You can’t just fluidly wander any more.
The shuffling / freezing and balance-related falling phenomena of Parkinson’s Disease (PD) is something that won’t go away. PD is progressive. As the clock turns, the symptoms worsen. The one thing that has been found (so far) to help SLOW the progression and to mediate between body and disease is strenuous exercise.
I’m in my 25th year of Parkinson’s Disease. I’ve lived maybe ten years beyond what I was told when initially diagnosed. And I’m not folding my hand yet. No way.
When I began boxing, four years ago (is that right? I boxed for nearly two years before Covid hit. Boxing was intense … twenty PD people and their support (usually spouses) hitting boxing bags ( not each other, at least not intentionally). I enjoyed hitting the bags hard — the hard hits were like therapeutic bursts of energy. One day one of the coaches noticed I was having problems with my footwork. Well, we all had footwork issuess, but he keyed in on me.
“You have to be very intentional.” I knew he was right. I had to think, okay, I’m going to step “here” and step “there” and then swing. Or I’ll step in, duck out, and then step in and hit. I started planning my steps. I began doing better. I would still fall down occasionally (well, several times) at each practice (we practiced three days a week, two hours at a time. I was in pretty good shape when we had to close down because of Covid.
I took up biking maybe 6 years ago. I rode several long (50 mile) rides with my brother during the course of a year of training for RAGBRAI (the annual ride across Iowa), which he and I did together in the summer of 2018 (I think?). We rode 440+ miles in seven days across the entire state. It was wild and fun. There were 10,000 registers riders, plus another four or five thousand (or more) local riders would hop in for a rode to the next town. Biking helped with cardio, but the repetition of the pedaling movement somehow helps with PD. It’s like it makes the oral medication more effective by a little bit.
I should note that I began having crashes on my two wheeler, a couple of them not really pretty. My wife and I decided a three-wheeler (trike, with two wheels in front and one in back) would be the way to go. And it is … but I crashed it two weeks ago. I went down a big hill too fast, skidded into the curb, flipped (at least) twice over a sidewalk, into some grass, and against a metal fence. I ended up with the trike on top of me. I crawled out. I didn’t have a scratch on me. Not a mark. But one wheel was bent at a 45 degree angle, and some gear stuff got messed up. It’s been in the shop for a couple of weeks and I hope to get it back soon!
The other thing that is helping me — and I was really doubtful that this would do anything for me — is Tai Chi. The movements in Tai Chi are martial arts movement but in slow motion. Every move is something that is learned with practice. There are very specific motions for each move, moves with names like: Pushing Mountain; Parting the Clouds; Repulse the Monkey; Part the horse’s mane; Brush Knee; Grab the bird’s tail; and others.
And it’s helping. Making the movement slow and intentional helps me to refocus, recenter, and to remember to plan each step.
I have a tendency to lean forward, and my weight propels me and then my legs try to keep up, and my shuffle turns into a fast shuffle, and eventually and down I go. What I do now though when I start moving my feet faster and really shuffling is to say STOP! “Think Tai Chi,” I say to myself, and then I slow down and continue.
“I’m approaching a door with people standing near the doorway. Focus on steps. Left. Right. Left. Right. Through the Door. ” Thoughts like that help. What doesn’t help is when you start trying to put conditional phrasing in too, like, “Okay, if someone says hi, say hello too. Or if someone steps in front of you, slow down too. ” It’s really hard to think about multiple things at once.”
Even running a football play where I go out for ten yards, then cut left and catch the ball, is almost too much for my brain to handle.
But I’m trying.
Enough for now. I will write more sometime about the clinical trial I’m doing and why it’s helping my daily life.
Cheers y’all!
Joel