Mind Over Muscle Leads To Life Of Pain Mystery Disease Stirs Reservoir Of Inner Strength
Bob Guglielmetti rubs his jaw, runs his fingers through his hair, then rests his chin in his hand. He poses like an author for a dustcover jacket photo.
It’s a ruse. It’s camouflage.
The subtle motions of Guglielmetti’s hands hide a struggle that consumes his every waking hour. A muscle in his neck won’t obey. It twists his head to the left and down, holding it hostage.
No prayer, no wish, no exertion of will can right this contortion. A hand holding his head in place - that’s what works.
Guglielmetti has dystonia, a mysterious disease more common than muscular dystrophy but frequently misdiagnosed as a psychological problem.
Today, Mayor Jack Geraghty will present Guglielmetti with a proclamation declaring this Dystonia Awareness Week in Spokane. The event was engineered by the Dystonia Medical Research Foundation in Chicago, which is trying to draw attention to the disease.
“We know at least 300,000 people in North America have some form of dystonia, but very few have been accurately diagnosed,” said Eugene Smith, head of the Washington State Chapter of the Dystonia Medical Research Foundation in Seattle.
Guglielmetti’s head started twitching, then pulling uncontrollably to the left, in 1991. Doctors were baffled. It was a year before he got an accurate diagnosis.
His wait was short. Smith waited 15 years.
Smith taught writing at the University of Washington when his right hand and arm started to tense up nearly 30 years go.
Dystonia can affect any voluntary muscle in the body. Eyelids can freeze open or shut for hours. Fingers can curl, necks twist, entire bodies contort.
“Seattle is noted for some of the highest quality medical care in the world, and everywhere I went they had no idea,” Smith said.
Carpel tunnel syndrome, tennis elbow … the explanations were as worthless as the treatments. Finally a neurologist who specialized in epilepsy correctly diagnosed Smith.
Dystonia is difficult to identify because it leaves behind no fingerprint, no smoking gun for the havoc it causes. Blood tests, urine tests, brain scans - nothing reveals a problem.
Doctors know this much: Dystonia is not a muscle disease. The muscles malfunction because the brain is sending rebellious messages: twist constantly, curl against your master’s will.
Some of the most effective treatments either attempt to make the muscles incapable of reacting to the messages or severing the lines of communication altogether.
One medication is botulinum toxin, which is injected into the malfunctioning muscle.
“It weakens the muscle so the brain can’t move it,” said Dr. David Greeley, a neurologist at the Rockwood Clinic in Spokane.
Greeley is one of only four doctors in the Northwest who administers the drug. The others are in Billings, Mont., Salt Lake City and Seattle. Greeley’s patients - about 200 - come from Montana, Idaho, Canada, Washington and Oregon.
Guglielmetti is considering a surgical procedure that severs the nerves carrying the brain’s messages to the twitching muscle. He’d have to travel to either Florida or Minnesota for the operation.
Guglielmetti has taken a variety of medications. Botulinum toxin worked the best, but then his body became immune.
He’s tried massage, chiropractors and physical therapy. Each helped a little bit, but the best therapy is laughter.
The left-turning twist of his neck is God’s punishment for ogling women as a young man, teased his wife, Linda. The couple has been married 34 years. They’ve endured this disease and the death of a son in a car accident last year. They joke with each other constantly.
The twist is almost always with him, but it will not follow him out the door of an airplane or into grief.
When Guglielmetti went skydiving this spring the pull in his neck vanished. It disappeared once when he was laboring hard to install a yard sprinkler and another time when he was cutting wood.
It left him alone long enough to speak at his son’s funeral in 1996.
When Guglielmetti sleeps, the disease sleeps, too.
The cease-fire during slumber is a common occurrence, said Smith, who has written a book about dystonia.
Since his left hand holds his head, Guglielmetti drives one-handed. His wife must cut his steak. He can’t read a book, his neck pulls his eyes from the page. He doesn’t have enough equilibrium to run in a straight line or lift weights.
There is pain and a little embarrassment. Sometimes his neck twists so violently, he must sit down from the agony. Guglielmetti calls those “stingers.”
But he’s adapted, kept his job, controlled the twist with a thoughtful hand to the chin.
“Cripples always find a way,” he said.
, DataTimes ILLUSTRATION: Color photo
MEMO: This sidebar appeared with the story: DYSTONIA For more information on dystonia, call the Washington Chapter of the Dystonia Medical Research Foundation in Seattle, (206) 328-1441, or write to 2205 22nd Ave. E., Seattle, WA 98112.
This sidebar appeared with the story: DYSTONIA For more information on dystonia, call the Washington Chapter of the Dystonia Medical Research Foundation in Seattle, (206) 328-1441, or write to 2205 22nd Ave. E., Seattle, WA 98112.