OTISFIELD – Peter Dumont felt lousy Monday morning, so he headed for bed.

He rose from his wheelchair and before he could take a step his body jolted with the pain of stiff-person syndrome.

His ankles buckled, his muscles tightened and he fell to the floor, curling into a fetal position.

Katey Coffin, his nurse, propped pillows around him and tried to make him as comfortable as possible.

However, there was no comfort for the 33-year-old Dumont. There was just pain. A headache emanated from the base of his head and knifed through his whole body.

He said he felt as if every muscle in his body was twisted. Dumont said he thought his tongue might spasm and block his airway. He said he tried to concentrate on his breathing.

“Why me?” Dumont said he was thinking. “Not again, just not again. Stop. Please stop.”

He said he was on the floor for maybe a couple of hours and then his hip relaxed. Coffin, from Personal Touch Home Care in Paris, was able to help him kneel alongside the bed while placing the top of his torso on the mattress.

He said he thought he remained there for another couple of hours.

He remembered hearing his wife talking to the nurse. Since she returned home from work at 3:30 or so he thought the spasm lasted four to five hours.

Coffin explained the spasm lasted about an hour and a half.

“I have no idea of time,” Dumont said. “Just pain.”

On Tuesday, he was still weak from the spasm.

Dumont said the last time he felt good was in 1999, before the first attack of stiff person syndrome.

He was working for Windham Mill Works in counter top production when he left work one day in November because he felt poorly. He said that as he relaxed on the couch, his face drooped, and he became so stiff he could not move.

“I was scared,” Dumont said. “I never went back to work after that.”

According to the National Institute of Neurological Disorders and Stroke, stiff person syndrome is a rare progressive neurological disorder characterized by constant painful contractions and spasms of voluntary muscles, particularly the back and upper legs.

The institute says some drugs provide temporary relief, but there is no cure.

Dumont underwent physical therapy for two weeks last December at the New England Rehabilitation Hospital of Portland and said it helped, for awhile. Any progress made then has since dissipated.

“My endurance is less. I can’t do it as much,” Dumont said. “Anything physical I do just makes me more tired.”

He has not been able to wear shoes in six months. His feet are curled, so he has to walk on the sides and his little toes. His feet are always cold. He says he has the heat on 70 degrees in the house and wears two pairs of socks and a pair of slippers and still his feet are cold.

“They’re always cold,” he said.

He said he is depressed and discouraged at times. He feels he is deteriorating, has no strength, and can do nothing to alter that. He said his illness has worn heavily on his wife, Fran, and three children, Jesse, 18, Sami, 13, and Niki, 12.

“I get a lot of support from Fran, but everything is really wearing on us,” Dumont said.

He said his doctor for the past four years, Paul Davis, of the Lakeside Family Practice in Bridgton has not given up on and remains positive. He said Davis has been in communication with physicians nationwide on the syndrome and that soon he has a trip to Boston planned to learn about a new treatment.

“I’m hoping there’s a breakthrough,” Dumont said. “I want to go back to work. I want to raise my family.

“I know it’s dark, but that’s reality,” Dumont said. “I’m looking for a wonderful ending, but it ain’t here yet.”


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