Quote:
Originally Posted by made it up
Hi Gerry,
I'm a fan of DBS having had it for over 13 yrs.
I found it upsetting both before and after the procedure what I perceived as negativity towards what could be and was a good outcome so please hear me out.
I saw on your posting you take Rytary 3 or 4 x Daily.
Is that the only anti parkinson med you're on?
It doesn't seem much when stretched to a 24 hr period and my thoughts are if that is your current drug regime then see a movement disorder Dr and see what he/she comes up with and go from there for maybe a yr or 2 or 3 before considering DBS.
Either way good luck and best wishes.
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Thanks for the kind wishes, Made it up. Rytary is all I take. My current Washington and past California neuros are both movement disorder specialists. The current one is reluctant to prescribe an agonist since I have fainted in the past.
Stalevo, which I tried, has a short on time, shorter than Rytary.
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The former neuro prescribed Neupro patches but I balked at the price so I never filled it.
My major problem has always been having little on time. A Rytary dose lasts 2 hours at best and sometimes doesn't work at all. Food is like an off switch.
Neither neuro was big on the MAO-B inhibitor possibility with one telling me that they don't work.
Neither neuro wanted to talk about unconventional approaches like zonisamide or palmitoylethanolamide. The new doc just said, "I don't prescribe it." She probably never heard of it. There isn't much time to discuss the possibillities, either. Before I can get going she announces, "Time's up."
The neuro said it was time to consider DBS even though she didn't think it would solve my walking problems. But she said it might so I said I would roll the dice even though a body MRI or diathermy after getting wired could kill me, among other warnings.
But I'm an optimistic guy and I believe I will do fine with DBS. How much bad luck can a Parkie have In one life?