Disease progression means my needs are constantly changing

The time has come for yet another transition in my journey with Friedreich’s ataxia (FA).

Since my diagnosis in 2013, I’ve had to adapt to my ever-changing needs. As my disease progresses and I lose abilities, I need more assistance.

I used a walker from 2018 until 2024, when I began depending on a wheelchair more frequently. I acquired a sleek, comfortable, and safe power wheelchair that meets all of my needs at home and at most of my regular destinations, such as my children’s school, where I substitute teach, as well as my church and local shops.

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We have made many modifications to our home and lifestyle to accommodate a wheelchair.

My primary power wheelchair is great; I truly have no complaints when I’m using it at home or driving in our minivan, which has been modified to include an extended walking space and an automatically deploying ramp. However, the chair is not ideal when I’m traveling or not in my minivan.

I don’t trust airlines not to damage my wheelchair in luggage storage, so I won’t fly with it. Additionally, my wheelchair is too heavy for most of my friends and acquaintances to lift, so it is not ideal for occasions when I’m starting somewhere besides my house or minivan.

Since I acquired my Rollz 2-in-1 walker wheelchair in 2019, I have often used it outside of the house or when traveling. I’d use it as a walker when it felt safe, and I’d sit in the wheelchair attachment when my legs grew tired. It was the ideal solution while I was still ambulatory.

Adapting to my changing needs

However, as my FA has progressed and my falls have become more severe, it no longer feels safe to continue walking. When I use my 2-in-1 device as a wheelchair, it’s a “transport chair,” meaning someone has to push me; I can’t move by myself while seated.

After all my family travels this summer, plus the times when my husband was traveling for work and I depended more on my parents or friends, I realized that my current mobility aids weren’t safely meeting all of my needs.

Even after my leg fracture healed enough that I was allowed to bear weight, I no longer felt safe walking with a walker, so I ended up just sitting and waiting to be pushed everywhere. I felt so frustrated, unhelpful, and burdensome. I desperately craved independence so that I could contribute and participate in more without requiring so much assistance.

I hit the internet and believe I found a solution. I purchased a lightweight, foldable power wheelchair that is narrow enough to comfortably fit through most standard doorways and light enough for most able-bodied acquaintances to lift. Plus, it meets Transportation Security Administration requirements and comes with an accompanying travel case.

I’ve been test-driving it, and I think it will meet my needs when my regular power wheelchair is not ideal.

Although I am incredibly thankful to have found a safe solution for my current mobility needs, I can’t help but feel sad about this purchase. I desperately wish I didn’t need any of this. I want to be capable and uncomplicated. This milestone feels like yet another reminder that I have zero control over my disease progression. I am praying that my heart accepts what my body demands as I roll further away from the delusion of “normalcy” (which, in this case, was walking occasionally) and embrace this new reality.

I am sure that this wheelchair will soon feel like a beloved extension of me and a tool that enables me to go about my life as safely and actively as possible. It also doesn’t hurt that my children appreciate my new wheelchair being pink.

Onward and upward, with grit and grace.

“I pray that God, the source of hope, will fill you completely with joy and peace because you trust in him. Then you will overflow with confident hope through the power of the Holy Spirit.” — Romans 15:13

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.