As an FA patient, what exactly do ‘progress’ and ‘progression’ mean?

Now that I’ve lived with Friedreich’s ataxia (FA) for a decade, I’ve found that I get into the habit of explaining my journey in bullet points to those who ask.

I frequently describe my situation by saying such things as “I’m unfortunately fully dependent on my walker. It isn’t just a temporary fix while I recover from an injury”; “I can do it, but thank you for offering to help”; “I’m fine. I just move a little more slowly”; and most common, “I have a progressively degenerative neurological condition called Friedreich’s ataxia.”

Lately, people aware of my disability have noticed changes and asked me several questions. The two most common observations seem to focus on my use of a mobility scooter and my service dog, a Great Dane named Hank.

When I answer these types of questions, I often say a version of “My symptoms have progressed, so [explanation].” I now realize how confusing that might sound to someone who isn’t familiar with progressively degenerative conditions.

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A different kind of progress

When most people hear the word “progress,” they think of something positive. After all, it’s generally a positive word. You progressed to the next level of something, for example, or you’ve made progress on a project. “Progress” generally means achieving a milestone and then tackling the next one.

But with FA, progression usually isn’t a good thing. For me, it means that my abilities have hit a new milestone of deterioration, and new adaptations must be made. I can no longer safely navigate uneven or taxing terrain with my walker, so I have to use a mobility scooter. My symptoms have progressed to their next level, which means my abilities are deteriorating, demanding additional adaptations.

Because I’ve progressed in my FA journey, my walker isn’t the only tool in my mobility toolbox. I find myself opting for my scooter more and more.

Then there’s Hank, my service dog. When we got him in 2021, the goal was to train him to be my companion. He’d be outfitted with a harness I could grip instead of my walker. I was looking forward to having one free hand again, as well as a dog who could react to a potential loss of balance and counter my momentum better than an inanimate object, such as my walker.

Hank progressed through obedience and service training brilliantly, rising to meet every challenge he was tasked with. While he was making positive progress, unfortunately, my symptoms were making negative progress — and more quickly than we’d anticipated.

I no longer felt it’d be safe for me to go back to one-handed assistance, or that asking so much of Hank was appropriate. We therefore didn’t go through with the mobility training. Hank now is mostly a well-trained, well-loved pet. He’s still a certified service dog and can legally go with me anywhere, but he isn’t my mobility aid.

Dissecting my use and understanding of the word “progress” has made one thing clear: My progressive FA symptoms have demanded a different kind of adjustment. I must now conduct frequent reports on changes in my abilities, or lack thereof. I must then adapt to physical and emotional milestones to keep progressing through life. The only other option is letting FA and its worsening symptoms claim victory over my life, and that’s simply unacceptable to me.

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.