KNOXVILLE, Tenn. — For Travis and Hope Forrester, their love blossomed in the outdoors. The couple shares a love of hiking, fishing and faith. But in recent months, that faith has been tested.
“It's not easy,” Hope said. “That's the hard truth of it. It's just not.”
Last November, Travis was diagnosed with ALS, or amyotrophic lateral sclerosis. It’s a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. The disease steals a patient’s ability to walk, talk, eat and eventually breathe.
“That’s a pretty hard diagnosis to get,” Travis said.
The symptoms first started near the end of spring last year. Travis said it started with his left leg. He experienced balance issues and then weakness. But it took a fall from his porch to finally make a doctor’s appointment.
“There was a lot of stuff that we thought it could have been at first,” he said. “And ultimately, you know, it ended up being the one thing we didn't want it to be.”
Hope admits she initially went into fight-or-flight mode, struggling with the reality of her husband’s terminal diagnosis. But then, she said they decided to hit the bucket list hard. They went on a family trip to Alaska, took a beach trip to Destin, and then carved out three weeks to travel through Europe, making stops in Switzerland, Italy, Greece, France and Malta. During that Europe trip, Travis was using a specialized wheelchair.
“I'm a big researcher,” Hope said. “And so, was it easy? No. But was it worth it? Absolutely.”
Hope said, even during those three weeks in Europe, she could see her husband’s disease progressing. That’s why she says it’s been so important to have their appointments at the Cole Neurology ALS Clinic, University of Tennessee Medical Center.
“This was life-changing coming here because then you're getting all the information that you didn't even know you needed,” she said.
The clinic allows ALS patients to come to one central location so that they don’t have to travel from place to place for separate appointments. At the clinic, they can meet with a neuromuscular physician, licensed clinical social worker, pharmacist, registered nurse, physical therapist, occupational therapist, speech therapist, along with representatives from the ALS Association and two medical equipment companies. Patients also are able to meet with a respiratory therapist and a dietitian.
“It's a one-stop shop,” Travis said. “I mean, imagine if you had to go shopping and you had to go get your milk one place and your eggs another place, and it's all right there.”
Dr. Randy Trudell is the clinic’s clinical director. He says the clinic is currently serving around 30 to 40 patients.
“We have the very best therapists here, and the advantage to the patient is they get to see all those people within a couple of hours,” Dr. Trudell said. “And then we come up with a game plan, what do we think is going to help the patient the most.”
Dr. Trudell said the clinic is focused on symptom treatment and helping patients to avoid complications. That’s because there is currently no cure for ALS.
However, Dr. Trudell pointed to a treatment just approved by the FDA as proof that the tide is turning.
“That crack in the treatment is going to mean there’s going to be more treatments available because we now have a better clue about what’s going to work,” Dr. Trudell said. “So, yes, this is going to be treatable.”
Until that cure is found, the Forresters say they will keep checking off those bucket list items. And Travis has committed to what he calls being the light, instead of the shadow.
“One day it's going to beat me,” he said. “But until that day, I'm not going to let it.”
The Forresters also plan to take part in this weekend’s Walk to Defeat ALS as Team Travis. The walk happens the morning of Saturday, Oct. 7, at Adair Park in Knoxville. Check-in is at 9 a.m. The walk starts at 10 a.m.