2. Started Azilect soon after diagnoses in 2006. My MDS has said since I am premedicated with Azilect and Requip, much lower doses of levodopa will be needed when I start it and I will ramp up slower. (Her opinion/words)

3. I've started playing Wii and noticed improvements when I play regularly for an hour.

1.My symptoms started on my left side...frozen shoulder (did not know at the time that it was PD),depression, constipation that would not quit and 2 yrs later tremor in left ring finger and pinkie. When the tremor developed I still waited a long time before seeing a neurologist... a bit of denial going on there. By the time I was diagnosed in 06 -07 the Mov. Dis Dr said it was on both sides even though I could not yet tell that for myself but she was right. So to answer you,... 5-6 years. Worst symptoms still on the left side...much milder symtoms on the right side.

2.I did not use meds for about 6 months after I was diagnosed and then decided it was time. some people tolerate them but in my case I had a difficult time with several of them. It took a long time to find the right combo for me with the least side effects

My current and last Dr both said recent research indicated pwp should start meds when their symptoms are bothering or effecting their quality of life....and not try to hold off or wait. Reg. the second part of that ?, I,don't know. ...and last part of that ?....It is my understanding that the meds can help your body protect what dopamine it has...or help it to be more available for use . Will it cause your body to make less of it's own dopamine. ...Really don't know the answer for sure but I don't think so

3.Exercise by far has proved to really help VERY MUCH.
I have read conflicting studies on COQ10 and since my money is tight I have not tried it. I have read that if you decide to use it you need to use a high dose ,,,something like 1200mg per day

Before I was diagnosed I was getting acupuncture for some of the symptoms I later found out were PD. I t was my experience that it did not help. In fact the acupuncturist was surprised when my symptoms were so resistent to being helped. He did not know, nor did I until several months later that I had PD. i discontinued his services at that point.

I just heard a news report this week that said Wii use was beneficial

Were you just diagnosed?

EMD

I was dx'd 3 years ago - I'm 41 now. At the time all of my symptoms were left side and I had very little tremor. I limp hard on my left leg; my left arm does not swing; my left shoulders and back muscles are affected so that I curl up and look "crooked". I take requip and amantadine. Both medications have been increased bit by bit over the past few year.

Now, most recently, I have started having balance issues with my left and right legs. My left hand, left leg, and right leg tremor. I'm definitely not as good at walking, stepping, etc. I trip a lot. But, I can still ride a bike. If I take a sinemet, I can still do my aerobics class. But, I only take a sinemet to do a workout. I avg 1 sinemet per day 3x per week.

The only issue I've heard in holding out on meds is with sinemet. My neuro says if he could release a constant stream of sinemet into my body like an IV, then I could take it. But, the big sinemet high then ensuing crash, cause dyskinesia after awhile. He says that MJFox abused sinemet and that's why he looks kind of bad now. Anyway, his take is that I'm too young for sinemet and should try to wait. Other people will disagree with me on this.

The main point is this - quality of life is everything! Do not stay away from the meds if you're quality of life is diminishing. It's worth it to me to take a sinement if I can get a good workout in. The exercise is much more important to my body than the long term effects from the meds.

I take mirapex and amantadine with the occasion sinemet tab. I had a hard time with requip - it made fall over asleep. Mirapex worked better.

It's true that Sinemet will eventually lose effect (once the ceiling is hit). I've been on Sinemet since I was diagnosed 8 years ago (at age 33). The argument on the other side was: Why would I not use the best drug out there now, knowing that with time, more (and better) drugs will be unleashed? I am currently on Stalevo, which is a combination of Sinemet and Comtan. I certainly do struggle with dyskinesias (people tell me that I move like MJ Fox); but, that is simply a side effect of the medication. Once the dyskinesias stop, my functioning is great...almost normal!

Good luck to each of you on your PD journey!

Mihai

Last Edited on 27-Jun-2009 7:36 AM

Last Edited on 1-Jul-2009 10:05 AM