Meet People with FA

Janet

I have had FA for +40 yrs. My younger sister also has FA. It used to be symptomatically diagnosed. Nancy [my sister] had more noticeable symptoms so the focus was on her. No one was able to give our father answers so I thought “it must be in our heads.” If we could just learn how to relax and not be so self-conscious. . . . I always heard the tape recorder in my head of “left, right, left, right and remember to swing my arms.” That seemed to help with walking. I could even fake a knee jerk reflex pretty well - the doctor never questioned it. My Dad took Nancy around the country to try to find a diagnosis until he met with Dr. Barbou in Canada. That's when I thought, oh my gosh- it's not in my head - I too have FA, but I decided to be mentally stronger. Besides, I was in Nursing School and I didn't want my parents to know. They were having a hard time dealing with the guilt of one child being diagnosed, and I wasn't ready to accept the diagnosis either. It wasn't a verified diagnosis. It was symptomatically diagnosed. Being mentally strong is tough stuff, but I did my best. I visualized being a better athlete than I was and managed A's and B's in gym. I worked after high school - first at the FBI and then at the VA Hospital which is where I became obsessed with becoming an RN. I finished school and then became a mother to my two kids, who are both carriers. As physical symptoms became more and more obvious to the discriminate eye, I knew I would finally have to accept this FA diagnosis. I had to give up my career, focus on being a Mom, teach my kids to never give up and provide opportunities to learn life skills. Acceptance of FA being degenerative is a daily struggle. Every little itsy bitsy movement is thought out. To move your foot one inch is nearly impossible. It takes all I've got to accomplish that task. Who ever thought I would become a person who can't walk and chew gum at the same time!!