Local Man Describes Life With ALS
UW Hospital Has Clinic For ALS Patients

POSTED: 3:46 pm CDT July 6, 2007

MADISON, Wis. -- Almost 70 years ago Wednesday, Lou Gehrig retired from baseball and raised awareness about the neurodegenerative disease called amyotrophic lateral sclerosis, or ALS, better known as Lou Gehrig's Disease.

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But some argue that since then, ALS is out of the spotlight, leaving those suffering from it feeling forgotten.

Local resident Jim Wilkins said that, from his experience, many don't know much about the disease he suffers from.

"In my own situation I have people ask, 'What's happened to your speech?' I tell them, 'ALS.' Their response is, 'What is that?' I then tell them 'Lou Gehrig's Disease' and they ask, 'Who is he?' Wilkins said.

Wilkins said he was officially diagnosed with ALS in February.

"I'm so thankful that he can walk and use his hands," said Marcia Wilkins, Jim's wife, who retired from teaching three years ago.

But the disease has taken it's toll. Jim can no longer swallow -- his nourishment comes through a feeding tube. He communicates through a computer with a special speech device.

"I was always a real talker, in fact, one of those individuals who dominated the conversation. I loved going out for lunch and dinner. Our society centers around eating, drinking and conversation socially. We all take those for granted," Jim Wilkins said.

"You just watch it go, and you want to stop it, and you want to be in control and to help and really you're helpless," Marcia Wilkins said.

Jim continues to work in his insurance business with the help of his wife. And he still gets around the farm where they raise horses and have long planned their retirement, WISC-TV reported.

"I have down days, but the secret is to keep busy," Jim Wilkins said.

Jim and Marcia said they are frustrated by the lack of awareness of ALS along with the lack of research for the disease. There is no cure and no treatment and just one drug that only modestly slows the disease, WISC-TV reported.

"It seems like with cancer, you're going through a treatment all the time and you're looking for some hope that maybe this treatment will work. And with ALS, there's no treatment. You just kind of wait for the next problem to come a long and you just hope it's not today," Marcia said.

The Wilkinses said that another frustrating fact of life with ALS is that no two people have the same experience. Experts said the disease progresses differently with each individual who has it, so there is no way to anticipate how the disease will affect Jim.

There is a clinic at University of Wisconsin in Madison that deals with all the challenges of ALS, from speech devices to keeping up with the latest technology to help patients live more comfortably.

"We have computerized breathing machines that help and also portable suction machines that are more usable. And in addition, something called a cough assist machine, which allows a person to take several deep breaths and then evaluate and have an assisted cough. And this helps clear and prevent infection," said Dr. Benjamin Brooks, a neurologist at UW Hospital.

Most advances for ALS have been in the realm of support technology. But Brooks said that promising research under way could lead to advances in the next 10 years to treat or even cure ALS.

http://www.channel3000.com/health/13635944/detail.html