I am a 61 year old ataxia patient (SCA2). I had been officially diagnosed in 2005, and that was after three years of definitely knowing something was wrong with my balance and gait. My first neurologist said ataxia was “in the Parkinson’s family of diseases” and there was nothing I could do about it. The second neurologist, University of Pennsylvania Hospital, basically did little else, except recommending a barium-swallowing test and one physical therapy session.
I since transferred to a third neurologist at Johns Hopkins Hospital, Baltimore, and am doing very well. I know that a major factor in why I consider myself doing well is because of working with Dr. Tom Clouse.
I have found that a strong positive attitude can play a part in feeling and doing well. But aside from the positive attitude is the instruction on how to physically learn the everyday tasks all over again. And that’s what Tom was so patient in working with me. I was at the stage on standing like I had a physical deformity, walking very stiff and not in control, unable to climb a stairway without holding the railing, unable to get out of a chair without pushing myself up by the arm rests, and so on – all symptoms of someone who was losing control of the basics of everyday living.
Tom worked with me to stand up straight and carry myself correctly. He taught me how to stand up from sitting position without using my arms to push up from the chair. He taught me again how to walk correctly, relaxed and in a straight path. With his instructions I was climbing and descending stairs without holding the railings. I hadn’t run in a few years and after a session Tom had me jogging around the back yard!
Can Dr. Clouse make the disease disappear? No, but he did give me the instructions on how to begin doing the everyday functions again. Adding that to a very positive attitude in which I honestly feel that I can live a normal life with ataxia, I am doing very well.
I live in Newark, Delaware. Everyday I commute by train to Philadelphia. I am not afraid of walking in crowds, nor standing on a train platform. I realize my body has limitations, and I know what I can and can’t do. I credit Tom with giving me the instructions, and working with me to refine those tools, so I can enjoy a normal life.
I’d be happy to discuss anything with you.