Parkinson's:Crackin' the nut

Parkinson's: our 4-year shot The World Parkinson Coalition (WPC) is holding their 4th World Parkinson Congress in Portland, Oregon September 20-23rd NEXT YEAR,  2016 . They've dropped the last 's' after Parkinson's - fair enough....annoying anyway. Here's their site:  http://www.worldpdcoalition.org/ Here's their podcasts:  http://www.worldpdcoalition.org/?page=PortlandCountdown   I've heard the first podcast already. It was 30 minutes (approx), fascinating and well presented. DBS was alluded to, but not addressed. If you scroll down on the lower link, you'll see why. What was addresses was the rather sad confession that after about 50 years, there's presently no other pharmaceutical alternative than L-Dopa. Sucks, considering. But there's a lot of excitement and hope...... The thing with the WPC is it's really the motherlode of hope for PD ( Parkinson's ...(sigh) - do get told off for using acronyms, even though I ALW

Work together, Cure together: Parkinson’s Calling all Parkinson’s, families, spouses, carers: you wanna cure? Fight for it! https://www.linkedin.com/pulse/work-together-cure-parkinsons-lisa-vanderburg?trk=prof-post World Parkinson’s Awareness Day is looming. April 11th, in fact. We’re asked to wear purple. But I won’t be posting on that day, tell you why later. Pretty much every Country in multiple cities, will be holding this event. All the big guns will be there: Michael J. Fox Foundation, Davis Phinney Foundation, APDA, Parkinson’s Disease Foundation, EPDA, National Parkinson's Foundation, to name a few. The above are a probably the most high-profile of 171 global partners listed below from 46 countries that have teamed up with the World Parkinson Coalition, which hold their congress every three years (next 2016). But even though they’re ‘teamed’, each one has their own agenda….not necessarily of their own choosing. I shall refer to all the above collectively

James Parkinson: 198 years on April 11th is World Parkinson's Awareness Day. Yippee. I'm so thrilled, I can hardly stop yawning. This is gonna be a bit of a rant, but sometimes you have to call it what it is. In the infancy of my husband’s Parkinson’s, I used to think ‘why doesn't anyone connect the concept that all movements stop during sleep…there must be an answer there’? Sweetly naïve, wasn’t I. Of course that was a life-time ago (actually, I  do  exaggerate – like to put it down to being numerically dyslexic), but really it’s a mere 15 years; just seems like a lifetime. The sleep thing is sorta moot these days anyhoo. Pete (hubby with the ‘Shaking Palsy’ – I’ll get to that later) doesn’t sleep much – in fits and starts – at his desk – face in his dinner. Wherever, really. And if he sleeps it’s fairly tormented by REM sleep disorder and RBD (REM behavioural Disorder), apart from those odd moments when he enters the paralytic stage; REM – the fifth stage of

Bradykinesia in Parkinson's: overcoming Excellent!  This 'hesitation' (technically bradykinesia - reluctance in motion) is very powerful, so distraction is the key. I knew a couple (he had the PD) who can to our restaurant. He'd be unable to cross the threshold of the doorway - she got him through by throwing down a tissue just past it - then he could move. Whatever works - this is great.  http://youtu.be/Lc-8gzTDD5I

Okay - finally bit the bullet and decided I just gotta DO it - get my own blog up! This may sound easy to you, but I have the IT skills of a baked potato, thus I view all these things with a certain disdain and distance...like ya would a rabid Rottweiler. The reason is simple: my mind just doesn't compute such things. That said, I think I've got it sussed? If anybody's out there and see this, lemme know. Could be yelling in a vacuum, as usual. 

WE the people. That’s YOU, right? Dec 28, 2014 236 Views 11 Likes 6 Comments Share on LinkedIn Share on Facebook Share on Google Plus Share on Twitter This is for the  PUBLIC . Those that don't have experience of Parkinson's. My aim is simple: education. No offence, M J Fox. We all know what a responsible, pro-active figure-head you are for Parkinson's; and we who have Parkinson's, are family, carers or otherwise involved with PD (Parkinson's) are so very grateful! I talked to probably thousands of people by now, and their understanding of PD has generally not changed in the last 15 years - the time of my husband's diagnosis.  Why . Well, in part, it's our own collective fault. We're so busy putting a good 'spin' on it, basically to make other PDers feel better and keep hope alive. Lovely, noble, but it's not helping in raising awareness at the sheer devastation left in the wake of this disease. It doesn&#

WE, the Forgotten. NOT for patients Jan 4, 2015 367 Views 18 Likes 9 Comments Share on LinkedIn Share on Facebook Share on Google Plus Share on Twitter This is NOT for Parkinson's sufferers, but for YOU - the public. In fact, I truly  hope PDers don't read this - they know it all and they suffer enough. This is HARD. Okay. Here we are at post 2. For those that saw the first one, I salute you!! You are my BFF! That said, I’m really struggling with this post….agonizing if fact, on all sorts of levels. How do I do justice to all Parkinson’s sufferers AND their spouses, families, carers? Because Parkinson’s is a BUSY disease – doesn't let up. Do I just talk about our own experiences? Nah…even I hate them. Downright depressing. How do I show the true colours of this disease and still maintain hope? It’s a horrifying disease – and I can’t get ‘round it. Parkinsonism is a HUGE spectrum, with each affected person having their own ‘unique’ vari