I think many people get used to their routines. It’s the same for me. Even though I’m a young person with Parkinson’s disease, I get wrapped up in the rhythm of life. As I go through my days I automatically compensate for my disability and a lot of times I don’t even think about it. Two years post diagnosis, most people who don’t know me probably wouldn’t notice anything unusual about me.
I attribute a large part of my success in adapting to having Parkinson’s to working out regularly. In fact, I workout so regularly and intensely, sometimes I think I work out like a professional athlete (no offense to actual professional athletes intended). From Zoom workouts with fellow Parky’s, to lifting weight in my basement weight room or finding new workout routines on-line, or going for intense bike rides. I’m always looking for new and interesting ways to work out and test my coordination, balance, strength, and overall capabilities. What I and many Parky’s have discovered is that the more we workout the more our Parky symptoms retreat. So, I work out. A lot. In a variety of ways. And that has become a normal part of my day. Because working out is part of why I’ve gradually improved since I was diagnosed 2 years ago. In fact, I’m now doing SO much better than I was 2 years ago that it’s easy to forget what state I was in 2 years ago.
To help you understand why I (and many Parky’s) workout so intensely, it might be helpful to explain how Parkinson’s affect you. When you have Parkinson’s, everything slowly becomes just a bit more difficult. This change happens very gradually over time. I recall thinking in my early 30s that it seemed like I was having to work harder than everyone else just to keep up. Tasks that should have been simple were more physically, cognitively, and emotionally draining that they should have been. The gradual decline in abilities accumulates over time. By the time I was finally diagnosed with YOPD the magnitude of my difficulty was such that walking (more like lurching) a few feet was exhausting. Driving was very difficult, as my right leg couldn’t raise more than a few times without needing to rest. So, I used my right hand to raise and lower that leg and work the gas pedal. I was exhausted and miserable all the time. In short, every day was my own personal hell. This disease strips away your dignity, it isolates you, it slowly steals your will to live. To struggle and fight a losing battle against an unseen, unknown enemy…untold misery. Through medication, diet, and of course exercise I’m doing so much better. Medication and diet are important as they allow you to move and help you feel better, but it is it the exercise that somehow retrains your brain to use your body. Movement becomes smoother, less stiff, and easier overall.
It is the memory of what life was like a few years ago that motivates me to workout with what may seem like unusual passion for someone not earning a living off of being in shape. I never want to go back to that place. Unfortunately, this insidious disease is progressive, meaning that it continues to worsen over time. In time, the medications get less effective. As we get older, our bodies are less able to resist its relentless onslaught. I shudder as I am haunted by the thought that those experiences were a preview of my future. Again…motivation. To live now. And to steadily prepare as best I can. Parkinson’s doesn’t rest, so neither can I.
So, if you have Parkinson’s disease, I encourage you to get moving. Challenge yourself to be the best version of you every single day. “Time waits for no man” holds especially true for those of us waging a war against our own bodies. As this disease slowly, inexorably, turns our own bodies against us. If you don’t have Parkinson’s disease (or any other chronic condition for that matter), learn something from us Parky’s. Don’t take your body for granted. Take care of it. Wonder at its complex and delicate balances. Live everyday to the fullest as none of us can predict what tomorrow brings!