"about the thiamine regimen.." facebook
parkinson's high dose thiamine hcl
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Hello @jansheridantfac

I see that this is your first post on Connect, welcome! I am sorry to hear that you are having problems regulating your Sinemet.

Our stories sound very similar. My PD symptoms began at the same age as yours, however, it wasn't easy to diagnose (no tremors then and still none now, etc.). The first neurologist I saw thought it was early stage MS, the second one said early stage PD and the third said I might not know until my symptoms got worse. To make a long story short, when my symptoms did get worse (mainly balance and foot dragging) I saw another neurologist who put me on Sinemet and there was a vast improvement.

My symptoms now tend to be minor compared to what you report. One suggestion (you might have already tried this) is to add Stalevo to your drug regimen. Stalevo has the same ingredients as Sinemet, but one additional ingredient, Entacapone, which makes the drug last longer. You can also take Entacapone alone and add it to your Sinemet. The cost of this med has increased significantly over the past two years. (Drat those drug companies and their arbitrary increase in price of older medications which should all be Tier 1 - but I digress).

Another thought, I live in SE Michigan and I have a friend who has used a Sinemet pump (part of a clinical trial). It works quite well for her. I'm not sure if it will be on the market as a result of the clinical trial, but you could look into it. It works somewhat like an insulin pump and gives you a steady stream of the med.

Since you exercise on a regular basis you are probably familiar with the BIG program both for movement and voice and you have probably been involved in Physical Therapy. I find that my need for PT is about twice annually as my balance and general coordination tend to decrease without that constant treatment.

I look forward to hearing from you again, @jansheridantfac ! If there are any other questions or thoughts you have will you please post them?

Just wondering (and only if you want to share more) has your sleep, handwriting or voice been affected by your PD?

Teresa

My story is very similar! Diagnosed at same age and had DBS 5 years ago. 2 yrs ago had battery change and now need another one! Anyone else going through batteries so quickly?