The great thing about getting a nasty disease is that you start to appreciate the little things in life soooo much more than you used to. Isn’t it just wonderful to watch the sun rise, set, or whatever your sun does? To hear a bird sing, even if this particular little thing does keep you awake at 5 in the morning. You know, you’re just so happy to be alive, that not even a bird singing the same song over and over and OVER again, can change that.
The Dutch ParkinsonNet is an online platform for Parkinson's care providers that evolved from a joint initiative between the Radboud University Nijmegen Medical Centre and the Dutch Society of Neurology’s ‘Movement Disorders Working Group’. The concept is simple: build a comprehensive portfolio of healthcare professionals, provide and share knowledge and expertise, and organise events. The primary target audience is health care professionals, the secondary men and women with Parkinson’s. Quality Parkinson's care (regardless of whether that’s fragmented and split between neurologists, occupational therapists, speech therapists etc.) is a prerequisite for such a platform. Yet, even though ParkinsonNet is now relatively well known within the Netherlands, most patients don’t even pay a weekly or monthly visit to the site. If ever. It’s not necessary either. ParkinsonNet costs money ParkinsonNet costs money. Think people, offices, education and congress. For an idea of the associated price tags (the following figures have been extracted…
Use it or lose it – The doctor tells the guy who is losing his dopamine and his mobility and his freedom along with it.
The guy exercises like mad, takes his medication on time and sticks to a healthy diet. The guy is using everything he has to avoid losing his mobility and his freedom along with it. (more…)
Parkinson’s therapy consists of medication, lifestyle and exercise. Most of the people with Parkinson’s use a drug dispenser to make sure they take their meds on time. I do. (more…)
Okay, fair enough: there is no escape. Or is there? Upon diagnosis a substantial percentage of your dopa producing cells will have already packed in. Irreversibly. By that time dopamine production will have usually reduced to at least 30% or 40% in one of your substantia nigra. Which to me is dark matter in itself. Mind you, I once asked a neurologist what a neurotransmitter looks like. “Well, he said, I’ve never actually seen one.” Right. (more…)
If you’d told me four years ago that we’d be having a new veranda erected in the garden today, I’d never have believed you. Or that we’d both still be working and I’d have put on 8 kilos despite having exercised more over the past 4 years than I ever did in the previous 46. Nope, I’d never have believed you back then. I mean, when the neurologist tells you that you have Parkinson’s disease – a difficult diagnosis to swallow, Mrs Robijn – you’re pretty much certain that your life is over. And yet, here I am tapping away on my keyboard as usual. Now that’s what I call a wonderful anti-climax. Okay… just for a minute or so.
(more…)
We all know children, we were all once children ourselves. Perhaps you still are. Or maybe you’ve got one or more children of your own. When you think about it: a large proportion of the world’s population consists of children. Those of us who are no longer children ourselves call those who are: our future.
You might have guessed that I’m not fond of dealing with Parkinson’s a.o.m. (and other misery) in life. Thing is, not-dealing with stuff will most definitely benefit our evolution. Not-dealing means nót settling for second best. Take monkeys. Monkeys are extremely good at settling for second best, which is why they’ve been eating raw leaves for yonks. No monkey has ever come up with the idea of boiling its leaves, thankfully so, as cooking food is the ultimate key to an accelerated evolutionary path. They simply deal with raw leaves, even though it will keep them up in those trees for yet another million years. (more…)
Je wist het al he, dat ik niet zo dol ben op omgaan met parkinson e.a.r. (en andere rottigheid) die op je pad komt. Ik weet ook zeker dat het onze evolutie ten goede komt, als we er juist niet mee omgaan. En ik wil me al helemaaaal niet schikken in mijn lot. Apen schikken zich bijvoorbeeld heel goed in hun lot. Ze eten al eeuwen en eeuwen rauwe bladeren. Geen aap die op het idee komt om zijn bladeren te gaan koken. Terwijl het koken van voedsel de aap in een evolutionaire versnelling zou gooien. Laat niemand op het idee komen om apen te leren koken, want dan zitten we straks met (nog meer) apen in allerlei regeringen. Geintje. Maar ‘t verhaal klopt, dat van dat koken en dat apen dat niet doen. (more…)
You’ve stuck by me for 50 years now Life. And you’ve given me a lot. A healthy and playful youth, two degrees, a couple of foreign forays in London and Tokyo, a career, the lot. Thank you, Life. You’ve given me 2600 weeks, the last 1200 of which the ‘we’ has embraced the ‘me’. Life - I want to thank you for changing ‘Me’ into ‘We’. For the husband in a thousand, no, a million, the one and only. For the happiness our children bring. Words fail me, Life. You’ve given parents, brothers and sisters, Life. Thank you. And, Life, you’ve given us friends, because you knew only too well how much we, okay, I in particular, love to talk with friends. Ah, remember that imaginary contract of mine? Well, let’s forget all about it. What’s the point of contracts when they don’t even exist. Between you and me, Life: you're a real…
De monteur kijkt alsof hij allang weet wat je gaat zeggen, maar hij wil het van jou horen. Dus je graaft eens in je geheugen. Ja ik weet het weer, toen in Frankrijk, op de snelweg. Ik wou even inhalen, maar de schakelbak reageerde niet snel genoeg, ik bedoel, ik had netjes de koppeling ingetrapt, richting aangegeven, spiegel gekeken maar er gebeurde niks, tenminste, niet snel genoeg. Nou ja het is gelukkig goed afgelopen, maar dat schakelen is daarna niet meer hetzelfde geweest. Trouwens, ook het stuur is gek, dan weet ik toch zeker dat ik alles onder controle heb en rechtdoor ga, schamp ik ineens langs de stoeprand. En ik moet zeggen, bij hogere snelheid, als ik 'm lekker in z'n vijf gooi, lijkt het net alsof de motor begint te trillen. Oja en de zijspiegels. Ik zet ze altijd precies goed, maar de laatste tijd blijft de rechterspiegel…
Zoo, mevrouw, vertelt u eens? Zit daar alléén, want ik heb natuurlijk niks. Nou eh jaa eeh ik denk dat mijn hand het niet meer zo goed doet en mijn voet ook niet en ik denk dat eeh ja kweenie net alsof de berichten te traag doorkomen. Stilte. Hm. Te traag zegt u?
Soooo, Mrs Robijn, tell me, what seems to be the problem? Went there on my own, obviously, I’m perfectly healthy, aren’t I. So I reply: Well, doctor, er yeah, I have a feeling that my right hand’s not quite okay, neither is my right foot and I er, I dunno, it’s like the messages are not getting through quickly enough or something. Silence. Hm. Too slow you say? Can you still smell properly?
You promised me a lot, Life. Happiness, success, a touch of fame, even if I didn’t know exactly what form that would take, a family with the love of my life, living to 100. Sooooo, can we take just a little moment to discuss, Life? That’s if you can tear yourself away from lining up yet more surprises? (more…)