Adam Rombough, 33, knew something was wasn’t right when his speech became slurred and he struggled to put a cap back on his water bottle.
“I had no idea what was going on. I was really worried about what it might be. Every day things were getting worse,” says Adam.
“At one point, when he used to run a construction company with his little brother, clients thought he was drunk at work meetings,” says Tamis Rombough, Adam’s mother.
Doctors thought he might have multiple sclerosis, but in February 2017 he was diagnosed with amyotrophic lateral sclerosis (also known as ALS, Lou Gehrig’s disease or motor neuron disease).
“He has a rapidly progressive form of bulbar ALS. Bulbar ALS causes paralysis of the facial, head and neck muscles involved in speech, swallowing and breathing.
"As he eloquently puts it, he is not slowly dying, he is quickly living.”
Sonya Wheeler, Respiratory Therapist, Clinical Lead – ALS and Outpatient Respiratory Clinics
Adam needs a motorized power chair to get around, is losing the ability to talk and relies on support from his BiPAP machine to help him breathe. This is why he has come to the ALS clinic at the Misericordia Community Hospital to work with its specialists.
“The ALS clinic at the Kaye Edmonton Clinic has a respirologist and respiratory therapist who screens a patient’s pulmonary function and symptoms until they need BiPAP; then they are referred to us at the Misericordia Community Hospital. Close followup is an important requirement for the patient to become a successful user of BiPAP. My role is to continue following the person via remote monitoring of the equipment, phone, telehealth and email to support the individual’s respiratory needs,” says Sonya.
Collaboration with respiratory therapists across Alberta and into the border towns of British Columbia and Saskatchewan is what makes Covenant Health’s ALS clinic unique.
“It has been a vital part of the success of this program. We all work toward a common goal of improving quality of life and end-of-life care for people living with ALS,” says Sonya.
The quality of life Adam has chosen is one surrounded by the love of his family. Despite the daily frustrations and challenges of living with ALS, his unwavering positive attitude is what gets him through.
“Live in the moment and don’t put anything off,” says Adam with a grin on his face.
Approximately 2,500 people are living with ALS in Canada.
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