St. Albans man sees progress in fight with rare disease

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"I think my time is up here," said Perkins, speaking from his wheelchair with his right hand tied in bandages and left fingers clenched in a claw position. "Now it's just my hands. After my hands are better, I'll have better balance and I'll be good. They say within two years I could be 90 percent back to normal."

Now 175 pounds and a regular consumer of Philly cheesesteak sandwiches and Domino's pizza, Perkins went through a nine-month phase during which he lost 96 pounds and the ability to move every part of his body from his feet to his head. He is a victim of a rare disease called Guillain-Barre Syndrome that affects about one out of every 100,000 people in the United States.

"I kept saying, 'why me?'" Perkins said. "I didn't have a will to live. I felt like I would be better off dead."

Now, after two-and-a-half years of daily physical therapy, Perkins has regained control of most of his body, and he hopes he will be able to live outside the rehabilitation center within the next two years and to lead a normal life. He dreams of traveling to Hawaii and Amsterdam, starting his own business and enjoying simple pleasures such as walking down stairs, laying in the living room and watching television.

Guillain-Barre Syndrome is a disease that causes an inflammatory disorder of the peripheral nerves, leading to ascending paralysis from the legs to the head. Some theories suggest that the disease is caused by an auto-immune mechanism, where the patient's own antibodies and white blood cells damage the coverings of nerves, leading to weakness and abnormal sensation.

In Perkins' case, the disease began in October 2000, after he ate a steak cooked by his girlfriend that made him feel sick and vomit.

Perkins initially thought his sickness was due to food poisoning from the steak because his sister, who also ate the steak, got sick and vomited as well. But unlike his sister, who recovered after three days, Perkins felt that his whole system began acting differently.

Two weeks later, Perkins was driving his car when he had to pull up his emergency brake because he was too weak to lift his leg off the accelerator and put it on the brake.

Though Perkins, who lived in St. Albans with his grandmother, still did not want to go to the hospital, his family and girlfriend insisted, and he was taken to Mary Immaculate Hospital, where he said doctors "were sticking me - poking me like a hamster."

After three days in the intensive care unit, doctors diagnosed Perkins with Guillain-Barre Syndrome and told him that the disease has to peak before it starts subsiding. According to a Guillain-Barre Syndrome Web site, the chances of redeveloping the disease are slim, but also not everyone fully recovers.

"I wasn't hearing that," Perkins said. "I wanted them to stop it right away."

Gradually, the paralysis spread so that Perkins could no longer hold a phone, then could not speak, could not breathe without gasping and could barely move his eyelids.

Perkins ordered hospital staff not to allow his daughter, Chiara, 8, to visit him because he did not want her to remember her father with tubes down his throat.

In March 2001, Perkins went into a coma and woke up after four days completely paralyzed with a tube down his nose and throat. He blacked out again a week later and woke up surrounded by friends and family crying.

"With everybody being so sad around me, I thought if they're crying, I must look bad," Perkins recalled.

Perkins was transferred to the Silvercrest Center for Nursing and Rehabilitation, at 144-45 87th Ave. in Briarwood, where doctors, nurses, friends and family urged him to try physical therapy. But Perkins refused to try therapy until one day in July 2001 - when he suddenly found that he could move his shoulder.

"I just picked my arm up," Perkins said. "Then I started thinking, 'maybe the docs are right.'"

Perkins began doing "range of motion" exercises under the guidance of physical therapists who helped him to regain muscle strength so that he could move his arms and other parts of his body more and more every day.

Gradually, the "pins and needles" sensation began subsiding from Perkins from the head down. He regained his appetite and speech and was taken off his respirator the day before Thanksgiving in 2001.

With two hours of physical therapy every weekday in addition to occupational therapy three times a week, Perkins has regained movement of every part of his body except his hands, which need to be operated on to restore his knuckles, which degraded over time with lack of use.

"Every time something came back, it was like a weird feeling," Perkins said. "I would be like, 'why didn't I try that before?' Stuff started coming back every month or so."

Perkins' cousin, Glenn Collins, insisted that Perkins be the best man at his wedding, and in August 2002 Perkins toasted his cousin and his cousin's wife from his wheelchair at their wedding in Brooklyn.

Since regaining movement of his body parts, Perkins no longer stays in bed. He often goes out shopping and to movies with his daughter and daughter's mother, and at night, he sometimes goes to parties and nightclubs with friends. He looks forward to being able to move his hands so that he can fiddle with computers like he used to when he worked as a computer programmer.

"I've got to make up for years," Perkins said. "I have a lot of living to do."

Reach reporter Tien-Shun Lee by e-mail at, or call 718-229-0300, Ext. 155.

Updated 10:25 am, October 12, 2011
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