Parkinson's disease

[Hoolahoophop]

Don't know what to think or how to help. My brother has just been diagnosed with Parkinson's. He's 36. Lots of it in the family so we are familiar with the disease. But never expected it to hit so young.

hoola I am sorry to hear that, I assume he has some specialist input from nurses etc. Does he have a young family? How are his symptoms at the moment?

He and his wife were just planning to start their family. He hasn't seen a nurse yet. Just a consultant who basically said you have Parkinson's here are some drugs (which he isn't taking in case he can take part in any research) he has fairly obvious tremors, slow movement and a bit of a stare. It's not great.

Why isn't he taking the drugs? Have any research studies been mentioned? Generally speaking, clinical trials are on patients that have already tried conventional drugs. Unless he has been assessed for something specific it doesn't make sense to wait for a trial to come up and suffer in the meantime. Parkinson's is an area where there haven't been very significant advances in a long time. for you all.

Ah that's a bit rubbish for a life long progressive disease, not all drug trials are related to people already taking drugs it can be based on age or sex, however, if he has progressive symptoms for a young man he needs to take the drugs. I can't remember off the top of my head but the Parkinson's disease charity might be a good place for information. I wish you all the best.

to you all. It hit my dad hard when he was diagnosed in his mid sixties (we had no family experience of it), i can't imagine how your brother must be feeling right now.

My dad was told to hold off taking drugs for as long as possible so that they would have a better effect once he did take them. He probably delayed starting them for 12-18 months and disease progression was fairly slow for the first 8 years. It's only within the last two years that he's given in to using a wheelchair when he's out and about.

Exercise seems to be one of the biggest things for holding off symptoms. That and diet. This guy has a very interesting blog which might be of interest to your brother? I guess drug trials will depend on his health authority. Unfortunately my dad's HA is pretty poor and there isn't the funding for him to be referred onto my local one where there would be other (more experimental) treatments available to him.

He has been refered to a consultant at UCLH because he is so young genetic testing is of interest and some of the studies his wife has been looking into (she's a paediatrician so has medical background if no knowledge in this area) need recently diagnosed volunteers who are yet to start the drugs. His consultant didn't really give any information about progression or side effects from the drugs but some reading says the drugs become less effective over time. So if you start to very young you have nowhere to go. He was only diagnosed in December so hoping to swap to a better consultant and get more information before he commits to a path which limits his future options. At the moment his symptoms are not really effecting him, more the people watching him. He's a very fit guy, runs, cycles, does some adventure sports. Will look at the blog you suggested what, thanks for the advice and support.