Well after arguing with countless people down the phone and battling with the NHS I am finally getting some help. Yesterday I had a visit from a rather lovely Occupational Therapist, who had seen Dystonia patients before. I was quiet happy she had chosen to come yesterday as the dystonia alien had decided that I was not allowed to walk,move my fingers or see. She therefore witnessed my leg spasms cause me to fall, then my struggle to get up, she saw how often I would go blind, and how painful the whole thing was. This meant she could see just how much Dystonia affected my life and how much I struggled with doing the most basic things for myself.
She was extremely understanding and was quick to put forwards ideas that would help me in the house and with getting out the house. It was nice to have someone listen to me, who understood my condition, and really wanted to help make my life a little bit easier.
at last. Maybe she can move things along in other directions for you. Keep on keeping on you brave young thing. love and hugs
I’m constantly amazed by the brilliant positivity you put across with every post, thanks for the inspiration!
Hello, what kind of things did the OT help you with around your house? Any other suggestions for people with Dystonia? I am a OT and recently evaluated a lady with dystonia and want to help her. Thanks
I have bars in the bathroom, raised toilet seat, rails outside the house, fall alarm xx