Carrying on with a life interrupted

Jim Trickey II didn't have to read "Tuesdays with Morrie" to know what it's like living with Lou Gehrig's disease. He and his family are living with ALS -- amyotrophic lateral sclerosis -- every day.

In the 21 months since his diagnosis, Trickey, who works as the building inspector for the city of Jackson, has seen how quickly and unexpectedly the disease can progress.

ALS is a muscular disorder that attacks nerve cells in the brain and spine eventually leading to paralysis. There isn't any rhyme or reason to who gets ALS; most people are between ages 40 and 70 when they get diagnosed. Trickey is 39 years old.

Cape Girardeau residents are talking a lot about Lou Gehrig's disease this month because "Tuesdays with Morrie" was selected as the United We Read book for the city. The book is about the days writer Mitch Albom spends with his mentor while the man is dying from ALS. It will be the topic of a discussion at 6:30 p.m. Monday in the Generations Family Resource Center at Southeast Missouri Hospital.

Reading the book was tough for Brandy Trickey, Jim's wife. "I could see those things happening to my husband," she said.

Her voice breaks a little as she talks. "It's hard knowing that your life is on a timeline," she said. "It's hard to accept."

Most ALS patients live between two and five years with the disease, though about 10 percent of them live up to 10 years. For Brandy Trickey, the hardest part of dealing with the disease is knowing there's not much time. "It's hard knowing that Gracen, our child, won't be able to know who her dad really was."

Focus on today

The couple tries not to think about what might happen in the future and instead focuses on today. And it's the daily events that seem to give Trickey the most problem.

Simple tasks that used to be rote are now impossible for him: holding a coffee cup in one hand, starting a car or even changing his daughter's diapers.

Unlike some illnesses where people have good or bad days, all the days are the same for Trickey, one of the 30,000 Americans who have Lou Gehrig's disease.

He's lost strength in his hands -- that muscle weakness in his upper body was what first signaled something was wrong. Therapy helps maintain what muscle is left.

About two years ago, Trickey noticed some muscle weakness in his right arm and attributed that loss to his job behind a desk. A former construction worker, he just assumed he was losing strength because he hadn't been using those muscles. But the problem persisted and doctors couldn't really figure out what was wrong.

Trickey went to a neurologist for tests, which indicated ALS. Now he visits the neurologist about every four months to see how quickly the disease is progressing. He has physical and occupational therapy three times weekly at the Hand Center in Cape Girardeau.

Although Trickey is doing well, and taking therapy, his wife can see the changes.

"It's just the little things that we take for granted that he can't do," Brandy Trickey said. "I can see so much change in the last six months."

Opening a can of green beans for dinner or cutting a piece of meat at a restaurant are nearly impossible tasks for Trickey. And while he gets frustrated, "everybody is good about helping," he said.

His wife or 8-year-old son help him with buttons and zippers and anything that requires a fine-motor skill.

Muscle therapy

Shannon Miller, an occupational therapist and certified hand therapist, has been working with Trickey to maintain his current muscle. Most of her exercises are stretching his hands and arms. It's not that Trickey doesn't have a range of motion, he's missing the strength to grip or make a fist with his hands, she said.

Before his diagnosis, Trickey didn't know anything about ALS and now he's pretty well-versed. His wife knows a lot more about what insurance covers and what it doesn't when it comes to the disease.

A benefit for Trickey is planned Feb. 28 at the Cape Girardeau Elks Lodge. All the proceeds from the event will help offset his medical costs. NASCAR memorabilia, signed prints from George Brett, a Tiffany lamp and Cardinal baseball tickets are among the items to be raffled at the benefit. About 300 people are expected.

But it doesn't matter how many people come to the benefit, the Trickeys don't think enough people know about the disease. There isn't a support group in the area to help educate the public. However, the hospital is providing information about the disease during Monday's book discussion. The more information that gets presented, the more funding and research becomes available for finding a cure, Jim Trickey said.

ljohnston@semissourian.com

335-6611, extension 126