National agency recognizes full ALS services

Vanderbilt University Medical Center's extensive work with patients with Lou Gehrig's and other muscular diseases has reached the point that its neurology clinic will be designated a Muscular Dystrophy Association treatment center in ceremonies today.

About 100 Lou Gehrig's patients are among some 1,100 with muscular diseases on the treatment rolls at the clinic, according to physical therapist and clinical coordinator Jenny Robison. They come from Middle Tennessee, western Kentucky and northern Alabama, she said.

''I don't think I have a more grateful group of patients,'' neurologist Gerald Fenichel said yesterday.

Lou Gehrig's - or ALS, for amyotrophic lateral sclerosis - is one of the crueler and more expensive muscular diseases, involving nerve-cell destruction that results in severe waste of the muscles and eventual paralysis.

Typically, patients die within five years, most often from complications in breathing. There's no known cure. Its manifestations vary from patient to patient, and about the only thing known about its roots, Fenichel said, is that it first appeared in medical records in the 1800s.

Some 30,000 people in the United States are affected, and that number is growing because of an aging population, Fenichel said. The onset of ALS typically occurs after age 50.

Fenichel and Robison have been working with muscular disease patients at Vanderbilt for more than two decades, and part of the clinic's qualification for MDA designation came because of its many and increasing services for MD and ALS patients.

The staff includes neurologists Fenichel and Dr. Jane Howard, physical and occupational therapists, a social worker, a team to assess wheelchair needs and a nutritionist.

Susan Whatley, MDA coordinator of health services for a 40-county area around Nashville, said to qualify for recognition as an MDA center, Vanderbilt's program also had to have a support group for patients, a record of ALS research and clinical-trial drug studies, and ''some money'' already being contributed to the program. The last-mentioned was an anonymous donation of $100,000, Whatley and Robison said.

''We're using it to get a communication-device loaner closet set up because people with ALS commonly lose their voices and need communication devices,'' Whatley said.

Much of the equipment required by ALS patients is very expensive, including communication devices costing from $6,000 to $8,000 and power wheelchairs priced around $16,000, Robison said.

Patient James McLaughlin of Ashland City said he plans to attend today's noon dedication ceremonies at Vanderbilt (clinic rooms 2703 and 2704 on Pierce Avenue). He said the disease is ''such an expensive disease that unless you're a millionaire you can't afford it - and they help out a whole lot on all your equipment and medical expenses.''

''When I go through MDA for my clinical checkup, if I don't have insurance, they take care of all of it themselves.''