Empowered by Parkinson's

(light music) Everybody has their impairment. I started having a tremor in my left hand. I couldn't work with metal. I couldn't work with wood. I'd given up all my hobbies. I kinda knew what it was 'cause it is life-altering. There's an on-off button here. I'm gonna hold this over my battery to the pulse generator. And I'm gonna turn this on and then just gonna dial this button down. (beeping) (light music) So that's the animal the DBS treats. That's why I say it saved my life. 'Cause I couldn't have done this. (light music) Incredible. (light music) Parkinson's disease is a neurodegenerative disorder. Cells in the brain die. And as a result, a person's movement is affected. Clinically Parkinson's disease is seen as a motor disease, so there's a slowness of movement, hand tremor, there could be falls, trouble with balance. It's not uncommon for people with Parkinson's to have troubles with depression and anxiety and mood disorders as well. It is the second most common neurodegenerative disorder after Alzheimer's disease. Almost a million Americans, and some six million people worldwide are living with Parkinson's. It can start at all different ages. And so people are often, you know, working and looking forward to retirement. And then they get the diagnosis of Parkinson's. And they think everything is over, but it's not. There's a lot of treatment for Parkinson's that's very affective. I was diagnosed in November of 2007. And it got progressively worse. And it was clear that I was not having a whole lot of options with medical therapy. I could respond, but I was taking more and more medicine. When I had the DBS, I went off the medicine. DBS is deep brain stimulation. It is a way of giving electrical stimulation to specific structures in the brain to improve movement. As a physician, I knew going into it that it was brain surgery. You can't get away from the fact that they're actually going through the skull, making a burr hole, putting the electrode down in there. But given the risks statistically, it was very safe. The kind of person that it is right for would be somebody that has motor symptoms that are not, either not being controlled well with medications or they're having side effects on the medications that they're on. Also want them to have pretty good balance so, because DBS can affect balance and cognitively they need to be pretty, pretty good cognitively as well. Suffice to say they know the area of the brain that you need to stimulate. And that stimulation stops the tremor. It's that simple. When they developed the trials for deep brain stimulation they really wanted patients to have a good amount of what we call off timing. Your medicines aren't working, or dyskinesia up to six hours in a day. And so if you can imagine having excessive movements six or more hours a day where you're not able to walk straight, you're bumping into things, you're falling out of your chair. Before I had DBS, I couldn't eat soup, peas, anything with a spoon. It had to stick to the utensil for me to be able to eat it. You wanna make sure that they had a good response to Parkinson's medications, especially carbidopa levodopa, which is really the mainstay gold standard. By doing this procedure, you're able to, to do those things again. It's right here. It's right there. The little knot is where the holding, where the electrode comes out. It goes behind your ear, down your neck, into the battery. And I had the battery put in my abdomen 'cause I shoot. So the wire tunnels under my skin to the battery here. Primarily his symptoms are controlled with DBS, and it's, you know, it's made a big difference in his life. Right now, the biggest thing in my life is boxing, something I do Monday, Wednesday and Friday, try not to miss. I feel like it's helped sustain me through this disease, and boxing is something I can do every week to help fight the disease. And literally fight. You know, they check on me, and if I don't show up for three or four days, I get an email, why aren't you here? It also helps to know that people are expecting you there. This is a very accepting community. And that makes a huge difference. You can go, you know, warts, shingles and all. Exercise, the biggest thing is exercise. The drug of choice is exercise. Exercise has proven to be the one thing they know can slow the advancement of Parkinson's. What exercise does is really, really empowering. It's as important as the medication because it helps you feel better, move better. I mean there's just so much involved with it. I usually like to recommend a combination of aerobic exercise five days a week, 30 to 45 minutes. And in addition to that, some light strength training and stretching. So if they can get into a program that does that, that's ideal. Up, up, up, up Down, down, down, down Bigger! I set up my class based on symptoms of Parkinson's. What we do is we exaggerate all the motions to retrain the brain to back up the neural pathways, to really strengthen those pathways and remind people all the way using full range of motion.

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Bend, kick, bend. Sit up. Try to bring those legs way up just to remind the brain to lift as high as we can. To sit in a class and suddenly to start like this and to be able to just really just move it, it reminds you of how you used to be and that you still can because look at those arms. They're moving again. (upbeat music) We often call it a disease of one because there's probably a dozen or more sort of typical symptoms, and nobody gets all of them. You get sort of your collection of symptoms. I started experiencing stiffness and slowness on my left side. And I thought I was overdoing it at the gym, and I was also pushing 50. And I thought, well this is just kinda what happens as you, you know, as you age. And then I got a slight tremor in my left index finger. So I went to see a neurologist. After he examined me he said "What worries me "is that I think you're in the early stages "of Parkinson's disease." I call it the 16 words that changed my life. And I said, "But I have young children, "and I'm, you know, 48 years old." And he stopped me and he said, "Allan", he said, "I want you to remember this. "It's really important." He said, "Don't let someone else's story "become your story." So one of the things I found really helpful in living with Parkinson's is running. It certainly gives you a dopamine boost. So whatever levels of dopamine you still have get, for lack of a better word, excited and that helps you to, to feel better. It's meditative. It's a time when I think about a lot of things. Sometimes I try to think about nothing. I just try to listen to my breathing and my cadence and my heart beat. My wife Tracy has been an avid runner for a lot of years. You know, I said you should go out there and try it. And really the first month he said, "I don't know if I can do this." But with each run, he got stronger and he saw that it made him feel better. And now he's a machine. I'm training for the New York Marathon as we speak. He's not just running, he's running marathons now. In November of 2016, Tracy ran the New York Marathon for the first time. That was 10 days after my Parkinson's diagnosis and was reeling with anxiety and fear and worry. So while I was feeling elated about being able to run this marathon, it was a heaviness too. It was, you know, bittersweet and it's just incredible to think about, fast forward three years, and now he's running the marathon. And when I go back in a few weeks, I'll be in a different place with a life with Parkinson's and I, I trust that the marathon experience will have different contours and colors in it that it didn't have the first time. (light music) As a group of people with Parkinson's, I think we wanna believe that something does help us. You're always looking for some enhancement to your life and your condition. The biggest thing I noticed, I was having trouble going to sleep at night. You don't have tremors when you sleep. But getting to sleep can be another issue. 'Cause my hand would just shake, shake, shake with tremor. Anxiety is a major symptom and insomnia is a major symptom. And if CBD actually ends up being helpful for those things, then it might be very useful in Parkinson's disease. People with Parkinson's want to know more and what can we do to utilize cannabis to help with their disease. There's no information really to date. The research is really scarce. Our community's looking for guidance, and legalization is happening more and more. There was this big hype in Colorado back in 2014. Everybody was going off to the dispensaries. I had already started to take CBD oil to see what the reactions might be with my Parkinson's. And I couldn't participate in a study until that had gotten out of my system. Yeah, one of the problems is this is not your father's marijuana. In the '60s and '70s, the concentration of THC and CBD was incredibly low compared to the powerhouse pot that you can buy now. The state of Colorado put out a request for proposals and offered $10 million to encourage research on marijuana. Since many of my patients were taking marijuana in various different forms, and I was worried about them, and I knew there was no solid research that it actually was helpful, then we decided to put in a proposal. The first study was just the open label where we were testing the dose out. It took us 18 months to find a study drug that was high in CBD and low in THC. And then the second is the blind randomized control, and we're in the middle of the placebo control study. Overall the patients were telling us that they were sleeping better and that, that they had a little less anxiety and irritability. Bingo, 15 minutes, I was asleep. It stopped the tremors. I felt like there was some benefit. My sleep seemed to be more sound. So it could be that CBD reduces anxiety and that reduces the tremor. If it's out there and people choose to do it, they should have the information so they can make certain that they're safe, that they know what they're getting into and can make the decision to say "oh, you know, "this is maybe not for me. "It's a little uncertain." Or, "I know a little bit more and I'm willing "to give it a try." People are looking to gain some control of their lives. And it's a disease which can rob individuals of that control. (light piano music) My story begins a long time ago, actually more than 30 years ago. And it had nothing to do with Parkinson's to start. What happened was I became in love with the field of gerontology and became a gerontologist and did graduate work looking at people with different dementias and how they adapted to that and how their family caregivers and family adapted to that. I did some work with Parkinson's families, but not a lot. But what really hit home was when Parkinson's hit home. And that's when my older brother started showing symptoms almost 15 years ago. Here I'd been a caregiver researcher for all these years and now I actually was being a caregiver. And then I started to have my own symptoms. And so the next turn for me was not only just being a researcher of caregivers, but now a researcher of people like me who have Parkinson's. Until you really get that diagnosis, you kinda think oh, it's just a runny nose, or it's just a little bit of a hard time sleeping or I can't move around quite right. Maybe I'm just getting these symptoms because I'm getting older. But that wasn't the case. And I did get a diagnosis in December of 2016 of young-onset Parkinson's disease. I remember driving home sobbing, and I couldn't believe it and frankly one of the worst parts of it was thinking what it would do to my family. Brrr. We kind of noticed, from maybe my junior or sophomore year of high school, that she was kind of, you know, shuffling a little bit and kind of having some of the early signs, you know, trouble sleeping, sitting down and walking and stuff like that. Until she got the diagnosis, it was always really frustrating because I was just like "Mom, why can't you do this?" Like, why, "stop walking so slow, like walk faster". And that empathy, or the lack thereof was sort of an issue. I guess the biggest challenge for me was really how much of it was aging, and how much of it was Parkinson's after obviously the diagnosis. And then when she got the diagnosis, it got a whole lot, it got easier for me to kind of accept it. Because once you find out what's wrong, you can, like, actually start doing things that could potentially make it better. Relief is definitely the, the biggest emotion when we got, you know, that diagnosis. It's a little bit of a gift in a very strange way because it's made us closer. It's increased my empathy for Carol and understanding. The irony of my being a caregiving researcher and now being a caregiver and now my being a person with Parkinson's, the irony's not lost on me or my family. It's been a challenge, but it's been something our family has managed quite well. I can just sit back and let this cover us and make us sad, but find our peer group, find our people and help them as well. I wouldn't wish this disease on anyone, but there are a lot of gifts of it, and I wanna make the most of that to help other people. It's one of the largest datasets that exist today on people living with Parkinson's, over 40,000 people on Fox Insight, about 3/4 of them have Parkinson's. It's a virtual clinical study which, it takes part on the internet, and anyone in the comfort of their own home could participate, whether you have Parkinson's or you just wanna help. I think being in the study's been real helpful for me and empowering definitely. These questions are the health questions right here, the health history. And talking about now mental health, it asks if I've ever been depressed. So no, I have not. We also make all the data available to the research community so it could be mined in realtime to get insights into the disease. We do learn from some neurologists that if you've seen one case of Parkinson's you've only seen one case of Parkinson's. So we don't really know what this may look like in two, five, 10, 15 years. We shall overcome We shall overcome We shall overcome some day Oh deep in my heart I do believe that we shall overcome someday It all came to be because I volunteered at the University of Pennsylvania for a study in the long-term effects of singing, choral singing, on people with Parkinson's. So we embarked on a study with Penn Medicine and we had nine participants. We liked the process so much that when the experiment had concluded, we kept the choir. It's a rich community choir mostly of folks living with Parkinson's. Have fun, shh, shh, woo! Shh, shh. -

Choir Members

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Woo! Holly does a lot to help people strengthen their voices, project, articulate, sing with purpose. And the spirit and joy is infectious. (Holly singing scales) (choir members singing scales) Well when I went to the doctor, he noticed that my vocal cords were separating from each other. So he told me to try the singing. And I tried the singing. So when I went back to him in a year or longer, my vocal cords had closed up. So that was improvement in my voice and my vocal cords. Resilience We are strong Shoulder to shoulder we move along Resilience Make a new plan Stand up again and say yes we can What I love is being in that room and singing and just feeling the music. When you sing together, you really bond your souls. Resilience We are strong The fellowship, the sense of community, the purpose, all those factors are part of why the choir is so powerful. Yes we can Even thinking a song can help with your movement. The kinds of songs we sing, it makes me happier and I love it. I sing it when I walk the dog and it just gets me into a different place. (light music) Of all the chronic diseases, this is probably the easiest one for me to deal with. So I'm grateful for that. I was in Dr. Leehey's office regarding this tremor in my left hand and sat down next to her desk, and she said, "Mel, you have Parkinson's." That was three years ago, May 9th. So once a week at least, I get out to be in nature. That gives me exercise. It involves several miles of hiking, and I still fish. My initial goal was to delay the onset of the Parkinson's medications as long as I could. And I've been successful so far. It's a small victory and one that I really appreciate. So right now, we probably have the most innovative pipeline of new therapies that we've ever had in Parkinson's. Current therapies for Parkinson's are effective, but over time that effectiveness can wane and many people develop side effects. So there's clearly a need for additional and new medications, both to improve the symptoms of people with Parkinson's and also because now we are hoping to develop disease-modifying therapies, that if they're started early in the course, might help a person to stay healthy for longer. And to date, we've actually found more than 90 different genetic variants that are associated with Parkinson's, and this gives us clues that could help us better create treatments. We have the opportunity to identify potentially what is going wrong with the genes when a cell becomes diseased, when a disease expresses itself leading to a neuron to become sick before the cells are fully lost. Fox Insight is collecting a lot of this clinical data and quality of life data from individuals. By participating in the 23andMe collaboration we also now have the genetic data. 10 years ago, 23andMe had set this audacious goal of getting 10,000 patients with Parkinson's to come together, take the test, provide their genetic information and help us do really great science. Right now there are over 200 clinical trials happening for Parkinson's. Most of the effective drugs work through a dopaminergic mechanism of action either by supplementing the dopamine levels or seeking to replace them. Cerevance's science has identified a target in the cells that receive that dopamine signal, a protein that they produce that's not produced in other neurons, or at much lower amounts. And we have a drug that can selectively modulate that target. We're hoping that because of its selective effects on the brain, TVN424 might provide the motor benefit without eliciting those dyskinesia side effects. And honestly, we only need a small percentage of them to work to have a real impact for patients. This is an exciting time 'cause it seems like every month or so, there's something out there that gives you hope. And if you have hope, it's easier to fight. Well I, I really am anxious to cure the disease. Here we hope for a cure of Parkinson's and other sorts of chain link disorders. I think without, without people participating, without research, you don't have any breakthroughs. You don't have any benefits. I would tell someone who was just diagnosed is to hold tight, there's hope and don't give up. I remain determined to not let Parkinson's control who I am. Parkinson's isn't a death sentence. It's something you can live well with for a long time. Medications are getting better by the, by the day. Technologies are getting better by the day. There are lots of things we can do to slow it down and to live a good life in spite of Parkinson's. And that's really where I try to put my energy with running and with my writing and with being a dad and being a husband and being a human. The determination to be yourself as much as you can and to not give up. The comparison I've made is that when you run a marathon, you reach 18, 19, 20 miles, and everything about your body says quit, and you don't have to do this. And I've always thought that dealing with Parkinson's or fighting with Parkinson's if you wanna say that is kinda like coming to that point in a race where you say "I'm not gonna give up." You just have to fight this sensation of letting Parkinson's win. So what does having Parkinson's mean for my life? So what will it teach me about myself and other people, about my values and priorities? About disappointment and regret? About a life lived more intentionally and with purpose? So what good can I do because I have Parkinson's? These questions push us forward and can also be constructive. Allan, Allan!! (crowd cheers) Nice job Allan! (light music) I wanna be ready I wanna be ready I wanna be ready When joy comes back to me I've been down heartache I've been down heartache I've been down heartache But I won't be down for long I wanna be ready I wanna be ready I wanna be ready When joy comes back to me When joy comes back to me Woo