Tim Hoyt spent decades teaching chemistry at the University of Puget Sound. People called him Wizard.
“I just loved my work: Blowing things up. Changing things’ color,” said Hoyt, who still can be seen on the school’s website wearing a wizard’s hat. “I would have worked until I went up in a puff of smoke.”
Instead, a diagnosis of ALS forced him to retire this summer and is robbing him of muscle strength and control one day at a time.
Amyotrophic lateral sclerosis, often referred to as Lou Gehrig’s disease because it became well-known when the baseball player developed it, strikes about 2 people out of every 100,000 in the United States. The ALS Association estimates several hundred people have the disease at any time in Western Washington.
The disease kills motor neurons, which help the brain control muscles. When the motor neurons die, the muscles stop working and waste away, paralyzing the body.
Most people die within a few years of diagnosis. There is no cure. There is just one drug that treats it, and it extends life by a few months. So when a person is diagnosed with ALS, all efforts are focused simply on making life easier.
That’s where the ALS clinic at St. Joseph Medical Center in Tacoma comes in. The clinic is the only one of its kind in the South Puget Sound region. Once a month, a team of care providers led by a neurologist sees patients like Hoyt all at once, turning what could be individual appointments with six different professionals into one three- to four-hour visit.
Hoyt is an Army veteran and receives much of his care from the Veterans Administration. He also kept his private insurance through the university, which helps pay for his visits to St. Joseph’s ALS clinic.
“They’re so nice. They really look out for me,” he said.
Eighteen months ago, he met Dr. Ali Habib, a neurologist with CHI Franciscan Health, St. Joseph’s parent company. Habib diagnosed Hoyt with ALS.
The News Tribune went with Hoyt to his clinic appointment earlier this month. During just one visit, he was evaluated by a neurologist, a respiratory therapist, a physical therapist, a dietitian and a speech therapist.
The appointment began with the simple question of most doctor appointments: How are you doing?
“I’m fatigued,” Hoyt said. “And fatigue is really a hindrance for my lifestyle.”
Hoyt’s VA doctor has prescribed a stimulant to help with his fatigue, but he doesn’t want to take it. “Hell no,” he told Habib.
Then, an acknowledgment.
“You know I’m going to do it when you say to do it, even if I say ‘hell no’ now,” Hoyt said.
‘AHEAD OF THE CURVE’
On this Monday in early October, Hoyt sits in an exam room designed for one patient and one doctor, but it’s filled with a half-dozen people. A large piece of butcher paper is taped to the back of the door, labeled “Questions for Providers” in black marker. Through the three-hour appointment, the doctors jot notes on the back to ensure things don’t get missed.
“The clinic keeps patients and caregivers ahead of the curve,” said Habib, who specializes in ALS. “We anticipate problems instead of playing catch-up to solve them.”
Most of the appointment was spent assessing exactly how Hoyt’s muscles are operating, with the discussion punctuated by adjustments he’s making as his disease progresses.
He’s planning renovations to his home. He has a wheelchair on order. He’s taped his right shoulder to provide more stability as the muscles weaken. He also has a new way to feed himself: a machine called a “meal buddy,” which can be powered by breath alone.
The clinic helps the providers share what they know, and they learn from their patients as well. No one on Hoyt’s team had heard of the “meal buddy.”
“Did you build this?” Habib asks.
“No, I bought it!” Hoyt replied, going on to explain how it works.
“This is available commercially? No kidding?” Habib asks with a laugh. Now Habib has the idea at his disposal when treating other patients. The device isn’t cheap: It runs $4,000 online. In Hoyt’s case, the VA paid for it.
Ever the scientist and teacher, he regularly talks to the manufacturer about how the tool could be improved.
BEST FOR PATIENTS
Finding life-enhancing equipment is one of the challenges for people with ALS. The ALS Association is a prime resource for people who need equipment they otherwise couldn’t afford.
The association also certifies multidisciplinary clinics for their treatment of ALS. The only such clinic in Washington is at Seattle’s Virginia Mason hospital. It opened in 2005, meets weekly, and averages 150 new patients each year.
The ALS clinic at St. Joseph started about two years ago. It has nine patients who are seen on a rotating basis. It’s still an experiment, Habib said.
A multidisciplinary clinic “is not an easy endeavor to support,” he said, because of financial considerations. Time is money. Health care providers can see more patients by themselves in one day than they can during a clinic. But for a person with ALS, being able to make one trip to see all his providers is almost priceless.
“It’s not the most efficient way to organize the providers’ time, but it is the most efficient way to provide care to the patient,” Habib said.
Franciscan spokesman Scott Thompson said the company doesn’t have exact costs of the clinic, but it considers the cost to be about the same as if patients saw each provider individually. Holly Martindale, a registered dietitian, said the clinic helps her manage her workload.
“It’s a great way for me to find out who needs more of my time,” Martindale said. She spent several hours with Hoyt at the beginning of his treatment. But during this appointment, she spent just a few minutes encouraging him to drink more water and eat more trail mix, in addition to his beloved Junior Mints.
Thompson said the patient experience is what counts.
“We hope to expand the clinic to fulfill the needs of all ALS patients in the South Sound,” Thompson said, with the clinic meeting as frequently as once a week, though there is no timetable for that.
‘THEY MISS OUT’
Multidisciplinary teams are the best way to treat ALS, said Caryn Wise, who provides care services for ALS patients in the South Sound and Olympic Peninsula for the ALS Association. She covers seven counties and has about 90 clients.
“I strongly encourage my folks if they can to seek out a multidisciplinary team,” she said.
Clinics like the one at St. Joseph can extend an ALS patient’s life by six months, Wise said. Patients who aren’t seen in a clinic “miss out on respiratory treatments. Or they miss out on equipment. For example, a physical therapist can measure them for a wheelchair that fits their body.”
“They miss out on treatments that can make them more comfortable,” she said.