I was diagnosed with Parkinsonism in 2015 at the age of 55. Parkinsonism is an umbrella term that refers to conditions that cause slowed movements rigidity (stiffness) and tremors. These conditions can happen for many reasons. I was given Carbidopa/Levo and by 2017 my upgraded the diagnosis to Parkinson’s Disease. Living with left side tremor, my left hand has cramping and can be painful. One year ago I step to Dystonia from my Carbidopa/Levo, and was put on Amandine for the (wiggles) Dystonia. I was referred for DBS a year ago and will be going on Aug 7-9th for preliminary testing and to schedule my Deep Brain Stimulation Surgery My Srmytoms are getting worse . I currently am taking Carbidopa/Levo ER 50/200 4 to 5 x per day and Amandine 100mg 4 x a day. I found on Tic-Toc that I was not alone on this Parkinsons journey. I am grateful for the Parkinson’s posts. There is no support in my area where I live. I attend an online support group that is in the virtual world of Second Life. I am hopeful my DBS surgery with be a success. And I will be able to Advocate for Parkinson’s DIsease.
Welcome to the community Wendy. It’s great to have you here.
I’m particularly interested in your journey given that you are about to get DBS surgery. I just got a evaluated by an MDS yesterday and I was told that I’m a good candidate for the surgery as well. I will now begin the preparation process. Please keep us posted on your progress.
In regards to Amandine did you find out that has helped? I was offered it yesterday but I declined. I’m always reluctant to take on more medications.
Hey Wendy! Good to see you here♥️
Yes ! the Amandine was a life saver all wiggles as my called them went away
Hi Wendy. Yes me too Mike I am really interested to hear everyones DBS stories
I am leaving Sunday for my first of 8 appointments for the preliminary testing for DBS surgery
Hi There good to see here also