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    • #25801
      Elaine Droz
      Participant

      I’m a 76 year old woman who has had PD for about two years now. The most problematic issues I’ve experienced are fatigue and brain fog. I also have some tremors. I’ve tried Sinemet for months, but it seemed to cause more problems (e.g., dyskinesia) than it helped with. I’ve been taking LDN for a little over a month now, so still assessing that.

      My questions are:
      1 – Has anyone found anything that has worked to reduce fatigue or brain fog?
      2 – Has anyone tried LDN, and if so, what results have you experienced?
      3 – Does anyone have positive experiences with any alternatives to Sinemet?
      4 – Has anyone tried HIFU/MRgFUS for PD Tremors?
      5 – Has anyone tried the experimental glove treatment for tremors?

      Thank you!

    • #25809
      Bert Shure
      Participant

      Hi Elaine:

      I switched to Rytary because of brain fog and afternoon fatigue.

      My wife hated it when I would doze off while talking to her in the early afternoon.

      I feel that it reduced brain fog as well.

      It is a lot more expensive than generic Sinemet, but it works.

      I reread your email, and I’ll take a stab at your questions.

       

      My questions are:
      1 – Has anyone found anything that has worked to reduce fatigue or brain fog? Yes, Rytary
      2 – Has anyone tried LDN, and if so, what results have you experienced? No.
      3 – Does anyone have positive experiences with any alternatives to Sinemet? Yes, Rytary.
      4 – Has anyone tried HIFU/MRgFUS for PD Tremors? No.
      5 – Has anyone tried the experimental glove treatment for tremors? No.

      Cheers,

      Bert

    • #25814
      Sherman Paskett
      Participant

      For years I have taken Sinemet (carbidopa/levodopa) and Rasageline but last year I was in a fog all the time and struggled to stay awake during the day. The C/L dosage was not sufficient to control the tremor but left me in dyskinesia about 6 hours a day. Off time had grown to 2 hours out of every 4, so about 8 hours a day. The Dr. added Amantadine to the cocktail a few months ago and it is as if the PD clock has been turned back 5 to 8 years.

      Sinamet is the gold standard for PD treatment. Rytary is still just carbidopa/levodopa (e.g. Sinamet) in a time-release form. Why it is so horribly expensive is a mystery. Not familiar with LDN. Anyway, Amantadine solved my problem,

      Amantadine is added when the C/L dose becomes high enough to introduce dyskinesia before effectively treating tremor. It eliminated off time for me and I rarely notice tremor anymore. I have some mild dyskinesia sometimes in the afternoon, but mostly the PD symptoms are gone. So, you might ask your Dr. if you could give Amantadine a whirl along with your regular C/L dose.

    • #25815
      Kathleen Ernst
      Participant

      Hi Elaine
      I have not tried any prescription medications other than Sinemet. I did however start taking a prebiotic/probiotic/postbiotic after reading articles about PD and gut health and brain fog. I still have brain fog but not as severe and I’m now on Duloxetine for depression which has increased some energy even though I still struggle with fatigue. The thing that helps me most with fatigue is pacing myself/taking a lot of breaks—I’ll set timers as a reminder to take my breaks.

    • #25816
      Kathleen Ernst
      Participant

      Hi Elaine
      I have not tried any prescription medications other than Sinemet. I did however start taking a prebiotic/probiotic/postbiotic after reading articles about PD and gut health and brain fog. I still have brain fog but not as severe and I’m now on Duloxetine for depression which has increased some energy even though I still struggle with fatigue. The thing that helps me most with fatigue is pacing myself/taking a lot of breaks—I’ll set timers as a reminder to take my breaks.

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