Sunday, July 10, 2005

Idiopathic Torsion Dystonia

I have returned from the Pacific Parkinson’s Research Centre at the UBC Hospital in Vancouver. First thing, if you are in a wheelchair and have had trouble flying in the past you have to give West Jet a call. You will be treated with dignity and respect by a friendly staff that enjoy their employment, a sure sign that West Jet looks after their employees, this is reflected in the service they extend to their customers, disabled or not.

I have been diagnosed with Idiopathic Torsion Dystonia. Historically, early-onset generalized dystonia has also been referred to as idiopathic torsion dystonia and dystonia musculorum deformans.

I am now waiting for genetic testing and have been told I may have to return to Vancouver. I told the doctor that I can peddle a bike when I can’t walk and for the first time in my life I did not get a dumb look from the doctor. He told me he has seen people with dystonia that can not walk, they can run like the wind, can not walk forward but walk backwards, with arms and hands crippled and twisted that can manoeuvre and manually push their wheelchair. There are many resources to help disabled people. There is very little help to keep the disabled off of welfare and the resulting life without dignity and self-respect.

No comments: