The parkinsons spread... experiences


#1
hello all,

im new to the forum and newish to PD...

i have a question!!

background bit... i was diagnosed 2 years ago at 30 but symptoms since 27ish and i am now feeling the spread...

basically started in my right leg (at 27) classic it seems with my age spread to my right arm and hand after 2 years (at 29/30) diagnosed 30 and now (within last week or so) im feeling it in my left arm...

my symptoms are pretty mild and under control with 16mg ropinerole XL and 3 x 62.5 sinemet per day, worst of it is i struggle to walk early and late in the day

my question is how have other people felt the spread of the disease.. i know it varies person to person along with the medication etc etc just interested in peoples personal experiences??

i have that feeling i remember from the onset of my PD as the just "knowing and feeling" something is not quite right

paul

#2
hi
hope you havent been waiting up all night for an answer!
i went to the doctors, physios etc for years with tendonitis and stiffness and it was never taken seriously.
tripping up because of a dragging left foot was the turning point.
i am left side affected but am 'ambiguous' - some things i am sinestral and some dextral (i think i may have made those words up)
left side continues to deteriorate and unpleasant inklings on the right side. i dread the right side being what the left is now,but that should be 4 or 5 years hopefully. still on low dose of madopar so plenty of scope for increase as long as its tolerated.
cheers

#3
I started with my right hand - they thought it was carpal tunnel syndrome and were going to do the operation just in case (!) until I asked whether there was ANYONE else who might have an opinion ... Enter the neurologist. I was 38 with a small child. Since then it's spread to my right leg, general slowness and lack of dexterity in my left hand. I have also had another child which has definitely speeded up the growth of the symptoms but was obviously worth it! I'm still onlY on 10mg requip so not doing so badly I suppose. My real challenge is with dealing with stressful situations - much harder these days. My speech also gets rather cluttered - of course that could be the wine....

#4
Mine is also starting to spread from the left to the right – something I’ve been dreading for a while. If I touch my left shoulder with my right hand, I feel that strange ‘cogwheel’ thingy when I bring it back. (There’s a cure for that, I hear you say …. don’t touch your left shoulder with your right hand!)

Of course it’s not the wine, Quarkee; the wine makes everything better – for the moment. So let’s live in the moment I say. Who knows, there might be a cure brewing in some distant test tube as we type! :smile: