FACTS ABOUT AMYOTROPHIC LATERAL SCLEROSIS (ALS)
- ALS can strike anyone, at any time, regardless of age, sex, or ethnic origin.
- The usual age of onset is 55-65, but people under 20 have been diagnosed.
- About 2,500 to 3,000 Canadians currently live with ALS.
- In at least 90 per cent of cases, it strikes people with no family history of the disease.
- Eighty per cent of people with ALS die within three to five years of diagnosis.
- A person with ALS can require equipment and care valued at more than $240,000.
- The cause is unknown. There is no known cure or treatment that prolongs life significantly – yet
Source: ALS Society of Alberta (found at www.alsab.ca/symptoms)
Adam Rombough knew something was off. He was an active and healthy 30-ish young man, full of vim and vigour, with a thriving siding business and lots on the go. He practically had his whole life still ahead of him. It made no sense when he lost the strength in his hands.
“He couldn't open a water bottle or anything. He actually started fitness classes with my husband and I, thinking that he just needed to get some (exercise). And then, all of a sudden, his speech started slurring,” said his mother, Tamis Rombough.
“He's a businessman, and he would go to lunches and people would say that he had started drinking already. He was like, ‘No, I haven't had a drink at all.’ It was quite embarrassing for him.”
That was back in October 2016.
When he first sought medical help, the first thing the doctors investigated was multiple sclerosis, because his symptoms came on so quickly. As a nurse, Tamis already understood the process of elimination that he would have to go through before he could be diagnosed. Tests led to other tests as possible diagnoses were ruled out.
It wasn’t until March 2017 that he underwent magnetic resonance imaging, or MRI, to delve deeper into his central nervous system.
The scan came back with bad news: there was noticeable shrinkage in the area where the spinal cord meets the brain, a classic sign of ALS. He was sent to one of Edmonton’s designated ALS clinics for further confirmation.
An hourglass dripping sand
ALS is a fight against time, and because it can take so long for a diagnosis, the odds are well stacked against you long before you even know you’re in the fight.
A large part of the battle is that it can affect you in different ways, said Meaghan McCarthy, development and communications co-ordinator with the north office of the ALS Society of Alberta.
Bulbar onset, she said, means a loss of speech. Limb onset means a loss of mobility and dexterity.
Adam Rombough had both.
“The life expectancy is about two to five years from diagnosis, and some people, unfortunately, don't even get to see that long. It's very fast progressing in a lot of people,” said McCarthy.
According to its website, ALS is a “rapid, always fatal, neurodegenerative disease.” It attacks the nerves, resulting in weakness and wasting. In the end, the person is left “completely immobilized, with loss of speech and an inability to swallow and breathe.” All the while, the sensory neurons remain in perfect condition so the person feels everything, and their mind usually remains completely alert and lucid.
Having both forms of onset meant Adam’s life ended up shorter than most. Three years ago this month, only 14 months after his diagnosis, he died at the age of 34.
“It's not a pleasant disease and unfortunately, people, when they get diagnosed, pass so quickly that it's hard to have advocates because they're on their own very quick journey. We're trying to speak for them,” said McCarthy.
Advocacy is only one of the jobs the ALS Society does to help 160 families across the province. It also supports them with equipment and support groups. Much of this support is challenging during COVID-19 but the society soldiers on.
“Usually pre-pandemic we would have support groups that would be in person. We would have them for people with ALS, caretakers, as well as ‘staying in touch’ groups, so that would be people who have had someone pass away that still want to stay connected. Since the pandemic, we have switched to virtual and Zoom. We have people from all over Alberta now Zooming in three or four times a month to get together, and we support them that way. We also have our equipment loan program. Anyone who's diagnosed with ALS will need a ton of equipment, as you can imagine. We estimate a person going through ALS will need probably just under $100,000 worth of equipment, which a lot of people, of course, will not be able to afford,” McCarthy said.
The society provides hospital beds, power wheelchairs, walkers, “Whatever equipment you could imagine,” and it's all totally free.
That immediacy can make a world of difference.
“That's the biggest thing about ALS, anybody with ALS. Time is precious,” Tamis said.
“If you go through the government's Aids to Daily Living plan where you have to wait say for a walker, you could wait six months for them to approve you. For ALS patients, they have two years to live. By the time they get the walker, they need the wheelchair," she said.
"The ALS Society is a godsend for any equipment needs or supports because they're all funded totally by donations. ... Once the occupational therapist deems that they need one, they just call up the ALS Society and it's delivered the next day."
The Walk to End ALS is virtual once again, and takes place on Sunday, June 13, in the Edmonton area. Tamis and Perry Rombough will be doing their part under the Team A-Bomb banner as a way of upholding their son’s memory and his legacy. Though they won’t be able to walk together with other families, they’re still walking strong and in solidarity with them through their journeys.