17 06 2008

Seeking a safe place: Disorder puts Warren man at risk in own home

Christina Stolarz / The Detroit News

16 June 2008

http://detnews.com/apps/pbcs.dll/article?AID=/20080616/LIFESTYLE03/806160380

Warren — Jason Dunn’s home is an obstacle course.

The 30-year-old Warren man, who has a debilitating neurological disorder, must take care at every turn because of involuntary muscle spasms that can cause him to abruptly fall to his knees or bang his head against walls and door frames.

Family and friends say the small, aging Warren home isn’t suited to someone like Dunn, who eats meals while lying down on the living room floor because it gives him a better sense of balance.

His advocates have called on Warren city officials and others to try to help make repairs to Dunn’s home. It shows evidence of black mold and asbestos contamination that could make him sick. The ultimate goal is to get Dunn, who can’t afford the repairs, on ABC-TV’s “Extreme Makeover: Home Edition,” but, at the very least, they want to bring national attention to his plight and the incurable disorder he’s had since age 6.

“It’s just amazing what he goes through in life, and I never hear him complain,” said friend Mike Delise, who spearheaded the effort. “I do this to give Jason a voice.”

Helping hand

Mayor Jim Fouts said he was affected when he saw Dunn smiling and “literally crawling on the floor” of his office when they met recently. He said he considers Dunn’s attitude about his condition inspiring.

Fouts learned that Dunn doesn’t have control over his body because his muscles regularly contract, forcing him from a standing position to a kneeling position or even one where he lies on the floor.

And though Dunn can no longer talk, he uses a handheld device called a lightwriter to communicate about his disorder and share the problems with his home.

“He is able to do a lot of things I don’t think I could do with the severe limitations he has,” said Fouts, noting that was the first time he had heard of dystonia. “Whatever we can do, I’m willing to do. His home is not made for this kind of devastating illness.”

Fouts said he wants the city’s cable station to do a segment on dystonia to educate the public, and may also contact local charities to see whether they’d be willing to volunteer to help fix up his home.

It will take nearly $5,000 to make all the improvements to Dunn’s Campbell Avenue home, according to an estimate he received in January. A friend of Dunn’s caregiver, Debra Girling, is a handyman who does home inspections; he inspected the home as a favor.

The inspector made several suggestions that range from installing new windows and doors to putting in a new line for the electric stove and installing a new stairwell railing. The inspector also spotted black mold on the ceiling of the only bathroom, which doesn’t have any air vents. However, no one has analyzed any samples for confirmation, Girling said.

Dunn has lived in his home for close to 20 years; his mother, Diane Frizzell, recently turned the deed over to Dunn and his older brother, whom he lives with.

Dunn doesn’t have the income to cover the steep repair costs because his physical condition makes it impossible to hold a job. He receives $650 a month between his Social Security and disability income, and $110 a month in food stamps.

A childhood altered

As a young boy, Dunn loved to play catch with his brother, Brian, in the backyard because baseball is his favorite sport.

He’d ride his bike down the street and pretend to be “The Hulk,” jumping back and forth from his dresser and bed, roaring like the comic book hero.

“It was fun. But it’s kinda hard 2 remember having full control over my body,” wrote Dunn on his lightwriter. The first signs of dystonia — although they didn’t know what it was at the time — were apparent when Dunn and his family went to get a family portrait, said Frizzell, who now lives in Alabama. Dunn kept moving his head backward, as if looking up at the ceiling. When they told him to stop goofing around, Dunn told them his head was moving on its own.

The biggest shock — which ultimately led to diagnosis of dystonia — was when they took a trip to Alabama, she said. Dunn was asleep in the car when they stopped at a rest area, but when he woke up, “he was bent over, and couldn’t walk. It was real scary.”

Dunn’s condition worsened through the years: Between elementary school and junior high, his body was twisted like a pretzel and he used a wheelchair to get around. Doctors prescribed multiple medications before they found one that straightened his body out enough for him to walk on his own. Now Dunn — whose right hand stays curled up tight — only uses a wheelchair in instances when he walks long distances.

Oral medications are the first line of treatment for children, but the results aren’t permanent since doctors haven’t found a cure, said Jessica Feeley, editor and special projects coordinator with the Chicago-based Dystonia Medical Research Foundation. Dystonia affects about 300,000 Americans and is the third most common movement disorder after tremor and Parkinson’s disease. Dunn also used to receive Botox injections to his vocal chords to help relax the muscles, but he stopped — and now can’t talk — after complications to his jaw. He’s also undergone four unsuccessful deep brain stimulations: it’s a few-weeks-long procedure where a battery is implanted in the patient’s chest and connected to a wire that runs inside to the electrodes in the brain, Feeley said. The battery produces a signal that travels from the battery to the electrodes to mimic the effects of leisioning, when a part of the brain is permanently disabled to reduce unwanted movement.

“I have hope that 1 day doctors will fix me,” Dunn typed with his left hand while lying on the floor, legs curled up behind him. “In till then just try 2 stay positive and make as many friends as I can. U should see my MySpace (page).”

Life’s daily dose of obstacles

Dunn accepts and embraces the life of a dystonia patient.

He says he owes that optimistic outlook to his friends, who take him to baseball games, the casino and to just hang out.

He has a vast network of friends on his MySpace and Facebook pages that “help me battle the tough times. I’ll just say it has made me more (determined) in everything I do.”

He’s learned to take care of himself through the years, including microwaving his own meals and doing laundry. However, he has a caregiver who comes five days a week to do some cooking.

But, Girling also tries to get him out of the house to go to the grocery store and the gym because it’s important to strengthen his muscles.

People watch as he walks — sometimes with one foot on tippy toe, the other flat-footed — from the passenger seat to a business’s front door.

One man looked over his shoulder at the gym as Girling uncurled Dunn’s right hand and wrapped it around the bar to do push downs to exercise his arms and chest.

A woman completely ignored Dunn — while he stood at the meat counter of a grocery store — while she placed her order; another woman said “poor dear” and “sweet boy” to the cashier as she looked in his direction.

Dunn doesn’t mind the attention he draws because he knows people are just curious and don’t understand. And he noted that no one has ever been hurtful.

“I’ve adjusted to my life with dystonia. I have no other choice,” wrote Dunn in an e-mail, another mode of communication he relies on. “This is the way I live, just try your best and see what happens.”

You can reach Christina Stolarz at (586) 468-0343 or cstolarz@detnews.com.

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