You degenerate, you!
I am a rebel, but I have never considered myself a “degenerate.” Yet, this word now sadly has a ring of truth to it since I was diagnosed with idiopathic Ataxia.
Ataxia is a rare, degenerative neurological disease. It can affect a person’s ability to walk, talk and use fine motor skills. It comes in a (literal) dizzying array of types, stages and severity. Ataxia often has a genetic cause. But sometimes, it’s acquired or has no known cause (like mine — that’s what ‘idiopathic’ means).
I asked my support group how to explain the disease to those who had never heard of it. Jackie, an Australian woman who has lived with the condition for decades, responded in her slow drawl, “Well, when anyone asks me what Ataxia is, I usually say just think if Multiple Sclerosis and Parkinson’s had a baby.”
Her analogy surprised me as my symptoms have not progressed to that stage. But another woman confirmed in her New York accent, “Exactly. That’s right because people understand MS and Parkinson’s!”
I am an activist and author. My latest book is about my youngest sister, who has an intellectual disability, Down syndrome. Little did I know that one day I’d be writing about my own disability.
Nobody knows what life will throw at them or how they’ll change as a result.
Five years ago, my symptoms crept up slowly like a thief. One day, I felt a wave of weakness and fell off a low stool while reaching for something high. That was odd, but I brushed it aside. I assumed the fall was of no consequence and I needed to be more careful. I had only hurt my pride.
This feeling of being off-balance repeated itself several times from 2019 to 2024. The doctors searched for an explanation. They told me it could be an inner ear problem or a tumour. Or it could all be in my imagination and nothing to worry about. An ENT specialist even told me to lean into my dizziness and not fear it!
A nasty fall on a June night in 2024 crystallized what was happening. The tumble resulted in a shoulder dislocation and an ambulance ride to the hospital. But my trip on a seven-inch slate step in dim lighting was still only viewed as an accident. For me, though, it was a turning point.
I felt my sense of balance had fallen off a cliff. This led to months of follow-up by doctors, a vestibular therapist and a collection of (fashionable) canes. Finally, an observant audiologist revealed the truth in her report, noting, “patient has an Ataxia-like gait.”
Two decades ago, I was a triathlon age-group winner, yet I could hardly get down to the floor by this point. In the tabletop position, when lifting one arm and one leg simultaneously, I couldn’t even maintain my balance for more than a few seconds.
Being diagnosed with a rare disease is a tough challenge but it’s not game over. I am fighting this degenerative disease by emphasizing new growth.
I am learning that targeted exercises can dial back some of the symptoms a year or more (11 Exercises for Ataxia Patients from the National Ataxia Foundation is a good start). I can hold the tabletop position for 30 seconds now. While I teeter on a balance pad, I am learning about neuroplasticity and proprioception and the brain’s ability to adapt.
I am learning to play beginner piano songs to help with my difficulties doing rhythmic finger-tapping (bilateral dysdiadochokinesia). I’m enjoying it, imagining that my basic piano playing is making plastic changes in my brain, and rewiring it.
I’m also learning about Ataxia from Bill Nye, who talks about the grim toll it has taken on generations of his family. As well, I’m understanding the importance of genetic testing from Jeremy Schmahmann, MD, who in a YouTube talk, imagines a parent confronted by his/her child, “You knew all along, and yet you said nothing?”
And I am learning from the people in my support group that although Ataxia is (as yet) incurable, it’s usually not terminal. It is more often something you die with, not of. With education and perseverance, patients can manage their symptoms.
My neurologist’s voice brightened when talking about stem-cell research, which she said is promising. New treatments may be discovered. In the meantime, I’m seizing the grab bars of life, intent on regenerating in a new accessible home (minus that 7” slate step). I am still enjoying my changed life.
Photo courtesy of DepositPhotos
