When treating patients with neuromuscular diseases, Robert McMichael believes in sharing as much information as possible. He knows what it's like to be on both sides of the doctor/patient equation and appreciates the value of being properly informed.

Dr. Robert McMichael treats Daniel Sanders, who has polymyositis.

McMichael, who serves as director of the MDA clinic in Arlington, Texas, received a diagnosis of limb-girdle muscular dystrophy (LGMD) at age 3. The disorder generally has a slow progression, with the hips and shoulders affected first. Onset usually doesn't take place until at least the teens, although for McMichael the disease began in early childhood when he started falling and had difficulty getting up.

Now in his 40s, McMichael remains ambulatory, although the disease progression hasn't abated. Over time, tasks such as walking long distances, getting up from chairs and lifting things have become increasingly more difficult.

The presence of the disease in his life brought him into contact with the health care system at a young age. From the time he was in high school, he felt certain that he wanted to become a doctor.

McMichael grew up in Louisiana and earned a dual undergraduate degree in zoology and physiology at Louisiana State University in Baton Rouge, then went on to medical school at LSU School of Medicine in New Orleans. He interned at LSU Hospital in Shreveport.

NEUROLOGIST IN TRAINING

Despite, or perhaps because of, the constant presence of the disease in his life, he felt confident that becoming a neurologist was the right path for him.

"I never had the slightest doubt about being able to do it," he says. "Neurology is a field where you use your brain more than your brawn."

During the early 1980s, he did his residency at the University of Southern California at several institutions, including Los Angeles County Hospital, Children's Hospital of Los Angeles and a leading rehabilitation center, Rancho Los Amigos Hospital.

"As a neurology resident, we saw inpatients with numerous neurological conditions, and we were in the MDA clinic that met once a week," he recalls. "We received very heavy training in neuromuscular diseases. W. King Engel, Valerie Askanas and Teepu Siddique (all MDA clinic directors) were some of my big influences at the time."

He remembers this period, which preceded the discovery of the Duchenne/Becker muscular dystrophy gene in 1986, as a time when exciting progress was being made in treatment of such disorders as myasthenia gravis, polymyositis and dermatomyositis.

MDA CLINIC DIRECTOR

After residency, McMichael chose Arlington, Texas, as a place to go into practice. A few years later, he was offered the opportunity to direct the MDA clinic serving the Fort Worth and Arlington areas.

"I have the office equipped so it works for me and accommodates the patients," he says. "Our office is designed so the hallways are extra wide, and there's space outside the exam rooms for scooters to turn around. Patients don't have to go up a single step to go in and out.

"In MDA clinic, there is some kind of treatment that can be offered to almost every patient, even if it doesn't cure the disease. Inability to treat the underlying disease doesn't mean that you're powerless to do something to help them out.

"I do my very best to keep people as informed as possible. I think that patients -- especially those with a serious disease like ALS (amyotrophic lateral sclerosis) -- need a lot of information. They're going to have a lot to cope with, so they should know what they're dealing with. I don't think someone should come in and just be given a diagnosis and a prescription. Educating the person about what's going on with him is an essential part of what you do for that person."

MEDICAL, MORAL SUPPORT

Although McMichael didn't see the "60 Minutes" broadcast showing an ALS patient receiving a fatal injection from Dr. Jack Kevorkian, he heard about it and was greatly disturbed that the segment might provide a distorted view of the therapeutic possibilities for people with ALS.

McMichael says that fear of dying from respiratory failure -- which apparently was an important factor for the patient in the "60 Minutes" case -- is understandable, but is something that can be addressed and reduced through medical intervention. He believes that "moral" support as well as medical help is crucial.

"I think the reputation that neurology historically has had, where you made a diagnosis and didn't do anything else, is no longer the case in the 1990s. Now the neurologist has a good ability to do something for the patient, and I don't think a nihilistic viewpoint is relevant," he said.

McMichael emphasizes that advance information is crucial. "Somebody who's having trouble swallowing or breathing doesn't need to be confronting that idea for the first time. They should be prepared." In the "60 Minutes" broadcast, it wasn't clear how much information the patient had been given.

"If the disease is going to cause certain difficulties, you need to discuss them so the person will not be caught unaware," McMichael says. "I talk about respiratory failure as soon as I'm confident of the diagnosis that they have ALS. When the patient sees me, they should have reasonable confidence that nothing important for them to know has been held back."

In ALS, he argues, advance action is also crucial when it comes to therapeutic interventions such as Rilutek. McMichael says that starting Rilutek late in the disease progression, after widespread destruction of motor neurons has taken place, is akin to waiting to call the fire department until the house is nearly burned down.

SECOND CAREER

McMichael, who is married and has two children, went back to school in the early 1990s to jump-start another career, one in which he serves as a defender of other doctors.

"My other career is as a medical malpractice defense lawyer," he says. "I represent physicians from every field."

He's not uncomfortable being in a situation that pits doctors against patients. "Both sides of a dispute are entitled to have competent representation," he says. "They're entitled to seek a just outcome, whatever that turns out to be.

"There's a lot less time spent in courtrooms than you think. Trials are only a fraction of an attorney's time."

LOOKING AHEAD

Among his other facets, McMichael has served as an MDA summer camp physician and has participated in research studies such as one focusing on arrhythmia (a kind of heartbeat irregularity) in myotonic dystrophy (MMD).

His own dystrophy remains an uncertain factor. "It's not stable; it's gotten gradually worse over time.

I'm currently still ambulatory and hope that will stay the case for a long time. But I'm weaker than I was 15 years ago," he said.

"My long-term goals are that I'd like to keep on treating patients, and I want to stay knowledgeable about the advances that are taking place. I think there's a ray of hope that effective treatments will be available for a lot of people."