Parkinson’s… where are we now?

Imagine for a moment that you have something important to say. You want to choose your words carefully because you want people to understand your message, and as you wait for your moment to contribute to the conversation a three-year-old sneaks up behind and starts tugging at your trousers. At first, the tugging is just an annoyance, and a simple “please stop” restores order. But sometimes the tugging actually starts to pull your trousers down and you struggle to keep your mind on the task at hand. You notice that people are watching you for the wrong reasons. They are patiently waiting for you to finish or start your message. They see the tugging. They are watching the tugging. But nobody is stopping it. Or you are typing a simple email but someone keeps tapping keys you don’t want and closing applications in the middle of things. That’s Parkinson’s. That’s the way the tremor works.

I could go on … but I won’t. As a person with Parkinson’s, I balk at the suggestion that I have a disability. But Parkinson’s is certainly disabling. Not long ago I wrote of the positive benefits of martial arts and I can see that my engagement in Taekwondo has slowed the progression of my experience, but it hasn’t stopped and I am now at the stage where I need to concentrate hard for fine motor skills. I have a constant feeling of agitation. Even when I don’t have the tremor, I have a sense of free-floating anxiety; sleep disturbances; choking on my food; feeling faint when standing, losing my balance when I turn quickly …yes the disorder has begun to take hold.

Sadly, the thing that was slowing the progression is now interrupted. My capacity to engage in martial arts is severely challenged. But I’m not depressed. I’m not defeated. I haven’t lost my faculties.

Let’s check in on this thing in another few years!

This post was written on May 18th, 2022.

It’s now July 19th, 2023 and things are a whole lot better. My medications have been modified and dosages generally increased, and I have really pared back my commitments. I rarely have a debilitating tremor. I am able to play my tuba again, and the harmonica, without beating myself in the head with the instruments. I have rejoined the A grade Brass Band. I don’t suffer from free floating anxiety anymore, although I’m a terribly panicky back seat driver. I have learned that if I forget the medications or let them lapse that I become unable to manage myself … so I am very attentive to my medication schedule.

But I’m not in the clear. Testament to this is the fact the I am writing this post at 2:39am. I’m living the symptoms of sleep disturbance. I have stopped even trying to make handwritten notes, as my scratches are completely illegible. But I’m back at martial arts training. The doctor tells me that I’m not expected to experience any Parkinsonian dementia, and Alzheimer’s doesn’t tend to double up with Parkinson’s, so as long as I can find ways to manage my poor fine motor control life should be pretty good. I’ve now been diagnosed for over 8 years and things are ok.

I’ll let you know how things progress.