I'm 56; married with two sons; living in Stafford, UK; 7 years since being diagnosed with PD.
I usually post on the neurotalk forum. But you've been getting good reviews there from people with "dual nationality", so I thought that I'd see for myself.
In my view, PwP can DO much useful research.
So, given my background in maths and computing, I'm mainly into data collection and analysis. When we have the data my posts to neurotalk are often about the geographical epidemiology of PD. And when we don't, I've written programs to measure symptoms. See, for instance, the online side to side tap test at:
Sometimes the only way to get the data is to build something, e.g. forced exercise of the arms (using two mixer drills), or to make something, e.g. liposomal dopamine (using banana skins).
I look forward to discussing theories and sharing experiences with you all. Together we can make things better.
John
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Welcome to our awesome community nice to hear from you. As Al said this is a great site full of stories jokes and anecdotes...as well as the odd gripe.
I`m 50 and I was dx in Oct 2011. I live in Sheffield.
I am very interested in doing personal research - two of my drugs came via that route. Recently I started to try and gather evidence on Pain in Hips, Knees and Thighs - see Questions - in a start to Group Research because PwP kbnow more about the monster than anyone else and collectively I believe we can tame it
I live in The Peak District National Park just west of Sheffield
hello john and welcome to the mad house !! i am 66 and was dxd in jan 2010 - but have since got so bad that they are thinking it may be PSP or MSA - i live in france and the care here is fantastic - i ma due to go into hospital for drug holiday tosee if i really dohave pd -
anyway glad to see you are so active in the research area
Hi John, Welocme aboard, you sound very intelligent looking forward to hearing from you,myself, and my husband ( he is the one with PD of 18yrs) live in UK Yorkshire.
Always nice to see a new face or hear of one joining the group
hi john. Are you on facebook? I'm asking because a friend of mine who's a scientist at Rockefeller University here in NY sends me lots of brain related research articles . I could forward . Welcome aboard,
Hi...I am interested in the geographical epidemiology of PD. I am not aware of any research in Europe or Uk. I am aware of figures for N America and various other parts of the world. Are there any for UK??? Europe??? My husband was diagnosed in 2003 aged 54. He lived in England till 25, then Germany till 50...knowing more info would be interesting...also...at what age would environment matter???? Good luck with all your work!!
Hi John, nice to have another neurotalker on board. Weirdly enough I found out that a PWP in his 40s lived opposite me for a while. Considering there are only 3 or 4
PWP under 50 where we live in Brighton that's pretty strange. I think we were both dx while living in my road and share the same GP..he lives a few minutes walk away now. Something in the water?
Hi John! Welcome to our crazy group. There isn't much we don't discuss except those items best left to other arenas. My husband is from England (Prestbury/Cheltenham) and it is beauttiful country in the Cotswolds. We visited every year until I was dx with PD five years ago - I actually had it 2 years prior to dx. We presently live east of Seattle in the foothills of the Cascade Mountains and find it very PEACEFUL here. I HOPE YOU HAVE FOUND WHAT YOU ARE LOOKING FOR HERE. WE TRY TO KEEP SMILES ON EVERYONE'S FACE AND ARE HERE FOR YOU.
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B1/Thiamin - What's the situation?
Saying "Hi"
Not sure what's happening?
In no man's land
Just needing some words of support... and news on the leg pain.
