Power Over Parkinson's 2

I have severe, limited movement uh when I'm off. Right now, my meds are on so what you're seeing is the- the other side of Parkinson's which is the dyskinesia, the weird movements, the Michael J. Fox looking movements, right? I can settle those down and deep breathe and calm my mind and focus and slow them way down.

Right. But I can't talk to you very well that way. I will be more Parkinson and be more interactive but those symptoms I'm learning to deal with and that is the beauty of- of the disease in that I'm able to do that. I'm able to figure that stuff out.

It's a movement disorder and so my arms and legs and coordination is slow and more difficult. That's frustrating. Like I tried to change a light bulb a couple of months ago, I'm like, "Why is this hard to do?" My handwriting started changing, my voice started changing and my foot started freezing. I have the gait problem, cannot walk very well at all and that puts me in a wheelchair at home.

Nancy really didn't think that the loss of volume in her voice was a symptom of Parkinson's. She thought it was a symptom of me needing a hearing aid. (Laughing) I think that you know it's not a death sentence, it's a- a way of life needs to be changed a bit, but by and large you can make it work for you.

DR. de MARCAIDA

Parkinson's at this time is a neurodegenerative disorder with no cure. It's our holy grail, find a cure. That would be tremendous. and no known allergies to medications...

Integrative medicine or what has also been called complementary and alternative medicine is something that patients are seeking out more and more frequently. In fact, in the United States, we estimate that about 40 to 60% of patients with Parkinson's disease are engaging in some form of integrative medicine or complementary alterative medicine on their own. We always come with questions and what's next in the pipeline of research and helping us. Listening up whole body...

MICHELE

We have definitely learned in 10 years that we have to be an advocate for ourselves, research, learn as much as we can so that when we come, we can ask these questions. Parkinson's patients and their caregivers are very educated, very outgoing, all of these conditions that are chronic, prolonged and come with the potentially slow, deteriorating process, they're very motivated to ask, um what can we do now, what can we do in the future to stabilize symptoms, to stop decline. So in additional to conventional therapies, medications, integrative medicine is important to the Parkinson's patient.

TEACHER

Just allow yourself to let go of the day so far.

DR. LEE

The whole mind, body, approach. It is a new and developing branch of medicine that incorporates things like meditation and stress reduction in addition to conventional neurology. We're also viewing the individual as a interconnected ecosystem that all parts, including the mind and emotions, are related to the body. So I think it's a great benefit for patients to get involved in integrative medicine and that being physical therapy and the more physical, nonconventional therapies such as yoga, tai chi, meditation, is helpful for stress reduction.

Here at the Movement Disorder Center, I get a chance to work with a lot of really special people, special because they're overcoming a lot in their personal lives. A lot of the symptoms are life altering and just to see them struggle through that and to be a part of that struggle, for me personally, is- is a privileged. I walked out of here feeling fine, thinking nice, wanted to go to the bakery across the way and thought I'd drive over and thought I can walk over. I thought, good that would be good for me.

You remember? Yeah I remember yeah. And I got halfway across the street and I saw somebody running and so I picked it up and I ran it the rest of the way across the street without even thinking and I haven't run in years. Totally an amazing moment for me.

I'm just happy that we were able to help you run across the street. Yeah me too. Our goal is really to improve quality of life by focusing on the things that we know we can impact so things like stress, anxiety, insomnia, digestion. And certainly doing scalp acupuncture to help with the overall motor movement.

DR. de MARCAIDA

We are conventional medicine. Saying that either complementary or alternative is outside of the realm of conventional medicine did not quite sit well with me and with I'm sure a lot of providers who feel that this is a modality of treatment that we really should be looking at.

Dr. SECOR

This morning we had our monthly clinical council meeting. So in that clinical council, you have many of the sub specialists, you have neurologists, you have occupational therapy, you have physical therapy, you have integrative medicine represented. Our goal is to try to reduce the silos which health care is plagued with, bring us into one group. We put the patient in the center and ask, "Is this patient getting the appropriate care from all the modalities?" Some of our opportunities, we don't understand optimal dose.

What should the dose of tai chi be? Should it be twice a week for 12 weeks, should it be ongoing? We need to understand dose, frequency, intensity, duration. So at Hartford, we document in the patient record so we have an electronic medical record, when I see patients or our team sees patients, we're trying to be transparent with what we're doing.

It's 40 to 60% of Americans with Parkinson's disease going out there, looking for alternative treatments because they do want a cure. They do want something better. They want to- to find something that will just make them feel whole again. And I understand that.

But that 40 to 60% of people with Parkinson's disease going out there without supervision of a medical professional is irresponsible. And I think we need to take it on. This modality of treatment does not lend itself to the same protocol or the same scientific design for clinical trials that we are used to in conventional medicine. There is studies that show that even randomized clinical trials has- have a hard time being replicated.

The same medication in a different culture or part of our country may not have the- the same outcome. What does that say about the randomized clinical trial? There's no one answer, but as doctors, if we worked closely with our patients and view all the different aspects that might be contributing to their disease, we'll start to get insights. The studies that have been done have been very small, so we're talking about probably 10, 15 patients at max.

And because they're not always processed the same way everywhere, I can't, in good faith, say to the patients, you know it's a suitable replacement. So we need to certainly collect the evidence but I don't think that trying to box in integrative medicine practices in the same way that we try to conduct clinical trials in conventional medicine is appropriate. The placebo effect is real. If all it is is a placebo effect, then absolutely right, there is no role for that particular treatment in medicine.

But I believe and I think the studies that are out there show that it does go beyond a placebo effect. Particularly for the modalities that have been studied. I think if it's not harmful and it's not cost prohibitive and it makes you feel better, I say go for it. I think everyone needs to know that each Parkinson's patient is different.

We take tango classes. I started with the tai chi then add other exercise interval movements. I've done the massage. I do exercise four times a week.

We're trying some essential oils and the last few weeks has been much better. I'm doing tai chi now. I- I love it. I didn't know I would love it, but- but I started filming it.

I was like that makes a lot of sense for Parkys. (Laughs) Teaching me how to move slow and balance, wow. I have prayer support groups at church and through bible study fellowship, we have 50 leaders who meet on Saturdays and we pray for each other. And I can just really tell it makes a difference.

Something's working because I'm a lot better than I used to be. I was diagnosed with Parkinson's about three years ago. Well (laughs) everything bothers me about Parkinson's. I like the go to the theater a lot and when I get over to Broadway, I think, "Oh my God all those people," and that's- that's a Parkinson's thing, having people coming at you and getting nervous.

Barbara is coming to Tournesol for vibroacoustics to help with her symptoms of Parkinson's and what I hope to see over her treatment is that we address the specific symptoms that are most frustrating for her.

BARBARA

I went two and a half years without taking medicine. I just started taking the dopamine about two months ago.

CAREY

Over here to the right. You're gonna lay on your back when you're ready. You lay on your back with your head on that end of the table. And you'll- you'll start to feel mild vibrations and the soothing music we'll play throughout-

BARBARA

I thought I was getting a tremor and I was getting a little nervous. I don't feel I've changed that much, being on it now. And I still have the tremor but I do believe in alternative medicines. I was volunteering to go on any type of a program you know to test Parkinson's.

I've also gone to acupuncture. I try to go to things that there are people there that have Parkinson's. My doctor I see every three months, which is nothing. People that have Parkinson's I see a lot.

CAREY

We're gonna run frequencies that support Parkinson's. I started Tournesol because I wanted to create a home for healing. I believed that there should be something more that focused on an individual's specific needs for healing. I believed that we should look at food.

We should look at sleep. We should look at relationships. We should look at emotional awareness and breathing and moving and National Institutes of Health has been studying and reporting on the efficacy of using vibroacoustics and physical and emotional issues for 30 years. And a big chunk of the research has to do with Parkinson's.

And I thought, how fabulous. Vibroacoustics is a science-based therapy that works on resonant frequencies. So what does that mean? Our cells are always vibrating.

When our cells are vibrating between 30 and 120 hertz, we're pretty asymptomatic. Our physical and emotional immune systems are strong. When our cells are vibrating outside of that range, we are symptomatic. Anything from you know mild annoyance and- and overtired to chronic disease and pain.

I'm going to bring up the volume a little bit. So what we do is we transduce the healthy vibration of cells into the body through a treatment table and the person who's lying on the table, their cells will take on that healthy behavior. Blood pressure is reduced, heart rate is reduced, circulation speeds up so you're getting oxygenated blood, so the speed of healing increases. I see vibroacoustics for Parkinson's as a lifestyle support choice.

Some people do acupuncture. Some people do yoga. Some people do Reiki. And so vibroacoustics is one option for something that you can include in your life to help support feeling better all the time.

I think the fatigue part bothers me the most. I rely heavily on the medications, primarily for some of the movement and tremor issues. I do try building an exercise program and when I maintain that, I do get some relief from that too. The one thing that I would speak to that I've found very positive was- was tai chi.

And if somebody told me a long time ago that I was gonna be a tai chi enthusiast, I would say "you're crazy man". One hand at a time, um let me see you tap each of your fingers. There's evidence that shows that the patient provider relationship is healing. That spending time with a patient can stimulate the healing process.

That somebody cares, that there's some accountability. They know they want to improve. Before we get into it, I wanna see how you're doing right now. Sure.

I'm starting to get a little bit of a breathing item right now, just a- and some tightness of the chest. I'm gonna clip a sensor to your left ear, okay? This is just monitoring your pulse, detects the up and down of the pulse wave. The graph that is showing up is actually the beat to beat variability.

Yours doesn't quite look so regular right now, but you can train it to look more normal. The first thing that I'd like to do with you today is just practice some slow, gentle breathing. There's two steps for this exercise. Use your attention to think about your heart and that allows us to feel like we're breathing into the heart by keeping our heart in our attention.

Sure. Okay. The second step will be to generate a positive feeling. So think of something that brings you joy or happiness.

I wanna show you what we are looking at here on the screen. So just towards the end, we were getting a sine wave like this. I think that as your body settled into- Yeah. -into the breathing, we were starting to get this- this smooth up and down pattern.

The purpose of this is to actually train over time. Sure. I'm gonna give you a tool. It will be an app that you can download.

It will record each of your sessions, uh, it will record how frequently you do it. It's not gonna happen immediately but you'll find this rhythm of breathing and you'll find that it's responding and that's when you know you're on the right direction. And so just by seeing it and seeing what the- the change is, the body and the brain will start to learn that this is what needs to be done and that's how biofeedback works. Mm-hmm It's a lot to- to digest in a short period of time, at least for me, and why I say that it's because I found that by practicing these exercises, I did get what I call an immediate calming.

Which is very positive. I'm not sure what full symptom relief from the Parkinson's I'll be able to get in a long term basis. Well this is the first time that we are meeting again since starting it so can't say that I have uh seen any differences yet. There is a ramp up time to learning to meditate.

In some sense, you need a little bit of faith, of determination, but it's been practiced for thousands of years and the results could be beneficial. I got caught up in trying to make sure my heart was working along with my breathing, along with my mind thought process and I think that threw off the actual intentions of getting calm. But when I went into my little zone, so to speak, I could feel the calmness and whether that's meditation or uh brain, heart, lung working together, it felt good and uh I can call upon that in that kind of setting, to get normalized for the moment. And I hope that I can do that more on the beck and call in the future.

With Barbara um the two things that struck me from the very beginning were that we wanted to work on sleep and also some muscle spasms that would happen specifically in the middle of the night and- I forgot, you know I forgot to -, I haven't had a muscle spasm since I've been coming. It just- I forgot all about them. I would get them in the leg. I have not had one muscle- I can't believe it, now I really believe.

(laughing) I, it just, it- when you mentioned muscle spasms, I thought huh? I haven't had them. What muscle spasms? (Laughs) The tremors have definitely slowed down.

Yeah. I have them less often. I went yesterday to Broadway to pick up tickets for a show and the crowds didn't bother me and they were there, they were coming at me and I felt, I didn't feel the stress from them. I think the therapy has done a lot.

I feel better, I'm less stressed. I've been very-I'm not tired, I just keep going. I think that the medical community wants access to more techniques and more skills. Doctors and therapists are reaching for more.

They recognize that their patients want more. If we are not treating a patient for who they are, how they manifest stress, what pushes their buttons, what's going on in their relationships, what foods irritate their digestive system, we are doing harm. We're doing disservice. I eat a lot more vegetables than I used to.

Since last October, I've lost 60 pounds, trying to make myself so that if Tom has to help me up off after I fa- fall that he won't hurt himself. That's the one I didn't wanna mention. I didn't realize Parkinson's gives you constipation. There were a number of people who said, "Oh yeah, big time." People buy some medicine from the health food store and things like that and when you go and read about it, I feel like instead if I eat my certain food and certain vegetables, I get enough of it.

My wife and I have a very healthy diet already. We're a low fat, low sugar, low salt, uh very low red meat. We're vegans, proud of it. I pretty much eat small portions of anything that I want to taste at that moment.

Take the advantage of the movement you have now and live life. Don't be afraid to eat things. Don't be afraid to drink things but understand the consequences of those decisions and enjoy life. It's never too early to start eating healthier and it's never too late to start eating healthier to improve your chances of a long, healthy, life.

There are case reports published in peer review medical literature of improvements in Parkinsonism by dietary changes alone. Broadly, the best nutrition practices for someone with Parkinson's disease would be a protein redistributed plant based diet with caffeine and bell peppers. The single food most associated with the development of Parkinson's are dairy products. In fact, most of these prospective studies have found a link between the consumption of dairy products and Parkinson's.

There are some studies that have shown that dairy is not the best. Not yogurt, yogurt's okay. There's a lot of interest now in the microbiome for Parkinson's. And things that produce a healthy guts with the good microbes are your fruits and your vegetables.

There's been randomized controlled trials of caffeine in terms of improving symptoms of Parkinson's so two cups of coffee worth of caffeine actually improves symptoms compared to placebo so I'd encourage people to get it from natural sources probably the healthiest which is green tea. Caffeine in epidemiologic studies has been shown to be a protective factor against Parkinson's so people who do not have Parkinson's, if they have daily caffeine intake, that meaning one to three cups a day, has been shown that there's a reduced risk of developing Parkinson's. Now if that translates to patients who already have Parkinson's is still a little unclear. However, the studies for people without Parkinson's and the risk reduction with caffeine is very clear.

We still don't really know a causation for that. All we know is that there is an association and um this still needs to be worked out. And also nicotine is protective against Parkinson's for whatever reason. We still haven't worked that out either.

So no one should be smoking but one may be able to get the benefits without the risks by choosing healthy vegetables. Where does nicotine come from? Comes from tobacco plant which is part of the nightshade vegetable family. And so is there nicotine in eggplants and tomatoes and potatoes?

Yes but mostly in bell peppers and there are indeed population studies show that people that eat more bell peppers, non smokers eat more bell peppers, appear to have lower rates of Parkinson's disease. High protein diets actually block at the blood brain barrier the transport of the precursor amino acid that produces L-DOPA which decreases symptoms and so that's why there's this encouragement to eat lower protein diets and if you are going to have a lot of protein, only to do it at night so by the time the effect hits you, hopefully you're sleeping and so you won't suffer the side effects. There's an epidemic of constipation throughout the country, I mean, but certainly in Parkinsonism. Fiber is found concentrated only in once place and that's whole plant foods.

So we're talking... Basically real food that grows out of the ground, these are our healthiest choices. If you're suffering from a chronic disease, then you want everything else to be going right, everything else has to be fine tuned for health to better able to withstand the disease and withstand the treatments. In terms of the gut brain that's sort an, a very interesting scenario because what's come first?

Did it start in the brain or did it start in the gut. And there are a lot of centers that are very much interested in looking at the same protein pathology in the gut and following those patients long-term to see if they actually develop motor symptoms of Parkinson's because we still diagnose Parkinson's based on the motor symptoms but we know that it's more than just a motor disease. It's a non-motor disease as well. If you're diagnosed with Parkinson's disease, you find a good doctor, you follow their advice and then the part for which you have control is your diet and lifestyle.

Sleep, exercise and healthy diet centered around the healthiest foods out there. Whole plant foods. My younger one was living with me for a few months so after the exercise class, I go home and I say, "Rohan, I'm tired." "Mom push yourself, push it through, push it through." That rings in my ear. I have to push it through this.

In more advanced Parkinson's, there's advanced treatments. So for example, one lady said she's having electronic brain stimulation and it's working really well for her. She was probably 10 years advanced and, so that's something that I know is available when I get to that stage or they'll be new things. There's a lot of things out there coming down the line right now and I would- I would try anything that's been tested you know, I'm kind of desperate.

I really would like to get back to walking, miss it. All of us have a vested interest in figuring this thing out and we're going to figure it out so my word to the- my fellow Parkys is let us work for you because I don't have anything else but skin in this game and I- I will keep trying to work on it.

PRODUCER

When were you diagnosed with Parkinson's? About a year and a half ago. Actually 10 years ago, January. I was diagnosed four years ago but I think I've had it for about 10 years.

I've had Parkinson's for 22 years. Many of the uh patient driven organizations such as APDA and Parkinson's Foundation and the Michael J. Fox Foundation have on their websites referrals for support groups and so I would recommend hitting those sites and knocking on the door and calling. I can't hear everybody's voice.

I love the APDA. I mean I'd be like a fish out of water without all the wonderful help I have here. Thank you both. That's pretty amazing the doctor patient relationship.

And- and you get what you get. Thank you so much. Yeah It was an honor to have been able to interview you. Thank you.

Been a pleasure being here with you.