Cervical dystonia and training

Discussion in 'Flexibility, Mobility, and Movement' started by Petri, May 17, 2018.

  1. Petri

    Petri Still New to StrongFirst Forum

    Hello, new to the forum. I will cut to the chase. I'm 36 years old and few months ago I was diagnosed by a sickness called cervical dystonia. It affects the neck and sometimes shoulder muscles and makes the muscles contract without my say so. It makes my head tilt to the left and it makes it really hard to do certain type of stuff, be it even doing the dishes and carrying stuff, or even walking. I have had my first botulin injections week ago and have slight improvement. The injection to the muscles is the main treatment.

    Cervical Dystonia - NORD (National Organization for Rare Disorders)

    It's a rare condition and there's really a limited amount of information about it. In Finland where I live there are maybe little over thousand people who have it. When it comes to info about training and cervical dystonia, the info is really limited, in both languages. Found only few links and one persons story who has a dystonia in his hands.

    I would really like to continue training with kettlebells and just training in general. Was just hoping if there's anyone who has trained someone with the condition or even has it.

    I have contacted few different well known professionals physiotherapists who are also seasoned personal trainers in my area but it's a rare diseases so they don't have much experience when it comes combining the condition with training.

    It affect each person individually but just looking for some sort of experiences etc.

    Thank you :)
  2. Steve Freides

    Steve Freides Forum Administrator Senior Certified Instructor

    @Petri, welcome to the StrongFirst forum.

    Petri likes this.
  3. Petri

    Petri Still New to StrongFirst Forum

    Thank you Steve

    Forgot to mention. I have few years (maybe 5) on and off training experience with kettlebells. TGU is my favorite movement. 24KG TGU's in 4 singles per side is where I was at a couple of years or so ago (the symptons started maybe 9 months ago). Would imagine stuff like farmers walks etc would be too much for the condition. Also been doing martial arts, mainly aikido for 8 years.
  4. Groove Greaser

    Groove Greaser Triple-Digit Post Count

    First of all, even if none of the "well known professionals physiotherapists who are also seasoned personal trainers in my area" don't have much experience with your disease - it's probably still a good idea to pick one and work with them. You could be their first case of Cervical Dystonia - and imagine how happy the next person who comes along with Cervical Dystonia will be to find a trainer who has worked with someone with the same condition! Besides, their extensive knowledge of musculature and hands on in person evaluation can help you narrow in on a set of kb exercises in a way that we simply can't match on the forum.

    That being said, I've got some real bugger trigger points in neck/trap/shoulder area that flare regularly (when I push too hard or do something stupid in Brazilian Jiu Jitsu) - and I'm exploring my own path. Currently my neck is very stiff and I have a bruised rib which rules out both swings and turkish get ups (and therefore S&S) for the time being. I have found that I can still do presses, deadlifts (single leg and regular), squats, carries (waiters walk, rack carry, and suitcase carry), bicep curls, and calf raises without pain. So I've glommed together something I can do while I recover. Note: I'm not saying you can or should do these same movements, but I'd like to encourage you that with some experimentation and expert guidance you can definitely put some kind of strength program together.

    TLDR - You should still seek out a professional and they can best help you determine what is appropriate for you.
  5. Petri

    Petri Still New to StrongFirst Forum

    Thanks for the reply. Yes, a good point that the next person will also benefit from my time with the trainers. And I'm not looking for "you should do this" type of answers but some sort of exchange of ideas etc. Even this topic can be the only info in a training forum about this type of condition. For example forum such as bodybuilding.com that is a huge place had one topic with one answer about dystonia. In this day an age where practically anything is in the net, it is harder to wrap your head around a condition such as mine that will affect me for the rest of my life when you cant find much of anything regarding training and it online. Sometimes you just need a little spark "if he/she has done this and that, maybe it can work for me also"

    And the hard thing about cervical dystonia (referring to trigger points) is that it flares up in movement. I'm typing this with one hand and with the other hand supporting my head. Just to give you an idea :) And I plant to try things and tell about the process.
    Last edited: May 17, 2018
  6. Groove Greaser

    Groove Greaser Triple-Digit Post Count

    Apologies if I was unclear about this: I was in no way comparing my moderately annoying trigger points to your condition! I was, from my super brief understanding of cervical dystonia, operating on the assumption that it tended to be localized however and was trying to draw a parallel with trying to find things you can do that don't aggravate that area. There's a solid chance I was wrong about that assumption.

    Either way, I do still stand by the idea of working closely with a professional.

    Please do - I'm sure we'll all be interested to see how you progress. And cheer you all the way!
    Petri likes this.
  7. Petri

    Petri Still New to StrongFirst Forum

    Sorry, I didn't think you did! I was just trying to paint a picture of the condition :) And yes, I plan to work with a professional.

    It is localized but the condition is also (depending on the day also) taxing. You being a bjj guy, imagine if someone would hold a moderate crossface on you for lets say 7 hours, and the person will let it go when you touch your cheek (called sensory triggers) and then apply it when you let go of your cheek. Then ad to that life, walking, eating, paying at the cashier etc and trying to use both of your hands and head tilted to the side (being crossfaced), or one hand and head not tilted all the time :)
    Last edited: May 17, 2018
    Groove Greaser likes this.

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