Those were the words that truly hit me, when I asked the neurologist what Parkinson’s does to you. During those first few weeks following his “I strongly suspect early Parkinson’s disease, Mrs Robijn,” pronouncement my frantic google searches had, meanwhile, already confirmed it. As well as those countless searches for ‘things that look like Parkinson’s, but are actually just symptoms of the common cold.’
One simple image is more than enough to convey my message: a strong pair of hands holding an infant. Everyone gets that. Strong hands that are ohhhhh so soft and tender. The infant needs the strength and tenderness that those big hands afford.
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).
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.
Parkinson’s is a disease of loss. At first, you only lose the small things. Then you lose a few more until it eventually becomes quite a lot. You can see this coming, even if you don’t exactly know what you’re going to lose and when.
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.…
Vrouw.nl, De Telegraaf, interview, April 2017 50,000 people in the Netherlands have Parkinson’s – a progressive disease that causes certain nerve cells to die, resulting in loss of muscle control. The repercussions: tremor, stiffness and slowness.