The progressive nature of FA taught me to appreciate gradual change

Small things we do today can pay off down the road

Sean Baumstark avatar

by Sean Baumstark |

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Living with a progressive condition like Friedreich’s ataxia (FA) means consistency can be hard to find. I’m sure you can imagine the ups and downs I deal with concerning my health.

FA’s progression forces me to adjust my routines weekly and sometimes even daily. I’m blessed to still be semi-ambulatory, but I’ve noticed that walking down the hallway at work has been more challenging than it was just a few months ago. Additionally, in the mornings, I’ve been getting ready for work more slowly than usual because my legs seem to need more time to wake up.

Living with FA has shaped my perspective about change. On the one hand, I want the progressive nature of FA to take its time and move like a turtle. On the other hand, I want the development of treatments and a cure to move at cheetah-like speed.

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I’ve recently been contemplating the desire for immediate gratification while understanding that the most important things in our lives take time. When I’m deep in thought and wrestling with my expectations of change, I usually feel disappointed. Except for the progression of FA, I want change to happen quickly.

After a couple of days at the gym, I want to see bigger biceps and don’t want my muscles to be sore. When I purchase a share of a company’s stock, I want to see it skyrocket the next day. And when I start a new project, I want it to be immediately excellent and flawless.

I can always dream, but we all know that nothing important happens by accident.

Finding the results

To adjust my perspective, I look for things that have gradually changed, leading to positive results. For instance, I reduced my soda consumption a few months ago and nothing changed immediately. Still, I’m now sleeping better and have consistent energy throughout the day.

I was talking to a friend on the phone the other night, and we got to the topics of FA, clinical trials, and the only approved treatment to date, Skyclarys (omaveloxolone). He asked if I had noticed any changes during my time being treated with it. My first answer was, “Not really.” But he quickly pointed out a change that he had noticed while we talked: I was easier to understand. Although we don’t talk often, he is familiar with the mumbling and slurred speech that FA causes, and he told me, “Your speech sounds much better than it used to.”

That’s a win in my book.

Subtle changes, such as improved enunciation, are gradual and lead to solid results. I keep reminding myself that minor tweaks today, when compounded over months and years, can lead to significant results. I treasure this reminder as I consider my goals for the year, my coursework in coaching, and my exercise routine.

As I was recently listening to a podcast, I was reminded of an essential principle in life and the pursuit of change. Podcaster John Maxwell reminded listeners, “You’ll never change your life until you change something you do daily.”

Although I may never enjoy immediate gratification with my diet, exercise, finances, or overall health, I will keep reminding myself that gradual pays off over time.

Note: 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.


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