This topic contains 10 replies, has 5 voices, and was last updated by  Ally 1 month, 2 weeks ago.

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  • #14487
     Jean Mellano 
    Keymaster

    The saying goes: “If you’ve seen one case of PD, you’ve seen one case of PD”  We are all different in terms of how this disease affects us.  For me, my quality of life is most impacted by extreme fatigue.  I try not to make too many commitments, especially for the afternoons when I am really tired.    What symptom impacts your the most?  How do you deal with it?

  • #14646
     Lou Hevly 
    Participant

    The only real symptom that affects me is Restless Legs Syndrome, and the Mirapex pretty much solves that.

  • #14650
     Jean Mellano 
    Keymaster

    Lou, that is great that you are able to keep your symptoms under control.  I cant seem to shake this total fatigue I experience; now it seems to start as soon as I get out of bed.

  • #14709
     Marcus Sutherland 
    Participant

    Tremor definitely is the worst! Anxiety that comes out of nowhere hard to schedule meals around medication.

    • #14759
       Ally 
      Keymaster

      Marcus, is the anxiety related to PD or have you always experienced it? I have a hormonal mood disorder that manifests as anxiety and I’m wondering if long-term use of SSRIs to deal with it will be damaging to my brain, but I also don’t want to live with anxiety. Have you found any coping mechanisms that help?

  • #14714
     Jean Mellano 
    Keymaster

    i do not experience external tremors, only internal.  i can even imagine what having external tremors must be like.  anxiety is a new one for me, but cbd oil usually can calm me down..

  • #14722
     Manuel Fernandez 
    Participant

    Besides the shattering impact of being diagnosed with PD and undergoing the ensuing effects, there are nevertheless aspects of the resulting new life that, strangely enough, rather improve on our quality of life. Four years ago, when my doctor detected a suspicion of PD she asked me what I was currently doing with my life. I told her I had retired 10 years ago and had spent those years mostly sitting in front of a monitor writing up my research work for publication. She wisely told me: “Well, now you must stop doing that and start using your body. Walk, jump, dance, work with your hands, be active; that’s what your body is made for.” Overburdened with fears then I did stop my editing work and, at 78 years of age returned to my earliest trade: I was originally a carpenter 60 years ago, so I began by building a stock of power and hand tools and began to make small items of furniture I felt were missing in our house. Working with extreme care, my trembling hands did not produce any self-injury when handling power tools and I could even use sharp chisels keeping all my ten fingers intact. Even when PD did not exist for me, I never thought to be able to do/make manual crafts. My garden also benefited from my PD as well as my self-esteem and I must thank PD for that. I have come back to my writing up now but never for more than four hours in the day. Attaching a felt pad below my mouse avoids the effects of my shaking and I no longer get multiple identical characters when trying to key-in just one on my keyboard.

    • #14726
       Jean Mellano 
      Keymaster

      that is outstanding Manuel.  I am sure your positive outlook has served you well in dealing with this disease.

    • #14758
       Ally 
      Keymaster

      It sounds like you have a really wonderful (and astute) physician, Manuel. Thank you for sharing your experience. It will likely help someone else in the early stages of their diagnosis.

  • #14728
     Manuel Fernandez 
    Participant

    I was hesitant to write what I wrote Jean. I have two close friends who also suffer from PD and the state is so advanced that it would be utterly impossible to do any of the things I mentioned. Maybe I should have added that everything I do has required special arrangements. I do my gardening mostly sitting on a stool, I am writing this with a pillow on my lap so as to support my arms and keep my hand steady and I always keep at hand a walking frame, although I have no difficulties in walking on my own, albeit hesitantly.

    • #14729
       Jean Mellano 
      Keymaster

      Manuel. What you wrote is fine.  It can give many of us hope.  Your fighting attitude in not letting this disease stop you from living your life is admirable and inspirational.  We are all affected so differently by this disease.

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