE MEMBER: [INAUDIBLE]
DR. SANJAY IYER: The question was around, well, if you’ve seen one patient with Parkinson’s, you’ve seen one patient with Parkinson’s. I think that really speaks to the fact that everybody is so different. You know, no two of my patients, no two of any of your patients, are the same. It’s important to recognize that. It’s important to realize that. Everyone’s symptoms are different. Everyone’s progression may be different. The challenges people face are different. At the same rate though, there is some commonality in what some of the challenges can be, and I think learning from each other is very important. I saw a patient the other day, she’s very new to the diagnosis, and she went to one of the exercise classes, and she came back feeling very discouraged. She saw a lot of people who had very advanced Parkinson’s, but that may never be what she becomes, so it’s important to realize that. But at the same rate, what can we learn from each other? I think getting back to the point that you had made about family members. What can family members do? One thing we encourage is go to the doctor’s appointments with your loved one. You bring a different perspective. You bring a different lens. You can bring different ideas. Men especially, we’re great at minimizing our symptoms. We walk into the office and say, oh yeah, I’m doing great. And then the loved one or the spouse or the family member says, well, what do you mean by great? Is it that you can’t walk for half a day? Is it because your medicine is quit working? Is it because of this? So I think bringing that perspective and bringing more data to the doctor is very helpful. That would be a very helpful thing you could do.
KIM GAMBLE: Thank you. So I’d like to bring Phil in at this point. Being part of Rock Steady Boxing, you see a lot of different levels, and you see a lot of different Parkinson’s patients at different stages. What would you offer up to a patient? Say one that comes in and says, I’m not a boxer, and then talk about the different levels that you have.
PHILIP RITCHY: Usually my first response is I’m not a boxer either. So cat’s out of the bag. I’m the head boxing coach. I don’t have much of a boxing background, so a lot of us are just figuring this out together. And I think our energy is very much of just, once you see our team working out, there are a bunch of different levels, but everyone is just so kind.
We had a couple come visit us today, and every single person went up and introduced themselves, spoke a little bit about their personal experience. And I think it’s just recognizing that while everyone’s different, we have 37 people in that gym today boxing, and everyone’s fighting the same thing. Everybody’s fighting the same fight. And back to being a family member, I’ve seen some of the most beautiful relationships from our caregivers, from husbands, from wives, that are boxing alongside or waiting out in the hallway, and the first one to give their boxer a hug when they get done with class or those grandkids that come and watch grandma be a boxer and fight. … We’re fighting Parkinson’s because we’re fighting together. We’re fighting it as a community, and we’re knowledge sharing and really just trying to use that team as much as we can to build that community and be there for each other. And so while I wouldn’t look at it as a support group, it’s definitely a team of folks that are absolutely there for you. Just some beautiful friendships that have been made. And so yes I wouldn’t call maybe any of us a boxer in a ring, you know, but man we’re boxing in this thing called life, and we’re boxing and knock out Parkinson’s, and I think that’s our definition of boxer.
KIM GAMBLE: I’m going to stay there for one more second. Can you explain to them kind of the Rock Steady Boxing concept that is not just exercise but how you stimulate in the other parts that go along with that.
PHILIP RITCHY: Yeah, absolutely, so our class is about an hour long. I tell everybody, I mean we have the former mayor of Huntersville come, I know he wouldn’t mind me sharing this, he said he was sore for a week. So I mean we while we have some folks that you know maybe bounce at walker or bounce at wheelchair, we have modifications for them. There’s plenty of folks back there that probably run a mile faster than I could, and you know it’s just a matter of finding where you’re at for that day, getting that workout in, and so we start with a general warm up, just like anyone in here before they do a workout and really focusing on range of motion, focusing on our base, focusing on our confidence our stability and just getting the heart rate going, get those endorphins going, getting that body feeling good, and then we’ll do a lot of mid work, a lot of heavy bag work. I always say if I was training a boxer I’d train them just like we train on a Rock Steady Boxing team. You know, intensity might be different sometimes, duration might be different sometimes, but the workout is the workout, and we do an absolute very strong boxing workout whether someone needs to be sitting down that day or whether somebody’s moving all around that bag, and they’re running with Coach Fred or whatever that may be. Then we’ll finish with some movement exercises, so big steps to little steps or big hands to little hands, and really just trying to get the mind and the body working together, taking our time with it like the gentleman that was working with Michael J. Fox. You know, they take a moment to settle in, and we’ll pick it right back up where that is, and so really just trying to focus on movement, focus on energy, and then my favorite part of class is do a breakdown where we stretch it out at the end, and we clap it up and scream and hoot and holler like it’s Remember the Titans and bring it in for a Rock Steady on three, and you know tell everybody we love them and we’re proud of them and so just trying to have that that energy that’s going to touch the mind, the body, the soul and all those things that are important once again just for all of us.
KIM GAMBLE: Great. Other questions in the audience at this point? Yes, ma’am.
AUDIENCE MEMBER: Getting involved with physical activity, is it better to start as soon as you find out about it or does it really make a difference?…
KIM GAMBLE: So the question is, is it better to start exercise early on, I think it’s the best way to kind of put it, and be steady and continue the exercise, so Dr. Iyer, that feels like a question for you, that impact of exercise in Parkinson’s disease.
DR. SANJAY IYER: I would say yes, yes and yes, the earlier you start, the better, and the more you stick with it, the better. I think we noticed during the pandemic what happened. The exercise classes closed, we weren’t getting out, people weren’t communicating and socializing, and then we all felt it. But it doesn’t mean you can’t gain it back when you get back into it. I think people realize when they exercise more, they feel better. When they feel better, they want to exercise more, and my patients will tell me when they go on vacation, and they miss their Rock Steady Boxing class, they come back and say, gosh, you know I feel like I’m taking a step back. I need to get back to my boxing class, and I think that’s a testament to what it can do, and I think you know besides the movement, I think you know Phil hit on something that the movement is really important. At the same rate they work on memory, they work on your voice, they work on your balance, they work on so many things, and ultimately it’s the fellowship that comes out of it that motivates people to really want to continue doing it, the accountability that comes, so you can’t underscore the importance of that.
KIM GAMBLE: Are there questions?
AUDIENCE MEMBER: Yes. I have a question for Dr. Iyer about the Memory & Movement Charlotte center. What else is it connected to? So what else is Parkinson’s connected to that would make you name it Memory & Movement versus Parkinson’s Charlotte Center?
DR. SANJAY IYER: Our founding partner was very interested in dementia or memory care as his parents were touched by that, so it was originally known as the Memory Center Charlotte. We started sharing patients over the years, and ultimately when I joined, we decided to change the name to Memory & Movement because that brought the movement side of it. I think there’s a lot of overlap, a lot of the movement patients with Parkinson’s, some may develop issues with their cognition, so there’s overlap. A lot of the patients with dementia or Alzheimer’s or Lewy body disease might develop some movement issues, so there’s a lot of overlap there. And that’s kind of where the name came from.
BETTY CHAFIN RASH: When was it established? Because it didn’t exist, you know, when Dennis was diagnosed, and I only wish it had.
DR. SANJAY IYER: It’s been what 10 years almost 10 years. 2013.
KIM GAMBLE: Let’s talk a little bit about your story.
BETTY CHAFIN RASH: My story, as Dr. Iyer knows, is in some ways quite different. You know, when I watched, I thought about Michael J. Fox going through Parkinson’s for what, three decades. When my husband, Dennis, was diagnosed, no question he had had it, and as I said he was in denial. You know, he was stooping, and I would say, honey, why are you stooping? Every man in my family always stooped. It became clear to me with the shuffling, you know, with the slowness of movement, with the difficulty of buckling a belt, buttoning his shirt, and so I was with a good friend, and I described what was going on, and she said, Betty, he has Parkinson’s. Parkinson’s? So I went home, obviously like most of us Googled Parkinson’s, realized that Dennis had seven of the 10 symptoms, so we were at our lake house, and I said to Dennis, we need to have a conversation, a serious conversation. He said, about what? I said, I think you have Parkinson’s. Of course, totally shocked on his face, and when his principal care physician recommended that he go see a neurologist, she said, yes, I think you have Parkinson’s, and I will give you a prescription, and tomorrow I’m going on maternity leave. So three months later, we went back to see her. It was clear that she didn’t know very much about Parkinson’s. Luckily through some mutual friends we found this doctor who does know obviously a lot about Parkinson’s, but unlike Michael J Fox, unlike a number of people with Parkinson’s, Dennis deteriorated very quickly. He was diagnosed, and within a little over two years he died, and so it’s difficult for me in a way to relate to what I just saw with Michael J Fox. It was a beautiful story, you know. I could empathize with his frustration about what was going with his body, and I watched what happened to Dennis. Even now it’s it’s very painful for me and to understand how he deteriorated so quickly. You have any thoughts about that?
DR. SANJAY IYER: As we said, every course is so different, and everyone that’s involved is so different, and the factors in their care are so different, but he certainly was a very special man, and as much as Betty would say, you know, he’s having these challenges, and he’s having this, he would always come in with a smile on his face and say, you know what, I’m doing just fine.
BETTY CHAFIN RASH: He would never get depressed. He would just say, I have Parkinson’s. It’s inconvenient.
KIM GAMBLE: Betty, do you have something that you would share with like a caregiver or a family member, something to motivate them or kind of share with them as a motivator?
BETTY CHAFIN RASH: Well, the most important thing I think as a caregiver is to tell the person for whom you’re caring how much you love him or her. I think that that means so much, and I can’t tell you the number of times knowing what I was giving up to take care of him on almost a full-time basis, the number of times he would look at me and say, I love you so much …It’s really important, the communication I think between the caregiver and the patient is so important.
KIM GAMBLE: It really is, so it sounds like kind of focusing on those good moments that you had with them is definitely what got you through and hold on to those memories, that it wasn’t a death sentence, even though it is a chronic disease. Thank you for sharing your story. Ann Marie, let’s talk about some of the resources here that you, the Parkinson Association of the Carolinas have to support North and South Carolina programs and resources.
ANN MARIE WORMAN: Sure. That’s what we want to do. We want to be that resource to you to connect you to services, whether it is a movement disorder specialist or exercise movement therapy classes like Rock Steady yoga, so we offer free classes ourselves in upper state South Carolina, Charlotte, Moorsville, Southport, North Carolina. We have yoga, Dance for Parkinson’s and Peddling for Parkinson’s. It’s important to us to offer things for free because we we feel you all have enough of a burden financially with treatments and medications, and as long as we can we’re going to do that. So we have support groups. We list all of the movement exercise opportunities across both states,. So if you call us from Anderson, South Carolina, we’re going to check, and we’re going to say, yeah, guess what, there’s a power moves class in your area. Here’s where it takes place. We also offer educational programs throughout the year. We have several coming up, May 31 with Dr. Iyer an educational program, on June 8 another educational program with Dr. Wiggins and I believe Dr. Fleming, I’m not sure. So we have that one, and then we have a new class starting on June 24. It’s a newly diagnosed Parkinson’s program for people diagnosed in the last three years. You’re going to go through a half day on a Saturday, and you’re going to have a movement disorder specialist and possibly some other experts kind of just walk you through Parkinson’s disease, from the beginning through all the various stages and things that are associated with it. We’ll be advertising that through our emails.
We offer virtual programming. We have a virtual support group every month because we learned that from the pandemic. And we said, novel idea, let’s keep doing that for people who can’t get to an in-person support group or don’t have one near them. We also have a Wellness Wednesday virtual program every month. We try to bring you speakers on wellness. It might be just, you know, how to alleviate caregiver burnout, how to declutter your home, something just to take your mind off and just practice some physical, emotional, mental rejuvenation. So we try to be that resource for you. We have peer-to-peer resources. We just talked about this the other day, that if you’re not ready for a support group, because as we’ve mentioned a lot of people when they’re first diagnosed don’t want to go into a situation and see somebody further along in the progression of the disease, I can’t do that, we offer one-to-one peer-to-peer support. You can contact us, and we will match you up with one of our volunteers who has Parkinson’s or is a caregiver, and you can connect with them on an individual basis. We’ve had some come up with, you know, partnerships, that couples met couples, and now they’re friends five, six, seven years later, playing cards on Friday nights. So it’s a great opportunity.
We have lots to offer for you. We’re happy to do the Googling for you so that you don’t get frustrated trying to find things. That’s what we want to do, we want to do the finding for you, and then connect you and get you there. So that’s kind of part of what we do, and if you want to know more, we have brochures in the lobby. Feel free to take one. Call us. We had a lady today leave a voice message. you guys, I just want to talk to someone, I don’t know if that’s what you do, but I need to. And we’re going to call her tomorrow, and I’m going to listen to what she has to say because sometimes it’s just talking to someone and bouncing what you’re going through off them to learn something new that we can hopefully help her with. That’s why we’re here. We’re here to be your resource, to connect you, your family, your friends, help you with navigating work if you’re still working, all of those things.
KIM GAMBLE: Great. And us in the Carolinas, we are fortunate that we also have support from the national organization, the Parkinson’s Foundation. They have a very similar goal… They offer resources and free educational symposiums as well. So we are very blessed here in the Carolinas to have two organizations to support the Parkinson’s community. Other questions in the audience…
DR. SANJAY IYER: One thing I would comment is, people always ask, well, where should I go and read? What should I look up? Where should I go? And you know, we tell folks don’t let this consume you. It’s good to stay on top of what’s happening, but this is just one part of you. But if you’re interested in learning more, obviously The Michael J. Fox Foundation has amazing information. His scientific team is second to none, and also the Parkinson’s Foundation, which very well represented here today, those are the two organizations that I usually will refer my patients to to read about and learn about Parkinson’s.
AUDIENCE MEMBER: [INAUDIBLE]
KIM GAMBLE: He wants to know if Parkinson’s is a hereditary disease. Dr. Iyer?
DR. IYER: The literature will say probably 5 to 10 percent of cases may be familial. There are a number of genes that have been identified that can run in the family. At the same rate, there are a lot of families that have the gene but don’t have the disease. It’s pretty complicated, so I think likely an interplay of environment plus genetics kind of plays into it, but roughly 5 to 10 percent is kind of what the literature shows, as you’re saying.
KIM GAMBLE: The Michael J. Fox, as well as the Parkinson’s Foundation actually have some genetic testing for patients that are diagnosed with Parkinson’s. So that’s another resource for additional information about genetics.
ANN MARIE WORMAN: I have a question about that too, because I get asked a lot, Dr. Iyer, if someone has been identified who has Parkinson’s with the Parkinson’s gene, would it be beneficial for their children to be tested for that gene? Would you recommend that they follow that path?
DR. SANJAY IYER: It’s always a loaded question because you know if you have the gene, it doesn’t always mean you’re going to have the disease. But second, if you know 30 or 40 years ahead of time that you’re going to have something, and if there’s not a cure for it or something that will slow the progression, do you want to know? So it is a bit of a loaded question. I think right now, we have a lot of patients who will call and ask and say, well, my dad’s got Parkinson’s. I want to be tested. Should I be? You know, I think by and large I would tell them no.
KIM GAMBLE: Okay, let’s go to the back there, gentlemen in the blue shirt. I’ll come back to you ladies here.
AUDIENCE MEMBER: Anything on the horizon as far as pharmaceuticals? …
DR. SANJAY IYER: I think in terms of the pharmaceuticals that I’m the most excited about that are on the horizon might be some of the subcutaneous infusion pumps, much like the insulin pumps that they have for diabetics. There are a couple of pumps, one with levodopa that many patients with Parkinson’s are currently taking orally. There’s another one with apomorphine that’s being looked at. I think those are going to be game changers at some point when they come out. Again, not sure when, hopefully within the next year or so, but we’ll see. Those are the two most promising pharmaceutical agents that I’m excited about.
KIM GAMBLE: Okay lady here in this row with the barrette, you had your hand up.
AUDIENCE MEMBER: [INAUDIBLE]
DR. SANJAY IYER: So the medicine he was popping is the carbidopa levodopa or the Sinemet that many people take. Most people can tell when they take it, when it kicks in, and how long it lasts, and when it wears off, and they start to dose themselves accordingly. You know I would say average is about four hours, five hours, maybe, is how long it might work. For some people it’s shorter. He realized very early on when he would take a tablet, it would knock his tremor out for two or three hours, and then he would take another one and then another one, and so he was trying to protect his movie career, so every so often he would pop another one, and that’s sort of what happened. But I think for most of our patients, we try to teach them, can you feel it kick in? If so what does that feel like? What does it do? How long does that feeling last and when does it wear off? And then we try to dose it accordingly.
KIM GAMBLE: Another popular question since we’re talking about tremor, sorry, Dr. Iyer, but this one is for you too, is that a lot of people think because you have tremor does that necessarily mean you have Parkinson’s disease. Can you talk about the two distinguishing diagnoses?
DR. SANJAY IYER: There are a million things that will cause tremors. You know when you’re in front of a big audience and you’re nervous, we all get a little shaky. That doesn’t mean you have Parkinson’s. We all have a little bit of a physiologic tremor. I know if I drink enough Starbucks, mine comes out. But there’s certain medications that people take that can cause tremors, you know different stimulants, certain antidepressants, can cause tremors. Certainly Parkinson’s is a tremorgenic condition. There’s another condition that’s very common that’s called essential tremor that’s often misdiagnosed as Parkinson’s or Parkinson’s is misdiagnosed as essential tremor. The differences tend to be that Parkinson’s is more often one-sided or unilateral when it starts, whereas essential tremor affects both sides from the outset. Parkinson’s tremors are typically when you’re at rest, when your hand is resting in your lap or hanging down by your side. Essential tremor, like many of you might remember Katharine Hepburn had that famous voice. When you’re doing things with your hands, that’s when it shakes as opposed to when it’s at rest. So that’s a big difference, so a lot of different things can cause tremors and not all of them are Parkinson’s.
KIM GAMBLE: Other questions? Yes, ma’am.
AUDIENCE MEMBER: [INAUDIBLE]
KIM GAMBLE: So the question is, there is a Parkinson’s marker that has been identified, and the question is why should people already diagnosed with Parkinson’s disease be excited about this marker?
DR. SANJAY IYER: So I think you’re referring to the the recent announcement from The Michael J. Fox Foundation that they’ve identified the alpha synuclein protein in the spinal fluid, and so again I mean it’s important to have a marker for disease, because ultimately when there is a treatment that will slow progression, stop it, maybe cure it, you want to identify people as early as possible, so people who are at higher risk for developing it, maybe it’s someone who has a family history of it, so you know if somebody has Parkinson’s disease. You know how exciting is it for you that they’ve identified this? I would say, probably not terribly exciting, but ultimately what that translates into is that the earlier we can detect it and find it, once there is a treatment, then that will slow the progression. Then it would be made available to all of you. I think ultimately there will probably be a database that’ll be created. People are going to give samples of their spinal fluid or even their skin now that there’s the skin biopsy that’s available, so that’s what I would say about it.
KIM GAMBLE: So let’s go to Phil. Let’s talk about exercise. There are studies out here that show that exercise actually slows the progression of Parkinson’s disease. Phil, can you talk about your experience that you see with Parkinson’s patients, kind of when they first get there and the impact the exercise makes on them as they continue through your program.
PHILIP RITCHY: Definitely. I think, you know, the consistency. Your first time doing anything, it’s going to feel a little bit weird. We’re putting on gloves. We’re punching something that’s heavy. Luckily it’s not punching back but just getting better at you know understanding when to time the medicine, understanding the effect the workout’s going to have, you know make sure we’re getting enough nutrition maybe beforehand, or staying hydrated. So I think consistency is really the biggest thing, but we always talk about move with purpose, move with intention, and you know one of the most cool things to watch is one of our coaches say, hey, move with purpose, move with intention. Everybody’s chest gets a little bit taller, and everybody starts to use those arms a little bit more and walk with that stride and move with that confidence, and it’s, can we take that confidence that we have in our hour class and bottle it up and give it to you so we can live as much of the rest of our life with that confidence and walk with purpose and walk with intention?
And, hey, we’re really reaching for that red line or, man, that left jab’s getting a little bit stronger, and I think the consistency and just the the daily progress that is able to be achieved by coming into the class, I mean, just like all of us you know. As we work out, maybe we can run a mile a little bit faster, or we can do one more push-up, it’s the same thing here. It’s like I said, just bottling up that intention, that purpose, that confidence, that strength, and trying to move out into as much of that 24 hours of the day as we can.
ANN MARIE WORMAN: Yes, Dr. Iyer alluded to a skin biopsy test. Now I was totally caught off guard by that when someone else mentioned it to me a few weeks ago. Can you talk a little bit more about that? I have apparently missed that somewhere.
DR. SANJAY IYER: It was about a year ago that I guess the skin biopsy gained FDA approval. I think CND Life Sciences is the name of the company, and they’ve developed a punch biopsy. You take samples from three places, one behind the neck, one just above the knee, and one just above the ankle. And again the thought is that this same protein, this alpha synuclein, that we find in the brain can also exist in the nerve fibers of the skin, and so by taking samples of it, there’s a lab in Phoenix, Arizona, that does the analysis. But they can actually identify this protein to confirm that you have one of three things, what we call synucleinopathies, people with alpha synuclein, meaning they would have either Parkinson’s disease, Lewy body dementia or multisystem atrophy, those three conditions in which that protein usually might exist. So you know it’s relatively new and pretty accurate, you know sort of 96%, if I recall the data, not terribly different maybe a little bit better than daTscans. Some of the data shows that you can identify the protein in the skin even 10 years before the onset of symptoms, so again as you speak to early diagnosis, ultimately when there is a definitive treatment, it’s something that I think could be in the mix.
ANN MARIE WORMAN: So someone maybe has early non-motor symptoms that you’re experiencing all these other things that you could say, you know, that could be Parkinson’s. That might be a good option.
DR. SANJAY IYER: It’s possible. I mean, again, you have to look at the clinical picture. The doctors who develop the test will tell us that they have found this protein in people 10 years before the onset of their first motor symptoms, so again a lot to be learned but it is it is available.
AUDIENCE MEMBER: [INAUDIBLE]
DR. SANJAY IYER: The biopsy has you know reasonable insurance coverage. Even with insurance coverage, sometimes the copay or the out-of-pocket might be like $1,000 or $1,200. You know we’ve done a ton of biopsies in our clinic, and we only do them when there’s really good coverage and the patients don’t have to pay a lot. The daTscan, if there’s no coverage, is I think somewhere around $12,000. Again, Medicare pays, you know, 80 percent, so 80 percent of a lot is still a lot. So it just depends on the clinical situation as to which you know with the daTscan there’s certain medications that if you’re taking them, you have to come off them because it may interfere. I mean the most common, at least from my patient base, is an antidepressant Wellbutrin, so again if someone’s depression is well-controlled on Wellbutrin, I’m not going to take them off it to get a daTscan. I’d rather do the biopsy, but if someone’s on a strong blood thinner and you don’t want to take them off that, you might want to get the daTscan, so it’s good to have multiple tests.
AUDIENCE MEMBER: What about diet? You said exercise can improve Parkinson’s. Can diet do anything? And any supplements in addition to diets?…
KIM GAMBLE: So the question is what about diet and how does diet impact the treatment plan of Parkinson’s, as well as supplements? Dr. Iyer, sorry, but that’s you too.
DR. SANJAY IYER: So there’s no diet that’s been you know scientifically proven to be better than any other for Parkinson’s, and in dementia, for example, they talk a lot about the Mediterranean diets and things like that, and they looked at sort of the keto diets in Parkinson’s, and there’s some some data and some patients that suggest that maybe it’s helpful, but you know, by and large, what I tell patients is, we all know that there are certain foods when you eat them you feel energetic, you feel fueled, you feel good. There are certain foods when you eat them you feel bad, you don’t feel energetic, you feel lethargic, and so really follow that you don’t want to eliminate any particular protein or carbohydrate group. You want to make sure you’re getting all your food groups. Constipation can be a big problem in Parkinson’s, so we think about all the green leafy vegetables and all the roughage and the hydration is very important, so again there’s no data-proven diet that’s magical. It’s really what works for your constitution.
AUDIENCE MEMBER: [INAUDIBLE]
KIM GAMBLE: Yes ma’am, so the question is, has anybody come in with long COVID basically presenting with symptoms like Parkinson’s and the central nervous system?
DR. SANJAY IYER: So I’ve not personally seen any patients you know come in with long COVID symptoms that were showing symptoms that you’re describing. When you talk to you know all the neurologists out there, many of us will hear, you know, internal tremors in our Parkinson’s patients, you know, whether you see it or not. A lot of people feel it on the inside and that can often be a sign that we see in patients with Parkinson’s. But i can’t specifically say that I’ve seen patients with long COVID that have come in with those symptoms.
AUDIENCE MEMBER: Yes, sir, going back to the exercise question. So I understand that the recommendation is to have a cardio workout of 75 to 150 minutes a week, that there’s been documentation that slowed the progression of the disease. Just wondering if you are aware of that or can comment on it?
PHILIP RITCHY: Yeah, so much like the diet question, I mean I wouldn’t want someone to start day one and try and go seven days a week and try to go all out and do every yoga class or every tai chi class or every dance class. It’s really finding what works best for you, and then let’s try and build from there. So we have our Rock Steady Boxing class three times a week, and that’s a big question that I get. Should I come one time? Should I come three times? You know I’d really encourage everybody to try and come as often as you’re able and as often as you feel comfortable, and if you need to stop halfway through, hey, that’s great. We’re going to try and get one more minute or 10 more minutes that next time. And just like once again how I would train a boxer for a fight or how I would train a runner for a race. It’s really listening to that body on a daily basis, and number one, we don’t want to get injured in anything that we do, so you know making sure that the body’s feeling good, feeling strong. But as you feel up to it, increase the intensity, and like I said a lot of times that confidence kind of really comes about.
One time a week is better than nothing at all, and you know I think there’s a point of diminishing returns if we’re trying to run 10 miles seven days a week. So like I said, really finding what works best for you, understanding that walking is one of the best forms of medicine that there is. You know just going out for a five- or 10-minute walk, don’t worry about how long you’re walking forward, don’t worry about what your heart rate is, you know, not stressing out, just being out in the environment, yoga, stretching, doing a five-minute, 10-minute routine in the early morning time, getting that body feeling good. It doesn’t have to be down dog or anything crazy like that. It could be done in a chair. So just remembering that movement is energy, and you know it doesn’t necessarily have to be exactly into that 75 or 150 minutes. It’s really building that routine that works best for you and trying to keep that as consistent as long as you can.
KIM GAMBLE: I think the summary is we all know that diet and exercise are going to impact us whether we have Parkinson’s or not, so it’s one of those that you do what you can for Parkinson’s patients. Yes they do adapt, but the main thing is to do what your body feels comfortable doing and not push beyond that until you work up to that. I think is a good rule of thumb.
ANN MARIE WORMAN: I have had people ask me, well, you know, I was diagnosed with Parkinson’s. I loved cycling. I would ride my bike for 10 miles on the weekends. I guess I have to stop that, and I’m all, unless you’re falling off, you don’t have to stop exercise. That diagnosis of Parkinson’s disease is not a whoa now, I have to be careful, I need to slow down. It’s keep doing what you can do, like Phil was saying, you keep doing it until you can’t, until it’s not safe, until you’re hurting yourself. Talk to your doctor, but exercise as much as you can to the best of your ability. That’s really what it’s all about, and then taper it off from there if you have to. But yeah, if you get that diagnosis and you’re playing golf, keep playing. You’re cycling, keep cycling. Like I said, as long as it’s safe, and you’re not hurting yourself.
PHILIP RITCHY: Yeah, real quick, I mean it doesn’t have to be boxing… If you’re a cyclist, cycle. Walking is one of the best forms there is, push-ups, sit-ups, whatever that is for you. Movement is energy, and just trying to build that strength to become stronger as we go, so it doesn’t have to be a specific workout or a specific time. I just think the consistency is the key.
KIM GAMBLE: Okay, guys, I think this has been great. I’d like to thank the Independent Picture House for sharing the film and hosting us tonight, thank you. Also thank you to my panelists, Phil, Ann Marie, Dr. Iyer and, of course, Ms. Betty Chafin Rash. Sharing your story and your journey is very brave, and we appreciate that.