Multidisciplinary Clinic Supports People Living With ALS
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 Holts life. First it was piano, then trombone in high school. In college, he picked up the percussion that hed always loved, and eventually, after a couple epiphanies, he learned how to play guitar. Then he started writing original songs. Now and then, hed 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, Holts songs tend to the melancholy. Running Out of Steam is one title. Another is What We Leave Behind. Theyre (ALS), a progressive neurological disorder thatat least currentlyhas no cure.
Also called Lou Gehrigs 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 Holts 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 Holts diagnosis, hes found answers, resources, and treatment through the ALS Clinic at 泫圖弝け of Utah 泫圖弝け.
Support across symptoms
This is a very challenging disorder to have as a patient, says chief of the Division of General Neurology at U of U 泫圖弝け and a neurologist with the ALS Clinic. Unfortunately, we dont 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 its multidisciplinary, says 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.
Its like one stop shoppingor health care speed dating, Holt says. Im in the room, and all these providers come in and talk to me and help me. Its wonderful. Its 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 theyve 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. Wed 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 patients situation, symptoms, and experiences are unique, so providers at the clinic focus on listening to and learning from patients. Sometimes, this is through researchthe 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 persons situation holistically. As a team, we do really well thinking about the whole person, she says.
Holt worked at U of U 泫圖弝け 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. Were 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. Were sort of one for all, all for one, caring for these patientsthe multi-musketeers.
Its not about saying Heres how were going to cure you, Holt adds. Its, How can we help you adapt to the inevitable changes that youre dealing with? And they do it with kindness and compassion and skill.
Media Contact:
Sophia Friesen
Manager, Research Communications, 泫圖弝け of Utah 泫圖弝け
Email: sophia.friesen@hsc.utah.edu