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…
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.
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.
So, we’re finally ready to start boxing, and then they go and patientise it. I am fully capable of discussing boxing with my neurologist myself and sorting out a medical release. I may be losing my health, but I am not losing my mind.
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…)
Tell me about when you were little; the hands with which you played in the sand, the food you shunned, the small heartaches and the huge plans. Tell me about a time when you were so sure that you’d grow up big and strong, and what you would and wouldn’t do. Tell me about the grownups, the role models in your fledgling world. Tell me about your home and your place at the kitchen table. Tell me about your first despair, your first triumph. Your very first hero. Tell me what makes you happy and sad or, better still, what makes you giggle uncontrollably. And when was the last time. Tell me what you're good and not so good at. Tell me which faces are forever in your mind, which eyes you love to see. Tell me about your favorite book, the music that makes your heart leap.…