• This topic has 4 replies, 2 voices, and was last updated 4 years ago by Anonymous.
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    • #11500
      Anonymous
      Inactive

      Aside from the PD symptoms themselves, the fact that it is so hard to pinpoint what helps or worsens my symptoms or if my disease is progressing is so frustrating.  How do you deal with this dilemma?

    • #11608
      Michael Morale
      Keymaster

      Hey Jean – My ID’s are up and running. Your frustrations were the same concerns my father had. I would give anything to give you an answer. Are you being followed by a neurologist? My father’s neurologist was really good about answering his questions.

    • #11620
      Anonymous
      Inactive

      I am being seen by a neurologist, but he is NOT a movement disorder specialist.  The pickings are slim where I live on eastern Long Island.  I have taken my health into my own hands and use the doctor for guidance on the meds.   I have seen 8-9 neurologists for opinions, one of them a top NYC movement disorder specialist and a phone consult with a highly regarded specialist from Gainesville, FL, and the consensus is all the same, take medication.

    • #11621
      Michael Morale
      Keymaster

      I’ve noticed the same thing with quite a few different diseases. It seems like they want throw another medication your way, almost hoping that it will work. I know your frustrations are probably through the roof right now. Have any of these doctors made a referral to someone who could better handle your condition or do they think that meditation is the only way to help?

    • #11622
      Anonymous
      Inactive

      Medication always seems to be the solution per mostly all the doctors I have seen.   As for referrals, I have seen 2 of the top specialists in the country, Dr. Okun (Gainesville, FL)  and Dr. Bressman (NYC) and their response is pretty consistent with other doctors I have seen.  I’ve also been told to exercise and keep moving, but, I knew that.

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