Living With a Progressive Disease Means Adapting to Change

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by Sean Baumstark |

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In some ways, I’m probably late to the party. Like many of my friends and fellow columnists at Friedreich’s Ataxia News, adapting to change has been part of living with a progressive disease.

I’ve read about Matt Lafleur’s tough journeys on his trike, how Kendall Harvey’s dreams about motherhood have changed as her Friedreich’s ataxia (FA) progresses, and how Katie Griffith would give anything to cure FA and watch her son live the life she once thought he would. I know we are all adapting to change, learning how to work around our problems, and continue with our plans, as much as we can.

Although my progression is different than Matt’s, and I don’t have the parenting experience of Kendall or Katie, I’ve still had to make adjustments in ways I never thought I would.

Lately, it seems like every week presents some new “thing” I have to adapt to.

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In my last column, I wrote about my routine for 2022, and how I’m approaching some long-term goals slightly differently. I am proud of my habits and progress thus far, but the routine I mapped out on Jan. 1 has changed at least six times since then. I trust you can relate.

The ‘little things’

The biggest things I’m still adjusting to and figuring out relate to my time and my energy. On paper, my days seem perfect, with about eight hours of sleep, eight hours of work, a little time to make dinner, some time at the gym, and of course, making time for all of the driving required. Sprinkle in some podcast tasks and personal growth efforts, and my weeks are pretty full.

Unfortunately, sometimes eight hours of sleep doesn’t cut it. Sometimes I’m tied up at work for 10 hours. And perhaps most annoyingly, my 90-minute workout at the gym doesn’t account for the 20 minutes I need to change my clothes.

With all of the balance issues and lack of muscle control that come with FA, changing my clothes not only eats up a good amount of time, but it also often wipes me out. And I’m just talking about changing from work clothes into gym clothes. Never mind the added stress or loss of time that comes with showering anywhere other than at home.

As frustrating as the seemingly “little” things are, I’m realizing that life will always involve adapting to change, and I’m learning to be OK with making those adjustments, even when a lot of tweaking is required.

That first step

I’ve kicked off my reading this year with “The 15 Invaluable Laws of Growth by leadership and personal growth author John Maxwell. Thankfully, I found encouraging words in Chapter 1. In talking about his own personal growth journey, Maxwell admits that he thought he needed to find the best way before pursuing growth. “I had it backward,” he writes. “I had to get started if I wanted to find the best way.”

In other words, take the first step, and figure out the rest as you go.

My routine isn’t perfect, but I am well on my way to working out many of the kinks and figuring things out. Instead of making excuses or giving up, I’ll keep adapting to change until I find the routines that work for me. Let’s all give ourselves that same permission and grace.

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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