Hey hey my playmate
Won't you lay hands on me
Mirror my malady
Transfer my tragedy
I was talking the other night with a friend who didn't know that I have P. After chatting a while, I disclosed this to zir and mentioned that I blog here. Ze responded, and I quote "wait what really holy shit!" Ze actually knew and read the blog but apparently didn't know it was me. Anyway, ze was excited because ze had been wanting to put me (or Parklifensci that is) in touch with someone I have more than one thing in common with. This was a funny coincidence because I was already mentally composing this post about connecting with other parks.
A while ago I wrote a post that alluded to my experience attending a "Young Onset Parkinson's" support group. It actually made me feel really lonely. There was absolutely no one there who was remotely close to my age. Connecting with other people to whom we can relate is obviously one of the most important aspects of life for anyone. But it gets a measure more difficult to do that when you have a condition that's as uncommon as "P in your 30s". I have found a few kin at this point and I've had good interactions with them.
However, I have another even rarer, lonelier condition: "P as a neuroscientist". I actually wasn't sure how many of these I would find, but it turns out there are a few and it's been very cool to contact them. I have even learned about one very famous neuroscientist whose work I have followed for years who has P, but I don't know if ze would be interested in hearing from me. If you personally know the person I am referring to (or indeed any P neuroscientist), please point them to my blog and tell them to feel free to email me.
The real inspiration for this post is a project I have recently become involved in that will hopefully start to generate some productive output later this year. I had a really fun Skype conversation with one of these rare park neuroscientists not long ago and we discovered we have a a remarkable number of things in common. I agreed to join a group of parks engaged in neuroscience or a health profession that ze is assembling as a sort of think tank of people who can understand P from many perspectives.
I definitely feel like this is the kind of thing I am in a very rare position to contribute to and it makes me feel good to do so. It even feels laden with the weight of destiny to an extent. But despite all that, I am most excited to make a personal connection with other members of my small breed.
My mind has changed
My body's frame
But god I like it...
We're howling forever
Title and lyrics are taken from "Wolf Like Me" from TV on the Radio's outstanding (and awesomely titled) 2006 album Return to Cookie Mountain.
ReplyDeleteWell ...I was just diagnosed last Friday. What They thought was an essential tremor six years ago is now a shaking left hand with stiff but useable fingers (I can pick up a screw but cannot drum my fingers), softening voice and a bit of a shuffle (unless I focus on walking correctly).
ReplyDeleteI haven't told anyone but my wife and my creative partner (I'm a creative director and designer). Reading your story has helped me see that it might not be the stigma I thought. I'm not writing like we've seen Michael J. Fox do.
I'm still figuring out what comes next. They think I might be able to get into a program at Yale but beyond that I'm researching exercise and anything else that will slow it down.
I'll follow your blog.