Multidisciplinary Clinic Supports People Living With ALS
Trapped by the body with a mind all alone, Some flesh for my maker, and blood from the stone.
Music has always been a part of William Holt’s life. First it was piano, then trombone in high school. In college, he picked up the percussion that he’d always loved, and eventually, “after a couple epiphanies,” he learned how to play guitar. Then he started writing original songs. Now and then, he’d invite musician friends over. “We would have what we call hootenannies in the backyard, around the fire pit, playing music, playing guitars, bass, harp, and drums,” Holt says.
These days, Holt’s songs tend to the melancholy. “Running Out of Steam” is one title. Another is “What We Leave Behind.” They’re songs about living with amyotrophic lateral sclerosis (ALS), a progressive neurological disorder that—at least currently—has no cure.
Also called Lou Gehrig’s disease, ALS leads to spasms and muscle weakness in the muscles that allow a person to move their arms and legs, speak, and breathe. In Holt’s case, it primarily affects his arms, legs, and core muscles thus far. He can no longer play the guitar. But he still writes poetry.
In such a situation, having strong medical support is crucial. And since Holt’s diagnosis, he’s found answers, resources, and treatment through the ALS Clinic at University of Utah Health.
Support across symptoms
“This is a very challenging disorder to have as a patient,” says Mark Bromberg, MD, PhD, chief of the Division of General Neurology at U of U Health and a neurologist with the ALS Clinic. “Unfortunately, we don’t have an effective treatment. So the mainstay of the clinic is to provide support for the patient.”
Because ALS affects many parts of the body, consulting with providers who have many areas of expertise can be very helpful to manage symptoms. But setting up huge numbers of medical appointments is exhausting and impractical. The ALS clinic has an unorthodox solution.
“What makes the clinic unique is that it’s multidisciplinary,” says Heather Hayes, PhD, associate professor of physical therapy and athletic training and a neurologic clinical specialist with the ALS Clinic. “All the providers are there.” In a single, many-hour-long visit, a patient may see a neurologist, a speech and language pathologist, a respiratory therapist, an occupational or physical therapist, a clinical pharmacist, a social worker, a genetic counselor, a dietician and a pulmonologist.
“It’s like one stop shopping—or health care speed dating,” Holt says. “I’m in the room, and all these providers come in and talk to me and help me. It’s wonderful. It’s not as fatiguing.”
Learning from each other
For Holt, a particularly valuable aspect of the clinic has been providers’ willingness to dig up answers to any questions he has. “I used to come in armed with all these questions, pages and pages of observations about what had happened to me and what it means,” he says. “And they’ve always been very good about saying ‘Ok, here are some options’ or ‘Let me go talk to the team and see if anybody has any ideas.’ We’d be there from 10am until 3 or 4pm, very grueling, but we got all the answers we were looking for.”
The exchange of information goes both ways. Each patient’s situation, symptoms, and experiences are unique, so providers at the clinic focus on listening to and learning from patients. Sometimes, this is through research—the clinic frequently runs survey-based studies to understand patients’ experiences in realms ranging from driving ability to intimacy and sexual health.
The clinic is also involved in nationwide drug trials to search for medications to treat ALS, as well as a study that seeks to understand the relationship between peoples’ genetics and their symptoms to better tailor treatment.
Whole-person care
Hayes adds that providers at the clinic aim to understand each person’s situation holistically. “As a team, we do really well thinking about the whole person,” she says.
Holt worked at U of U Health for 35 years, including as a clinic manager, so he knows better than most how busy providers’ schedules can be. But he notes that at the ALS Clinic, his doctors have always been willing to take the time. “I know they have lots of patients to deal with,” Holt says, “and what I love is the willingness to sit and listen.”
Bromberg says that the team mentality of the ALS Clinic is central to its work. “We’re dealing with a tough disorder, and we all appreciate that,” he says. “But we are all very dedicated to what we do and to each other. We’re sort of one for all, all for one, caring for these patients—the multi-musketeers.”
“It’s not about saying ‘Here’s how we’re going to cure you,’” Holt adds. “It’s, ‘How can we help you adapt to the inevitable changes that you’re dealing with?’ And they do it with kindness and compassion and skill.”
Media Contact:
Sophia Friesen
Manager, Research Communications, University of Utah Health
Email: sophia.friesen@hsc.utah.edu