by Bill Greenberg

An MDA health care service coordinator answers questions from Brad Landon as they enter the MDA clinic at Stanford University Medical Center in Palo Alto. Photos by Peter Kane

In the beginning — even before there was a Muscular Dystrophy Association — there was a clinic.

Located within New York Hospital, the clinic was established in the 1940s by Ade Milhorat as the country’s first laboratory and hospital care facility for study and treatment of people with muscular dystrophy.

In 1950, Milhorat and a group of affected families — led by businessman Paul Cohen — formed the Muscular Dystrophy Associations of America (MDAA). That year the group pledged $19,000 in support of Milhorat’s clinic. (For more about Milhorat, see “Goodbye to a Pioneer”)

Today, the MDA clinic remains the centerpiece of MDA’s commitment to people with neuromuscular diseases. In 2002, MDA’s nationwide network of some 230 outpatient clinics, including 29 MDA/ALS centers, received nearly 75,000 visits from people with neuromuscular diseases.

Visits to the MDA clinic give you the opportunity to get vital information about and assistance with your disease, daily living challenges and MDA’s programs.

The clinic experience usually starts with a referral from a family physician or another health professional — someone who thinks you might have a neuromuscular disease. Because doctors at MDA clinics are the leading experts in the field, the first clinic visits usually involve examination and testing to reach a firm diagnosis of the precise disease causing your symptoms.

After contacting the MDA office nearest you for a clinic appointment, you’ll receive general

Clinic Co-Director Yuen So examines the muscle contractures in Landon’s hand as part of a regular checkup.

Anne Swisher of Houston has worked with MDA’s health care services program for 14 years and is a member of MDA’s National Health Care Services Task Force. Swisher says that making sure the clinic has your medical records is a critical first step.

“Really, to maximize the doctor’s time and to make it beneficial for the patient, the doctor needs to have the advantage of any information pertinent to that prospective diagnosis,” she says. Swisher also emphasizes the importance of a family history, because many neuromuscular diseases are genetic in nature.

Yuen Tat So, director of adult neurology at Stanford University Medical Center (SUMC) in Palo Alto, Calif., agrees. He’s co-director, with Thomas A. Rando, of MDA’s clinic at Stanford.

“It is especially important when the patient’s diagnosis is still in question,” So says. “Because so many of these diseases are hereditary, I also like to see other members of the patient’s family.”

So’s colleague, Ching Wang, works primarily with the children who come to the MDA clinic. Wang echoes So’s opinion about the importance of medical records and patient history.

“I especially need to see what kinds of tests have already been performed, and what the results were,” explains Wang, an associate professor of neurology and pediatrics at SUMC. “This will save so much time and effort — both for me and the patient.”

Over the years, the concept of combining research with treatment has remained an integral part of the MDA commitment. Most MDA clinics are located in teaching hospitals, and many MDA clinic directors are university medical school professors as well as practicing physicians. This means your MDA clinic is positioned on the cutting edge of the latest research and treatment methods for your disease.

Swisher warns that finding a clinic on a university campus can sometimes be difficult, so it’s wise to arrive early.

“They’ll need to have really good directions and a phone number to call in case they get lost on the way there,” she advises. “If they don’t take their reminder card with them or they don’t take information that the MDA office has sent, they won’t know who to call.”

Swisher also cautions that you shouldn’t expect the first clinic visit to be completed quickly. It may involve a couple of hours or more.

“I think that the first time a person comes to an MDA clinic they need to plan to spend quite a lengthy time there. Especially if it’s a teaching facility and they’re going to be seeing residents.”

And while residents are still in a learning phase in their fledgling medical careers, Swisher hastens to assure patients that they’re “real” doctors, nonetheless.

“It’s important to remind people that a resident is not just a doctor-in-training,” she asserts. “I hear that from a lot of people — ‘who are all these doctors-in-training?’ I always tell them that you’d hope any doctor you saw was a doctor-in-training.”

In addition to the doctors and nurses you’d expect to see at an outpatient clinic, MDA clinic directors lead multidisciplinary teams that include such professionals as physical therapists, occupational therapists and rehabilitation specialists. Some MDA clinic teams boast genetic counselors, social workers and even representatives from durable medical equipment companies.

(For an in-depth look at the multidisciplinary approach, see “Who’s Who on the Health Care Team — and How to Be Its Captain”)

So consults Ching Wang, another physician who works with the MDA clinic, about Landon’s progress.

Brad Landon, 45, of San Jose, Calif., has attended MDA clinics in New York and California. Landon says that, while office visits are longer at a clinic that uses the team approach, it saves valuable time in the long run.

“It’s like one-stop shopping,” he says.

Over the years, Landon’s original diagnosis of atypical Duchenne muscular dystrophy has been changed to congenital muscular dystrophy.

As with many people served by MDA, Landon’s symptoms present a puzzling picture. He uses a power wheelchair for mobility and a BiPAP device to assist with nighttime respiration, and has severe weakness and muscle contractures in his hands and forearms.

As So and his colleagues examine the progress of his muscle degeneration and attempt to pin down Landon’s precise diagnosis, other team members check the adjustments on his new power wheelchair.

“Our main focus is on the question of how these patients live their daily lives,” explains team member Jody Greenhalgh, a rehabilitation specialist from the university’s Rehabilitative Services Department. “We’re concerned with everything from safety in the home, to family and caregivers, to how they’re doing with work and community access.”

Landon points out that keeping pace with a progressive neuromuscular disease involves more than staying abreast of research.

“Just like there are continual advances in the medical aspects — like genetics and such — there are significant advances being made in the area of assistive equipment as well,” Landon points out. “These folks are a valuable resource because they’re keeping up on all the latest trends.”

Landon appreciates the team’s holistic approach to the challenges the disease creates in his daily life.

“It’s not just about trying to find a cure,” he says. “It’s about enhancing the quality of life.”

Greenhalgh, an occupational therapist, sees her department’s role as helping to “empower” patients.

“It’s exciting for us at rehabilitative services to be part of the team,” she says. “We’re seeing patients live longer, safer, more functional lives than ever before, and I think it’s only going to get better from here.”

Both So and Wang emphasize that one of the most important members of the clinical team is the patient — yes, you.

“It’s very important that patients keep in touch with us,” So explains. “Even if your disease is progressing slowly, there are a number of reasons why we might need to contact you — like clinical trials, for example.”

It’s especially important to let the clinic know of any sudden changes in your condition.

“When patients have any sort of acute change in their clinical picture, we need to know,” Wang says. “We can see what a patient’s disease looks like today, and we can compare that to what we observed during their last visit. But we have to rely on the patient to tell us what happens at home or between visits.”

Swisher points out that most neuromuscular diseases progress in spurts, rather than along a straight line.

“Somebody can come to clinic today and they haven’t yet jumped to the next plateau

Landon brings a list of questions to ask the doctors, in order to get maximum benefit from his clinic visit.

“There needs to be a clear understanding of what to do if things change between visits,” she adds. “A lot of doctors tell patients that they want to know of accidents, broken bones, etc., because sometimes when people are immobilized for a time they lose a lot of strength.”

Swisher also urges patients to advise other health care professionals of their ongoing relationships with the MDA clinic.

“Often the MDA doctors are consulted by other physicians for conditions outside of the neuromuscular disease,” she explains. Encouraging other doctors to consult your MDA clinic can save a lot of time, since those doctors may not be familiar with progressive neuromuscular diseases and their effects.

“The MDA clinic can alert other doctors about possible complications and other conditions, such as surgery and anesthesia or immobility or whatever else,” Swisher adds. “The MDA publications are also a great thing for people to pick up at the MDA clinic, to take to other doctors, teachers or even their own family.”

One way to make your clinic visits as productive as possible is to prepare questions you want to ask and make sure you get thorough answers that you understand.

“Sometimes it’s helpful for the patient to bring a family member or a friend with them, just in case people have ‘white coat syndrome’ or get lost in some of the conversation,” Swisher recommends. “It’s helpful for someone to remind them later on what was said.”

“White coat syndrome” describes people who become nervous or intimidated when they’re in the presence of a doctor or nurse, Swisher says.

Landon also considers preparation an issue of time and efficiency.

“The actual time spent with the doctor is extremely limited,” he notes. “They have so many people to see, so I try to condense my observations and questions as much as possible to maximize both my time and his.”

Swisher suggests setting specific goals for each visit in advance.

“I recommend that people write down their questions and bring a list with them to the clinic,” she says. “You may also want to sit down with your family and ask for their help in making that list of questions.”

It’s also important to know what the doctor expects you to do between now and your next visit.

“It’s helpful to restate what you are hearing from the doctor,” Swisher suggests. “Something like, ‘Let me make sure I understand what you’re saying, Doctor. You want me to do this and that, and then come back to the clinic when?’”

Some people like to keep their own written records of each clinic visit.

Occupational therapist Yvonne Acosta (left) and physical therapist Pamela Triano, both members of Stanford’s Rehabilitative Services Department, check the footrests on Landon’s new power wheelchair while he’s at MDA clinic.

“I’ve sat in with parents who have notebooks because their children had multiple disabilities. They see a lot of different specialists and they want to know who their doctors are and what they said,” Swisher reports. “Also, military personnel who travel around find it easier to keep their records with them. Then they’re never in the situation of having to wait for an institution to provide them.”

Keeping records can be especially helpful for parents when dealing with a child’s school. You may even want to ask for copies of the clinic’s records for yourself.

“A lot of times a school district wants information that a parent might be able to supply,” Swisher adds. “Or the clinic might want information the school has on testing or something like that.”

Through its clinic program MDA makes every effort to offer the greatest number of services possible.

Shazneen Khan, the residency coordinator for the university’s Department of Neurology and So’s administrative assistant, says, “People sometimes wonder why we ask about third-party insurance at MDA clinic, and we ask them every time they come to sign in,” she says. “But we work from a grant from MDA, and every dollar that we can get from a third-party insurance company translates to a dollar from the grant that we can use to help someone else.”

Khan works closely with the SUMC billing staff to make sure that clinic visits are “coded” properly, and that insurance companies have all the information they need to pay their share of the clinic’s bills promptly.

She also coordinates the scheduling of appointments and follow-ups.

“If you call with questions or information for Dr. So or the rest of the clinic team, I’m the one you’ll get to talk to,” she explains. “The doctors are very busy, so I’ll write down your questions or concerns, and then I’ll follow up to be sure that whatever it is can be resolved.”

An MDA staff representative, usually the MDA health care service coordinator (HCSC), attends every MDA clinic. This person primarily serves as a bridge between you and the medical staff. Beyond that, your MDA representative is the key to an astonishing array of services and resources available to you and your family.

“Sometimes we spend as much time in follow-up as we do at the clinic itself. That’s where we take over from the medical staff and do all the nonmedical things,” Swisher says of the HCSC’s function.

“We can talk with you about a support group or summer camp or upcoming events that you may want to get involved in.

“There’s also follow-up on equipment. We can check to see if we have something in the loan closet that’s been prescribed for you. We also provide information on local resources outside of MDA’s program.

“We see ourselves as the nonmedical partner of the clinic team,” she adds. “We don’t wear white coats and we don’t provide diagnoses and prognoses but we’re there to help in all the nonmedical ways.

“I usually tell people, if they have medical questions, to call the doctor. But if it’s anything else, they can certainly call us, and if it doesn’t fall in our area, we’ll figure out whose area it’s in.”

The MDA representative is also responsible for making sure that your MDA registration information is current. This is important because it helps MDA keep you “in the loop” to receive information, publications and notices of MDA events.

In 1950, raising $19,000 to keep Milhorat’s clinic open was an ambitious goal. In 2002, MDA spent nearly $69 million on clinical and community services.

But the core values and purposes of the clinic program remain unchanged. As long as people are affected by neuromuscular diseases, there will be a Muscular Dystrophy Association.

And as long as there’s an MDA, there will be MDA clinics.