Ride For Life

BY HOLLY AUER
The Post and Courier

Imagine being told you have an incurable disease. You will die within five years, most likely, and maybe sooner. Your body will betray you a bit at a time, and to get proper care, you'll travel for hours - across state lines, at great expense, and with increasing difficulty.

Until now, that was the situation most South Carolinians with Lou Gehrig's disease, or amyotrophic lateral sclerosis, faced.

They could find good doctors close to home, sure, and physical therapists to help preserve their muscle function, and social workers to orchestrate home care or untangle insurance problems. But knitting together that patchwork of help is exhausting, patients and their families say.

With the opening of the Medical University of South Carolina's new ALS clinic, which officially launches today, those days are over. The clinic is the first of its kind in the state, and one of about 25 across the nation.

The clinic will offer one-stop shopping to patients with the disease - visits with neurologists, physical and occupational therapists, speech and swallowing specialists and dietary experts, all during one daylong visit each month.

"When you go to all these appointments, every one takes a huge amount of energy out of you," said retired Brig. Gen. Thomas Mikolajcik, in whom the disease was diagnosed in 2003 and who has since lobbied nationally for ALS research and pushed for the creation of a local clinic. "Here, you never even have to leave the room other than to take a break during that several-hour period."

The clinic will also provide support to families, who risk burnout from the heavy demands of full-time caregiving, and help patients get proper durable medical goods such as walkers, shower chairs and home hospital beds to help them cope with their disability.

And indeed, that equipment is vital to staying active as the disease progresses. Loy Stewart, chairman of the board at Detyens Shipyard in North Charleston, had ALS diagnosed in 2002. He can still walk, but as his legs grew weaker, he was no longer able to get around the shipyard so well.

Enter his new motorized wheelchair, a four-wheel-drive machine that climbs over five-inch curbs, hoists itself up to eye level and, with the help of its six gyroscopes, levitates onto two wheels like a science-fiction robot.

To stand in for his paralyzed arms, Mikolajcik uses a computer program that converts his voice to words on the screen, and he recently tested a computer that would allow him to type with his eyes.

Both men hope patients will use the clinic to discover what new accommodations can help them, too.

"Our role is helping patients sort through how they can remain as functional as possible, how they can stay mobile and how they can accomplish what they want to accomplish," said Erica Rouvalis, MUSC's physical therapy manager, who will work with patients in the new clinic.

In time, the clinic will expand to research new drugs and treatments and set up a basic science arm to investigate the mechanism that causes cell death in ALS patients' motor nerves. With few treatment options - the U.S. Food and Drug Administration has approved one drug for the management of ALS, and it tends to delay the disease's crawl by about six months - Stewart anticipates patients will be eager to sign on for trials.

"If we don't do something about it, we know what the outcome is going to be," Stewart said. "Research is going to be the answer."

But that same desperation to find a cure can also put patients at risk, said Dr. Jerome Kurent, an MUSC neurologist who has been seeing patients at the new clinic since its unofficial opening last month. Patients with ALS and other terminal diseases find themselves bombarded by promises of miracle cures, including trips abroad. To those who buy into the false hope, it often comes at a huge financial and emotional cost.

"There's a history of a whole lot of unproven therapies that take advantage of people and their families who are desperate to try anything, by charlatans," Kurent said.

Leonard "PeeWee" Infinger, who lives in Harleyville, received his ALS diagnosis in the spring after a year of getting progressively more debilitated by what his doctors initially believed was Guillain-Barre Syndrome.

At first, he and his wife, Cheryl, thought they'd have to travel to North Carolina or Georgia for a multidisciplinary clinic, and they worried their insurance wouldn't cover it.

But in fact, the Infingers learned, he could be treated near home. PeeWee was among the first few patients to be seen at the Charleston clinic, on its first day last month.

"We saw the neurologist, we saw someone with PT, someone who helped with swallowing and speech, one that came in to look at his upper body, arms and hands, then the lower body," Cheryl Infinger said. "We were really impressed. He was checked out pretty good."