Skip to main content
WE the people. That’s YOU, right?
Lisa Vanderburg


WE the people. That’s YOU, right?

Dec 28, 2014
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't serve us fiscally either. If the average person knows so little - worst - sees it as I've quoted below, they're not going to be giving the monies needed towards a cure.
But (certainly in my experience), I am more than concerned at just how little the public really know about PD. It's still 'oh, that's a shake, yeah'? or 'right...old dudes get it, no'?
Now, to be clear, it's not your fault you know so little about this disease. There's so much info on all things out there. There's also more 'interesting' disease, or newer disease....head-liner disease. PD has been around for donkey's years.
So today, that's my aim: telling it as it is. No-holes barred, for the PUBLIC. And all I want from YOU – the PUBLIC? Half an hour of your time, that’s it. In fact, I’ll split it into two (or maybe 3) parts so I don’t take up too much of your time, because I KNOW you’re busy and have a heap of other burdens to bear. I appeal to you to just stay with me awhile.
Okay. PD is the second most common Neuro-degenerative disease (Alzheimer's being first). Pretty sure you all know what neuro-degenerative means, but just in case; it means that it runs a course - evolves, if you like. Like Alzheimer's, it'll only end with death. Whoa - that's a pretty horrible statement, huh? What I mean is, only death will stop its path. As M J Fox rightly said, 'ultimately, it's all about stillness'. To me - the most scariest sentence I ever heard. So much for a mere 'tremor'.
Before Levadopa in the 1950's (the chemical replacement for dopamine; it's what the body stops producing in PD patients), PD was basically a 20-year life-sentence.
PD is getting younger and younger. I've met people diagnosed in their teens - that's terrifying. And its prevalence is increasing at an alarming rate. According to WHO, and pretty much every other Parkinson's Body, 'the number of Parkinson's disease patients will increase from 4.1 million in 2005 to 8.7 million in 2030' (courtesy of Statista). So the chances are, if you don't know about PD now, you probably will...in future.
Next time, I get more graphic with you. Tell you more about the nasty nature of this perverse beastie. Meanwhile, I shall leave you with a little video to look at - hoping to God you're still interested! I'll keep them SHORT - promise!!
http://youtu.be/xuVY7wS25rc pre-levadopa, 1.45
http://youtu.be/aOSB6ytMk20 Analysis on different types of Parkinson's Disease 2.57
http://youtu.be/Q2G-iJAI-EQ 26 years at dx. Unconditional Love: watch 1.36
Thanks!

Comments

Post a Comment

Feel free to leave a comment!

Popular posts from this blog

Parkinson's and DBS: the skinny

Image
This post is for Parkinson's patients, family, carers, or anyone who knows someone with the disease. My husband, Pete, is into his 15th year. In 2012 things had begun to unravel - he'd reached the end of his 'honeymoon' period with his meds, and was in a pretty awful state. Thankfully, he was eligible for DBS (Deep Brain Stimulation) and happened to be offered the new system from Boston Scientific. This was done under the absolutely amazing Neuroscience department of Frenchay hospital in Bristol. We've not looked back; so profound was the change. We owe a great debt of thanks to Dr. Whone and Prof. Gill, and of course Boston Scientific. Over the next two years, I became very curious about the whole DBS thing for PD patients, and with Boston Scientific well under way now in the US to get FDA approval, I wrote a three part paper for those that will be facing this huge - and hurried - decision. I hope it helps! All facts have been checked and I have my sources secure
Read more

PARKINSON'S & DBS: The Ground Realities

Image
google.com/+LisaVanderburg Almost titled it ‘The Grave, Ground Realities’, but as my husband said, some words just shouldn’t be put together…… This is the most important and final addition...probably: it’s for the PATIENT and their families. That is my hope and my sole raison d'être. I do have an axe to grind, but with no one specific, and I don’t ‘make’ anything from this. (Actually…does a Boston Scientific pen count?? ‘Cos mine’s broke.) In fact, doing this has prevented me from making any money, so I hope that helps in what I said above: It’s for the PATIENT . Why? Because if you don’t know; you can have a voice. First, let's address all the many, many PD Foundation, Association, Group etc.: I salute them – all that they do is noble, wonderful and worthy. The peeps that run them are right up there with the angels (but their job is harder...can't just take off when they feel like it). Their fight for YOU is nothing short of pure altruism. Millions volu
Read more
Image
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
Read more