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    • #17808
      Robert Tauber
      Participant

      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
      Moderator

      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?

    • #17889
      Mike P
      Participant

      Mary Beth-

      My foot dystonia is triggered by repetitive activity that has little variation (straight line constant speed walking/running, stationary bike, etc.). It’s much less of a problem with cross-training or a hike in the woods. I find I really have to listen to my foot. When I start to feel any discomfort I back off right away and stretch. If I try to power through it comes on quickly and is more prone to happen for the rest of the day. I’ve experimented with Sinemet timing and haven’t found the Sinemet ever helps. It’s the same for me even 1-2 hours after a Sinemet dose on an empty stomach.

    • #17922
      Russell Dean Boyer
      Participant

      Bob:

       

      I started out on carbidopa/levodopa and after about 2 years I started getting dystonia in the neck; my head would move back and forth when I didn’t ask it to.

       

      My doctor switched me off of carbidopa/levodopa entirely and onto a dopamine agonist, pramipexole. That stopped the dystonia entirely and also took care of restless legs. The restless legs stopped immediately on the first dose, which was a big relief. However, as time went on I developed edema in the lower legs.

      After about 3 years of pramipexole, and increasing doses being needed, the water on the legs ended up causing a couple of large blisters which broke. They took a long time to heal. Since edema of the lower legs is listed as a side effect of pramipexole, we figured that was the case.

      The doctor added Rytary,  slow release form of carbidopa/levodopa,  to my treatment, and we have been slowly reducing the dosage of pramipexole. The edema hasn’t gone down so it may be due to a different cause.

      But the thing is, the Rytary has not produced the dystonia of the neck at all and it has been about a year since I started taking it. So that is a great relief. But it is very expensive, that is the only drawback.

      As I reduced the pramipexole to 0.125mg 3 times/day my restless legs came back so we are continuing that at a dosage of 0.25 3 x per day.

      But each person is different so what works for me might not for you. I just offer this for your info.

       

       

       

       

    • #17965
      Mary Beth Skylis
      Moderator

      Mike,

      That’s very interesting about continuous motions. I’ll have to ask my Dad if he has experienced similar things. Do you get alot of enjoyment out of hikes and cross-training?

    • #17973
      Mike P
      Participant

      Mary Beth-

      Cross-training works great for me as a full body workout. Based on some recommendations, I ordered one of those infomercial workout programs back in 2010. I was working for an organization where everyone worked from home and I needed a spark to stay active. A co-worker and I made a pact where we went through the program together and we got in the best shape of our lives within a few months. I’ve built up a large video library of similar extreme cross-fit style workout programs as well as yoga and stretching over the years and do them regularly. They are definitely NOT for most people. People suffer a lot of injuries in extreme cross-fit programs that push you to your limits for many consecutive days. But, they work for me.

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