Connect
← Return to Parkinson's disease will be curable with cortisol
Discussion
Parkinson's disease will be curable with cortisol
Parkinson's Disease | Last Active: Jul 27, 2023 | Replies (31)Comment receiving replies
I was on Amantidine at the beginning and that really helped my gait and stiffness. Unfortunately 2 weeks later I developed severe skin rashes all over so that had to be stopped. Was also on Azilect prior to Amantidine, that helped, but it also caused skin rashes, obviously that was stopped. I am now on Stelavo, Primaxine , also Neupro patch ; they don't work that well but I can function. They are considering doing DBS on me, but decision has not been made.
Does anyone have experience with DBS and would like to share it?
Replies to "I was on Amantidine at the beginning and that really helped my gait and stiffness. Unfortunately..."
My experience with DBS occurred in 2021. After the scars healed and a lighter parkinson's cocktail prescribed, I spent a longer period with the surgeons physician associate than with the surgeon itself. The PA got my left hand without tremor after about the 3rd session. The right hand was another story . My right hand is my dominant and after two years it still has tremors. I've seem to have lost parts of my brain which formerly bought me great passionate i.e. crafts, hand writing/ printing that I and others could read what is written. If asked "would you do this again?" My response would be "that depends". How bad are your tremors? Are you willing to give up part of your intelligence? Do you fully understand both the limit of the expectations and the possible side effects. You are on the right path, talk to as many patients as you can and doctors as little as possible.
i HAD TOO MANY SIDE EFFECTS AND i WAS TIRED ALL THE TIME.
Connect
Hello @tuyetnga
It sounds as if you have tried a lot of medications and you and your medical team have been searching for answers. If you are interested in learning more about DBS, I would encourage you to read the narrative by one of our members. Here is the link to that discussion, https://connect.mayoclinic.org/discussion/deep-brain-stimulation-dbs/.
I would encourage you to seek out a Parkinson's Center of Excellence if you are thinking about DBS. Here is a listing of those centers from the Parkinson's Foundation website, https://www.parkinson.org/expert-care-research/centers-of-excellence/listing.
What is your most difficult symptom right now, @tuyetnga?