Jim Paul tried to whistle for his dog, but he couldn’t pucker. Odd, but no reason for concern, he thought.
But over the next nine months, as his speech became slurred and he had such difficulty swallowing that food seemed to stick in his throat, he began to worry.
His doctor ran one test after another. When the diagnosis finally was made, Paul learned that he had one of the most devastating terminal diseases a person can have. Lou Gehrig’s disease, or amyotrophic lateral sclerosis (ALS), typically robs people of their ability to walk, talk, feed themselves and even breathe on their own. It kills half the people it affects in as little as three years. Some 30,000 Americans have ALS.
Yet as grim as the disease seems, most people with ALS “want to stick their fingernails in and stay as long as they can,” says Dr. Daniel Newman, director of the ALS clinic at Detroit’s Henry Ford Hospital.
Paul is doing much more than that.
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Though he requires feeding and breathing tubes and can no longer talk, the 55-year-old man from the Detroit suburb of Livonia, Mich., has carved out a new life helping others with ALS. He is a leader in two ALS support groups and he moderates two on-line chat groups on the Internet.
What Paul teaches most is hope.
Asked how he stays optimistic despite his illness, he writes on the child’s Magna Doodle drawing toy that is his chief form of communication: “I say, don’t focus on it and what you can’t do. Be thankful.”
Paul called his wife, Gretchen, at her job one Friday in October 1993 to break the news of his diagnosis. It had been no surprise to him; he had researched his symptoms at the library and suspected ALS, but Gretchen was stunned.
The day so saddens her that she cries twice, three years later, describing it. The Pauls are high school sweethearts who will celebrate their 36th wedding anniversary Jan. 29.
“He was all alone when he called,” Gretchen Paul says, her eyes misting. “He had known all along, but he didn’t tell me.”
Asked his immediate reaction to the diagnosis, Jim Paul writes: “Scared. Pissed off. I knew it was incurable and I just was angry.”
ALS is a neurological disease of the brain and spinal cord. Gradually or quickly, nerves that stimulate muscles to contract and move deteriorate.
People usually get ALS in their mid-50s, but it can occur much earlier. It affects more men than women, though no one knows why. About 5 to 10 percent of all ALS cases occur in people with a family history of the disease.
Typically, it begins in either the upper or lower body. Paul’s kind, called bulbar onset, first affects the tongue, lips, palate, throat and voice box. His loss of speech remains his biggest frustration, he says.
Except for the slurring of his speech, Paul’s symptoms progressed slowly. He retired in 1994 from a cable, wiring and electrical supply business he co-owned, to enjoy the remaining years of his life.
For five months, he did just that, treasuring his life, his family, his friends. But in February 1995, he contracted what seemed like a cold and had to be hospitalized.
He had pneumonia. His lungs deteriorated so badly that he had to be put on a ventilator. His own father had spent the last days of his life on one. After six days sitting in the hospital next to his dad “listening to that infernal machine,” he vowed he’d never put his family through anything similar, Paul says.
But in the hospital, he confronted his fear. If he wanted to go on living, he’d have to learn how to live with a ventilator. He had a tracheotomy, to insert a breathing tube in his neck.
In the essay he shares, Paul wrote: “I can see, hear, feel, think, laugh, cry, love, ignore, embrace and just live.”
He spends his days grateful — for his life; for his wife, family and friends; for his newfound interest in communication on the Internet; for the many compassionate people he has met; for his doctors, “who care more for their patients than they do for their tee times.”
Paul also has become active in ALS support groups, both in Ann Arbor, Mich., and through Ford’s clinic. Gretchen Paul drives him to the meetings. He uses a motorized wheelchair with a portable ventilator.
Jim Paul turned his gift of gab to the computer, an interest that blossomed after his diagnosis.
Using a pen, he taps a special keyboard that can form entire phrases and sentences with a single stroke. The innovations allow him to moderate two computer chat groups. One is at 7:30 p.m. CST Mondays on Compuserve, at go mdaforum. Another, on Prodigy, begins at 8:30 p.m. CST Mondays and 2 p.m. CST Thursdays. Jump: Chat and then scroll to medhealth and ALS.
He passes along the words of a Toronto judge with ALS. ” `There are those who would rather curse the darkness than to light a candle,” ‘ he writes. “I have met both the cursers and the candle lighters. I prefer, and follow, the light.”