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i was diagnosed with pd 14 years ago, medicated a layman...

  1. 54 Posts.
    i was diagnosed with pd 14 years ago, medicated a layman couldn't tell i had pd, unmedicated i shuffle and my muscles are rigid, my voice is soft, i stutter, my handwriting is tiny and unreadable. i am an invalid when unmedicated (OFF), almost normal when medicated (ON). I can go from ON to OFF in 5-10min. I have no tremor. My point is i don't go out in public when OFF so people only see me at my best and they might not notice much improvement because i have no tremor and tremor is often not helped by oral meds. if i was in the trial i would have my head bandaged for a week, i could tell anyone who asked what happened that i fell . if i improved, say my tremor was less, i could say i added another pdmed. so it wouldn't be impossible to hide the fact i was in the trial even from friends or other parkies. I should say i qualified for DBS. DBS was approved even though it doesn't cure or slow progression. I decided against it because i live alone, not enough help if there was complications and health insurance uncerntainty with obamacare. if i can get the same benefit as with DBS and slow progression i can't imagine why N.Z. wouldn't approve it or at the worst ask for a larger study. placebo affect has to be ruled out.

    not getting worse over 6 months would imho be highly significant. getting better would be amazing. but imho until the study results are unblinded, your're rolling the dice here. best of luck.
 
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