Denny Lewis first noticed breathing issues while cycling. Nearly three years ago, his tongue felt swollen, and something squeezed his windpipe.
After he and wife Dawn Lewis returned home to Lake Roosevelt from Hawaii, a diagnosis from Spokane specialists took time. It came on Sept. 26, 2019 – amyotrophic lateral sclerosis (ALS), or Lou Gehrig’s disease.
ALS causes progressive degeneration of motor nerve cells in the spinal cord and brain, leading to weakness and eventually loss of control with muscles that affect walking, chewing, swallowing, speaking and breathing.
After the devastating news, the couple plugged into a multidisciplinary care model geared to improve ALS patients’ quality and length of life. In one afternoon clinic, Lewis sees about six specialists – from a physiatrist to a respiratory therapist – rotating to enter his exam room.
“The typical patient goes once every three months, and that’s what we do, so we’re there for three to four hours,” said Dawn Lewis, who helps her husband communicate because he now whispers or uses an adaptive device.
They go to the Providence Spokane Neuroscience Institute’s ALS clinic, which opened in June 2020, for sessions on the second and fourth Thursdays of each month at St. Luke’s Rehabilitation Medical Center.
“What is so nice about it is you go and stay in one place while they rotate through, so instead of five or seven different appointments at all these different offices, they all see you,” she said.
Denny Lewis, 73, prefers the setup. “It’s helping me with knowledge, and the timeframe of all the visits in one day is super helpful.”
The clinic supports about 30 patients across different schedules, so typically five patients are there at one time. It partners with the local ALS Association chapter and the ALS Service Organization for loaned or free adaptive equipment and support groups. It also collaborates with Steve Gleason Institute for Neuroscience.
Clinic specialists include neurologist Dr. John Chapin, physiatrist Dr. Jonathan Morrill and nurse practitioner Caitlin Shino. Others are Ashleigh Solak, speech language pathologist; Nick Wood, registered dietitian, Brandi Gore, respiratory therapist; and Nyssa Benesch, physical therapist. Michelle Darrington, registered nurse, handles the logistics and supports the specialists’ schedule.
They might see patients in pairs – the speech therapist and registered dietitian work together – or individually.
“It ends up being kind of a long day for patients, but in that four hours, they get a lot done,” Chapin said. “They get all these expert opinions about their care in one setting.
“Studies have confirmed that people who participate in these multidisciplinary clinics, they have better quality of life, and they live longer.”
With complexities and various symptoms among ALS patients, Chapin said he couldn’t manage all the needs alone at one appointment. Patients leave the local clinic by about 4 p.m., when all the specialists then meet to discuss and coordinate care for those seen that day.
“ALS is a bad disease,” Chapin said. “Typically, it will start in one part of your body, then it will relentlessly progress, eventually getting almost all areas.”
That brings multiple issues affecting movement. Other issues might be excess laughing or crying, emotional and financial strains and caregivers’ burnout.
“All these issues can be present in one clinic visit, so if I was by myself, there is no way I could handle all of that in one visit,” Chapin said. “With a team approach, we can.”
Darrington said patients describe both convenience and lower copay costs. “This is what we call a one-stop shop.”
“Everyone shows up around 12:30 p.m., and our clinic starts at 1 p.m.,” Darrington said. “We try to keep each rotation to a half hour. I try to keep everyone on time.”
Darrington also arranges follow-up care needs or visits, if requested, to see a specialist between clinics.
About 6 people out of 100,000 have ALS at any time in the U.S., which equates to 15,000 to 21,000 Americans, says the ALS Association. The local ALS clinic draws patients from Washington, Idaho, Oregon and Western Montana.
The average age for diagnosis is between 55 and 65, but some people are in their 20s or older than 70. There’s no cure. Medications help symptoms, Chapin said, such as for common muscle cramping. He also discusses advanced directives and end-of-life care.
“Most of the people diagnosed with ALS will pass away within four years, but some live longer, and sometimes it’s substantially longer,” Chapin said.
Impaired breathing and feeding are major issues, he said.
Similar to a continuous positive airway pressure (CPAP) machine for sleep apnea, ALS patients use bilevel positive airway pressure (BiPAP) equipment. It helps them breathe deeper and blow out carbon dioxide. As the diaphragm muscle weakens and repeated shallow breaths are taken, it means more carbon dioxide is retained in the bloodstream.
At a certain level, “There is fatigue, malaise, headaches, not sleeping well, not eating well,” Chapin said. “With this equipment like a BiPAP, people will blow out that CO2 especially at night, and then they feel better.
The BiPAP allows them to rest the diaphragm muscle at night so it’s not always working so hard, and that seems to make that muscle last a bit longer, Chapin said.
With impaired swallowing, people become malnourished, dehydrated and can’t take medicine. Many patients then receive a feeding tube, a difficult adjustment, he said.
A few patients get a tracheotomy for a permanent ventilator for breathing, but many decline the invasive option, said Shino, who does clinic medical work and research. Former WSU football and NFL standout Steve Gleason had a tracheotomy a few years after his 2011 diagnosis.
Shino began six years ago working with ALS patients previously at a MultiCare Rockwood ALS clinic, which closed, she said. Afternoon clinics help patients who have to navigate equipment or are moving slowly, Shino said. “The travel time is cut down, as is the expense and the physical effort. For some patients, it’s very taxing.
“Then the real benefit is after the clinic. We’re able to all talk with each other about the patient’s care, and oftentimes, that’s when we hit on important things.”
They discuss new equipment or problem solve. “We’re able to learn from our colleagues in all these different disciplines about the latest and greatest.”
The Lewises like a later clinic time. Waking about 10 a.m., he gets off a night ventilator to start breathing on his own.
“Getting around is difficult,” Dawn Lewis said. “He gets tired really easily. If we had to go to town and have six different appointments, it would totally wipe him out. We didn’t realize that at the onset. It’s like a godsend now.”
Local journalism is essential.
Give directly to The Spokesman-Review's Northwest Passages community forums series -- which helps to offset the costs of several reporter and editor positions at the newspaper -- by using the easy options below. Gifts processed in this system are not tax deductible, but are predominately used to help meet the local financial requirements needed to receive national matching-grant funds.
Subscribe now to get breaking news alerts in your email inbox
Get breaking news delivered to your inbox as it happens.