• How do you feel today?

    Posted by Deleted User on March 16, 2019 at 8:04 am

    PD seems to cycle in and out of my life a daily basis, sometimes hourly regardless of when I take meds.   My symptoms can really be acting up and sometimes, I ‘almost’ feel normal.  How about you?  Do your symptoms fluctuate?

    Deleted User replied 5 years, 1 month ago 3 Members · 10 Replies
  • 10 Replies
  • Claudio

    Member
    March 21, 2019 at 4:44 pm

    Symptoms fluctuation is an “intriguing” issue for me. Because, I think, the more I understand how symptoms fluctuation works, the better can be my quality of life.
    I see 2 different types of fluctuations: the “unexpected ” and the predictable. Than I split the former in
    >Negative fluctuations, possibly due to some delays (food conflicts? emotional stress?) in the difficult journey of meds to the brain or due to other chemical process (disturbed sleep) in the brain.
    >Positive fluctuations: a few hours after a serious workout I may feel off of symptoms even if I’m not covered by levodopa. The same I may experience if I attend an unusual manual (diy job) or mental (working with Excel) task.

    When we come to the predictable fluctuations, due to the effectiveness curve of drugs, I set a spreadsheet (that generates a graph) by which I process the half life, on me, of every single dosage of ldopa I assume. In such a way, I try to optimize the time of assumption of drugs (with doc I negotiated a discretionary power by which I can decide on my own within the range of 300 and 400 mg of Ldopa daily) in order to skip meals and have negative fluctuations when I don’t need to be phisically active.

    Any “best practice” on managing symptoms fluctuations will be welcome!

    • Deleted User

      Deleted User
      March 21, 2019 at 6:09 pm

      Claudio, you seem to have a good system and are in touch with your body.. We are all so different in how our symptoms manifest and what works to alleviate them. Thanks for sharing.

  • Lou Hevly

    Member
    March 24, 2019 at 10:26 am

    So far, aside from mild tremor when I hold a coffee cup or spoon, my only symptom is Restless Leg Syndrome, which Mirapexin seems to have cured. I feel great.

    • Deleted User

      Deleted User
      March 24, 2019 at 10:28 am

      Glad to hear that Lou, do you have more good days or bad days?  Do you attribute that to anything specific?

  • Lou Hevly

    Member
    March 24, 2019 at 11:51 am

    No, no bad days, thank heavens. Just plugging along. The worst so far is that I’ve had to give up playing music

  • Lou Hevly

    Member
    March 25, 2019 at 3:16 pm

    I played clarinet and guitar and gave them up due to frustration.

    Here’s a link to what I used to do: http://louhevly.com/music/

    • Deleted User

      Deleted User
      March 25, 2019 at 1:19 pm

      hi Lou, thanks for sharing that.  i cannot approve your post since your URL goes to a page with a link to The Gutter People which has an obscenity on the photo :-(.  Typically, the only links within a response we can approve are from known PD  and or medical/health websites.

      • Lou Hevly

        Member
        March 25, 2019 at 3:40 pm

        Hi Jean, no problem, I’d forgotten about that stupid postcard! I certainly agree it’s better to restrict links to PD-pertinent ones.

      • Deleted User

        Deleted User
        March 25, 2019 at 3:44 pm

        Thanks for understanding Lou…

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