Well, I guess some clubs you don't want to join. :-(
First symptoms were minor - nervous habit of rubbing thumb on index finger on right hand, and an uncomfortable tension in the back of my right thigh while driving.
Progressed to "carrying" my right arm instead of it hanging down and quite severe tremors when exercising at my local gym. Then a deterioration in my handwriting, walking with a "flappy" right foot and finally some shoulder pain (though this may not be related). Most annoyingly I'd started to learn the bass guitar and found I simply can't move my right hand quickly enough to progress very far.
Been under the doc for about a year in total as symptoms got worse. Referred to consultant neuropathologist in October, DATscan in December...results just come through and it looks like (or to use my neuro's term "is consistent with") Parkinson's. Feeling mostly relieved by this diagnosis as my own research had me thinking it may be MND.
I say "mostly"..was doing fine until went for assessment by local community care team and presented with literature with an old man on the front drinking from a child's double handed cup. I'm only 48 and it is exactly this sort of infantilisation I fear (already struggling to use a knife). Who designs their bloody literature? :-)
Not impressed with neuro who insists I have a resting tremor (I don't, I only get tremors under exertion) and worryingly that this is a "good thing"..if I don't have one is this a bad thing? Also less than impressed with his letter to my GP that says I'm on 150mg Azilect and letter to hospital prior to scan that says I'm on 100mg Azilect. Actual dose is 1mg Azilect. Not reassuring, so have asked to be referred to someone better.
Been on the Azilect for three months now. Good news is no side effects, bad news is no effect at all; maybe minor improvement in use of a computer keyboard.
First steps on (hopefully) long journey I guess, would like to hear (hopefully positive) stories/experiences from others with similar symptoms to mine. Would particularly like to know if any of the treatments restore function (I'd REALLY like to get better on the bass!) even if only for a short period of time (I'm not deluded, I know it's a story of decline overall, but would like to know if it's a roller coaster or just all downhill). Maybe I could learn the bass part to the Verve's "The Drugs Don't Work"?
Looking forward to replies...