I'm published! (ALS: A disease without a blueprint)
Well, the ALS story did not appear as I was originally told, on the 21st, but it ran on Thursday, the 24th. This is for anyone that hasn't seen it yet. I feel the story was well written by Miss Gorden; a little on the bleak side, but she captured the readers' attention, I believe. So thank you, Miss Gordon, for doing your share to help with “ALS Awareness Month"!

The ALS arm of the Muscular Dystrophy Association profiled a different PALS each day of the month. Very interesting reading. Just click on the "Anyone's Life Story" banner at the top of their page.

Happy reading!

ALS: A disease without a blueprint


By Kathleen Gordon
Staff writer
Steve White has all the time in the world to sit and talk. It’s a paradox, he says, because now that he has the time, he is losing his ability to communicate.

White has amyotrophic lateral sclerosis, or ALS — more commonly known as Lou Gehrig’s disease — a fatal disease that has no known cure.

The neurodegenerative disease kills the motor neuron cells in the brain and spinal chord, which causes the brain to lose the ability to control the muscles in the body. This leads to paralysis and problems swallowing, eating and breathing, but the person’s mental capacity remains completely intact. And most people who are in the late stages of ALS can see and hear but are unable to communicate or move.

White is just a few muscles short of being trapped inside his own body.

According to The ALS Association, the average life span of someone with the disease is two to five years after diagnosis. July will mark White’s fifth anniversary since his diagnosis in 2002. White says he has “every intention of sticking around” as long as he can.

Many new tests and research projects to help those with ALS are being performed, according to Dr. Richard Bedlack, director of the Duke ALS Clinic.

“The outlook for patients is tremendously better. It’s like night and day,” said Bedlack.

For now, without a definite cure, White finds joy in simple things such as observing nature, drinking coffee — one of the few things he still consumes — and the company of his loyal dachshund, Pepper.

“Pepper is my little companion. When I’m bad off, he is right there beside me. When we got him, he fit in the palm of my hand. He was the cutest little puppy you ever saw,” he said peeking in the dog’s direction.

White first noticed some signs of ALS when he was stationed in Germany with the Air Force. At first, he felt a weakness in his right hand. Then his hand became so weak he couldn’t unlock his front door. Military doctors in Germany sent him to Walter Reed Army Medical Center in Washington, D.C. After reviewing tests, they gave him the news.

“When I first heard Lou Gehrig’s disease, it reminded me of this comedian joking about lockjaw,” said White. “He said he had never met anyone with lockjaw or met anyone who met anyone with lockjaw. That’s how I felt about ALS.”

It was almost two years later that White became dependent on a wheelchair. Now, he spends his days in his chair surfing the Internet on a computer built for people with disabilities. He has lost most of his ability to control the muscles in his arms, has trouble eating and struggles to enunciate clearly enough to communicate with people.

The symptoms of ALS vary with each person. That’s one of the hardest things for ALS patients to accept, said Jerry Dawson, President of The Jim “Catfish” Hunter Chapter of The ALS Association. They could live for a week or 30 years; nothing is a guarantee.

“Everyone is different with ALS. There’s no blueprint for it. That is one of the hard things to come to terms with,” said Dermott Gardner, who was diagnosed in December 2003. He began to lose the muscle control in his legs first. He, unlike White, was in a wheelchair within weeks of his diagnosis.

“I had my own handyman business. Going from that to wheelchair-bound was kind of a shock,” said Gardner.

Although his speech has been unaffected, Gardner’s ability to breathe has weakened, so he depends on oxygen.

The breathing problems have changed his life, but he said the biggest change was financial. Gardner said the costs of being disabled are tremendous.

But his attitude remains positive.

“People who give up and go into their shell are the ones I see die day in and day out. It’s not a disease you can fight with your mind alone, but it’s got to help,” he said.

Six months ago, Gardner got out of his wheelchair, climbed on his hands and knees and dug out a pond in his front yard.

“I’m not the kind of person that likes to be handled with white gloves.”

He suffered some “bad days” for pushing himself to build the pond. But, Gardner said, it was worth it.

About 10 percent of people with ALS live longer than 10 years after the diagnosis, according to The ALS Association. But Gardner predicts he is going to live many years past that mark.

“I’ve made my mind up,” he said.

Harry Adams uses his faith in God to get through each day with Lou Gehrig’s disease.

“Strangely, while a life-threatening illness can be the worst thing to happen to someone, it can also be one of the best,” said Adams. “Those who believe and enter by the Door will discover that it leads to what they’ve always sought, but never found, outside the alley of despair.”

A ex-pastor at Church of the Open Door, Adams was diagnosed with ALS in 1997. He is one of the 10 percent who make it to their 10th year after diagnosis.

“I knew I was in trouble when I began to sound drunk at the pulpit,” he said.

Adams’ disease has progressed further than White’s or Gardner’s, leaving him with only the use of his right arm and hand and very little use of his neck.

He lost his ability to talk soon after his diagnosis and uses a machine to communicate. As he types words with one finger, the machine speaks the words. For the use of his right arm, he said, he is thankful; without it he couldn’t communicate with anyone.

“It hasn’t been easy,” he said. “Susan and I have coped and adapted repeatedly as the disease progresses.”

He said he has help from friends and the support of his family. And his sense of humor seems to help.

“More know it as Lou Gehrig’s. In Europe, they call it motor neuron disease. But by any name, the flower still stinks,” he said, smiling as he typed the sentence into the machine.

Staff writer Kathleen Gordon can be reached at gordonk@fayobserver.com or 323-4848, ext. 329.
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