Why I Choose to Adapt to the Ongoing Challenges of a Progressive Disease

Sean Baumstark avatar

by Sean Baumstark |

Share this article:

Share article via email
awkward moments, progression, Rare Disease Day, grief, move forward, small lessons

I’ve been thinking lately about my goals for 2021 and my vision for life. This is a fairly common mental exercise, given the recent start of another calendar year. However, there is nothing routine about the circumstances or environment encompassing life right now.

One word that’s been coming to mind repeatedly is “adapt,” along with all of its variations. Although 2020 was anything but normal, the rare disease community has to adapt often, even when there isn’t a global health crisis, social unrest, and economic decline.

This is especially true when considering a disease like Friedreich’s ataxia (FA). This disease affects people differently, though one consistent and steady truth about FA is its progressive nature. Whether our symptoms show up early in childhood or later in adulthood, one thing we can all expect is for the effects of the disease to worsen.

It can be difficult to remain hopeful and positive in the face of such a devastating reality. As easy as it would be to write about that alone, that’s not the subject of this column. However, I’ll encourage you to read a column written by my friend and fellow FA patient, Matt Lafleur, who recently explained how his diagnosis doesn’t define him.

Instead, I want to focus on adapting, and the ever-present challenge of coming to terms with yet another change, or another stage of our diminishing abilities. I realize these words are negative in nature, but don’t get me wrong — just because something is hard or disheartening doesn’t mean I can’t find a way to move forward. There is no good excuse for allowing any challenge to keep me on the sidelines of this game we call life.

One of the most significant and noticeable symptoms of FA is how it affects my ability to walk. Whether considering the deficits in gait distribution or the decreasing ability to control my muscles (such as my legs), walking is an ongoing challenge for me, and one of those abilities that will eventually disappear completely without the discovery of a treatment or a cure.

Since having a major fall in October 2019, I’ve noticed that walking has become increasingly challenging, more awkward, and ultimately more risky. Although I can still put one foot in front of the other, and my legs move when I direct them to, my walking is sloppy, slow, weak, and always veering away from my intended path. Additionally, my walking is most challenging when I need to carry something, such as a coffee or my laptop.

To help me adapt to my current predicament, I recently purchased a rollator. This four-wheeled walker allows me to remain upright and walking on my own two feet with stability and confidence. 

The added bonus is the capability of taking my coffee and laptop with me without tying up my hands, jeopardizing my balance, and having to rely on someone else for help.

Of course, at 39 years old, I’d rather not be using a walker. But I’d also rather not fall and break my femur again. I’d rather not cause other people concern about my sobriety or their safety in my presence. I’d rather not have to make a dozen trips to my car and back just to unload three bags of groceries. I’d rather not have to get help whenever I need to carry a few things from one office to another. Most importantly, I’d rather not let my stubbornness be an excuse that jeopardizes the abilities I do have.

Adapting isn’t always easy, but it is always required to move forward. My rollator isn’t a step backward. It’s a step forward in preserving and extending the independence and abilities I can still enjoy. I can more quickly come to terms with the need for adaptive tools by focusing on their positive impact instead of their stigma or my deterioration. 

For me, there is no good excuse for avoiding the tools and resources that are available to keep me safe. These things help make adaptation possible, manageable, and successful.

***

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.