Robert Amar, a U.S. Army veteran, was diagnosed with Amyotrophic Lateral Sclerosis when he was a fit and healthy 45 years old. Fourteen years later, he has lost his ability to walk, talk, swallow and breathe on his own.
His high school sweetheart Angela, and the couple’s three adult children – Victoria, Robert and Marissa – and a few dedicated caregivers are his 24/7 caretakers. Commonly known as Lou Gehrig’s disease after the New York Yankees’ hero of the 1930s, ALS is an incurable disease of the neuromuscular system. The disease’s progression and symptoms vary widely from patient to patient, ultimately “giving the patient a ringside seat as their bodies melt away,” says Dr. Stanley Appel, director of the Johnson Center for Cellular Therapeutics at Houston Methodist and internationally respected ALS expert. 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. We just love him so much and we would do anything for him.Angela, Robert’s wife of 29 years
Robert is among the first Houston Methodist ALS patients enrolled in a research study designed to provide a multidisciplinary standard of care to those whose disease has rendered them homebound.
24 ALS patients enrolled in first-of-its-kind study
Dr. Keelie Denson, a second-year neurology resident at Houston Methodist, watched first-hand as her father James and family 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,” says Dr. Denson. “These are already geographically sparse to begin with.”
Eventually, 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. There are no studies – or resulting data – to address this critical need. Until now.
Supported by Dr. Ericka Greene and the multidisciplinary ALS team at Houston Methodist, Dr. Denson designed a study, “Caring for the Homebound Patient with ALS,” that is following 24 patients and an optional 24 caregivers for 16 months. Patients live within 50 miles of Houston and can’t physically visit their neurology team any longer, maybe because they’re too weak and on a ventilator or 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.
Half the patients – the control group – will receive telehealth visits with a neurologist. The other half – the intervention group – will get 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.
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.”
Back to the Basics
Early in the study planning stage, Dr. Denson questioned her ALS families about what they found lacking in ALS care. For the Amar family, the answer was easy: “Hands-on care for our loved ones,” Angela recalls. As her husband’s disease progressed, getting him to the ALS Clinic and other appointments became a monumental struggle. For Robert, leaving home was becoming impossible. It is also very difficult to find caregivers and nurses experienced in caring for someone on a ventilator, feeding tube dependent, non-verbal and paralyzed.
Still, the close-knit family 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 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, the first and only grandson Gavin attended his first Houston Astros game at Minute Maid Park and brought his grandfather an Astros T-shirt to Houston Methodist Hospital where Robert was recovering from a recent tracheostomy surgery. A season ticketholder 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 has always been very determined, and he has this positive attitude that ‘I’m going to live each day like I always have – to the fullest.’” Angela says.
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,” Angela says. “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.”
Dr. Denson’s presentation of the ALS home care study generated considerable enthusiasm at an ALS symposium in Switzerland last year, and results will be compiled into a formal report following the 16-month trial.
(NewsWise/YVH)