Little Things Inspire Hope When Living With Friedreich’s Ataxia

Sean Baumstark avatar

by Sean Baumstark |

Share this article:

Share article via email
hope, middle age

The light at the end of the tunnel can seem elusive and bright at the same time. Perhaps it’s a tug of war or a bit of yin and yang activity, but it’s ever-changing, especially in relation to living with a rare, progressive disease like Friedreich’s ataxia (FA). Some days are better than others.

Whether you live with a rare disease or not, most people today can probably relate to the ups and downs associated with the COVID-19 pandemic. Although society was on a downward trend overall for the majority of the last year, little by little the light at the end of the tunnel has gotten brighter. 

With coronavirus vaccines becoming increasingly available, and my occupation being in the food and agriculture industry, I was recently able to get the vaccine. After a couple weeks, this boosted my comfort and confidence in traveling, and I was able to visit my specialist in person a couple days ago.

These visits are well-structured and fairly routine, as the results contribute to ongoing research of my disease. During the visits, we conduct a series of neurological exams and measure the results in terms of timing and frequency.

For instance, because balance and coordination is severely impacted in FA, we often see how long I can stand in place with my feet apart, then together, eyes open, and then closed. There is also the dreaded nine-hole peg test that I’d argue is every FA patient’s least favorite part of such visits. (I call this a “benefit” of virtual visits.)

These standard examinations can be a subtle, or crude, reminder of the loss of my abilities. I’m grateful that my rate of progression is somewhat slow and mild, but the differences are noticeable over time and the adjustments necessary to adapt are unavoidable.

While many of my abilities are slowly fading, it can be exciting when even the slightest change presents itself as an improvement. I tend to bask in any improvements, whether related to strength training, exercise, dietary changes, rest, or perhaps a potential pharmaceutical therapy. The exact reason is rarely, if ever, easy to isolate and identify as the root cause. Ultimately, I’m a fan of getting better, however it may come about.

During my recent doctor’s appointment, I noticed that one of my neurological exams reflected some minor improvement and I was a little surprised. My mind immediately started to scrutinize everything leading up to that moment. Was this improvement a fluke? Could it be tied to the time of day, or the stretching I did that morning, or the extra rest I got the night before? Perhaps it was due to the tomato juice or the can of spinach I gulped down, trying Popeye’s approach?

Of all the possibilities, it definitely had nothing to do with canned spinach.

I can’t offer a definitive explanation or reason, but I’m OK with that. The observation is a simple reminder that there is hope, that there is always a reason to get out of bed — a personal mantra I have adopted over the years.

There will always be bad days and hardships to live through, but as my friend Matt Lafleur writes in his column, it’s the “Little Victories that give us the reminder and joy needed to continue putting one foot in front of the other.

***

Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.