Hello!
I have finally settled back into my "normal" life and saw that you were looking for some input. Let me give you my "pre-Spheramine" days:
I wore a brace due to terrible dyskinesia.
I could not walk unassisted for 10-20 feet (I most always used a cane or walker)
My "off" time was about 55-60% of my awake time.
My "on" time was functional, but still not very good - with trouble still walking (due to balance problems), rigidity, and bradykinesia.
Today, seven years after unilateral Spheramine (only one side of my brain), I have incredible "on" time - the examining neurologist during my last visit said "I can't tell that you have PD!"
I still have off time (and pretty bad "freezing" occurs at times), but this may happen only 1 or 2 times a day and is much shorter in duration.
My dyskinesia seems to have worsened lately - I added another Comtan to my daily medication regime to try to control the freezing, which may have caused more dyskinesia. But I would rather have dyskinesia than akinesia (no moving).
I am not, nor have I ever been, one to tremor. Just at the onset did I have a slight resting tremor. I have read and heard doctors say that "tremor" means you are not as advanced in the disease process. I dont know how true that is, but I hardly have a tremor at all.
It wasn't difficult for me to choose rather or not to have the surgery (if you read some of the links to articles I wrote in this thread, you will get an idea of my thinking on this). And I guess about the best testimony I can give for Spheramine is this: If I could have the other side of my brain done, I would in a heartbeat. I suppose that will have to wait for phase II results.
Entering a clinical trial, especially one that involves invasive surgery, is a decision only the individual can make, with the support of his/her family and friends. You can choose to deny or ignore your disease - give in to it and just let what will be happen - mange it with treatments, medications and therapies - or fight it. I am doing the last two.
Best to you.
Peggy
