June is being recognized as Amyotrophic Lateral Sclerosis (ALS) Support Month by the City of Swift Current.
City council was presented the proposal for the proclamation by ALS Saskatchewans' Corinne Brown, organizer of the Swift Current group.
Brown extolled the difficult reality of ALS.
"Most people haven't had experience with it and don't understand what this disease does," began Brown. "There are currently 2,500-3,000 Canadians living with ALS and 80 per cent will die within two to five years of diagnosis.
"It's not common like cancer or heart disease."
The disease most commonly is found in people between the ages of 40 and 70, but is not restricted within that range, being found in both younger and older patients. Almost all cases are random, with less than 10 per cent considered familial.
ALS gained a lot of notoriety back in 2014 with the 'ALS Ice Bucket Challenge, a social media challenge to raise awareness for the disease, as well as funding. In the challenge, partakers would film themselves either making a donation to ALS research or dumping a bucket of ice water over their heads and naming two other individuals to take the challenge after them. Oftentimes, people donated as well as taking the cold water plunge. The viral trend is estimated to have raised over $100 million over that summer and spread awareness of the disease across the planet.
"It brought more attention to the disease," told Brown. "But there wasn't a lot of media attention about the actual facts of the disease. It was, however, a great fundraiser."
The main fact that didn't get much coverage was the actual mechanics of the disease and what it does to those infected. It is a neurological disease that affects the nerve cells responsible for the control of voluntary muscle movement. These are called 'motor neurons'.
"This includes all movement, walking, talking, chewing, swallowing, and eventually breathing," exampled Brown.
Motor neurons run from the brain, down the spine, and to the muscles. As they degenerate, they are unable to send messages to the muscles. When muscles go without use, they deteriorate, and eventually dissipate and waste away.
The two main kinds of ALS that people generally suffer from are referred to as 'Top-Down' and 'Bottom-Up'.
Top-Down ALS begins at the head and traverses down the rest of the body. This form of the illness usually results in a shorter life expectancy, as individuals progress rapidly into the late stages of the disease.
Bottom-Up ALS begins in the far reaches of the externals, in the hands and feet, travelling up the limbs, taking longer to reach the critical faculties in the body.
"ALS affects every individual differently," stated Brown. "Not only with the symptoms, but also the progression which can vary from months to years."
The life span for those suffering from the disease is typically two to five years. There are exceptions to this, like Theoretical Physicist, Stephen Hawking who managed to survive the disease for 55 years. Hawking was the longest surviving patient ever afflicted with the disease and remains so since his passing in 2018.
But not everyone is so lucky when faced with this vicious disease.
"My mom was diagnosed in August of 2015," revealed Brown. "[She] passed in March of 2016, a mere seven months with very rapid progression."
Currently, there is no way to stop or treat ALS effectively. It is possible to slow the disease, but it is always fatal.
"80% of the burden is shouldered by family members," shared Brown. "It is a drain on physical, mental, partly physical, financial, and emotional resources of the caregivers. It truly becomes your world day and night. You live it constantly."
The Swift Current branch of ALS Saskatchewan is one of three support groups in Saskatchewan. They meet monthly to offer each other support as they live with the disease, as well as support those who care for the afflicted.
They talk openly about the realities and struggles the disease brings, and discuss new treatments and drug options. Other times, they just get together and talk, following no agenda for their meetings, instead just taking the time to enjoy the company and support of those who understand their situations.
"I truly believe that the people in our group have become friends due to this common theme in our lives," praised Brown.
The month of June is recognized as ALS month across Canada. The hope of bringing it to Swift Current is to raise awareness locally and shed some light on community members who struggle with this disease.
The ALS Society of Saskatchewan is hosting two walks this year, with the last two years being held virtually. This year's live walks will be in Regina on June 18, and Saskatoon on June 26.
"This will be my seventh year walking in honour of and memory of my mum while raising funds for this notable cause," Brown stated.
Council approved Brown's message and officially declared the month of June ALS month for 2022.
If you would like to learn more about ALS or would like to donate, you can visit the ALS Society of Saskatchewan's website here.