Right, love, let’s get this brain into the MRI….NOOO! Can’t believe you still know your own name. My goodness, whoever did your veins did not have the first idea what he was doing… Quack! Wow, I’ve seen a lot in my time…but honestly. You came by in the nick of time. Better get this sorted. It might take a few months to get you back on track, but hey, you want to function somewhat reasonably, right, love?
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.’
The Kingdom of Parkinson's The Gate | The Family | The Shrink | The law | OnMeOwn | Plumber | The Place | The Market | Friends | The Translator | The Writers | The Overthinkers | The Craftswomen | The Chemists | The Invisibles | The Scientists | The Clinicians | The Stock Market | The Comforters | The Voice of the Kingdom | Princes and Princesses | Homesick | The Family | The Gate Photography Wim Rozenberg. Proofreader Lesley Kristensen Gunn. Subscribe to the newsletter if you want to join me searching for a way out, or through, the Kingdom of Parkinson's. Chapter 1. The Gate You enter through a gate, absolutely convinced you’re the only one there. You don’t have a clue the what’s coming next, now that you’ve unintendedly gone in. All you know is that this is definitely NOT where you want to…
I love working with People with Colds. Yep, I’ve fully immersed myself in the subject. Well, in all that snot. I’ve since discovered that they’re not the SUM of all that snot. Rather, they just happen to have lots of it. So, I've immersed myself in all that snot. And I’ve also discovered that there are NUMEROUS VARIETIES OF SNOT, which only serves to make the entire topic more interesting. Although, trying to establish who’s suffering from what type of snot and how long they’ve had it is, I admit, a tad laborious. There’s also the disadvantage of having absolutely NO IDEA about how to tackle all that snot and, in particular, how to get rid of it. Living with People with Colds is no walk in the park either. All that snot eventually starts to control your life. Incidentally, you might think that People with Colds are all the…
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.
“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 notice that they tend to respond more slowly to what you ask of them. So, you have to tell them twice. Which is good to be aware of. (more…)
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 moment". The theme of this blog is my journey with Parkinson's. The overall goal of this blog is to give encouragement, along with information and other resources, to anybody with Parkinson’s. About his website: A blog for Parkinson's education, research advances, new treatment strategies, and personal reflection: the goal is to provide support and information/resources to anyone either with Parkinson’s disease or with any neurodegenerative disorder. Frank Church writes: “I cannot always control what goes on outside. But I can always control what goes on inside.” Wayne Dyer “Judge a man by his questions rather than…
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.
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. Terwijl we daar op wachten, neemt de twijfel toe: de snelheid waarmee we vernieuwingen zien, lijkt af te nemen doordat het systeem (van research en van funding van research) het tempo van onze neurodegenaratie niet kan bijhouden. Problematiek Parkinson onderzoek De vraag of het huidige model van clinical trials nog wel geschikt is Het systeem van research en funding minder gericht is op resultaten dan op inkomsten en grants. We hebben te lang aan de zijlijn gestaan bij het ontwerpen en uitvoeren van clinical trials Voorstel Parkinson Advocates De incentive structuur van research en clinical…
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.