I had my annual Friedreich’s ataxia checkup last week at Children’s Hospital of Philadelphia, which hosts a Friedreich’s Ataxia Center of Excellence for patients and their families. I’m very fortunate to have this facility and my doctor right in my “backyard” of the city that I call home.
This was my eighth year going for a yearly checkup since my confirmed diagnosis of FA. I always have my mom or dad tag along on this day for emotional and moral support. I’m thankful they both have the time and dedication to be there with me for my appointment.
An annual visit consists of the neurological FARS exam, which includes the nine-hole timed peg test, measured walking (25-foot and one-minute timed tests), vision tests, and questionnaires that note symptoms based on the last four weeks leading up to the appointment. Each year, I hope for either no changes or slight changes that do not require a huge impact to my daily life.
Overall, my visit was very positive. There were minor changes and slow progression in the coordination of my hands and feet. There was also minor concern in difficulty with my speech and swallowing. I deal with fatigue, but the muscles in my arms and legs remain strong. This was demonstrated when I was able to stand with my eyes open and closed and my feet apart and together with no assistance. Also, my walking tests showed improvement when I performed them seamlessly with my rollator. I think deciding to use the rollator full time since last summer has improved my energy levels and walking techniques in my daily life.
After my visit, I like to reflect on the outcomes and give myself one piece of advice to live by until the next visit. This year, the best advice I can give is to let this stage of FA run its course, knowing it is in control, and not to take things so personally.