How a Medical Riff Can Sideline You

Occasionally, patients and doctors may have a difference of opinion. Then what? (Image generated by ChatGPT.)

You likely have noticed that I have been absent from writing the Ataxians this year. A FaceBook posting that I read this morning (December 19, 2025) from an Ataxian about Functional Neurological Disorder woke me up to this gap in postings. It caused me to shake my head.

Now, there has been a lot of weird stuff happening to all of us this year and I imagine you too have been distracted more than once from your typical routines. “Distracted” might be a a bit of an understatement. Aside from dealing with our individual medical issues, we have seen politics globally go to new lows of ethical morality. It has felt like we are living on DefCon 3 with wars and social unrest. Billionaires are returning to the traditional roles of robber barons, strategically gaining more control over our daily lives while dividing us into have and have not citizens. Our economies are suffering and our ability to afford basics is shrivelling. The cost of medical supplies, medical insurance and treatments keeps going up, making the vulnerable more vulnerable.

I think it is OK that at the end of this year, we can honestly say we have been distracted from our lives’ routines.

And, then there are the personal distractions.

Actually the word distraction is totally inadequate — personal distressing experiences. Let’s create an acronym for this: PDE. You have had these experiences if you have a neurological disease. The moment you find yet another new symptom arising. The realization that you are experiencing “cliff effect” — the rapid decline in function or ability. The repeated discussions you have with family or loved ones about how difficult and exhausting it is to live with an ataxia. I am sure you can name your own PDE this year.

Mine grew from a seed planted this time last year by my neurologist about FND. (You can find out more about this in a soon to be released post: FND - Helpful or a Disservice.) In a nutshell, my doctor suggested that because I wasn’t progressing fast but at the same time, not improving, that maybe the diagnosis of ILOCA wasn’t valid and he pointed me in the direction of a new Functional Neurological Disorder Clinic down the hall. After learning more about FND and this clinic’s approach, I opted to forgo the referral. The way I described it was, “the fit didn’t seem right.” The decision on my behalf created a considerable riff between my doctor and I.

This turned into a “personal distressing event” that lingered and gnawed at me for months. I couldn’t attend to my writing. My social relationships were affected. My very helpful psychologist certainly earned her fees. I even challenged my physiotherapist to push me through additional movement assessments to help me to regain a sense of perspective on my condition. I was discouraged, depressed, and distrusting.

I now get it!

When Ataxians and other neurological disease patients describe how being disbelieved by family and even medical practitioners exacerbates the feeling of being victimized, I now get it. The diseases’ conditions victimizes people enough — we don’t need others heaping on.

This brings me to the FaceBook posting. Someone posted a ‘treatment suggestion’ that referenced an FND Clinic somewhere in the US without any comment from the poster. These kinds of posts bother me. I understand that people what to share ideas and give hope. But without proper research into the efficacy of these ideas, they could easily become a draining distraction or worse, a personal distressing event.

And importantly for me, the posting caused me to shake my head vigorously, and get on with “living into it.”

Up Coming Posts

• My exploration of Functional Neurological Disorder (FND)

• The "cliff effect" in relation to neurological diseases

• Can AI help with differential diagnosis and help you to discuss our condition with your doctor?