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    • #18069
      Ally
      Keymaster

      Often while I’m reading through the conversations in this forum, I come across a lot of really good advice, but we all have experienced giving or receiving bad advice.

      Has anyone ever given you bad advice related to your Parkinson’s diagnosis? Who was it, what did they say, and how did you know it was bad advice? Did you confront them and tell them so?

    • #18120
      David
      Participant

      Hi Allie, we should all be providing feedback positive and negative IMHO as you suggest. I have been on the forum a short time, and haven’t received bad advice that i am aware of, from participants. However on the Parkinsons news site I saw an article about (and advertisement for) a “natural” L-Dopa supplement, which I purchased (two bottles) from a company in Luxembourg for 100 Euros, The product was a powder (they didn’t say that) that needed to be mixed with food, such as yogurt… UGH – I tried it, no beneficial effect and disgusting. I returned the unused bottle after they promised to refund. So far, nothing! So I am once burned, twice shy, but I just ordered Butyric Acid based on a participant;s endorsement and I will let you know how that goes… Thanks

    • #18150
      Ally
      Keymaster

      Thanks for responding, David! I must admit, now that we are fully immersed in the world of Google/Amazon reviews, I will rarely take a chance on a product without doing at least a little bit of research first. Thank you for sharing your experience with the natural L-Dopa supplement. I’m sure it will be helpful to others in this community. Looking forward to your review of the Butyric Acid, too.

    • #18178
      SteveNaive
      Participant

      The worst advice I get all the time is something like David mentioned: “You have Parkinson’s? You’ve got to try this supplement!” Like, they are certain that their FDA-unapproved snake oil with zero science and research behind it will stop Parkinson’s dead in its tracks. Thanks but no thanks. Life is too short to spend my time disproving your baseless claims.

    • #18215
      Mary Beth Skylis
      Moderator

      Steve-

      Sometimes I sift through that kind of information on behalf of my Dad too. It can be really frustrating to see claims that guarantee they’ll change your life. There’s alot of snake oil. But, there’s also lots of research that’s being conducted. Parkinsons seems to be gaining some traction in the research world. And I hope that we DO find some fixes or ways to alleviate the symptoms.

    • #18219
      Olivia
      Participant

      I have the same problems.

    • #18630
      Diane Crosby
      Participant

      When I inquired at my doctor’s office about sleeplessness and other sleep related issues, I was told that they were age related and to take a sleep study, and that there was really nothing other going on related to Parkinson’s.  Turns out that when you look at the details of my several medications that were prescribed by that doctor, they all included potential side effects related to sleep disruption of some sort.  My new (and improved) doctor said that it could be a combination of factors that included both the Parkinson’s and the medications for Parkinson’s which would be very difficult to differentiate on what was driving what.   Funny how getting a more accurate diagnosis of what is going on somehow made my sleep issues easier to deal with.  I now monitor my sleep quality with a Fitbit to make sure that I am getting sufficient sleep overall in the aggregate and have foregone the idea of a sleep study.

    • #18740
      Mary Beth Skylis
      Moderator

      Diane, my Dad was diagnosed with Parkinsons in 2013. And he struggles with sleep disturbances too. It’s interesting how misinformation can impact our understanding about ourselves. Have you been able to adapt your medications or lifestyle to help you manage sleep in addition to monitoring it with a Fitbit?

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