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characterized by repetitive, patterned, and often twisting involuntary muscle contractions.
In fact, he has four of the approximately 13 forms of dystonia so far identi ed: cervical, which causes the head to twist and turn from side to side and front to back; oromandibular, causing slurred speech and dif culty eating and drinking; laryngeal, which, in addition to affecting voice quality, often results in patterned and repeated breaks in speech; and myoclonic, which leads to rapid jerking movements of the upper body – speci cally the shoulders, arms, and neck.
It’s an unpredictable disorder. While dystonia typically stabilizes within ve years of onset, progression can still occur. And neither medication nor therapy can prevent that from happening.
But that’s not the scariest part. No, that would be the whole “rapid-onset” thing.
In May of 1983, John, a ’74 graduate of Shadle Park High School, was teaching sixth grade in Colville when he rst noticed that something wasn’t quite right with his voice. That something soon spread to his entire head, which had inexplicably started bouncing from side to side – rhythmically, like a windshield wiper – before slamming into his left shoulder, where it would remain pinned inde nitely. Speech became dif cult; his left arm just hung there, lifeless.
John didn’t know what was happening – and neither did his doctor. He sought treatment in Spokane, but found more questions than answers. “Nobody had any idea what was wrong with me,” he says. “They’d never seen anything like it.” Worse, the only way to get relief was by lying down: it seemed that when his neck and shoulder muscles didn’t have to work so hard at supporting his head, the spasms were “a little less violent.”
John wasn’t giving up. When school started back up in Colville that fall, he was ready to get back to work. But he was physically unable to teach. Barely three months had passed and John had become wholly incapacitated, unable to even drive himself to the doctor. And several more months would pass before anyone knew what was wrong with him – and what to do about it.
The diagnosis, when it nally arrived, came from an unlikely source: a physician at the Movement Disorder Clinic in Vancouver, BC. John moved back to Spokane in 1985 to get the medical care he needed – including surgery to repair vertebrae damaged by the intensity of the muscle spasms.
Throughout the extensive testing and treatment, John’s Catholic faith gave him “something to hang on to.” It helped him to get over the initial fear when doctors couldn’t tell him what was wrong, and the anger that came when he realized he likely wasn’t going to get any better. “I was a dif cult patient,” he admits with a smile.
By 1989, however, his condition had improved enough that he was able to leave Spokane for Chewelah, where, presumably, the shing was a little better. And where there was a little more room for his aviary...
(facing page) Neck and saddle from a 25-year-old peacock.
Grey peacock pheasant.