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Thread: Truncal dystonia

  1. #1
    Join Date
    Nov 2020
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    Default Truncal dystonia

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    Dear Mr Rippetoe

    My name is Drew

    I began lifting weights using the Starting Strength book about eight years ago

    About two and a half years ago, I developed a problem which made it difficult for me to stand up straight and walk normally. I have no pain, but my body is pulled forward and my lower back is forced into flexion

    A series of doctors and tests found nothing wrong with my back. Physical therapy was no help

    A neurologist diagnosed “truncal dystonia”: she said that my basal ganglia is sending the wrong message to my deep abdominal muscles. She tried a couple of treatments which were ineffective

    I continue to lift weights, but with lower weights and a focus on technique

    Have you ever encountered the problem which I describe? I wonder if you’ve come across It and know of any routines that might help. Just today, before I did squats, I did an exercise from Starting Strength to help my lower back stay in extension through the squats

    If I can keep my lower back in extension I am fine, but it is continually pulled into flexion

    If you have any experience with this, please let me know

    Thank you

    Drew

  2. #2
    Join Date
    Jul 2007
    Location
    North Texas
    Posts
    53,498

    Default

    Never heard of it. What happens to your low back when you hang from the chinup bar?

  3. #3
    Join Date
    Feb 2018
    Posts
    599

    Default

    Quote Originally Posted by drewstonem View Post
    Dear Mr Rippetoe

    My name is Drew

    I began lifting weights using the Starting Strength book about eight years ago

    About two and a half years ago, I developed a problem which made it difficult for me to stand up straight and walk normally. I have no pain, but my body is pulled forward and my lower back is forced into flexion

    A series of doctors and tests found nothing wrong with my back. Physical therapy was no help

    A neurologist diagnosed “truncal dystonia”: she said that my basal ganglia is sending the wrong message to my deep abdominal muscles. She tried a couple of treatments which were ineffective

    I continue to lift weights, but with lower weights and a focus on technique

    Have you ever encountered the problem which I describe? I wonder if you’ve come across It and know of any routines that might help. Just today, before I did squats, I did an exercise from Starting Strength to help my lower back stay in extension through the squats

    If I can keep my lower back in extension I am fine, but it is continually pulled into flexion

    If you have any experience with this, please let me know

    Thank you

    Drew
    Truncal dystonia can be difficult to treat. Probably the best dystonia treatment is injection of the affected muscle(s) with botox, but this is usually not practical with truncal dystonia due to the muscles involved. Consultation with an experienced botox provider (neurologist, not a plastic surgeon!) would illuminate whether you are a candidate for this. You should be sure to see a movement disorder specialist (a subspecialty of neurology), if you haven't already. There may be other medications to try, and if your situation becomes disabling, you could consider a surgical treatment. It sounds like you're not there yet.

    Lifting should not worsen the dystonia, but you might find your body mechanics make it difficult to maintain good form. Many people with dystonia find they can use "sensory tricks" (historically called "geste antagoniste" if you want to google this stuff) to relieve dystonias intermittently. You may find there are movements or things you can do while lifting to keep your movements reasonably consistent. This will take trial and error, and perhaps a creative coach.

    Most people with significant dystonias suffer other complications throughout life because they are inactive, weak, and deconditioned due to their dystonia. This is avoidable, and training will help to protect you from some of these problems. So continuing to train in a way that works for you is important. You may have to forge your own path here. There is a young guy with cerebral palsy who lifts, competes, and has an instagram presence, so you could probably find him pretty easily. I'm blanking on his name, sorry. Visibly he has dyskinesias. He may also have some dystonias, but even though his issues are different from yours, he may know of some coaches or fellow athletes who have dealt with dystonia.

    Bottom line is that you can and should get stronger. Training may or may not improve your dystonia, but it should not worsen it, and even if you have to adapt your program significantly, training will unquestionably improve your general health and level of function as you deal with dystonia and whatever else lies ahead.

  4. #4
    Join Date
    Feb 2018
    Posts
    599

    Default

    Guy I was thinking of with dyskinetic CP is Miles Taylor on IG as @smiles_taylor

    Again, not the same as training with dystonia, but maybe analogous to your situation.

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