From diagnosis to hospice, the needs of patients with amyotrophic lateral sclerosis, or Lou Gehrig's disease, are always evolving. The ALS Clinic team is prepared to work together and with patients every step of the way.      

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Mallory Riggs was determined to find a solution for her patient.

He loved to eat potato chips and shredded wheat cereal. But as amyotrophic lateral sclerosis, or Lou Gehrig's disease, weakened the muscles of his mouth and throat, his favorite foods caused him to choke.

That wasn't going to stop him, and Riggs, a swallow specialist at the ALS Clinic at Mayo Clinic in Rochester, wanted to be sure he was safe.

"If he wanted to eat something, he was going to find a way to eat it," Riggs recalls. Since there's no cure for ALS — a progressive disease that destroys nerve cells — managing symptoms while maximizing independence is typically the clinic's focus.

For Riggs' patient, eating on his own — and enjoying it — was key. "So many things in life revolve around eating. There's a lot of emotion tied to it," Riggs says. "When a person can't eat normally, it can really affect their quality of life."

After Riggs evaluates patients' swallowing, her first goal is always to help them enjoy the foods they love rather than changing what they eat. Sometimes, this means taking smaller bites or using a straw that limits the size of their sips.

For this patient, it meant finding flavorful dips to bind together crunchy bits of chips and using milk to soften up his cereal. "That's what a lot of our clinic visits were focused on: OK, you want to eat these things? How can we make that easier?" says Riggs.

It's problem-solving like this that makes up many mornings at the ALS Clinic.

"As we look at the whole patient, we ask: What's meaningful to you? What do you view as quality of life?" says Adele Pattinson, a dietitian for the ALS Clinic. "Some people say, 'I want a feeding tube, so I have more energy.' Others say, 'Tell me how I can travel.' Some ask, 'How can I do voice banking to save a special message for a loved one?'"

A team centered around the patient

As a Certified Treatment Center of Excellence, Mayo's ALS Clinic in Rochester meets the ALS Association's highest standard of care for the disease. The multidisciplinary team is central to that model.

After diagnosis, "almost everything else involved in patient care is covered by an allied health professional," says Nathan Staff, M.D., Ph.D., the clinic's medical director.

The team is as diverse as the patients' needs, consisting of dietitians, nurse coordinators, speech pathologists, respiratory therapists, a social worker, a research coordinator, an ALS Association representative, occupational therapists and physical therapists.

"ALS affects all the voluntary muscles — the muscles that enable patients to take care of themselves, to speak, swallow and breathe," explains Katherine Teigen, a nurse coordinator for the clinic. "Since ALS affects every area, we support every area with discipline-specific specialists."

Meeting twice a week on Mayo 8, the "tune-up clinic," as Dr. Staff calls it, offers both convenience and collaboration, allowing patients to see — and strategize with — most of their care team in a single visit. Patients typically attend every three months, which is enough time for their disease to progress but not so long that it spirals out of control.

Starting at 7:30 a.m., the nurse coordinator assigns the day's patients — usually four or five of the 150 patients enrolled in the clinic — to their rooms, and the rotation begins. As staff move from patient to patient, they tailor their care to each person's needs, which tend to evolve quickly.

"We look at what's happened in the last three months and try to anticipate the patient's needs for the next three," explains Teigen.

For example, Kathy Jencks, the clinic's social worker, helps patients apply for disability, offers grief counseling, and talks through employment and financial challenges.

The respiratory therapists might share the pros and cons of breathing devices or a tracheostomy, while the occupational therapists often suggest adaptive equipment, such as a wheelchair switch to recline the seat or a special utensil to help patients eat.

I love knowing that I don't have to know it all. Everyone is so caring and knowledgeable and puts the needs of the patients first. I'm very grateful for that.

Mallory Riggs

The ALS Association representative connects patients to local organizations offering aid, and the research coordinator, Lana Johnson, might suggest a clinical trial.

As the disease progresses, the team's speech pathologists can explore communication tools, ranging from an iPad app to sophisticated eye-detection software.

"To have experts in all these areas working together on the same team is invaluable," says Riggs. "I love knowing that I don't have to know it all. Everyone is so caring and knowledgeable and puts the needs of the patients first. I'm very grateful for that."

Sometimes, team members pair up — say, the dietitian and swallowing expert — to address overlapping areas. That way, patients don't have to share their stories twice.

"We all want what's best for the patient, so it's never an 'It was my idea' kind of thing," says Pattinson.

"We're just doing whatever we can to coordinate care for these patients who have a lot of complex needs," Riggs adds. 

At the end of the clinic, the team convenes to discuss each patient's care, often scheduling same-day appointments, especially for patients who have difficulty traveling.  

Taking care of patients and each other

Although troubleshooting is a big part of the ALS Clinic and the support group that meets afterward, the patients' visits to Mayo aren't all about the tough stuff. There are also joys — both large and small — to celebrate.

"You'd be surprised — being in the ALS Clinic is actually fun," says Dr. Staff. "People enjoy being there. They're talking about their lives, their families, their grandkids. They have things they can't do, but they also have a lot of things they can do."

Since patients usually visit every few months, relationships inevitably start to form.

"We might see them for two years from the time of diagnosis until they enter hospice," says Teigen. "We get to see their milestones — 'I went on vacation.' 'I was able to walk my daughter down the aisle.' Being a part of the patient's journey long-term is very rewarding."

We might see them for two years from the time of diagnosis until they enter hospice. ... Being a part of the patient's journey long-term is very rewarding.

Katherine Teigen

It also brings a certain weight to their work.

When a patient passes away, the whole team is notified. They often pause together in remembrance or share favorite stories about the patient. They send out sympathy cards to family members — many of whom they've come to know well.

"It bonds us as a team, knowing the trajectory of the disease," says Teigen. 

To cope with the heaviness, the ALS Clinic team looks for levity in the little things. They participate in charity events, like the ALS Walk in Rochester, and each winter, they gather for a pizza party.

Sometimes, the aquarium background in Microsoft Teams is all it takes to bring lighter moments to virtual meetings.

"It's difficult sometimes, but there's a lot of solace in knowing that we did everything we could to support them during their journey," says Bradley Boynton, one of the respiratory therapists. "We did as much as we could to help them have the best life possible."