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    • #13999
      Jean Mellano
      Keymaster

      Everyone one with PD progresses at different rates.  Do you think your PD is moving quickly or slowly?  If quickly, are you noticing new symptoms or are existing symptoms getting worse?

    • #14018
      Thamer
      Participant

      Hi. How to know and measure progressive of Parkinson. Slow or fast are means different things to different patients

       

    • #14025
      Jean Mellano
      Keymaster

      Thamer, for myself, I have noticed I am clumsier, my fine motor skills such as typing are getting worse.  I was diagnosed in 2015, so I am guessing my PD is progressing slowly.  I constantly analyze my body and how it is performing, a habit left over from my athletic days.  It is difficult to determine since it is subjective.

    • #14077
      Lou Hevly
      Participant

      Very slowly, maybe because I’m taking:

      Vitamins C, D and a B complex, CoQ-10, Citicollina, Omega-3 and lots of cardamom. This apart from the Azilecte, Sinemet and Mirapexin. I’m a pescatarian and avoid refined sugar. There’s no way of knowing how I’d be if I weren’t doing all this, but I thought I’d mention it.
      There’s a nifty tool on GooglePlay called the Vibration Meter, which measures the amount of tremor you have just holding your cell phone. First of all, I have found that this tremor can vary a lot during the day, which calls into question tests that check progress quantitively measuring tremor. My tremor has increased from being in the 20-30’s in 2015 to the 30-40’s now.

       

      • #14079
        Jean Mellano
        Keymaster

        Thank you Lou for sharing your regimen.  I agree, there are so many things we may try in addition to meds, it is hard to say what is working and what is not.  I am hesitant to stop taking any of my supplements in fear that I might get worse.  I too try to watch my sugar intake,although I am addicted and take a multitude of supplements.  That vibration meter you mentioned sounds interesting.

    • #14035
      Claudio
      Participant

      May be I’m wrong, but I think it’s not so difficult to assess the progression of Parkinson. If you really want to know it, there is the UPDRS scale (Unified Parkinson Disease Rating Scale), that you can do at intervals of time and you can almost complete on your own. Apart from that, you can invent some “proxies” to have some answers . I (diagnosed in 2015), a few months later, handwrote 20 lines  and kept them. From then, every year I repeat this silly exercise (obviously you can get worse in other symptoms and not in handwriting, or the opposite!) and compare my writings. Almost every day I make balance exercise, standing on one leg, may be just to wear trousers… So far is fine… so far… but I think will come one day that I won’t be able to do that! Anyway the best meter I think is the UPDRS questionnaire.

      • #14036
        Jean Mellano
        Keymaster

        Claudio, you have some excellent suggestions and I love the handwriting idea!

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