Power Over Parkinson's

Usually when you're out meeting people for the first time a big question is, "So, what do you do for a living?" The question with a Parkinson group is, "So, when were you diagnosed?" I was diagnosed December 24, 2012. I was diagnosed just two years ago. February, 2015. 2009.

I was diagnosed in January of 2006, although I probably have to admit that I had it earlier than that and I was just afraid to go to the doctor about it. I was devastated. I couldn't believe it. I was constantly falling.

I couldn't really do the things I was doing previously. As a matter of fact, I just fell recently. And cut my leg. I started tripping over my own feet kind of thing.

You look at the average person with Parkinson's, they see their doctor about one hour a year. What do they do the rest of those hours? It's like 8000...what is it? 8,700-some hours.

You are in control of the rest of those hours and you have to make them count. One day I was walking, at school, down the hall, and I had my arm here, stuck. My friend said, "Michelle, what's wrong with your arm?" And I said, "Why, what, what do you mean?" She said, "It's just sticking-stiff right there." So I went to the doctor. That's the diagnosis I got.

"What's Parkinson's?" We didn't know too much about Parkinson's. I knew it wasn't a great diagnosis at the time, and I was, I was obviously shocked. I just said, "What is this?" Like your life changes totally one day. Parkinson's disease is a neurologic condition that manifests primarily with tremors, slowness of movement, rigidity of the muscles, and some difficulties with walking and balance.

Progression is part of Parkinson's disease until the time that we find the cure. So it is a chronic, progressive, neurodegenerative disorder-that is the reality. A friend of mine who'd been living with Parkinson's for a while, she said, "Parkinson's, it's hard to explain it to people. "But simply, it's not a death sentence.

We don't die from Parkinson's, but it's a life sentence." Five. Dig in. Six.

ELIZABETH

It slowly chips away at who I am and my abilities day-to-day, and it's a constant fight. Upper cuts! Upper cuts! At the time, exercise, you know, they, it wasn't on the doctor's radar.

DR. de MARCAIDA

Everything has been working well for you from the get-go and you have done everything right. Everything right.

MICHELLE

You go for your checkup- it's a motor skills test.

DR. De MARCAIDA

One plus, right leg.

MICHELLE

You get a number, and if your number keeps going up, you're progressing. And that's, they say, "Do you want to increase or de-, you know, increase your medications?" And that's pretty much it. You know, you continue to have primarily symptoms on the right. Very mild.

You have contained yourself. We are doing well. That's my goal-live with it. Until we get the cure.

DR. de MARCAIDA

Yes. We keep on going.

ELIZABETH

There is actually so much research now on exercise. And there still needs to be even more research on exercise. But there's definite evidence that it helps with symptom management-with balance, gait, rigidity.

KARL

Three. Two.

DR. de MARCAIDA

Something that should have been intuitive all along. But for all that time before ten years ago, there were physicians who were saying there was no benefit to physical therapy, there was no real benefit to exercise. But more recently we are establishing that the benefits of exercise go beyond just improving your strength or endurance, it goes back to the cellular level in potentially slowing down the progression of Parkinson's disease.

KARL

Michelle is a very strong-willed person and, and fortunately at the time a distant relative was going through an exercise program up in Waterloo University in Canada and we contacted her and we ended up making, you know, more than a dozen trips up there. She became part of an exercise program in, in Canada. I came home and hired a personal trainer, and we developed this program through the things I learned and through other research, and I was in a clinical trial at Yale in New Haven, and I went actually to the doctor, and she said, "You're doing great-your symptoms are improving. What are you doing?" I said, "Exercising." (indistinct chatter)

MICHELLE

I started sharing it with some Parkinson's friends. So it grew and grew and grew until, into what it is today. The exercises are focused on things we need to work on. Balance, posture, gait, and explosiveness.

WOMAN

Come on, add some power!

MICHELLE

I can walk better. It's on my right side so my right side just works better. I drag my foot a lot more if I don't exercise. Two days I'm okay without exercising.

If I go three days I start to feel jittery and on edge and then just less balanced and less fine motor control.

WOMAN

Take a twister. Keep our feet down. Twist towards the door. One of our challenges and our Holy Grail is to find that pill that might actually slow down progression of Parkinson's disease.

We have not found that pill. But maybe it's not a pill. Maybe it's our lifestyle. And maybe we've been barking up the wrong tree.

MICHELLE

When you can't walk, and you exercise and you can walk regular and go up and down stairs, it's just the best feeling. I mean it's like the world's opened up again to living your life. Do you like to exercise? No.

I was very active. I was a runner, a ballroom dancer. I hated exercise. I failed gym in college.

Do I like exercising? Not particularly, but I like this form of exercising in a group. I notice a big difference and it's slowed the progression down. It had me decrease slightly in my medications or they work better now as a function of participating in exercise.

It really is a Godsend. This is one of the studies that we've done using magnetic resonance imaging, or MRI, to try to understand what's going on in the brain related to walking. We were doing Parkinson's-we weren't necessarily thinking of doing exercise. And then I saw a study presented at Society for Neuroscience.

It was just a small pilot study of frail older people at risk for falls, and they were either learning to dance tango or they were walking for exercise, and the larger improvements were seen in the people who learned to dance tango.

TEACHER

One, two, three, four. When I saw that study and thought, wow, that's really different, and why would you ever think of doing that? But the more that I thought about it, the more it made sense, especially for people with Parkinson's, because we have difficulty with walking, we have difficulty moving quickly, we have difficulty in situations where they have to multi-task. Oftentimes it's hard for them to move backwards, and all of these things are built into the dance, so you're practicing the things that are hard for you within the context of tango.

So we came back with this idea, okay, we're going to try this with people who have Parkinson disease even though it's never been done. We found 20 people who were willing to take part in our first study and we assigned them to either learn to dance tango or to do a traditional exercise class. When we compared the tango and control groups at baseline, we see they look identical. But then over time the tango group starts to show improvement and less severe movement-related symptoms associated with the disease.

And again at the one year time point they look very different than the people who are not dancing. So this is one of the first studies to show that participating in exercise may actually reduce disease severity and delay progression of the disease. We were super surprised, to be honest. I was like, "Oh!" We checked and double checked.

No, there can't be this much improvement, how is this possible? Drag, and sweep, sweep.

DR EARHART

We don't fully understand why tango, or other forms of exercise, are helpful for people with Parkinson disease, but we do have some ideas.

TEACHER

Up, up, up.

DR. EARHART

There are other studies that show that when somebody makes a movement to a predictable beat like is present in music, it actually increases activity in the basal ganglia, more so than if somebody makes that same movement without that beat as background. So it may be that the musical aspects could be helping people to better utilize the function that they have remaining in the brain in areas affected by Parkinson's. And then a third possibility is that they may be recruiting different areas of the brain and kind of bypassing or taking a detour around the areas impacted by Parkinson's and using other circuits to improve their movement. So when we say that tango and other forms of exercise help, what we mean is that they really reduce the severity of symptoms.

People may be able to walk better. They may have better balance and better ability to move. It may improve quality of life. So it decreases the impact of the disease on the individual.

It certainly does not cure the disease and there's actually nothing currently available that is curative. All of these treatments are designed to reduce the symptoms and make the disease as manageable as possible.

TEACHER

Terry's gonna master the jump rope!

DR. EARHART

When we do head-to-head comparisons of different types of exercise, often the results are very similar, and so I really think the key is to have a variety of opportunities for people to engage in exercise and for those people to find the things that they really enjoy, because that's going to contribute to their participation over the long term. Just find something, even if it's a bike, or whatever. Just get out and move because if you don't move then you're stiff and then it's miserable and then you feel sorry for yourself. It's a mental thing, too.

I mean, if you're feeling bad physically, it's hard for you to feel good mentally, and exercise does something great for both. I wonder if I'm embarrassing my girls when I go to their events and I'm tremoring. You know, I wonder if I'm embarrassing my, my boys because I can't run. They've never given me any indication that they are embarrassed by me.

It's always love. But you know, the mind can play tricks on you, and it can be just a minor little thing and I can perceive it as, you know, they're ashamed of me. I think that was one of the main things Michael J. Fox taught me is that, you know, A, you're gonna have to get over the vanity, and I'm like, "I'm not vain, a vain individual." He goes, "You were an athlete.

"You were playing ball since you were little and "it all of a sudden comes to an end. "Your body's been something you've always been able to "rehab or get a surgery for. "But this is something, not going to be one of those things."

KATRINA

He really is a normal guy. He's a dad. He gets up and takes his girls to school and to their cheerleading practice. He goes to his son's football games.

When you meet him it's, it's hard to tell that because he's six foot nine. He is, he is a giant of a man. So he grew up in Ohio. He started playing basketball in high school.

Turns out he was really good, went to play basketball at Xavier. Brian Grant! Was picked up by the Sacramento Kings, played for 12 years in the NBA before retiring in 2006. Brian Grant able to keep it alive!

Two years later, in 2008, he was diagnosed with Parkinson's. It kind of really helped save me, too, because I was going through so many other things outside of having Parkinson's. You know, retirement, depression, divorce, you know, still trying to be a father. And when this happened, it kind of gave me a focus to where I could, you know, kind of put those things aside and deal with them when I needed to deal with them rather than just stewing on it all day and night.

You know, I'm a believer, so I always said, you know, right when I was going to retire, retire, "Well, okay Lord, but what am I supposed to do now?" And you know, when you ask the Lord something like that, he'll reveal it to you, and he revealed it to me in a big way, and that is, okay, now you have Parkinson's and you need to go help this group of people do this. So I think he was frustrated in the early years. There was limited information on how to live well with the disease. Because we have yet to uncover a drug, a molecule that can potently change the course of Parkinson's we don't have anything that stops the process and we don't have anything that powerfully slows the process of Parkinson's.

Exercise, of all the interventions, really probably has the most evidence for having any disease-modifying effect on Parkinson's. The mission of the Brian Grant Foundation is to help people live better with Parkinson's through exercise, nutrition, and a supportive community. And that is why he shares his story openly and honestly, because to him that's the biggest impact he can make is to say, this is what it means to live with this disease, and here's the ways that we can live better with it. So I have Brian here to help me demonstrate the split kneeling airplane exercise.

Turns out, right here in our backyard we have experts up at the Oregon Health and Science University doing all kinds of research on how you can delay some of the symptoms of Parkinson's through exercise. So it's kind of like a perfect union to bring together the scientists and bring together the athlete and start creating community-based programs. You want to open your body up. You know, Parkinson's is, it's trying to make you do this, right, till you're down.

You know, you want to open up the body. So Parkinson's will take care of this, you know, but you have to take care of this part of it, try to slow it down. Used to love to skateboard. That got rough.

Went skiing and I tried to snowboard, that didn't work. So right now I'm kind of going through a phase of things that I'd love to do but I just can't do them. Brian, like many other Parkinson's patients, they want to continue doing the activities they love. So for example, Brian likes MMA and he works out with an MMA instructor.

JASON

MMA is mixed martial arts. It's a compilation of boxing, kickboxing, wrestling, Brazilian jiu-jitsu. You've got tension on your feet. Don't bring that right foot in so close.

KATRINA

And I think that's where we come in-is to teach anybody who's working in this field how to work with people with Parkinson's. We're just, we're just getting started. You'll see.

BRIAN

And Jason has been in touch with Katrina and he's also researched things on the web to show what things he should definitely push to do and then other things he should back off of.

JASON

Cool. Next time you visit there'll be a six-pack on this guy. Come on let's set a realistic goal here. An eight-pack!

(laughs) I don't want anyone to feel sorry for me. I've led a blessed life and I'm glad that I'm where I'm at in life right now. That's my end game. That's, that's what I want to be able to look myself in the mirror and say that I did, you know, I faced it, took it on, and held my head, I held my head high, with dignity.

The one thing that I don't want to see happening is people just sitting home waiting for the cure because that may not ever come. This is a tricky disease. The medical community did not at first suggest exercise. My doctors did say that it was good for you.

So they didn't really push the fact that, you know, you should do something this aggressive. My general practitioner did, and says to keep going, and that it's making a difference. She has told me that. The medical community jumped on it after they've gotten their clinical trials, but they fully embrace it now.

THERAPIST

Alright, are you ready for the boxing?

PATIENT

Yeah, I need my gloves, don't I?

THERAPIST

One. Two.

DR. HORAK

Well, the nice thing about boxing is that when you hit something, then you have a posture response.

THERAPIST

Left jab, go. Right cross, go. We tried to think of every kind of balance and gait problem they had and design exercises specific for the kind of research that we showed they had a problem in. Behind you, right foot to three.

Big.

DR. HORAK

We developed this agility boot camp for people with Parkinson's based on our many years of research studying balance and gait problems in Parkinson's. We divided the kinds of problems they have into six different types and then developed an exercise program for each problem.

THERAPIST

Let's work on that back-step to six o'clock

PATIENT

I knew you were gonna make me do that again. Historically as a physical therapist we wouldn't see a person with Parkinson's disease till they were in the hospital with a broken hip from falling. Most of the outcome measures in those days ten years ago were very clinical. How fast do you walk with a stopwatch?

Do you feel like your balance is improved? There were not objective measures.

WOMAN

Yeah, we'll have you sit down and we'll put everything on you. Does that feel comfortable or is it too tight?

DR. HORAK

One day a person with Parkinson's disease, Andy Grove, who was the head of Intel for many years, he came to me and said, "Can't you figure out a way to measure balance and walking "and movement problems for people with Parkinson's disease "that doesn't require a fancy laboratory? "Something that could be done by clinicians all "around the world in their clinics? That could be used then for clinical trials."

WOMAN

Does everything feel comfortable? Okay.

DR. HORAK

And so we developed a system with his support that you can measure movement and walking and balance just with little sensors that you put on the body.

WOMAN

Look straight ahead, go!

DR. HORAK

We couldn't measure those things before so we weren't sure which exercise was better. But now we can measure it. And hundreds of people or thousands of people at clinical trials around the world and all the data can be collected in one big database. >WOMAN: Awesome!

So I think it's really revolutionized the way research can happen for exercise.

WOMAN

These are our vibrational units. What we'll do is we'll put this part on your foot and it connects...

Dr. HORAK

This study was focused on freezing of gait, which is a problem some people with Parkinson's have, where they feel their feet are glued to the floor and they can't move and lift them. We developed a prototype system to try to determine whether adding additional sensory information might help them walk and turn. Every time their foot is on the ground, they get what we call vibro-tactile stimulation, we're enhancing their own sensory information to tell their brain when a foot is on the ground. And for some people with Parkinson's disease, this kind of vibro-tactile biofeedback can be very useful and hopefully it can be another tool that people can use to prevent falls and improve their walking.

THERAPIST

Count every other letter of the alphabet while you keep these long strides. Ready? Here we go.

DR. KING

And we in this lab here at OHSU are trying to integrate into our approach to exercise is cognition. We know there's a relationship between cognition and mobility and we see this in the aging population and we see it in Parkinson's as well. So we're trying to integrate cognition into our exercise programs.

PATIENT

W-Y-Z. John, turn around. It's harder than it sounds. I know it is.

We've been talking to the Brian Grant Foundation about what kind of exercise programs they could offer in the community that are evidence-based and could be useful for people with Parkinson's disease.

THERAPIST

So right foot to twelve will be blue.

PATIENT

Blue.

THERAPIST

Right foot to three is?

PATIENT

Green.

DR. HORAK

Why does exercise help and how does exercise help people with Parkinson's? It helps because it improves brain function. It doesn't return the brain to normal. You don't have more dopamine in the system, which is the neurotransmitter that's affected by Parkinson's.

But other neurotransmitters are increased, there's better connections in the brain, and it's used more efficiently with exercise over time.

PATIENT

Well, I did okay in the colors but the balance and the lunges were sub-quality. Everyone knows the day and time that they were actually diagnosed with Parkinson's, and mine was October 21, 2013. And so when I read things, it was eating right, anti-oxidant foods, exercise-and the exercise piece was huge. So I signed up with the Brian Grant Foundation Boot Camp in Portland.

Well, Portland is an hour and 15 minutes for me to drive. So I decided that we needed a class in Albany because I had friends who had Parkinson's also and needed a class. I had four clients that had Parkinson's, and so I started doing some study to help them get the most out of their movements and kind of help with fall prevention. Okay, let's warm up.

And what happened is some of them started talking in their support groups, and Lynn was one of those people, and she was like, "Oh, this is cool. "We've got somebody here locally that might be able to teach classes." I decided that I would approach the Brian Grant Foundation to get someone trained in Albany. So she called us up to say, "Hey, can we bring something down here? Can you help us bring a class to our community?" Lynn communicated with SamFit which then communicated with Brian Grant.

And our boot camp program trains exercise instructors on the best exercises for people living with Parkinson's.

JOANNE

One.

KATRINA

Joanne came up, took that training, and then developed her class.

JOANNE

Side. So what actually happens with Parkinson's is all of their flexor muscles are contracted pretty much all the time. So what happens is them being contracted all the time, they actually are coming into like a fetal position. So what we're trying to do is counter that, work the muscles on the other side of the body so that they then stand up tall.

It also has the mental, where we have to remember what we're supposed to be doing. We have to yell. What side? - Left.

Parkinson's you, everything gets smaller- your voice, your writing, everything gets smaller and smaller, your steps. So big steps, big voice, big everything. Good job. Pretty easy?

We have a basketball hoop, so I was like, why not learn how to dribble? Let's learn how to shoot baskets. Let's make this into a competition so they can compete against one another. Whoo!

I want them to actually have fun and that's kind of my belief as a personal trainer. (cheering) And the basketball part of it is amazing to me. I couldn't dribble. Part of those people really couldn't dribble.

But we all can now, and Paul, one of his arms doesn't work. But he, he can actually make a basket every once in a while. What a lot of times people who have Parkinson's don't want anybody else to know about it. So having like this class and having other people who have Parkinson's, they don't feel alone.

Well, people with Parkinson's need to share for mental health reasons, I think it's good for all of us. And the camaraderie part of it is huge. I never thought I'd be friends with a six foot nine basketball player. It's great having Brian as a friend and as one of my PWPs-People with Parkinson's.

The reason why I think she's so special is that every time I've ever seen her over the past year or two, what she does have is a wonderful, great attitude, and I think that might be the center of everything that someone can do. You can exercise all you want, make your body nice, but if you've got a bad attitude "I don't want to do it" you know, "I did it but it's not helping", then it's not gonna help. If you're diagnosed with Parkinson's, it's not the end of the world. You can live a long life with Parkinson's, and what the doctors usually say is you're not gonna die from Parkinson's, you're gonna die with Parkinson's.

My wife, who is my caregiver and my friend and someone who really motivates me on, to keep going, not to give up. And I think it's up to us to, well to me, to tell people that it's not an old person's disease, that you can get it when you're young, and that we need to find a cure because the medication I take has been around for 50 years. So it's not really new. But that's the gold standard in Parkinson's.

As a matter of fact my husband said to me this morning, "You don't look like you have Parkinson's." And so, I just laughed. I said, "Well, what does that look like?"