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    • #17808
      Robert Tauber
      Participant

      I

      I have had this hideous disease for about 8 years. Now After taking Levodopa/Carbodopa type drugs I was diagnosed with cervical dystonia. Starts in my shoulder then spreads to my neck/throat.  Mouth cranks open and tongue flops out. UGH!!!! Taking Baclofan and Botox shots with minimal relief. Any body else experience this?

      Cheers,

      Bob

    • #17842
      Mike P
      Participant

      Bob, that sounds terrible. Sorry to hear that. My PD is limited to my dominant side mainly in the form of rigidity and bradykinesia. No tremor. One of my first symptoms was foot dystonia. When running, my foot would curl up after about 1.5 miles. It never happened with any other activity, just the repetitive running action. Over the years it’s gotten worse. Now it happens about 6-8 times during a 5k run and also happens with biking and even walking. Sinemet never improved that symptom. Extreme cardio exercise gives me lasting moderate PD general symptom relief up to 12 hours but it’s near impossible to achieve with the foot dystonia. That’s nothing compared to what you’re dealing with.

    • #17875
      Shannan
      Participant

      Oh dear that must be annoying to say the least.  I also get foot Dystonia only…right foot. I literally have to walk on the outside of my foot and try not to break my ankle! It’s painful, completely unpredictable, and no Botox did nothing for me.  I feel for you and what you are going through.  There’s so much more to PD than tremors.

    • #17887
      Mary Beth Skylis
      Keymaster

      He hasn’t said as much, but I think that my Dad gets foot Dystonia too. We used to go for long walks together. And he has made the shift to riding a stationary bike or boxing with Rock Steady Boxing. Have you found any useful tips to manage this symptom? Does it get worse depending on the intensity of the activity?

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