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鈥檚 life. First it was piano, then trombone in high school. In college, he picked up the percussion that he鈥檇 always loved, and eventually, 鈥渁fter a couple epiphanies,鈥 he learned how to play guitar. Then he started writing original songs. Now and then, he鈥檇 invite musician friends over. 鈥淲e would have what we call hootenannies in the backyard, around the fire pit, playing music, playing guitars, bass, harp, and drums,鈥 Holt says.
These days, Holt鈥檚 songs tend to the melancholy. 鈥淩unning Out of Steam鈥 is one title. Another is 鈥淲hat We Leave Behind.鈥 They鈥檙e (ALS), a progressive neurological disorder that鈥攁t least currently鈥攈as no cure.
Also called Lou Gehrig鈥檚 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鈥檚 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鈥檚 diagnosis, he鈥檚 found answers, resources, and treatment through the ALS Clinic at 麻豆学生精品版.
Support across symptoms
鈥淭his is a very challenging disorder to have as a patient,鈥 says chief of the Division of General Neurology at U of U Health and a neurologist with the ALS Clinic. 鈥淯nfortunately, we don鈥檛 have an effective treatment. So the mainstay of the clinic is to provide support for the patient.鈥
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.
鈥淲hat makes the clinic unique is that it鈥檚 multidisciplinary,鈥 says associate professor of physical therapy and athletic training and a neurologic clinical specialist with the ALS Clinic. 鈥淎ll the providers are there.鈥 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.
鈥淚t鈥檚 like one stop shopping鈥攐r health care speed dating,鈥 Holt says. 鈥淚鈥檓 in the room, and all these providers come in and talk to me and help me. It鈥檚 wonderful. It鈥檚 not as fatiguing.鈥
Learning from each other
For Holt, a particularly valuable aspect of the clinic has been providers鈥 willingness to dig up answers to any questions he has. 鈥淚 used to come in armed with all these questions, pages and pages of observations about what had happened to me and what it means,鈥 he says. 鈥淎nd they鈥檝e always been very good about saying 鈥極k, here are some options鈥 or 鈥楲et me go talk to the team and see if anybody has any ideas.鈥 We鈥檇 be there from 10am until 3 or 4pm, very grueling, but we got all the answers we were looking for.鈥
The exchange of information goes both ways. Each patient鈥檚 situation, symptoms, and experiences are unique, so providers at the clinic focus on listening to and learning from patients. Sometimes, this is through research鈥攖he clinic frequently runs survey-based studies to understand patients鈥 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鈥 genetics and their symptoms to better tailor treatment.
Whole-person care
Hayes adds that providers at the clinic aim to understand each person鈥檚 situation holistically. 鈥淎s a team, we do really well thinking about the whole person,鈥 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鈥 schedules can be. But he notes that at the ALS Clinic, his doctors have always been willing to take the time. 鈥淚 know they have lots of patients to deal with,鈥 Holt says, 鈥渁nd what I love is the willingness to sit and listen.鈥
Bromberg says that the team mentality of the ALS Clinic is central to its work. 鈥淲e鈥檙e dealing with a tough disorder, and we all appreciate that,鈥 he says. 鈥淏ut we are all very dedicated to what we do and to each other. We鈥檙e sort of one for all, all for one, caring for these patients鈥攖he multi-musketeers.鈥
鈥淚t鈥檚 not about saying 鈥楬ere鈥檚 how we鈥檙e going to cure you,鈥欌 Holt adds. 鈥淚t鈥檚, 鈥楬ow can we help you adapt to the inevitable changes that you鈥檙e dealing with?鈥 And they do it with kindness and compassion and skill.鈥
Media Contact:
Sophia Friesen
Manager, Research Communications, 麻豆学生精品版
Email: sophia.friesen@hsc.utah.edu