A Parkinson’s charity (dedicated to finding a cure for Parkinson’s) wanted to know what a cure for Parkinson’s would mean to us people with Parkinson’s. I’m sure that they asked this question out of genuine interest. And I’m sure that the question was well-intended. In fact, I’m positive about that. But after 8 years of living with Parkinson’s, I’m afraid that I’d have to reply: That’s an incredibly stupid question. As in: really, really stupid. As a Parkinson’s-free person, you should know full well what it means to be Parkinson’s-FREE. Do I really need to spell out just how lucky you are to be Parkinson’s-free? Don’t you appreciate being Parkinson’s-free? Must you instead ask me (a pwp for 8 years) what a Parkinson’s-free life would mean to me? Take a look in the mirrorNow, what do you see?Sheer joy, happiness, gratefulness, a huge smile on your face, simply because you’re…
Right, love, let’s get this brain into the MRI….NOOO! Can’t believe you still know your own name. My goodness, whoever did your veins did not have the first idea what he was doing… Quack! Wow, I’ve seen a lot in my time…but honestly. You came by in the nick of time. Better get this sorted. It might take a few months to get you back on track, but hey, you want to function somewhat reasonably, right, love?
Your life consists of good and not good. Regardless of whether that’s self-induced or caused by someone or something else. Sometimes it can hover between the two, sort of semi-good. But mostly it’s simply good or not good.
“So, you have to get them to do exercises, where they have to perform two or more tasks simultaneously. This trains their brains, because this type of thing isn’t easy for these people, you know. It’s nothing to worry about, but you do have to know how to deal with them. You’ll also start to notice that they tend to respond more slowly to what you ask of them. So, you have to tell them twice. Which is good to be aware of. (more…)
This thoughtful blog was written by Frank Church, as a follow-up on Simon Stott's 'rebuttal' of my blog 'Planet Patient vs Planet Researcher' About Frank Church: Medical school and undergraduate biology educator, biomedical science researcher and part-time golfer. My diagnosis of Parkinson's Disease, combined with my career in science and education, allows me the ultimate "teachable moment". The theme of this blog is my journey with Parkinson's. The overall goal of this blog is to give encouragement, along with information and other resources, to anybody with Parkinson’s. About his website: A blog for Parkinson's education, research advances, new treatment strategies, and personal reflection: the goal is to provide support and information/resources to anyone either with Parkinson’s disease or with any neurodegenerative disorder. Frank Church writes: “I cannot always control what goes on outside. But I can always control what goes on inside.” Wayne Dyer “Judge a man by his questions rather than…
Simon’s answer to Planet Patient vs Planet Researcher
“She’s really ‘leuk’ (Dutch for nice).”
Diagnosed at 46 with Parkinson’s, Mariëtte keeps a great blog that touches on many areas of life, including boxing. But it also provides her with a medium to discuss how she lives with Parkinson’s (you should follow her if you don’t already).
If you’ve got Parkinson’s, you tend to think that all those researchers should just get a blooming move on and find a cure. Or an effective therapy at the very least. I trust you researchers think the same.
My right hand used to be so strong! I could do anything I wanted with it and consider that perfectly normal. These days, whenever I see my right hand, I know: you used to be so strong. You’re doing your best, but you’re definitely not what you used to be. And my heart breaks a little. (more…)