I live in a city that has at least 6 major hospitals that treat Movement Disorders as a speciality.I do attend several support groups with my wife for 15 or more years and the big changes over the years, is an increase in the need for exercises & proper diet with supplementation of certain vitamins ,other then that, I always say "its the same ol Sinemet" (Madopar in UK) ,truly nothing new in the drugs arena to help us yet .
What is great about support groups is to meet people that offer advice ,practical advice or shortcuts as they arise and to establish a buddy system if needed to shop or sit with a patient who may be alone.
My wife takes her DA Ropinorole only towards the end of the day so as not to nod out and I also wish to add that she has never been irrational on her DA these last 15 years,
Her hallucinations are many ,each and every night plus, she talks vividly while asleep oddly perhaps in the morning, I am the only one who remembers those episodes ,she does not and for her it is not scary at all.
PD is such a unique disease ,I have even heard younger Neurologists mention that it may not be a clear cut disease but a syndrome of several disorders ,low blood pressure, defects in the blood brain barrier mechanisms that may allow metals that non PD folks can filter ,into the brain causing cell damage.
I could go on and on about different therapies and theories ,we have tried acupuncture ,Qi Gong exercises TaiChi (Chinese exercises are big in NY for PD) & even PD "boxing" developed at a hospital here to improve eye ,hand muscle coordination, all have some degree of help for some folks.
One thing my wife has been faithfull to do from day 1 as suggested by her PD Doctor is stay on an enysyme called CQ-10, there is literature on the web about this supplement on the web, Our Dr. thinks it may help PD symptoms and I must say my wife is never tired ,the nodding she did have was taking her DA during the day but not from fatigue.
Just a few thoughts,
Sorry for the typo's here my edits are not working well in preview .