I’m new to communicating about my PD to others including other PD patients.

[Softballman]

Hi I was diagnosed almost six years ago with PD. I was thinking or hoping that Tasigna could be a means to slow or halt progression until something better comes along. Until recently my symptoms were more of nuisance with left foot tremors that were corrected with Sinamet. 4 times a day. However over the past year I developed dystonia in that foot in morning when I wake up. but the past couple of weeks it’s progressed to where is pretty much 24/7. It’s very uncomfortable and make walking and difficult since I play a lot softball and golf. So my question is there anyone using Tasigna with similar doses that are being used in the current clinical trials having any luck slowing or halting progression. I’m 66 years old with a wonderful wife and two grown children and I’m suddenly all in on doing something about this and not going down without major effort. I look forward to getting to know the people on this site and hopefully by sharing information and experiences so some of us will improve physical and mentally.

[condor39]

I suggest you ask this question to a specialist in movement disorders . As you may need more, or less Sinemet.

[JAS9 in reply to condor39]

I agree. There's an important difference between PD dystonia and dystonia caused by too much L-dopa from your meds. But they can easily appear to be similar.

[jimcaster]

I encourage you to use the search function (click on what looks like a magnifying glass) and search for posts regarding thiamine, B1, and Dr. Costantini. At least in the 13 months I have been on this site, Vitamin B1 (thiamine) has been the most discussed topic on this site. Search also for dystonia and magnesium. Also, Google "high intensity exercise for Parkinson's disease" and read everything about it...and then, most importantly, exercise very intensely (out of breath and drenched in sweat) at least three times per week for 30 minutes. Good luck!

[jimcaster in reply to jimcaster]

If the dystonia prevents high intensity treadmill workouts, try cycling on a stationary bike. Google "Dr. Jay Alberts cycling for Parkinson's disease. "

[Softballman in reply to jimcaster]

My doctor recently prescribe Artane for my left foot Dystonia. I did a little research on it and the side effects sound terrible. Anyone here know or use this drug.

[Isthistheone]

My comments/suggestions are rooted in my own experiences. You will find out that this disease attacks people differently. You have to find out what works for you. Ensure Parkinson's disease is what you have. Seek out neurologists that are Movement Disorder Specialists. This disease for most of us is relentless. It took two years and three neurologists before I got it right. Neurological disorders don't respond to meds like bacterial infections.

Some meds need to be taken on an empty stomach. Others can be taken with food as long as there is minimal or no protein present. You will become a disciplined eater!

There are many intelligent and well meaning people on health unlocked. Listen and follow the advice of your Neurologist Movement Disorder Specialist.

There is no approved medication that will slow down, stop the or reverse the progression of PD. JMO, in two years there will be!

JMO I believe Tasigna will be one of these. This drug is not for everyone!! Due diligence, medical surveillance required prior to startingand during Tasigna therapy.