"Two to three Canadians die every day from ALS. It is the most common form of acquired motor neuron disease," says Cleary, PhD, who also works as a speech-language pathologist and Board Recognized Specialist in Swallowing and Swallowing Disorders at the University of Alberta's ALS Clinic.
Cleary loves how the #icebucketchallenge has brought so much awareness, support and attention for ALS, but wants people to understand more about the disease and its ailing effects on Canadians.
Amyotrophic lateral sclerosis (ALS) can strike its victims anytime in adulthood and typically presents between 50 and 60 years of age. ALS is not rare - the incidence rate is five times that of myasthenia gravis and half of multiple sclerosis. Its relatively low prevalence - approximately 3000 people in Canada - is attributable to the inevitable and rapidly fatal nature of the disease. Half of those affected perish within three years of diagnosis and upwards of 90 per cent die within 5 years.
"Our team at U of A aims to enhance patients' quality of life and minimize symptoms," Cleary says.
ALS onset and progression can be very quick, over weeks and months, or for some, over many years.
"Most patients have to make frequent adjustments in their lives to work around their changing abilities. ALS can take away speech, swallowing, arm and leg strength, balance and in some people, affect their thinking. Some patients have all of these challenges at once; some may have only one part of their body changing," explains Dr. Wendy Johnston, medical director of the ALS Clinic and professor in the Faculty of Medicine and Dentistry. "Some people require lots of help from family, friends and medical care, and others are still working."
Johnston leads a team of neurologists, physiatrists, respirologists, speech-language pathologists, social workers, dietitians, physical therapists, occupational therapists, nurses and more at the ALS clinic, serving 130 ALS patients in Northern Alberta.
"The ALS clinic offers proactive care across the spectrum of challenges faced by ALS Patients (PALS) and their families. We are an interdisciplinary clinic with experts in diagnosis and symptom management, rehabilitation, and meaningful interventions as well as psychological support."
Cleary's focus is on speech, swallowing and breathing problems for patients with ALS.
"Most patients with ALS present with speech, swallowing and breathing problems in the late stages of the disease and many patients experience choking, weight loss, and drooling," he explains.
His research team studies the effects of different breathing treatments on swallowing and airway protection, the use of radiation therapy to improve secretion management, and the development of compensatory techniques to improve eating and mealtime quality of life for individuals with ALS.
"As individuals with ALS begin to experience swallowing difficulty and/or shortness of breath, they often express a fear of choking or suffocating the late stages of the disease and this anxiety can have a profound impact on quality of life. Clinicians can help to relieve these fears and improve function by offering compensatory strategies and interdisciplinary interventions."
Cleary hopes the Ice Bucket Challenge that has taken over social media in the last few weeks will bring in support for further research, and ultimately benefit patients suffering from ALS.
Johnston agrees. "My main reaction was - how fitting - when I have to tell someone and their loved ones, that he or she has ALS, I may as well have thrown a bucket of ice water over them all. The only difference is, they can't laugh, towel off, change into warm and dry clothes and carry on. ALS changes everything, forever. I hope everyone who has watched a video or taken part in a challenge, knows that ALS is a disease that takes and takes, and remembers to give."
To donate, visit Stuart Cleary's ALS Ice Bucket Challenge Page.