Nearly two weeks ago, Mr. Twitchy and I embarked on a two week trip to Israel with friends. This is the fifth year in a row that we have traveled together and they have seen me at my worst, before starting Sinimet, and at my best. We have reflected on how well all four of us have done on these trips, which often move at a very fast and strenuous pace. We try to fit way too much in to these trips, because basically, we don’t want to miss anything!
We have traveled all over Israel, from the northern border
to the south in Eilat, including a day trip to Petra, Jordan. We jokingly call our free days our “Days at Sea” since last year we took a Panama Canal cruise that had 9, count em, 9 days at sea. Being the type A personality that I am, I dreaded those days at sea. But they turned out to be the best part of the cruise.
Yes, we have enjoyed the few “days at sea”, but the rest of the time we were running around like maniacs, checking to make sure that we didn’t miss a thing and to see which day had the most steps. Last Monday in the Old City of Jerusalem was the winner as it topped 20,000 steps!
But what really made us feel good was the fact that we walked uphill for 1 1/2 mlles yesterday in Petra, without any signs of fatigue, passing much younger people who probably thought that they were in much better shape than us old people. They were huffing and puffing their way up stuggling to keep our pace, and we were just fine.
Which just goes to show you that exercise definitely benefits everyone, no matter what age you are. And for those of us with PD, it really is essential. Without exercise I could not have kept up with the group, nor would I have felt as good as I did. As one of my PD boxing pals said so eloquently: “I am in the best shape I have ever been. And it is all because of Parkinson’s.”
Intense treadmill exercise can be safe for people who have recently been given diagnoses of Parkinson’s disease and may substantially slow the progression of their condition. The New York Times.
A lot has happened in the Parkinson’s world this past year. We have heard a lot about the connection between the gut and Parkinson’s. And faulty genes, mitochondria, stem-cell treatments, ultrasound treatments, repurposing of drugs, and on and on. Each month brings some new theory that could just be the breakthrough we were looking for. A month later, there is yet another new finding that could be the one.
But let’s not forget about exercise. If you have been following me, you know that I exercise a lot. I go to Boxing for PD classes, yoga and still manage to play some tennis. Last week’s big news was a study published in the NY Times about the benefits of intense exercise for PD. There have been a number of studies over the past 10 years that have looked at exercise for PD, with varying outcomes. But this one was apparently the first set up as a clinical trial. For the new study, which was published in JAMA Neurology, the researchers decided to treat exercise as if it were a drug and carefully track the safety and effectiveness of different “doses” of exercise in a formal Phase 2 clinical trial. In the trials, those patients in the high-intensity group had better outcomes. Their findings: “High-intensity treadmill exercise may be feasible and prescribed safely for patients with Parkinson disease.” As someone who emphasizes exercise, this did not surprise me.
About six months ago, Mr. Twitchy and I acquired a Peloton Bike. In case you’ve managed to miss the much-played commercials for Peleton showing a mom exercising on her Peloton Bike in her living room, while her kids play quietly nearby (whoever dreamed this up does not have small children), the Peloton Bike is a Spin Bike for your home. It’s not cheap and there is a monthly fee for “attending” classes (either live or “on demand”) You can log into numerous classes led by cute, young, and way-too-fit instructors, who guide you through a workout while you watch on the big video screen attached to the bike.
Classes range from at 10 minutes to 90 minutes long. The instructor encourages you to move to the beat of the music and to adjust your resistance to increase or decrease the intensity (which simulates biking up and down hills).
This is not a commercial for Peleton. While I have never been a big fan of exercise bikes (or real bikes for that matter), this is fun! And it is some of the most intense exercise I have done. Being competitive by nature, I try to keep up with that cute guy on the screen, and the cadence and resistence calls he makes. Although not always successfull, I can feel myself improving and I have worked my way up to 20 minute classes, frequnetly ready to drop at the end of the session, but stronger for the effort. I never went to the spin classes at the gym. The thought of going to one of those classes in a hot sweaty room with 25 other people was terrifying, so I avoided them. Now, in the privacy and comfort of my own home, I can choose whatever class I want, and quit if I want to, or scream at the instructor, or at myself, when I can’t keep up. The best part, is that I am getting the benefits of intense exercise that the experts now say will keep me going and going and going…….
WARNING: When starting any form of strenuous exercise, please consult your doctor first. This is NO exception. In fact, you may want supervision by a trainer or Physical Therapist until you learn what you can do on the Peleton or any other resistance training bike. It is much too easy to overdo it, which could lead to other problems.
I first met Vince Hendrickson several years ago in a Rock Steady Boxing class (now StoPD). It was always fun to be with Vince in class. He was always moving faster than everyone else, punching the bag with glee. He had a great sense of humor and inspired the rest of us to just have fun while we were there.
But sometime in the last few years, things started changing for Vince. We could see that he was struggling more and more in class. And freezing when trying to run. I sat down with him last week to talk to him about his experience with Parkinson’s.
Vince was finally diagnosed in 2000, after having symptoms for several years. Like most people with PD, it took a couple of years and testing for several other diseases, such as Lyme Disease and Fibromyalgia, before he was finally diagnosed with PD. His symptoms did not begin with a tremor, but instead with cramping and pain in his joints. His doctor started him on Sinemet (Carbidopa/Levodopa) about 1 ½ years after his diagnosis.
Unfortunately Sinemet was not very effective for him.
About 5 years ago, Vince underwent DBS (Deep Brain Stimulation) surgery, which worked very well for him. But a second DBS surgery 3 years ago was not so successful. It turned out that the DBS unit was defective and had to be replaced. So Vince had yet another DBS surgery. Still no improvement. Another problem arose after the second DBS – Freezing. Suddenly Vince would find his feet stuck to the floor. He has no problem walking up stairs, but when he gets to a flat surface, his feet just won’t move. So how does he deal with this? Vince took a “Big and Loud” course, which has helped with the freezing. He says the class helped him to retrain his mind to walk again. He has learned how to will himself to move. Of course, it becomes much more difficult to do that when he is tired. But I noticed at the end of boxing class that he was actually walking better. Vince agreed, but said that unfortunately the benefit of exercise wears off too quickly.
He has learned how to will himself to move.
Soon after his diagnosis, Vince had read that exercise was best thing for him to do to combat Parkinson’s. Before he found Boxing classes, Vince practiced Tai Chi and rode his bike. He was determined to live an active life-style. Things just didn’t work out the way he had hoped they would. He has had to give up some of the exercises he was doing since his second DBS surgery.
Vince worked for about a year after his diagnosis. He eventually had to apply for disability because it became too difficult to continue his job as a printing press operator. He is fortunate that he has his wife as his caregiver. She goes to all of his appointments with him, advocates for him and is very supportive. They still travel as much as they can. Vince told me that for the stress of airports, they purchased what he called a “Personal Carrier Chair.” The chair, made by DeVilbiss, is a Folding Transport Chair , which is essentially a folding chair with wheels that weighs only 19 pounds. If Vince is having trouble walking, all they have to do is open the chair and his wife can push him around. This chair has made it possible for him to travel and do many of the things that he wants to do.
Vince never ceases to amaze all of us in Boxing class. He does whatever he can, and modifies if necessary. Instead of running or walking, he will march in place, which he has no problem doing. He can do just about anything in class that does not involve walking. And he does it with determination and a smile on his face. Thank you, Vince, for inspiring all of us.
By now, you know that I am a big fan of exercise. It has been a daily part of my life since I was young. Since my diagnosis with Parkinson’s, it has become not just something I enjoy, but something that I must do to keep on moving. I am sure that many of you feel that way as well. But for those of you who have never embarked on an exercise program, you need to speak to your Movement Disorders Specialist about how to begin. You may think that you cannot exercise because of limited movement or pain caused by PD. That was the prevailing theory 50 years ago. Today, however, we know that lack of exercise only makes things worse. You know the old adage: use it or lose it.
Scientists, such as Dr. Jay Alberts from the Cleveland Clinic Lerner Research Institute, have shown the benefits of forced exercise on PD. As a result, many physical therapists and trainers work with PD patients to improve motor function using forced exercise.
We have been told that Neuroplasticity is crucial to either change or delay the progression of PD. And exercise is one of those activities that allows the brain to change. Exercise enables more of the dopamine in the brain to be used. It is important to exercise outside of your comfort zone. It increases blood flow to the brain and allows the neuroplasticity to occur. Goal directed exercise allows for these changes in the brain to occur. It improves the circuitry and improves the connection of the basal ganglia to the cortex.
#1 reason for exercise: potential to slow the progression of PD through neuroplasticiy
Find exercise that you love – otherwise you won’t do it
Goal-directed motor skill training through acquisition of skills
Learning a skill is hard, practice drives skill aquisition
Getting feedback during exercise – allows us to challenge ourselves
and make ourselves aware ofour movements. What used to be automatic now requires us to think about what we are doing. It is also motivational
Tom McLaughlin, a personal trainer whose wife, Linda, has PD, has been working on a training program to improve PD symptoms. He says that the brain is a learning machine. Because of dopamine depletion, we have cut off the connection between the brain and our muscles. The brain doesn’t know the connection is gone, so you have to go back and have your cognitive brain focus on motor function and motor skills. You have to overcome the “defect” in the brain through exercise.
Tom’s exercise program tries to activate all of the muscles, and challenge them, in order to improve neuroplasticity in the brain. There are 16 steps to his program with the goal to work on 8 muscular functions on the top half of the body and 8 on the bottom. Those steps include working with each muscle group to move out to the side, the middle, forward and back, and to the 4 corners. Focusing on these 16 steps will help the brain reconnect with the body to return to more normal function.
Both Allie and Tom stressed the words Focus and Learning. To improve your PD symptoms, you must focus on your movements to make them become automatic again, and you must learn new skills to increase the neuroplasticity in your brain.
You want to try something new, but it just seems too difficult. You go to your first yoga class and you are lost. Everyone else seems to know what they are doing, but you are clueless. You keep going, hoping that you will figure it out. And then, one day, you are moving through the poses like everyone else. Your body seems to know what to do. You wake up one morning to discover that you can get out of bed much easier. In addition, your gait has improved, your balance is better, and some of your other symptoms have improved. How did that happen?
Malcolm Gladwell, in his book Outliers: The Story of Success quotes neurologist Daniel Levitin, who said “that 10,000 hours of practice is required to master a level of mastery with being a world-class expert – in anything”. He goes on to say: “It seems that it takes the brain this long to assimilate all that it needs to know to achieve true mastery.” On average, it takes 10 years to reach 10,000 hours. Some examples he gives are The Beatles, concert musicians and hockey players. Their commitment to practice many more hours than others gives them the skills they need to be the best of their profession.
So how does that apply to Parkinson’s Disease? We certainly don’t have the luxury of doing something for 10,000 hours. But if we keep working at a task, we should improve. Right? That is the theory behind LSVT, Rock Steady Boxing, Dancing for PD, Yoga and all of the other PD exercise programs out there. We are told to learn new things. It is good for the brain. It can be difficult to learn a new skill, especially if you have a tremor and stiffness. You start out slowly. But it should start getting easier as your muscles and your brain adapt. And gradually you will work harder and better, without even trying. If you stick with it, you should start noticing positive changes. You have practiced your voice exercises diligently and at some point, you discover that no one is complaining that they can’t hear you. You have worked hard enough and long enough to be able to project your voice without even trying. It now comes naturally to you.
Unfortunately, many Parkie’s are in a slow downward spiral as their symptoms continue to worsen. They try everything they can to slow down the progression, but don’t put in enough time to “master” a skill. I wonder what would happen to Parkie’s if they danced or boxed often enough to reach 1000 hours a year. Would they begin to master the moves? And how would that translate into improvement of their PD?
These are questions for the researchers out there. I don’t know the answers. But I do know that when I am engaged in an activity that I have been practicing often, my PD symptoms seem to improve. I may not have mastered the activity, but it is getting easier over time. And that definitely makes my life better.