Hanging on to life: Survival makes man hero to other patients
+ Ed Davis of Medford has lived for 12 years with ALS amyotrophic lateral sclerosis a disease that's fatal to more than half of its victims within three years. His wife, Marilyn, is his full-time caregiver.Jim Craven By Bill Kettler Mail Tribune June 01, 2007



Ed Davis is living with a disease that by all rights should have killed him a long time ago.

Twelve years ago, doctors told the Medford man that he had amyotrophic lateral sclerosis, a mouthful that most people know simply as ALS.

Local resources for ALS patients and caregivers
The ALS Resource Support Group meets from 2 to 3:30 p.m. on the third Tuesday of the month at the Smullin Center on the campus of Rogue Valley Medical Center. The meetings provide an opportunity for people who have ALS and their caregivers to discuss issues and share information on ALS.

There's also an informal ALS lunch meeting held from 11:30 a.m. to 1 p.m. on the second Thursday of the month at the Medford Eagles Lodge, 2000 Table Rock Road.

For more information about the support group and the lunch meetings, call Gail Gallaher at 292-8775.

More than half of the people who fall victim to this debilitating disease of the nervous system die within three years of being diagnosed. Only one in 10 lives 10 years or longer.

Davis is still here, 14 years after he first noticed his balance was failing, his first symptom of a disease that gradually steals the body but leaves the mind completely intact.

"ConsideringeverythingI'mdoingprettygood," he says, his words sliding together because ALS has compromised his speech. "It'sabattleeveryday."

Davis, 47, spends his days in a wheelchair in the tiny west Medford home he shares with his wife, Marilyn, who feeds him, bathes him, and provides round-the-clock care.

"I have to turn him over at night," she says. "I have to give him his medication. I rub his calves when they get cramped."

Being totally dependent was a major psychological adjustment, he says.

"I'm one who's always done for myself," he says, his speech gradually growing more intelligible to a visitor.

"To have someone wipe my nose...," he says, and pauses to collect his energy, "it takes a lot out of you."

Davis uses a specially modified laptop computer to stay in touch with the world beyond his living room. A white dot on his glasses allows him to perform some of the computer functions with his head, and he still has enough use of his hands and fingers to use a mouse.

"I spend most of my days on the computer," he says. "I stay in touch with family and friends."

He also plays online poker (with play money, he stresses), follows NASCAR races on TV and watches the birds that flock to feeders outside his window.

Scientists still don't know what causes ALS, also known as Lou Gehrig's disease. The New York Yankee slugger first brought widespread attention to the motor neuron disorder in the 1930s, although it had been described by a French physician as early as 1869.

ALS usually strikes people between the ages of 40 and 70. Five to 10 percent of cases occur in families where the disease has already been detected, but the vast majority of cases arise spontaneously among previously healthy adults. It causes motor neurons to fail, usually in the extremities at first. Eventually patients lose their ability to swallow, or breathe, but the rate of decline is unpredictable.

"What you see is a variable progress rate," says Dr. Edward Cupler, a professor of neurology and head of the Neuromuscular Diseases Center at Oregon Health & Science University.

Cupler says there are three main theories about what causes ALS. Some researchers think it is an auto-immune disorder, in which the body somehow becomes confused and attacks itself. Others believe it is some kind of neuro-degenerative process.

There's also evidence to suggest ALS may be caused by exposures to toxic substances. Cupler says people who were in the military during the Gulf War have a higher incidence of ALS than the public at large, and there have been higher rates of ALS among military personnel than the general population for as far back as researchers have been able to track.

Living with ALS for so long has made Davis something of a celebrity at the monthly support group meetings for ALS patients, their families and their caregivers who live in Southern Oregon.

"We call him our hero because he's lived so long," says Barbara Roth of Ashland, who was diagnosed with ALS in November 2003. "He has a wonderful sense of humor."

Davis and his wife tell others how to prepare physically and emotionally for a disease that has no cure.

"A lot of people don't know what to expect, or what to do, or what to do with their everyday life," he says.

Besides the support group meetings, there are monthly informal lunch gatherings, where patients and caregivers keep in touch, talk about how they're doing, and exchange information about a disease that's still a mystery to the scientists who study it.

"You meet people who are like you," said Harvey Roth, his wife's caregiver. "It's hard to explain to anyone else what you're going through (as a caregiver). They say it's a 36-hour day."

The support group and lunch meetings were organized by the ALS Association of Oregon and southwest Washington, which recently hired Gail Gallaher of Ashland to provide support services for patients in Southern Oregon.

Gallaher works with patients in a region that extends from the California border north to Eugene, east to Klamath Falls and west to the coast. She still doesn't know exactly how many people within that area have ALS because it's a disease that physicians are not required to report to a central registry.

"We really want people who work with ALS patients (therapists, neurologists, pulmonologists) to be aware I'm here for support for new patients," she says.

Nationally, about 5,600 people in the United States are diagnosed with ALS every year, according to data collected by the ALS Association, and it kills more people than multiple sclerosis. Cupler, the neurologist, says its incidence is increasing.

Davis doesn't know why he's lived so long with a progressive, fatal disease, but he intends to keep on going as long as he can.

"No matter how bad life gets, you can't give up," he says.

"Every year I say I don't think I'll make it to the end of the year. Now it's about half through the year already. That alone gives me lots of strength, just to know I've already beaten the odds."

Reach reporter Bill Kettler at 776-4492 or e-mail:bkettler@mailtribune.com. Ed Davis can be contacted by e-mail at: easy5399@charter.net.

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