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.
The reason I choose that message is that I’ve been experiencing new symptoms of the disease, such as difficulty in speech and swallowing. I get shortness of breath when speaking and I am prone to choking more easily.
Both symptoms have been very apparent and noticeable to me since my doctor brought it up. I’ve been noticing the last few months that I have been asked more frequently to repeat my words because I’m hard to understand. I also seem to choke every time I drink or eat.
I have to understand that FA is taking over my body, and these symptoms are not in my control. This is why I cannot take it personally if a family member or friend loses the ability to understand me when I talk. It’s not that they’re rude, but rather they just want to hear what I have to say and they know that my fatigue is affecting my speech. I also cannot take things personally when my body physically changes for the worse.
Now I know this is easier said than done and can be frustrating at times, but I know I have to try my hardest to stay positive and not get down or upset. I also have to keep moving forward to prevent Friedreich’s ataxia from holding me back. I know I’m not in this fight alone and have a whole team of FAmily, family, and friends to relate and rely on whenever I am experiencing these tough changes.
So here’s to another great year of health and positivity when living with Friedreich’s ataxia!
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