Have you ever seen that experiment of a mother looking at her a few months old baby?The baby sits in a baby chair, the mother sits opposite the child, very close and looks sweetly, softly, motherly and smilingly at her child. The child smiles back happily, wiggles its hands and feet and almost wriggles out of the chair with joy. Then the mother turns around for a moment. When she looks at her baby again, she keeps her face fixed and impassive. She doesn't laugh. The child falls silent, is startled and starts screaming. Total despair in the child. Contact with the mother has been broken. She has become unreachable. World collapses. I can relate to that. It’s a Parkinson’s symptom too. Mask face. Horrible word. I think it is one of the worst symptoms of Parkinson's. It was one of the first things that, looking back, puzzled me the…
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.
I didn’t see that coming. Imagine visiting your neurologist and, when you get there, they can’t wait to hear what fun things you’ve been up to since your last appointment.
We have a lot on our plates with Parkinson’s – accepting, letting go, embracing, exercising, resting, eating healthy, sleeping well, and goodness knows what else.
When something major happens, you tend to want to share it with someone. You’re feeling shocked or happy or sad, and that can be too much for one heart.
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.
You, or someone you know, has got Parkinson’s. Perhaps you’ve only just found out or maybe you’ve known for years. If you’ve only just found out, you’ll probably be feeling pretty overwhelmed to say the least. All you can think, is: What Now!?