This topic contains 10 replies, has 3 voices, and was last updated by  Jean Mellano 3 months, 4 weeks ago.

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  • #13995
     Jean Mellano 
    Keymaster

    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?

  • #14054
     Claudio 
    Participant

    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!

    • #14055
       Jean Mellano 
      Keymaster

      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.

  • #14069
     Lou Hevly 
    Participant

    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.

    • #14070
       Jean Mellano 
      Keymaster

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

  • #14082
     Lou Hevly 
    Participant

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

  • #14090
     Lou Hevly 
    Participant

    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/

    • #14091
       Jean Mellano 
      Keymaster

      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.

      • #14103
         Lou Hevly 
        Participant

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

      • #14104
         Jean Mellano 
        Keymaster

        Thanks for understanding Lou…

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