My life with episodic ataxia – Ataxia

My life with episodic ataxia

My life with episodic ataxia

Tim Wahl talks about the challenges that episodic ataxia has presented throughout his life.

My life with episodic ataxia includes a long succession of medical specialists and a spectrum of diagnoses— “mild” epilepsy, migraine, vasovagal syncope, and hypoglycaemia. The one that took the prize was “anticipatory anxiety.” Ineffective medicines from anti-convulsive and anti-depressants to tranquillisers and beta blockers were dispensed.

Every fortnight on average from the age of 11 to 50, I suffered vertigo and nausea, which could include incoordination—arms flailing, legs buckling—and sweat pouring off me. Triggers for these episodes were normally physical exercise, stress, caffeine, but even changes in weather, excitement or a hot bath could set one off.

Spells required that I lie still, ideally in a cool temperature with something like a pillow to cover my head and block out light and sound. If I was lucky to nod off for a few minutes, the spell ended; otherwise, it was an ordeal that took up to three hours. The next day and for about a week afterward, I was free to move about without worry. After a week, I had to “watch myself,” to be aware of signs like “spasticity,” which precipitated bouts of vertigo.

I was a kid who loved sports, but the onset in early adolescence of clumsy, uncoordinated ways in addition to times of vertigo and nausea brought me alienation and ridicule and got me chosen last for any team in intramural sports. I couldn’t even coordinate my legs and arms to swim in the school’s new pool. My grades took a dunk. I was on a path to social withdrawal.

In 1966 — with one more year of school left — I attempted suicide, which earned me a summer-long stay in Rochester State Hospital, “the nut shop.” The silver lining was the contact through the hospital with a vocational rehabilitation counsellor, whose efforts enabled me to find a path to post-secondary education.

College (university) was not any easier. One day I stood on a bridge over a river. Suicide was on my mind. I had just had the most humiliating experience in my life. Why I took a class that I was bound to struggle in — argumentation and debate —is incomprehensible. Comprised of pre-law students except for me and one other, a girl, it was my turn to speak, to argue a point of view. My mouth cottoned up, my tongue, my lips seemed to grow fat. My speech was slurred. Was it ataxia (which at the time I supposed was anxiety) or my meds, or both? I must have sounded like Foster Brooks, a comedian on TV who always played a drunk. The classroom rocked with laughter. The only one not laughing was the girl, who bowed her head, seeming to sense my humiliation.

Over the years, I was resigned that episodes of vertigo-cum-incoordination were a part of my makeup. I’d tell people who saw me under siege to not panic. I wasn’t dying. One man remarked that I indeed looked like “death warmed over.” A light moment — if anything in this can have levity — came from one of two teenagers, sounding like the cartoon characters Beavis and Butt-Head. I lay like a dead man on the ground after I foolishly had accompanied my kids on an amusement ride. “Hey, Mister, you having a heart attack or something?”

As a teacher in adult education, my job was without much emotional or physical stress. I hardly suffered in-class trauma in my 32-year teaching career. In the early 2000s, I dropped all medicines and started taking just Vitamin D. It was not lost on me that my spells became less frequent and less intense.

I remain puzzled why it took a lifetime to diagnose me with episodic ataxia. One neurologist said he wished he could wave a magic wand. “Let’s face it,” he said, “some people are born uncoordinated and you, unfortunately, happen to be one of them.”

But Dr. Lorraine Purino, in Arcadia, Calif, hit a bullseye on my first office visit last year. After probing my family tree and observing my gait, she suggested I had episodic ataxia.  Episodic what?  Surely, she was pulling my leg! Sure enough, the lab report confirmed episodic ataxia (EA2). No cure in store but at least there is closure to know that what I have is grounded in something physiological, and it has a name. An important benefit is that this information can serve my son and my nephew, who have similar symptoms.

Tim Wahl is author of “Footballogy: Elements of American Football for Non-Native Speakers of English.” [ESL Publishing, Calif]

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