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    • #22936
      Fred Marchant
      Participant

      My spouse –in the seventh year since her Parkinson’s diagnosis–fell and broke her hip last June. Following a partial hip replacement surgery, she developed a “multi-focal lower limb dystonia,” or what is also called foot inversion. The resulting postural instability has left her unable to walk on her own. She has now had two Botox treatments, and there has been a slight improvement in one foot, but she is still dependent on a wheelchair for basic mobility. She works with a Physical Therapist twice weekly, using a walker, and that work helps too. But I’ve found it hard to find online useful material about this dystonia and its relation to Parkinson’s. If anyone has information about and/or experience with this issue, we would be deeply grateful for any and all suggestions, advice, practical tips.

       

    • #22959
      Robert Li
      Participant

      Hi Fred, I am writing a website just about this subject.  I don’t know much about foot inversion.  However, I have seen it mentioned in passing with respect to too much manganese deposited in the basal ganglia (we’re talking micrograms).  Manganese can come from surgical implants, liver issues, or industrial air pollution exposure years ago, especially if vitamin D levels are low, and is a risk factor for both PD and focal dystonias.  https://dystoniahelp.org

      • #23353
        Trish K
        Participant

        I get dystonia. Botox didn’t help. Try artane. Helps but I take a long time to tolerate up dosing

    • #23133
      Fred Marchant
      Participant

      Thank you Robert for this note, and for the link to your website. I would look forward to more conversation in the future . All good wishes. -FJM

      • #23180
        Robert Li
        Participant

        Thank you Fred for the kind comment, it helps motivate me to work on the website, which is a bit daunting.  I will let you know if I find more information about foot inversion!

    • #23191
      Rebecca Tarver
      Participant

      I get toe curling and foot inversion when I’m low on dopamine, especially with exercise.

      Take a look at the website of Joaquin Farias — he has a program for dystonia that’s quite time intensive, but very interesting and apparently effective for some people. Look at the before and after videos.

      It’s an online program and not expensive.

       

      I’m not doing it yet, but I may end up there…

    • #23199
      Fred Marchant
      Participant

      Thank you Rebecca! I am going to study that FArias website and related materials, but at first glance it looks very promising. Your guiding me to it much appreciated. –fjm

       

    • #23364
      Daniel Novak
      Participant

      Got full braces and then replaced my DBS STN with DBS GPi.  Braces put back in the closet for now [4 years].

      Best wishes

      • #23492
        Fred Marchant
        Participant

        Followup: Thanks Again Daniel. I looked up those acronyms and see nowthat you were referring to two different deep brain stimulation targets. And now understand what you were saying, at least a little bit more. I would like to read more about DBS and Parkinson’s lower limb dystonia. I’d also like to know if there is any research on this and where that is going on. Any help, much appreciated. –fjm

    • #23485
      Fred Marchant
      Participant

      Hello Daniel Novak: Thanks for your response. Forgive me, bu tI do not know what those DBS STN and DBS GPI acronyms refer to. Also, was this lower limb dystonia related to Parkinson’s? Much appreciate any help or guidance.

      And glad the braces back in the closet for you.

      Thanks again.

      fjm

       

       

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