ALS clinic offers hope close to home
Posted by By Beth Loechler | The Grand Rapids Press February 11, 2008 08:17AM

Fighting illness: ALS patient Leo Bueche and his wife, Kathy, will be one of the families that will use a new clinic being created at Mary Free Bed Rehabilitation Hospital.

GRAND RAPIDS -- ALS has stolen a lot from Leo Bueche. His speech is slurred, his dexterity is diminished, and his legs are numb. But he still has hope.

"I've been lucky. I know of so many people who haven't made it a year, and I feel pretty good still," 53-year-old Bueche said from the kitchen table of his Kent City home.

His optimism is reinforced with today's announcement that he and others in West Michigan with the terminal illness -- better known as Lou Gehrig's disease -- now have their own clinic at Mary Free Bed Rehabilitation Hospital in Grand Rapids.

Michigan State University College of Human Medicine, Saint Mary's Health Care and Mary Free Bed have teamed up to create a clinic for ALS (amyotrophic lateral sclerosis) patients that will include doctors, nurses, physical and respiratory therapists, speech pathologists, dietitians and others knowledgeable in the neurodegenerative disease and its treatments.

The clinic and a companion one at MSU in East Lansing have been certified by the Muscular Dystrophy Association as a two-location MDA/ALS center, hospital officials announced this morning. It is the only such certification in Michigan and the 38th in the country.


The certification means patients likely will be invited to participate in clinical drug trials, said Dr. Brian Averell, who oversees the clinic.

Plus, the 38 clinics will work together to learn more about the disease and determine the most effective treatments, said Dr. David Kaufman, chairman of the MSU Department of Neurology and Ophthalmology.

"There's a lot of research that needs to be done," said Bueche, who was diagnosed with ALS 13 months ago after a couple of years of experiencing weakness in his hands, followed by slurred speech and twitching in his legs.

"They gave him a life expectancy of two years," said Kathy Bueche, Leo's wife of seven years.

"But they also said there's always hope. Things are always changing," Leo said.

The clinic, which has been quietly operating three days a month since October, has served 23 patients with another dozen or so planning to make use of it in the next few months.

"I anticipate that will grow as word gets out," Averell said. "There are a number of patients in the Grand Rapids area who have been traveling to Chicago or Ann Arbor or Cleveland for a clinic like this. That's very burdensome on them."

Before coming to Grand Rapids in 2006, Averell, 34, completed a fellowship at Cleveland Clinic under ALS expert Dr. Erik Pioro. Averell also is a neurologist with the MMPC physicians' group.

"I can give patients the opinion of someone who has seen a lot of ALS. A lot of neurologists aren't comfortable making the diagnosis because they don't see many ALS patients," Averell said.

That was the case for Bueche, who was diagnosed with pinched nerves and other maladies before a diagnosis of ALS was made at the Mayo Clinic. Doctors there estimated he had the disease for 3 to 5 years before it was diagnosed.

He will go to the ALS clinic about once every three months so doctors can monitor his progress and therapists can assess his needs. Those visits are likely to grow more frequent as the disease progresses, he said.

All of the services the clinic provides were previously available at Mary Free Bed, but not in a way that was efficient or convenient for patients, said Dr. John Butzer, Mary Free Bed medical director.

Butzer convinced MSU and Saint Mary's to team up with Mary Free Bed and create the "critical mass" needed for MDA designation, Kaufman said.

"The ability to go to a place and have everything available that a clinical patient will need is one of the most important things you can do for individuals who are measuring their time in weeks and months," Kaufman said.

MSU, Saint Mary's and Mary Free Bed would like to raise $5 million for the clinic, which would include an endowment. Community fundraising will begin next month, but already they have netted $400,000.

The clinic may be reached by calling 242-0395 or 800-528-8989.

Understanding Lou Gehrig's disease
Amyotrophic lateral sclerosis is a progressive and fatal disease that affects nerve cells in the brain and spinal cord, leading to muscle atrophy. Patients with late stages of ALS often become paralyzed.
-- There is no known cure, but research shows promise in slowing the disease. Currently, doctors can only help manage patients' symptoms.

-- About 5,600 people in the U.S. have ALS; 60 percent are men; 93 percent are Caucasian.

-- Onset generally occurs between the ages of 40 and 70; average survival rate is 3 to 5 years, but 10 percent of patients live beyond 10 years.

-- Studies are inconclusive, but researchers suspect ALS may be genetic and may have an environmental link.

SOURCE: ALS Foundation


E-mail Beth Loechler: bloechler@grpress.com
http://blog.mlive.com/grpress/2008/0...e_close_t.html