Life-changing disease affects hundreds of British Columbians: ALS
They’re three letters with devastating consequences: ALS.
Amyotrophic Lateral Sclerosis, also known as Lou Gehrig’s Disease, is unforgiving, taking away the ability of those who have it to care for themselves.
Dave Alexander was wondering why it felt like he was dragging his leg at times. He also felt tired and clumsy. The father of four brushed it off, but finally went to the doctor. In all, it took a year to figure out what was wrong. In September 2016 the diagnosis came: ALS.
“You just freeze,” he said. “You even don’t don’t know what to say.
“It was a super tough day, a super tough weekend, of just trying to wrap your head around, ‘OK, what’s life going to look like?’ and, I guess, just in a way already grieving what’s going to be lost as the disease progresses.”
WATCH: (Aired March 12, 2018) Dave Alexander’s Story
It’s been two-and-a-half years since Alexander was diagnosed. In that time the 45-year-old has gone from being an active person and music teacher, to relying on a power wheelchair to move around. He’s no longer able to dress, or feed himself. Community health workers come around several times a day to assist. ALS has been hard on Alexander and difficult for his family.
“The worst part is the burden it places on my wife, who’s had to pick up a lot of the slack and does so incredibly; and on my kids,” he said. “With my kids, I want to spend more time with my kids, but ALS is forcing me to spend less time.”
ALS can be hard to diagnose because it mimics other motor neuron diseases. Right now in B.C., 400 people live with the disease, all of them looking for a cure that remains elusive.
WATCH: ALS in BC: A look at the research into the disease
Dr. Charles Krieger, a researcher at Simon Fraser University, has dedicated his 30-year career to finding a cure.
“ALS has been a surprise, because initially it looked like a straightforward problem,” he said.
Instead what he’s learned is that there are no clear-cut answers when it comes to the disease. ALS is a motor neuron disease that takes away a person’s ability to control their body because the brain can’t communicate with muscles that then atrophy. Eventually, it takes away a person’s ability to breathe.
The prognosis for 80 per cent of people with ALS is two to five years.
“What we’re looking for, and what we want, is to find something that will improve the survival of these motor neurons that are dying, so that we can actually have an impact on the disease directly,” Krieger said.
The cause of ALS remains unknown. It’s not contagious, and only five to 10 per cent of people with the disease have a family connection.
WATCH: Living with ALS- How families and friends come together to help people living with the disease
Chris Ells doesn’t know why he has ALS, he only knows the effect it’s having on him and his family.
“The hardest thing really is knowing that as hard as all these things are now, it’s not going to get any easier. Everything the way it is now, that’s as easy as it’s going to be. It’s going to get worse and I know that.”
Ells and his wife, Lynda, have been married for 39 years. They had lots of plans for their retirement. They wanted to travel and spend time with grandchildren. Instead both have had to stop working earlier than expected. Lynda was a registered nurse, now she dedicates her time to taking care of her husband.
“It’s hard to see someone being frustrated… wanting your body to do it, but it won’t do it anymore,” Lynda said. “It’s almost to the point even with a walker in the house, it’s going to be a wheelchair soon.”
The equipment ALS patients need is expensive. The cost of a power chair is $25,000. A motorized recliner $3,000. A walker $1,000. The average cost of equipment for someone with ALS is $140,000. That’s where the ALS Society of BC steps in, providing equipment and support to those in need around the province. It’s help that makes a difference, but one that needs financial support.
For Alexander, he says the Society’s support has made a difficult time easier to cope with.
“It doesn’t affect a lot of people, but it does drastically affect the people that it strikes, and I hope and pray that one day there will be a cure.”
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