By Margaret Tuchman, President of The Parkinson Alliance
The importance of exercise being an important part of healthy living is not a new concept in our Parkinson’s disease (PD) community. While there is research supporting the importance of exercise for individuals with PD, what is less known is the patient’s perspective.
So I had the idea for The Parkinson Alliance’s Patient Survey Program, to find out more about exercise from the “patient’s perspective,” including — factors related to attitude and knowledge about exercise and PD, types of exercises in which individuals with PD engage, perceived benefit of exercise, and perceived barriers to exercise.
The results of the survey entitled Exercise & Parkinson’s Disease With and Without DBS: A Closer Look from the Patient’s Perspective are available for download on our website at dbs4pd.org. The study included 1,500 participants with PD; 394 participants who underwent Deep Brain Stimulation (DBS) and 1,106 individuals without DBS. Results revealed that while most people with PD believe that exercise is important, barriers limit participation. Based on the data gathered, report includes general recommendations.
For me, the most important take-away from our Exercise Survey is that any type of exercise (with your doctor’s approval) is beneficial to people with Parkinson’s.
And similar to what the study found, I also know that people living with Parkinson’s have issues that can put up barriers to exercise. For example, in addition to my limitations caused by Parkinson’s disease, I had a surgery for a frozen shoulder. After surgery I learned that my rotator cuff cannot be corrected. I am therefore at the mercy of both my PD cycles and the barometric pressure changes in the weather.
So how do I overcome the barriers?
Just about when I am ready to give up, something happens in my life that I can grab onto and motivate myself to keep going. The last two years I started to study yoga again. I found a teacher willing to work with my physical limitations and being house-bound. He taught me better breathing techniques and how to accommodate my body and do the best positions I can achieve on any given day. I can now complete six or more Sun Salutations in a row with relative ease. I do chair yoga, and the Sun Salutation is a gentle version my teacher designed for me. I am happy to share it with you below and hope it motivates you.
I hope that you give this exercise a try and let me know what you think. I also hope that you check out our survey on exercise as it conveys important practical recommendations related to exercising as it relates to Parkinson’s and overcoming barriers.
Our Findings on Exercise in Parkinson’s Disease With and Without DBS.
Please share with me what types of exercise you do and what motivates you to keep going. I look forward to hearing from you.
I have a very dear friend who has Parkinsons and he will be very interested in this. He finds his opportunities for exercise quite limited these days and chair Yoga will be ideal for him. Thank you.
Stanley, thank you for taking the time to comment. I hope your friend finds the video useful. Please check back as we have more exercise suggestions planned for future posts.
I have had a PD diagnosis since 1999 at age 39. At my current age, 56, I think I am getting close to having my “YOPD” status rescinded by the authorities.
I medicated my way through the first umpty-bump years and did alright, except for a horrendous five year Mirapex-induced OCD episode that almost ruined my marriage. I made two winter climbs of Mt. Washington in NH with my brothers. A few years after that escapade I climbed Half Dome in Yosemite National Park, and 5 years ago I climbed Mt. Kenya (at,17057 ft it’s the second highest mountain in Africa).
I wasn’t particularly in any shape to make these treks, I simply operated on will power and an an irrational dissociation from fear. I had put on 20 pounds and was losing upper body muscle bass. The upper body issue was important because I was falling more frequent;y and having considerable difficulty getting back on my feet (I once wound up falling into a laundry basket. Man are they ever hard to get out of!!!)
But in December 2014 I decided that I wanted to be able to exercise more cheaply and conveniently. Making trips to New Hampshire, Yosemite, and Kenya wasn’t getting any more practical and it wasn’t contributing to my health because the climbs were too far apart for there to be an accumulative effect. So I joined Planet Fitness for $10 a month. Pretty cheap, and 10 minutes from home.
But I didn’t want to be there.
PF worked to give me motivation to get my tail moving and to think about overall fitness. But I found it lacking in terns of being compatible with things that motivated me. My allegiance to the gym waned. The only running I could do was on a treadmill and that is one of the most un-riveting things I can think of doing. Running so hard, always trying to maintain a slightly faster pace than the 70 year old man on my right or the 24 year old stud on my left.
In fact, I didn’t know why I was running. I didn’t even enjoy running. Those endorphins that everyone bragged about “kicking in” never did. Ever. All I felt was exhaustion.
Then, one day I was browsing through the APP Store and stumbled on something called RUN 5K (a regimen to get you from the couch to a 5K Run. So I downloaded it and haven’t looked back – except in self-adoration. I have been able to run 12 miles a week and now I don’t have to stop every 3 minutes to catch my breath for 5 minutes. The APP set up a very reasonable set of expectations for me, and provided encouragement that made me believe that I might finish a 5K race some day.
I haven’t run that 5K yet, because now I’m interleaving weight training days using another app called Fitivity. This is a flexibility app that shows in video clips all kinds of workouts for flexibility and strength. I have lost a fair (or unfair) amount of upper-body strength in the past 17 years, and this is helping to bring it back a little.
The point is, though, that this is something I am interested in. I think having an app and some music playing while you work out is valuable in helping you focus on what YOU are doing and not on what anybody else is doing. And distance and rate timing Apps abound on the internet.
Furthermore, running has become much more enjoyable because I am a-symptomatic when I run, and I am under no self-applied pressure to compete with other runners/joggers. In addition I find that jogging is something that I can do by throwing on some gym shorts, a wrinkled T-shirt, and some dirty old sneakers and do whenever I FEEL like it). No artificial regimen.
It’ll take me a new more years to get up to the half marathon pace, but I am not built for distance. I remembering that I am grateful just to be out there and moving around at all
Go exercise…. do something, do anything! Enjoy it and you’ll KEEP IT UP!
Tom, thank you for this terrific comment! This is exactly the type of dialog Margaret hoped would result from the post. We feel so strongly about the importance of exercise, and our hope is that your enthusiasm will help spark others with PD to, as you say, “Go exercise … do something, do anything!”
We have an annual 5K in the Princeton, NJ area scheduled in late September; and, in two weeks we will be participating in the LA Marathon’s Big 5K. If you are interested, we would be happy to provide you with more information. Please stay in touch! Again, thanks for sharing!