At 19, I was diagnosed with Friedreich’s Ataxia. We’d been married for about two months and I was about that pregnant. I could walk, without help even. Stairs were more difficult and I needed a hand or, at least, a handrail. At our wedding, we stood on two steps that we then climbed to light the unity candle. I held on to Craig the whole time, just like at the football game where we’d met 2 1/2 years before.
When I was diagnosed, we’d driven to Seattle. We left in the middle of the night since we were both awake. One stop at Frankie Doodles for breakfast and we were off for a honeymoon that would just happen to have a doctor’s appointment. We arrived, rented a hotel room, checked out the space needle and went to my appointment.
We still laugh because I was a ditz at that appointment. The doctor held the flash light in front of my face, and said, “Open wide.” So I opened my eyes really wide. LOL
Well, I was diagnosed based on case history and experience, but they drew blood for the actual test that was nearing completion. Two and a half years after that, I was diagnosed by blood test. I was told to eat healthy, exercise and keep a positive attitude. That was as close to any kind of treatments we had.
So, we skip ahead six years and I begin using a walker. Holding onto walls, especially after several sudden falls and sprained ankles, just did not seem like a healthy thing to keep doing.
Three years after that, 2003, I fell in the hallway of our home. I broke both bones in my ankle. Surgery gave me two titanium plates and eight screws. I couldn’t put weight on it for over two months. The boot came off when my daughter was in the hospital, so I didn’t jump right into therapy. I started therapy a month or so into 2004.
I could walk a few feet with with my walker, but I was very, very nervous. I’d never broken a bone before and I definitely did not want to do it again. Hearing the snap, feeling the most intense nausea. Ugh Plus, with FA, I had sat for so long in a wheelchair where balance doesn’t matter, with the feeling of safety that came with it, that I felt dizzy when I stood up.
I still do at times, like my brain is blue water and my skull is one of those clear rectangles that move like a seesaw. Makes standing, especially with holding on to movable objects, a strange thing. A curious mix of strength, weakness, fear and determination.
These pics aren’t my legs, but here is what we are trying to do. I locked my knees for so long when I walked that I’ve done some damage. Now we are trying to fix it from the first pic to the second.
I began pool therapy last fall. I had a lot of strength to gain. My therapist has been amazing. Recently, I have begun land therapy. Walking with my knee cage and with parallel bars. It feels good. And suddenly 5′ 1/2″ feels really tall. LOL I wish I knew what happened to our digital camera. I could take small video clips of it.
I just wanted to log my progress a bit. Have any of you fought a journey like this?
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