The necessity of strength for FA’s inevitable mobility issues
As my disease has progressed, I've learned much about handling adaptations
People often speak about the strength it must take to be a young person living with a progressive neurological disease. While I was diagnosed with Friedreich’s ataxia (FA) at age 25 and have found that yes, it takes every ounce of my strength sometimes simply to check off my most basic to-do list, I now face a lot more demands on my strength than I could ever say.
Because of its degenerative nature, FA makes adaptations inevitable. I just didn’t realize the mental, emotional, and physical toll those adaptations would demand.
Now in my later 30s, I remember going out to dinner with a fellow FA patient about seven months after my diagnosis, when I was still minimally affected, relatively speaking, by FA’s physical symptoms. At that point I’d visited with David Lynch, MD, PhD, at the Children’s Hospital in Philadelphia and felt I had a decent mental grasp on my disease. I’d begun to set expectations of how my imminent progression would go.
How naive I was.
As mobility is compromised
We met for dinner with this lovely patient and her wonderful family. It was my first time meeting someone else with FA. I remember watching her walk down the gently sloping ramp to our outdoor table while using a standing upright rollator that supported her forearms. Her mom was beside her, slowing her momentum and steadying her as she slowly but safely made her way to the table. “Why does she need an able caregiver to support her?” I thought. “Isn’t that her walker’s job?”
Now, 12 years later, I’m in that same exact stage of my disease progression.
I can slowly accomplish tasks that my body is used to doing in the safety of my home, using maximum effort and concentration. But I require adept assistance for anything beyond basic point A to point B tasks, especially when those tasks lie outside my home. If I must navigate a ramp, curb, tight pathway, or other obstacles, I patiently wait for a steadying hand to help me.
I’m sure that people often think the same as I thought. I’m sure people are confused when I use any one of my six mobility aids, often interchangeably, on a given occasion.
All I can say is that my mobility isn’t an exact science. It depends on so many factors, such as my energy level that day, what’s required of me, the terrain, the available seating, the weather, and the bandwidth of my village to help me, among other criteria.
My family seems confident in my decisions on a given outing, for which I’m grateful. It takes so much mental strength to think through the logistics of what’s going to be asked of my disabled body, and then I have to prepare the emotional strength my choice will require.
It’s a given that I need a device, for instance, but which one is the right one this time? Am I OK with the looks I’ll get from strangers when being pushed in a wheelchair? Am I prepared for the inevitable comments about my scooter or power wheelchair from well-meaning people? Am I ready for the awkward moment when someone holds open a door for me before realizing how slowly I move?
Living with FA or any progressive, degenerative disease demands constant, fluid, flexible, and intentional adaptation. I don’t have a simple solution for my mobility needs because my mobility needs aren’t simple. There’s one predictable requirement in whatever situation I face, and that’s strength.
“I look up to the mountains; does my strength come from mountains? No, my strength comes from God, who made heaven, and earth, and mountains.” — Psalms 121:1-2
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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