Running with Dystonia

I have a relatively unknown neuromuscular condition known as Generalized Dystonia.  It is a condition which can take various forms such as being unable to move your neck or severe spasms in the limbs.  I am still a runner even though I do have physical difficulties.  It requires mental strength to not give up and keep striving for the personal reward that comes from running.

Typically those who suffer with Dystonia experience one symptom but I have Generalized, also referred to as Early Onset or Dopa Responsive, which means I can have any of the numerous symptoms at any time.  From a running perspective I have unique issues that make running far more difficult.  My right leg from the knee down tingles constantly due to muscle spasms that last for hours.  It is made worse as my big toe sticks straight up and will not go down while the others curl under.  This creates a limp that I have to deal with walking and also running.

Even with Generalized Dystonia, many but not all have resigned themselves to letting their condition control them.  I chose not to.  With the challenges I face the main thing is to start slow.  There are so many plans online and they can be used as a guide but any results they mention will take longer to get there.  I have learned the hard way to listen to my body and accept that I will never be able to run as fast or as far as many people.

Attitude counts!  Maintaining a positive attitude makes such a difference when running is a challenge and then you add your own additional difficulties.  Stubbornness is another quality that is actually an asset for those times when you start to feel sorry for yourself and stating your condition will never let you succeed.  It is ok to be positively stubborn and know that you can do this.

For those suffering with Generalized Dystonia, the pain and feelings of helplessness can be overwhelming.  If you have to ask if it all worth it, in the end the reward far outweighs the risk.  Instead of sitting and letting life pass you by, you outrun all those perfectly normal people sitting on the couch.  Hold your head high knowing your disability does not stop you.  You never will be able to cross the finish line first, but no one or your condition will ever take away your accomplishments.

2 Responses to Running with Dystonia

  1. As far as I’m concerned, you won the marathon! Victory resides in entering the race. A fellow “generalized dystonian,” I well know that life often comes down to the simple act of trying.


  2. Eloquent Existence says:

    Thank you. I needed this. I needed to know someone out there feels likes it’s okay to still run, or yoga, or, kung Fu or weight lift despite dystonia.


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