Can’t believe 3 yrs ago since I was in Italy at the European Parkinson’s Therapy centre.
So much water under the bridge but still almost as good as as I was then.,I say almost because as far as the PD is concerned not much has changed ,I’ve had a few minor problems. Rotator cuff tear,ruptured biceps tendon ,Parkinson’s foot,tailors bunion and hammer toe! such an inconvenience.!
Had to start Madopar 22 months ago but getting the dose right has been real trial and error.Started off on 100/25 three times a day which was fine for about 5 months. Then the dyskinesias / dystopia started and was getting a lot of off time. It’s taken nearly a year but I’m now on100/25 first thing then 50/12.5 2 hrly x6 doses. Having mostly carbs all day then protein for supper.
Still get a bit of facial dystonia an hour after taking meds but it worries the wife more than me!
Still doing all my sport,cycling ,tennis,skiing.revamped my bathroom to a shower room,lots of diy projects,3 weeks road trip to USA past 2 years..
My Fitbit stats say it all
Written by
Bazillion
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hi bazillion well i take 3 madopar 200/50 a day why dont you try it as it works for me.i also have sciatica im not sure what the hospital will do next year as it makes things more difficult having both together ooo well ill just wait and see anyway try it you have nothing to lose.regards john.
Would love to take 200/50 3 times a day but if I do my mouth seizes up can’t talk and can’t stop moving about with dyskinesia!Thats why I have to stick with low dose more often!
fair call bazillion you got to stick with whats best for you well i have had sciatica for about a year now im still waiting for them to call me as this will be the third time they will try to fix my sciatica some time next year hopeful it will be early next year..as for excercise i go walking every day mostly 5 kl a day plus exercise im 80 kg i still have abs on my tummy can still touch my toes im 73 on the first of dec i have p,d for about 6 years now so i tell every one get up and keep busy i walk around theses places every day i never get colds or flu so thats a plus by the way i used to have the name mother father when i was in the hospital for a month i sort of lost my mail .it was hard to get the name back again so i had to put another name.regards john.
Good on you , you seem to be doing great. I'm now 6.1\2 years since diagnosed. I was playing tennis but then could not react to the ball. So I've gone over to table tennis. This I'm playing much better. Also improving well. I also enjoy cycling but do very little. I'm 63 February. I'm on mirapexin, sinimett, raginalin.
The secret is to keep going.At the European Parkinson’s centre I learnt how much I was capable of doing and keep living each day as if it’s the last and never putting off till tomorrow what I can do today,living life to the full.
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HDT & TTFD–In my case, HBP was a return of symptoms and not a side-effect of TTFD.
Update on the Stanford study
Oral ANVS401 Improves Patients’ Motor Skills in Phase 2 Trial
To those newly diagnosed! There is hope!
Have you been misdiagnosed? I might have been.
