By Patti Muck

When Houston Methodist Hospital neurology resident Dr. Keelie Denson asked ALS families the household's greatest medical need, the answer was easy for Angela Amar: "hands-on care for our loved one."

For 14 years, Angela and her three adult children had been caring for her husband Robert, a U.S. Army veteran diagnosed with Amyotrophic Lateral Sclerosis when he was a fit and healthy 45 years old. By early 2024, he'd lost the ability to walk, talk, swallow and breathe on his own.

During the disease's progression, just getting Robert to Houston Methodist's ALS Clinic and other appointments became a monumental struggle. At some point, leaving home was all but impossible. Bringing care to the house wasn't easy either.

"It is so difficult to find caregivers and nurses experienced in caring for someone on a ventilator, feeding tube dependent, non-verbal and paralyzed," says Angela.

Dr. Denson used the Amar family's feedback to help design a first-of-its-kind study offering old-time house calls to homebound ALS patients. The study, "Caring for the Homebound Patient with ALS," is following 24 patients and an optional 24 caregivers for 16 months.

Study participants must live within 50 miles of Houston and can't physically visit their neurology team any longer, typically because they're too weak and on a ventilator or because they don't have transportation, lack access to technology or have financial hardship. For one reason or another, they've missed one or more clinic visits and are basically on their own in the final stages of their disease.

ALS treatment: back to the basics

ALS patients and their families can be overwhelmed by the struggle to obtain consistent continuity of care from their team of specialists — neurologists, social workers, speech therapists, physical and occupational therapists and dietitians. Worst-case scenario? They stop attending clinic and drop off physicians' radar.

"We're being pulled out at the stage of the disease where our patients are most vulnerable and need us most," says Dr. Denson, a second-year resident.

In May, Dr. Denson launched the study to address this critical need and to collect data to measure the effectiveness of end-stage ALS home care.

Half the patients, the control group, will receive telehealth visits with a neurologist. The other half, the intervention group, will receive quarterly home visits from a neurologist and a social worker, accompanied by a live video conference that includes physical and occupational therapists, a dietitian, a speech therapist and a medical equipment expert — all at the patients' bedsides.

Before each visit and at the end of the study, patients and caregivers will complete the gold standard quality of life surveys that will provide data to prove or disprove the theory that multidisciplinary home health care visits improve life for these ALS patients.

"If this program meets its endpoints and proves to be feasible, there will be an opportunity to create guidelines and curriculum for other institutions to replicate the program across the nation," Dr. Denson says. "Our hope is that this program will become a covered health care service for patients who are homebound because of ALS."

Value of home care when complications set in

Robert Amar was one of the first patients enrolled in the study.

On the day of his first home visit, Robert was cleaned up, comfortable in his bed, happy and ready to see his team. Five minutes later, complications with his new tracheostomy for breathing, combined with the movement of the morning routine, sent his oxygen levels plummeting.

"Things can change in a heartbeat," says Angela, Robert's high school sweetheart. "I'm usually very strong, but I did break down a little bit. It was a very bad day for Robert, but the team got to see the good and the bad. You're sharing your life with them, and you can see in their faces how concerned they are and how much they care."

Angela, the three grown kids — Victoria, Robert and Marissa — and a few dedicated caregivers were Robert's 24/7 caretakers for the incurable disease of the neuromuscular system, commonly known as Lou Gehrig's disease after the New York Yankees' hero of the 1930s.

Dr. Stanley Appel, director of the Johnson Center for Cellular Therapeutics at Houston Methodist and internationally respected ALS expert, describes the disease as ultimately "giving the patient a ringside seat as their bodies melt away." He founded the nation's first multidisciplinary ALS Clinic at Houston Methodist in 1982.

"You hear those three letters — A-L-S — and it just changes your whole life forever," says Angela, Robert's wife of 29 years.

First-of-its-kind study benefits from multidisciplinary team

Dr. Denson knows firsthand what the Amar family and all her ALS patients are up against. Her own family watched as her father James faced ALS from her childhood until his death when she was 13.

"As patients progress in their disease, it becomes harder and harder for them to make it to multidisciplinary care visits in a clinic setting," Dr. Denson says. "These are already geographically sparse to begin with."

Several neurologists, a social worker, physical therapy, occupational therapy and speech therapy specialists, a dietitian and others jumped in to make Dr. Denson's study possible, bringing invaluable experience and expertise from years of working in Houston Methodist's ALS Clinic and following the course of patients' lives. The study also benefits from the support of Dr. Ericka Greene, director of the neuromuscular clinic and vice chair of education of the neurology training programs.

"We have a phenomenal team, and everyone's been kind enough to not only mentor me but donate their time as well," Dr. Denson says. "It wouldn't be possible without them."

Dr. Denson presented a talk on the home care study at an ALS symposium in Switzerland last year — a forum that generated considerable enthusiasm from fellow physicians. She plans to compile results from the study into a formal report following the 16-month trial.

Amars celebrate milestones and advocate for ALS research

Over the years, Angela and her family have become advocates for other ALS families and for research into better treatments. They express excitement to be part of the home study.

The close-knit family has always counted their blessings. They were able to celebrate milestones that many ALS families never get to see. Robert met his goal of watching all three children graduate, first from high school and then from Texas A&M University. His oldest daughter, Victoria, hopped on his lap, and they did an impromptu wheelchair dance at her wedding.

Recently, his grandson Gavin attended his first Houston Astros game at Minute Maid Park and brought his grandfather an Astros T-shirt to Houston Methodist where Robert was recovering from a recent tracheostomy surgery. A season ticket holder before ALS entered his life, Robert and his family attended Astros' World Series games twice. He always made it a point to cheer on his favorite team.

"Robert was always very determined, with this positive attitude that 'I'm going to live each day like I always have — to the fullest,'" Angela says.

Dr. Denson's study is possible because of support from The Constance M. and Byron F. Dyer Fellowship and The Lou and Eleanor Gehrig Family Foundation.

For more information on Houston Methodist's ALS Clinic, visit www.houstonmethodist.org/ALS-Clinic.

Postscript: Robert Amar passed away shortly after his 59th birthday in mid-May 2024. His life of courage and determination lives on in Kingwood High School's annual "Robert Amar Mental Toughness Award" and in his participation in "Caring for the Homebound Patient with ALS," the research program outlined in this story designed to help ALS patients now and in the future.