Parkinson’s – the least of my problems

  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. From ‘everything is good’ to ‘everything is most certainly not good’ If you’re diagnosed with Parkinson’s […]

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Things that you do/don’t/never have to get used to

 Oh, I could get used to that! That glorious sunshine, that peace and tranquillity, that plush bed, that fancy house. You’d better get used to it. There’s nothing else for it. Hm, this might take a bit of getting used to. This getting up at 6 am business. Ugh!  Well, you’ll just have to get […]

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#theyhavedifficultydualtasking #Parkinsons #therapist

 “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 […]

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Planet Patient vs Planet Researcher – from both sides now (by Frank Church)

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 […]

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I don’t believe in Parkinson’s

Obviously I know I’ve got Parkinson’s. But I don’t believe in it. You tend to believe in things that you don’t have or cannot grasp. Things that are intangible. You need faith, in other words, to keep believing. I believe in the child that we lost – I can never hold her again, but I […]

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Planet Researcher to Planet Patient (by Simon Stott)

Simon Stott is a researcher who makes the unusual effort of explaining the science and research that is currently being conducted on Parkinson’s disease in plain English. He made an even more unusual effort by writing an answer to my blog “Planet Patient vs Planet Researcher.” From his site The Science of Parkinson’s About Simon Stott […]

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Planet Patient vs Planet Researcher

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. Yet, patients are on a totally different planet to researchers. From a distance, you could be forgiven […]

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Don’t. Patientise. Me.

So, we’re finally ready to start boxing, and then they go and patientise it. Does a therapist really need to come and check if I can handle it? That I won’t do myself a mischief? As if a therapist has more idea about boxing or Parkinson’s than I do. Or, more importantly, myself. I mean, […]

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Try and make it look at least a bit like Life!

I do boxing, Parkinson’s boxing. Our coach often says: “Come on you lot, try and make it look at least a bit like boxing, eh.” Those are powerful words. They convey a bit of everything: humour, challenge, reality. Because, let’s face it, if you’ve started boxing in your 50s and you’ve got Parkinson’s, it doesn’t […]

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British Medical Journal, Onderzoek naar Parkinson moet vernieuwen

Dit is de Nederlandse samenvatting van de blog die we met onze Parkinson’s Research Advocacy Group hebben geschreven voor de British Medical Journal. “Als Parkinson patienten en research ‘Advocates’, belangenbehartigers, blijven we hoopvol dat de wereldwijde overvloed aan research naar parkinson binnen afzienbare tijd zal resulteren in behandelingen die onze kwaliteit van leven structureel verbetert. […]

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