Redefining independence when faced with Friedreich’s ataxia progression
Independence doesn’t have to mean complete self-sufficiency
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In December 2025, my husband, Kyle, and I traveled to the Children’s Hospital of Philadelphia to see neurologist David Lynch. It was the first time I had traveled for Friedreich’s ataxia (FA) care since transitioning to predominantly using a wheelchair. Therefore, much of the discussion centered on this transition.
We discussed my new back and neck pain from prolonged sitting, the assistive measures installed throughout our house — like grab rails in most rooms — and my minivan equipped with an automatic ramp. We also talked about what I’m doing to improve my well-being and what else I could add to my routine, as well as the therapy Skyclarys (omaveloxolone) and ongoing clinical trials.
At one point, I shared my frustrations. No amount of remodeling or accommodations can hide the fact that there are many tasks I simply can’t safely do anymore. When Lynch asked for an example, I explained: “My kids love pasta. When I make noodles, I can’t carry the boiling pot from the stove to the sink to drain it, because that requires two hands, leaving me unable to steer and move my chair as needed.”
Lynch looked at Kyle and said, “He works from home and is around, just have him drain the pasta.”
It isn’t ‘all-or-nothing’
Once again, his advice seemed so simple.
Living with FA means constantly adapting to the limitations my symptom progression imposes. While I like to believe I’ve accepted my reliance on mobility aids, FA has a way of sneaking up and stealing little bits of lingering independence, reminding me that I’m no longer fully self-sufficient.
Because of this, I’ve had to redefine “independence” as being able to participate safely, rather than insisting on doing everything by myself.
I can’t cook my kids a warm spaghetti dinner entirely on my own anymore, but I can show ingenuity and determination to handle most of it, then demonstrate humility and teamwork when I ask for and accept help to finish the job.
This example may seem trivial, but it’s another real-life scenario that shows how FA has redefined my perspective on independence. I must accept help. With the right perspective, getting help can feel less like an ending and more like just a hurdle. My reliance on help to complete some tasks is just another thing to adapt to on my journey with FA.
Independence doesn’t have to mean complete self-sufficiency. Your contributions to those around you don’t have to be “all-or-nothing.” Expecting that, especially while managing a progressive neurological condition, simply isn’t realistic.
My advice to those with physical disabilities is just to keep trying and keep contributing. It’s worth the effort.
“We are glad for our troubles also. We know that troubles help us learn not to give up. When we have learned not to give up, it shows we have stood the test. When we have stood the test, it gives us hope.” — Romans 5:3-4
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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