Pkpd

This might be of interest: just to say I have been diagnosed with Parkinson's now for 3 years, great support from the Parkinson's org & Parkinson's nurses. I have been on Sinemet Plus for about a year & finding it helpful. However, the last few months, I have been experiencing dystonia on one foot at given times (just before meds are due). Can I say that Fish Oil & Folic acid seem to be making a difference . I still get it but not as much

PS .I had been taking vitamins for a while (ha ha..nearly 40 years!!!!) & had cut back for a few months...so jsut do a GOOD multi, Vit C, gingko ,CO-enzyme Q10 & the above

Hi PKPD

It is always interesting to hear what supplements etc people find helpful. I get a dystonic foot sometimes if I walk barefoot. Putting slippers on seems to get it under control pretty much every time.

I agree with you about parkinson's nurse specialists. They are fantastic

Elegant Fowl

 

I'll try slippers-but it usually happens when I'm at the gym or walking in the street..lasts about 7mins-but still..

Can I recommend a book? "Stop Parkin' and start Living" by John Coleman. Awful title but it's worth reading although I didn't agree with all of it. He;s an Australian naturopath with Parkinson's so it's really interesting.

 

PKPD

Thanks for the tip. I'm having the same problem so I'll try the fish oil. It's soooo annoying :-/

Did anyone read about the leukemia drug being used to treat Parkinson's in the US in yesterday;s Independent? It's called NILOTINIB

It has had good results by clearing out the proteins that clog up our PD brain cells & are responsible for killing them off, thus affecting dopamine production. Doctors here are sceptical..I guess erring on the side of caution..but it would be wonderful