In 2023, I wrote a blog post about a diagnosis I hadn’t expected: scoliosis. (Read it here.) At the time, I didn’t fully realize how much that story had to say about my Parkinson’s patients and others with degenerative diseases. But looking back on it now, I think it does — and that’s why I’m revisiting it here.
Scoliosis is a progressive condition, and it’s best identified and treated in childhood or adolescence, when bracing and therapeutic exercise can actually influence spinal growth, reduce the impact of the curve, and hopefully eliminate the need for surgery later in life.
In my case, I’d known for some time that I had a degree of scoliosis, and I chalked it up to a leg length discrepancy that was identified in my 30s, when I was first fit for orthotics during a brief running stint. It never gave me much trouble. Even when I occasionally suffered some low back pain over the years, no one mentioned scoliosis as the cause or recommended any treatment specific to it. Over the last decade or so, I began to notice more asymmetry in my hips and shoulders, which, again, I chalked up to the leg length discrepancy and assumed was simply inevitable, since no one had ever pointed me toward scoliosis-specific treatment.
Then, in 2023, it seemed like everyone — including me, my new primary care physician, and my massage therapist — started noticing my scoliosis. But it was only after an episode of unrelenting low back pain that things really started to move. X-rays showed a significant curvature of my thoracic and lower spine. More recent x-rays show that the curve has continued to worsen, despite bracing.
By this point, I’d read enough to know that scoliosis in adults is a progressive condition, that back pain is a common symptom, and that treatment approaches for adults are often symptomatic rather than corrective.
Degenerative and progressive are words familiar to most people with Parkinson’s disease and other neurological diagnoses, and at first glance, they don’t paint an optimistic picture of the future. So it’s probably no surprise that shortly after my own diagnosis, I did exactly what so many of my patients do the moment they hear those words: I went looking for the ideal exercise, the ideal treatment, the ideal authority on scoliosis. In other words, I went looking for the Buddha.
And there’s no shortage of “experts” to be found — on YouTube, Facebook, Instagram, or anywhere else you care to search. Each with a signature brand of treatment that, while it may not promise a cure, is certainly guaranteed to reduce your “suffering,” your “pain,” or whatever else ails you — and it can all be yours for the low price of…
The ninth-century Chinese Buddhist monk Linji Yixuan famously told his disciples, “If you meet the Buddha on the road, kill him.” It sounds violent, but it’s a metaphor — a call to let go of the belief that someone outside of us holds all the answers to our problem. Even when we’re sure we’ve finally found the perfect doctor, teacher, or therapist, the real work is ours. Rather than searching for the enlightened figure who will show us the way, we have to find our own way — through learning, practice, exercise, and through knowing our own bodies.
As therapists, we have to “kill the Buddha” too — every time we become so attached to one approach or one methodology that we stop being open to new ideas.
When we cling tightly to what we’ve learned, it’s easy to convince ourselves that we’ve truly “got it,” and out of fear of losing that certainty, we hold on even tighter. That fixation becomes a crutch against our own growth, personally and professionally, and it can end up serving our patients far less than we intend.
So here’s what I’ve come to accept: there is no single “cure” for many of life’s conditions. What we can do is recognize the certainty of uncertainty, honor and listen to our own bodies, balance evidence-based research with clinical practice, and, whenever we’re the patient, practice a little intuitive self-advocacy of our own.
And in case it isn’t obvious by now — I’m on this path myself, right alongside my patients. As Richard Bach wrote in Illusions: The Adventures of a Reluctant Messiah, “We teach best what we most need to learn.”
My Mission: To enlist individuals in their treatment, and help them express their personality & spirit through voice. To educate and empower. Mary Spremulli, MA, CCC-SLP * FiTOUR® Group Exercise Instructor * Certified End of Life Specialist (CEOLS) * Voice Aerobics® A Whole Body Approach to Voice Practice
Alan, thank you for your email. We all want to find the definitive answer that resolves are problem/s but that rarely exists, so best we can do is gather information, synthesize it in our own brain and trust our own intuition.
Thank you for this very timely reminder….