Sunday, April 3, 2005
Copyright 2005 PEORIA JOURNAL STAR, INC.

They come in customized vans, pulling into the parking lot at Alpha Park Library after dusk on the second Monday of each month. Automatic rear doors slowly slide open. Ramps mechanically unfold.

They emerge from the vehicles' dark interiors like a procession of dying, battle-weary warriors strapped into motorized wheelchairs with Star Wars technology. They lurch forward, pivot and turn in technological majesty.

Their bodies are vanquished, muted and paralyzed, the remaining life force all cerebral. Their minds analyze progressive physical deterioration, fully aware of drowning, of being buried alive with only thinking and pain left intact. They deal with one of the world's most dreaded diseases with no cure, no cause, no standard treatment protocol and perhaps the cruelest psychological arsenal.

They can't swallow food or cry out in anger. No sound comes from their mouths because even air passing over vocal cords ultimately succumbs to muscular atrophy.

Two blinks of the eye: "Yes."

The shadow of a smile flitting across a face.

These are the ALS patients of central Illinois. They have an agenda.

Amyotrophic lateral sclerosis, or Louis Gehrig's disease, has no local Peoria-area support group sponsored by The ALS Association, though one is expected to begin this year. ALS patients now meet in a room in the Bartonville library with a staffer from the Muscular Dystrophy Association.

Attendance holds steady at about 15, with deaths and new diagnoses creating regular turnover. There are an estimated 30 ALS patients in the Tri-County Area, 30,000 nationwide, and numbers seem to be rising.

"We're all blazing trails. We have no one to go to for guidance, so we come here," said one caregiver. "Without this contact, we would be isolated with the disease."

A swift progression

ALS is usually swift, with diagnosis to death stretching over 24 to 36 months. There are two in the support group at the 10-year survival mark. No one knows how or why.

Group members scrutinize each other, dreading signs of the disease's progression. This is an exclusive club no one wants to join, but once you're in, you have a support group stronger than family or friends. These are colleagues on a journey of heartbreak and death.

Everyone watched with piqued interest when Deirdre and Duane Parker first joined in August 2003. As her husband's only caregiver, Deirdre Parker, 52, came to each meeting more physically and emotionally exhausted but always elated, hungry to see people. She flashed megawatt smiles, invariably held her husband's hand and spoke with one voice for both of them.

"I worried about her," said Robert "Beaver" Beaumont. "I always wanted to help, but I couldn't leave my wife."

Caroline Beaumont's disease progressed rapidly. She was a fighter, dying Jan. 11 at age 53, 21 months after her diagnosis. She lost the muscle capacity to breathe and had decided against a tracheotomy and ventilator.

"Caroline walked into her first support group meeting. Other people there were more advanced than she was, but her disease progressed faster," Robert Beaumont said recently.

People in the group share ideas, like how to put a coat on a paralyzed spouse or what kind of gloves slip onto limp hands. They recount tales of hurt and help from family and community. They turn to the group for help in the same way they turn to government programs like Social Security and Medicare, but the group has a better batting average.

"Yes, I stood there and said, 'For better or for worse, in sickness and in health, I do,' " said Kathi Kupferschmid, full-time caregiver for her husband Dennis, paralyzed with ALS and on a ventilator. "But right now I can tell you, people dealing with this need some help."

Financial toll

The average cost for ALS care in the final stages of the disease is $200,000 a year.

Kupferschmid is working on fund-raising efforts to open a Peoria chapter of The ALS Association. She works from home in moments not focused on caregiving.

A local ALS chapter is the kind of higher public profile needed to get attention, said U.S. Congressman Ray LaHood, R-Peoria.

"There is a point to be made that all diseases desire a lot of attention. The ones with the strongest voices behind them are heard. The squeaking wheel gets funding," he said.

"Relay for Life is a fund-raiser all over central Illinois. It raises money, gets people involved and highlights awareness. The Cancer Society has done a terrific job of that."

Kupferschmid is working on an ALS awareness walk along the Peoria riverfront June 18. Proceeds from the walk will go toward establishing a Peoria chapter of the association.

Political progress

Despite that progress, she's frustrated on another front: Social Security Disability and Medicaid.

"The government will pay for a caregiver for patients only if that person is not a spouse. Why? This is a 24-7 job for me. The government would pay a bum off the street, but not a penny for a spouse," Kupferschmid said. "Without spouses, the government would have a greater cost providing care for these patients."

She and her husband owned their own business in East Peoria until ALS left him unable to work. Dennis Kupferschmid, 53, now receives Social Security disability income. They have depleted their savings and with no income, Kathi Kupferschmid uses $165 a month of her husband's disability check for her own health insurance.

"We no longer plan for the future. We live day to day," she said.

She participates in a nationwide Internet chat group for spouses of ALS patients. Many of those in the chat group worry about the interruption in credits for their Social Security history. Some praise a program in California that provides payments for spousal caregivers.

"I would like to know the number of caregivers in the country. If we expand Social Security, it's a dollars and cents question. But I will look into this," LaHood said. "Maybe this is something we ought to look at."

In 2000, Congress changed the 24-month wait for Social Security disability payments for ALS patients to five months because of the rapid progression from diagnosis to death. LaHood said maybe that five-month wait should be reassessed and possibly eliminated.

"Obviously, this is one of the most dreaded diseases in the country. It is debilitating for the person and the family," LaHood said. "We need to do all we can to find a cure and a comfort level for patients and families."

Some physicians are discussing another perspective on the allocation of limited resources. Rather than multiple research groups competing for limited funding, priorities could equitably shift from elimination of chronic diseases to elimination of premature death. The federal government considers death before age 65 premature.

"Attempts are made to ask people to weigh priorities for society value. Preventing premature death is achievable, whereas preventing death isn't achievable," said Dr. Frank Gold, associate dean for organizational ethics and regulatory compliance at the University of Illinois College of Medicine at Peoria.

In the case of ALS, Dr. Gold said, research could focus on prevention, but once the disease is diagnosed and the inexorable decline begins, the emphasis would shift to comfort and support.

Steve Gibson, vice president of government relations for The ALS Association, said, "Right now these are very partisan times in Washington. We have disease wars with every person with a condition seeking a cure, prevention and help to make life easier."

However, establishment of an ALS national registry would help both research and care, he said. Currently there is no required notification at time of diagnosis and no indication required on a death certificate.

"The average age of onset is 50 to 55, but we are seeing many more young people diagnosed," Gibson said. "Massachusetts has groupings of ALS diagnoses. Government funded studies see higher ALS in the military, especially vets from the Gulf War. Is there an environmental connection? A national registry would help answer these questions."

Studying Lewistown

Another ALS hot spot is Lewistown, 50 miles southwest of Peoria. Other Illinois communities that are part of a national MS/ALS study looking at high incidence of the diseases are DePue, Savanna, Paw Paw and Morrison. Muscular dystrophy and ALS could share causative factors.

Kupferschmid said, "I don't plan for retirement. I don't plan for next year or next month. I live day to day and take care of my husband. I don't want a handout. I'm not asking for special favors. I'm asking for what's fair."

After 31 years as a mechanical engineer at Caterpillar Inc., Duane Parker has private health insurance, Social Security disability and Medicare. Still, the $6,000 cost of a computerized communication device was declined by his insurance carrier as an unnecessary luxury item. His former colleagues at Caterpillar chipped in to purchase the machine.

Using a time-consuming process that triggers a scanning tool over the keyboard with blinks of his eye, Duane Parker answered questions in a choppy, computerized voice:

"I wanted to continue working as long as I could because I didn't want to concede that the disease had won. I left Caterpillar with sadness but satisfaction that I hadn't given up."

Asked what motivates him now to continue pushing the limits of his survival, he answered: "I am in four different research projects. I am scared to death for my kids and grandkids."