Forced intensive exercise changed my life with Parkinson’s for the better.
When I was first diagnosed in early 2011, I was not told much about how to live with the disease, let alone how to live well with it. I was told exercise was good, but not what kinds. And I wasn’t told just how much difference exercise could really make.
I bought a Parkinson’s exercise DVD, and it taught me a few basic exercises I could do on the floor and with chairs. It helped when I was feeling stiff, but it certainly didn’t challenge me. When I went to a physical therapist to deal with the stiffness in all of my muscles and the challenges I had completing simple daily tasks, I was surprised to see how much my mobility had declined.
My physical therapist (PT) checked my balance by having me walk a straight line, going heel-to-toe. I couldn’t do it. She put a safety belt around my waist to make sure I wouldn’t fall. My walk was bad because my right arm wouldn’t swing, and my right side was really tight. She taught me to walk like I was marching while forcing my right arm to swing. It was amazing. It looked funny, but it helped me work out some of the problems and walk more smoothly. I remember being excited to show the “marching” walk to my movement disorder specialist. She was very impressed.
A couple of years later, I found a physical therapist who did pool therapy and that helped a lot. In the water, I could move muscles that I couldn’t move well on land. Soon after that, we bought a Costco pool for the backyard, and I was in there three times a day for about a half hour each time, just doing exercises that were too difficult for me to do on land. Being in the water was my “pain-free” part of the day. Out of the water was another story. I had trouble moving and more often than not, I needed a cane to get around safely. My wife had to help me in and out of bed. Couple my lack of mobility with my increasing loss of independence and it felt like a very dark time.
Then I met Dr. Nina Routon. She gave me my life back.
During my first physical therapy session with her, she asked me to do a sit-to-stand. This is when you go from a sitting position to standing without using any type of assistance. I was able to do a few of them. They weren’t pretty. At the end of four months with Dr. Routon, I could do 100 sit-to-stands in a one-hour session combined with many other physical exercises.
Dr. Routon encouraged me to do exercises that would challenge my deficits and benefit me. She didn’t have a preset set of “Parkinson’s exercises.” She just assessed what I could do and what I needed to do and then she pushed me. She pushed hard. It was strenuous. Fortunately, I come from a strong and competitive family so I was well versed in having to go to my edge. When I came upon a challenge in my PT session that I thought should be easy, I pushed back hard, no matter how much I struggled.
Tears were a frequent companion during my sessions, but I was committed and over time I took great pride in being able to achieve success. I loved feeling stronger and I became “addicted” to challenging myself physically and mentally.
As a high school teacher, I used to be really good with computers and I used to train teachers on how to use technology in the classroom. Technology is now very difficult for me; however, rather than lament over the loss, I find new challenges.
Now I ride a Peloton bike at least five times a week. In the summer, I ride my recumbent trike outside almost every day. I do aqua therapy every day in my backyard pool. I do physical therapy twice a week to work on loosening muscles that are tight from dystonia. I also do work in the house and in the yard throughout the year.
So, exercise helps me keep my body going and when it’s also a workout that challenges my mind, it helps to restore what my brain is losing from Parkinson’s. I still have a heavy regimen of medicines: 25 pills a day and a daily patch. One moment I move like a normal person and an hour later I need help moving down the hall or getting into a chair. The medications don’t treat Parkinson’s; they treat the symptoms. They attempt to replace what the brain no longer produces. Exercising does that also. That is why challenging my body every day is a no-brainer. I can’t imagine where my Parkinson’s would be without it.
Want to help move the needle forward on research involving exercise?
Exercise is a huge part of living well with Parkinson’s. And we’re always investigating the types of activities and exercise you can do to improve your daily life and maintain your mobility. By making a donation to our research fund, you allow us to continue to work with innovators and experts in this field to identify specific and meaningful gaps in knowledge and produce new proven methods and tools for helping people live well with Parkinson’s. Support our Quality of Life Research Fund here.