Offering comfort and support
After ALS robbed her of her father, woman forms local support group to help others suffering from incurable disease
Cheryl Power knows the realities of living with ALS. It was her own familial experience with the affliction, and its devastation on not only the body, but the psyche, which spurned her on to form the Newfoundland and Labrador chapter of the ALS Society.
Now ALSNL’S executive director, Power lost her father, Leonard, to the disease in 1989.
“Any of our families, we really don’t know where to go, what to do. You’re just in an abyss or something,” Power recalls of her family’s experience on the day they found out about her father’s diagnosis.
His diagnosis came in 1989, and she was by his side when it happened.
“I remember leaving my father. I went to the hospital with him because he had an appointment with a neurologist who came in from St. John’s. We live in Corner Brook, so our family doctor sent him to a specialist, but we didn’t know what kind of a specialist it was at that time. He had a letter and it was sealed. Mom stayed home. She knew something was wrong and we figured cancer, because everything’s cancer. You don’t think of these types of neurological diseases. So I went to the hospital with my father,” she explains.
EARLY SIGNS
There were early signs something was happening to her father, she says, but her family didn’t know anything about ALS, which is more commonly known as Lou Gehrig’s disease after the Yankee player who was forced to retire from professional baseball after his performance on the field became hampered by an undiagnosed ailment. Later confirmed to be ALS, Gehrig died two years later.
“We could notice things, but he was getting older. A couple of times, he’d try to get out of a chair or had trouble kneeling down and then getting up, minor things,” she remembers.
“So we bought him an exercise bike, which was just the worst thing in the world you could do. You can’t build up the muscles, they’re gone. But not knowing, you have no clue. You’re just thinking that this is what it is.”
She was shocked to hear his diagnosis.
“We went in there and he saw the neurologist, and he didn’t want me to go in with them. I’m the only daughter and I’m Dad’s girl. And I’m telling you, it was rough,” she said.
“He was diagnosed that very day. They knew what he had. And he told me, and we were sitting down in the waiting room. And anyway, he said, ‘this is what I have.’”
GROWING NUMBERS
According to ALS Canada, Amyotrophic Lateral Sclerosis (also known as motor neuron disease) is a disease that progressively paralyzes people because the brain is no longer able to communicate with the muscles of the body that we are typically able to move at will.
Gradually, the muscles of the body break down, restricting the ability to walk, talk, eat, swallow, and eventually breathe.
As of June 2022, 3,000 Canadians were living with ALS. The disease is fatal, with four out of five people dying within two to five years of their diagnosis.
The ALS Society of NL currently has 56 registered clients, which Power says is a rising number.
“That’s a lot,” she explains solemnly.
“Definitely, the rates are going up. The incidences of ALS, I’m sure that’s not all that are diagnosed. There’s more, and I’m sure we just don’t know about it. We know about most of them. Some people are private, of course. Sometimes it takes a while for somebody to even reach out because it’s so emotional.”
Using their three pillars to provide direct support to people with ALS, their families, and caregivers, raise funds for patient services and research, and increase public awareness and understanding of ALS, ALSNL advocates provincially and locally for better government support and access within the health-care system for people touched by ALS.
For Power and the tightknit, hard-working group of dedicated volunteers and board members that make up ALSNL, comfort and compassion are the tools of the trade.
“Unfortunately, there’s not much we can do to make their health better. We can make them comfortable in their home. We can keep them in their home because of our equipment loan program, which costs them absolutely nothing,” Power explains, remarking that the organization has achieved so much, thriving on the generosity of donors.
“If you can see around my little office, it’s a 10x12 office. And this is the ALS Society of Newfoundland and Labrador. And it’s astounding to think, and amazing and extraordinary, what we do. And we do it fast and get our clients in their homes.”
Being able to stay home with their families is important, she says. The equipment that’s needed to accomplish that is very expensive, she points out, but the society provides it free of charge. She’s thrilled the society can take those steps to help ease the burden on families.
OFFERING SUPPORT
June marks ALS Awareness Month across Canada, with the marquee fundraising event of the year being the annual Walk to End ALS, which this year has a national goal of $2,050,000.
Sixty per cent of funds raised in the province stay within the province to bolster ALSNL’S equipment loan program, with 40 per cent going directly to ALS Canada’s research programs.
Finding a cure and eradicating ALS is the ultimate endgame.
Power ponders that thought: a world without ALS.
“It would be wonderful, absolutely wonderful. It would be our dream.”
For now, Power and her team endeavour to ease the burden of a cureless affliction, one that breaks down not only the individual, but the family dynamic if not tackled with patience, strength, and most importantly, love.
“It can happen to anybody. And there’s hope in some of the research that’s going on. You know, one of these days, I’m sure we will find a cure. But for right now, we help in the best ways that we can, and we support,” she says.
That support can take on many forms, Power adds.
“You get on the phone and you have a chat or you go to visit. And it’s just one big family who helps each other. It makes you feel really good. And not only me – we have a board and we have many volunteers, you know, and our board is all affected by ALS. They’ve all had a mother, father, a brother, a husband, a wife,” she adds emphatically.
“We’re proud of what we do, very proud of what we do and it’s very emotional. Some days I leave this office, I go home early because I just can’t take it. And then you get up in the morning and you start afresh and you know you’ve done something to help somebody.”
For more information on ALS and the services offered through the ALS Society of Newfoundland and Labrador, visit alsnl.ca and their official social media.
As of June 2022, 3,000 Canadians were living with ALS. The disease is fatal, with four out of five people dying within two to five years of their diagnosis.