Someday in the very near future I’m going to have a “celebration of movement”. Yet I’d like to be careful how I cultivate perceptions of Parkinson’s by doing so. What I’ve chosen to do on that day is ride my mountain bike 10 miles to a climbing gym (within 1 hr). Deadlift 450lbs (there’s a gym at the climbing center), climb a 5.9 rated route on the 60 ft wall, and ride the 10 miles home (within an hour). Fairly impressive for a guy with Pd right? Well, sort of.
I think sometimes people may get confused by our message to them by events like this because they see a Person with Parkinson’s (PwP) do these physical activities that are perhaps unexpected for someone with a degenerative neurological disease. That person might assume that Parkinson’s isn’t that bad because the PwP is doing those activities despite the difficulties the disease presents. They assume this, without realizing that it’s regular activity that unlocks that PwP ability to do it. A very important, yet often overlooked distinction, I believe.
And the fact that I can ride somewhat fast to a climbing center, pickup a decent amount of weight, do a sort of challenging climb, and ride back fairly quicky actually is just because I’m fairly athletic and somewhat big and strong. It has absolutely nothing to do with Parkinson’s or even my ability to overcome it. It’s simply because I’m capable, and by training for it all the time it maintains my mind /body connection enough that I can. Of course, some others can do better…but it doesn’t matter. My goals are of course for myself, to help keep me motivated to keep moving. To maintain my ability to move in this life.
Ironic that those among us who are able to best manage the disease may do so at the detriment of the overall public awareness of the seriousness of the disease. These individuals would tend to be more visible to the public than their less able-bodied peers and would in fact be keen to broadcast their feats far and wide in the name of “Parkinson’s Awareness”.* Meanwhile, those who either don’t or simply can’t manage their disease so well, perhaps due to other health issues, suffer silently in the darkness. I have seen it. My own Aunt is one such person. The public needs to see those people too. But unfortunately, few people pay attention to a disabled person. Oftentimes, not even other disabled people. This is the sad reality when it comes to the skewed message we PwP inadvertently send to the public in the name of Parkinson’s Awareness.
Still, I am going to celebrate movement often. But I do so because I’m thankful that I still have the health and vitality to do the movements that unlock the movements that I do..so I can stay ahead of the disease for now…not because I’m somehow magically defeating Parkinson’s. Trust me, Parkinson’s is still doing its thing. I’ll try to be careful to make sure I make that clear when I discuss such things with folks without Pd.
My inspiration for this little “event” is due to recent experiences in my personal battle with Parkinson’s. An unintended 3 week hiatus from my exercise routine left me surprisingly movement challenged. As I’ve slowly regained better, more consistent control over my body through movement, I’m reminded of the incredible…almost magical power of exercise to reset our mind / body connection. This experience has left me inspired to share with anyone who will listen both how devastating this disease is, and how important movement is for us PwP to retain our functionality as long as possible.
As all PwP are unified with the need to move, I encourage every PwP to have your own “Movement Celebrations”. Choose whatever movements are the most effective or most enjoyable to you. Do them often. Do them for yourself, to make you move and feel better. Feel free to post about it. Brag about it. Make some noise about it. Invite all your Parky and non-Parky friends to join you.
But one thing I would ask if that you try to make clear to your non Parky friends that the only reason you move as well as you do is because you do the moving regularly. Then, perhaps we can help to align the public view more accurately with the reality those of us with Parkinson’s face. A disease that gradually dismembers you from the inside out, starting with your identity, then slowly, horribly, taking your ability to move. It’s the forgotten slowest among us that it consumes first. A twisted sort of survival of the fittest. Yet ultimately, no-one escapes.
Parkinson’s is one scary mother-f***er.
That’s the real Parkinson’s Awareness.
*Please understand that I’m not at all condemning any activities showcasing physical skill, or athletic feats of endurance or strength in the name of Parkinson’s Awareness. I’ve done them myself. Though those feat can be inspiring to fellow PwP, I’m suggesting that we may be confusing the public a bit by showcasing these feats the way we currently do.