Why Multidisciplinary Care Matters for ALS Patients

Amyotrophic lateral sclerosis (ALS), or Lou Gehrig’s disease, is a progressive neurological disease that affects the nerve cells responsible for muscle movement. As the disease advances, weakness spreads throughout the body, impacting mobility, speech, swallowing and breathing.

While there is no cure for ALS, how care is delivered can make a meaningful difference. A coordinated, multidisciplinary care model brings specialists together to address the complex, evolving needs of people living with ALS — helping improve quality of life, streamline care and support both patients and caregivers through every stage of the disease.

Closing the Care Gap for ALS Patients in Northwest Ohio

National data suggests that more than 750 people living within 90 miles of Toledo have ALS at any time. Until recently, many patients in northwest Ohio had to travel long distances to receive multidisciplinary care.

Establishing local access to coordinated, team‑based ALS care at the Neurosciences Center ALS Clinic helps close a longstanding gap for patients and families in the region.

Why is multidisciplinary care important for ALS patients?

Multidisciplinary care is important for people living with ALS. The disease affects many body systems and often requires care from several specialists.

“At its core, the main symptom of ALS is weakness,” explains Clayton Buback, MD, a neuromuscular neurologist with the Neurosciences Center ALS Clinic. “But that weakness affects nearly every system in the body, which is why so many different specialists need to be involved.”

Rather than navigating multiple appointments across different locations, patients receiving multidisciplinary ALS care see all necessary specialists during a single, coordinated clinic visit.

This type of care model helps reduce physical and logistical strain and helps patients and caregivers leave with a clearer care plan. A multidisciplinary care model may also offer patients a better prognosis than those who receive care from a general neurology clinic.

This multidisciplinary model is recognized as the gold standard of care by the ALS Association. The Neurosciences Center ALS Clinic is proud to be an ALS Association Affiliated Clinic. 

What is a multidisciplinary care model for ALS?

In a multidisciplinary ALS clinic, patients remain in one exam room while specialists rotate in to provide comprehensive care. These visits may last several hours, but they replace weeks of separate appointments.

“Without a multidisciplinary care clinic, people would be spending a very large portion of their lives just going to different health care appointments,” Dr. Buback says. “By bundling all of these appointments together, it really limits the burden on the patient.”

How a Multidisciplinary Team Supports ALS Care

ALS affects far more than movement alone. Each specialist on the care team addresses specific challenges as the disease progresses.

Neurology

A neurologist fellowship‑trained in neuromuscular disorders plays a key role in diagnosing ALS and guiding overall care. The neurologist also manages medication prescribing, including discussing available ALS‑specific treatments and prescribing medications to help manage symptoms.

“There are limited medication treatment options for ALS, and the options that we do have are always discussed,” says Dr. Buback. Medications may help slow disease progression for some patients. They may also treat symptoms like muscle stiffness, excess saliva or mood changes.

“In the multidisciplinary team, the neurologist acts as the team leader,” Dr. Buback explains. “But in reality, many of the most important aspects of symptom management come from the therapists and other specialists.”

This team-based approach ensures medication decisions are informed by real‑time input from the full care team.

Physical and Occupational Therapy

Physical and occupational therapists guide decisions about braces, assistive devices and wheelchairs, including timing and insurance considerations.

“There are a lot of nuances that go into choosing the right mobility device,” Dr. Buback says. “Therapists are constantly evaluating how to maximize the strength patients still have.”

Speech Language Pathology

Speech language pathologists address both communication and swallowing challenges, which can appear early in ALS.

One important early intervention is voice banking, which allows patients to record their voice before speech becomes difficult. That recording can later be used with speech‑generating devices.

“Thinking ahead allows patients to use their own voice if they need a communication device later,” Dr. Buback says.

Speech therapists also monitor swallowing safety over time and help guide decisions around feeding tubes when appropriate.

Respiratory and Pulmonary Care

Respiratory support is one of the most impactful components of ALS care.

“The majority of lifespan extension we’ve achieved in ALS over the past 30 years hasn’t come from new medications,” Dr. Buback says. “It’s really come from respiratory support.”

Breathing muscles often weaken gradually, particularly during sleep. Nighttime breathing support, such as BiPAP therapy, can greatly improve sleep quality, energy levels and overall well‑being.

“I’ve seen patients have drastic improvement in their fatigue once they start using BiPAP,” Dr. Buback says. “Some say they can’t imagine sleeping without it.”

Pulmonologists may also recommend cough assist devices and other therapies as breathing muscles weaken.

Nutrition and Dietetics

Muscle loss and swallowing difficulties can make meeting nutritional needs challenging.

“The thing we really don’t want is for patients to lose weight,” Dr. Buback says. Dietitians help patients raise calorie intake safely. They adjust meals and manage nutrition over time and support feeding tubes when patients choose them.

Social Work and ALS Care Coordination

Social workers help patients and caregivers navigate Medicare enrollment, grants, community resources and access to durable medical equipment.

One unique aspect of ALS is that anyone diagnosed becomes immediately eligible for Medicare, regardless of age.

“We have patients in their 20s on Medicare,” Dr. Buback notes.

Clinic coordinators are the main link in the care team. They help manage needs between visits and keep communication seamless.

“Our health care system isn’t built for a disease that progresses as fluidly as ALS,” Dr. Buback says. “Having a dedicated coordinator is absolutely necessary.”

What This Model Means for Patients and Caregivers

“When patients leave the clinic, they have a stronger sense of certainty about what comes next,” Dr. Buback says. “They’re not walking out thinking about how they need to see three other providers to figure out the plan.”

For caregivers feeling overwhelmed, Dr. Buback emphasizes that support is built into the care model. “ALS is a terrible disease, and the support needs are high,” Dr. Buback says. “But caregivers are never alone, and patients are never alone. They have a team that will be with them through every step.”

Neurosciences Center ALS Clinic is proud to bring this high-standard of multidisciplinary ALS care to northwest Ohio. By bringing expertise together in one place, this model reduces stress, improves coordination and ensures patients and families have a dedicated team to guide them through an ALS diagnosis and beyond.

 

Clayton Buback, MD
Dr. Buback is a neuromuscular neurologist with the Neurosciences Center ALS Clinic. View his profile.

 

Frequently Asked Questions About ALS Multidisciplinary Care

Who leads the ALS multidisciplinary care team?

A fellowship‑trained neuromuscular neurologist typically leads the ALS care team, overseeing diagnosis and medication management while collaborating with therapists and other specialists.

How often do ALS patients attend multidisciplinary clinic visits?

Many ALS clinics schedule visits every few months, with patients seeing multiple specialists during one coordinated appointment.

Does multidisciplinary ALS care reduce the number of appointments?

Yes. By bringing specialists together in one visit, multidisciplinary care reduces travel, appointment burden and delays in care decisions.