Our journey with ALS
I was expecting good news when my husband, Steve Gallagher, called me after a medical appointment in August 2019. I was feeling optimistic. After all, it was our 10th wedding anniversary. “They’re going to start treating me for ALS,” Steve told me, his voice cracking as he spoke those three letters. In hindsight, I was being naive to think the pain and weakness he began noticing in his right hand in late 2018 would be the result of a spinal injury that could be solved by surgery.
Amyotrophic lateral sclerosis (ALS), known colloquially as Lou Gehrig’s disease for the famous New York Yankees slugger diagnosed with the motor neurone disease in 1939, has a 1:350 lifetime risk for men. It’s 1:450 for women.
Due to its low prevalence, however, we were under the impression it was rare—so rare that an ALS diagnosis wouldn’t happen to us. But after feeling sore while bowling with our young daughter Olivia, then having trouble with mundane tasks, including opening doors or using a can opener, Steve headed to our family doctor. He ordered an X-ray and determined the issue was overuse arthritis that could be eased by applying ice to his hand in the evening and limiting use during the day. Two months later, though, Steve couldn’t close his fingers. A month after that, at the urging of friends who are orthopaedic surgeons, Steve found himself in a neurologist’s office in our hometown of St. Catharines, Ontario. “I knew at the time that motor neurone disease was a possibility,” he recalls. “It had been mentioned to me. It scared me.” By early July 2019, Steve was referred to the 4U Adult Neurology Clinic at McMaster Children’s Hospital in Hamilton, home to one of five ALS clinics in Ontario. The clinic is headed by neurologist Dr. John Turnbull, who studied chemistry and metallurgical engineering before pursuing a PhD in pharmacology and toxicology at the same time he worked toward his MD degree. After fellowships in internal medicine and neurology, and further post-doctoral training in neurobiology in the US, Turnbull devoted himself to not only treating people with ALS but to finding a cure for it, too. “For people who like challenges and puzzles—it was a disease [for] people didn’t know [the] cause. They didn’t know how to treat it,” Turnbull says. “Forty years later, we still don’t know what causes it or how to treat it … We don’t understand the disease … it may be tied up, in a way we don’t understand, to aging.” Still, Turnbull concedes, treatment is better than it was when it was discovered in Paris, France, in 1869 or even in Gehrig’s day, when little was known yet about ALS. Now, there are better social supports for people with ALS, he says. There’s better nutrition and information about supplementation, too. But pharmacology related to ALS still lags. The first drug to treat it was discovered about 25 years ago. Today, riluzole is still the standard prescribed to try to slow the progression of ALS, which manifests differently in each case. More recently, an intravenous drug called edaravone has been developed. Steve is being treated with both.
In addition to medications such as riluzole and edaravone, Steve is taking coenzyme Q10, vitamins C and D, resveratrol, pyrroloquinoline quinone (PQQ), and creatine supplements.
It’s impossible to tell if the treatments and supplements are working, since they don’t improve or cure the disease. But they have been proven beneficial theoretically or experimentally. Mostly, they give me and Steve hope, which eluded us in those dark days and weeks that followed his diagnosis. There’s hope that we will defy the odds; that Steve will be among the 5 percent to live 20 years or longer after diagnosis. Or better still, he’ll be the one in 10,000 whose symptoms disappear altogether. Our biggest concern is Olivia—that she could grow up without her dad there to celebrate her milestones. It’s a prospect that brings us both to tears, though for different reasons. Steve’s father, Joseph, died of multiple sclerosis when he was seven. His mother succumbed to a brain aneurysm when he was 13. He knows the agony of missing his parents.
So, we made a concerted effort, through counselling, meditation, and the support of others, including the team at McMaster, to live in the present as much as possible and to focus on the fact that Steve’s ALS seems to be slow in progressing. He’s also determined to champion the cause of ALS research with the hope that Dr. Turnbull will find the cure that’s eluded him so far.
“I have a voice right now. If I can use my voice to advocate, to support people with ALS who need help now, and to help fund research, that gives me purpose,” Steve says. “If I can be part of anything that helps others down the road, that gives me hope.”
To watch him become that advocate gives me hope, too. You wouldn’t know anything was wrong if he didn’t tell you he had ALS. I see him as the same Steve, albeit a little greyer, who I married just over
0 10 years ago on a day that was one of the happiest of my life, despite that one time when it was also the worst.
“I wanted to get to the point where I saw the light,” Steve says. “I’ve found the light.”
Being diagnosed with ALS can be overwhelming for both the person receiving the diagnosis and their family. The best way to support a loved one with ALS is to find an approach that works for all involved.
Listen with an open heart and mind when someone talks about their diagnosis and ask what they need most in that moment.
Learning that a loved one has been diagnosed with ALS can leave family and friends struggling for words that will provide comfort. Telling someone the diagnosis is devastating is hard to hear. Try “I’m sorry” or “I’m here for you” instead.
Connect with your local ALS Society chapter. The ALS Society is an incredible resource that offers connections to support groups for those living with ALS and their caregivers, assistive equipment, and information on treatments and clinical trials.
Living in the moment ensures no one loses precious time when a person living with ALS hasn’t yet presented serious, life-altering symptoms.
Ensure that a loved one living with ALS doesn’t retreat from daily life and become socially isolated.
ALS diagnoses are more common than one might think. The lifetime risk of ALS is 1:350 for men and 1:450 for women, putting the incidence of ALS on par with multiple sclerosis (MS).
ALS isn’t nearly as widespread as MS, however. That’s because the life expectancy of someone diagnosed with ALS is lower than someone with MS, so there are fewer cases—or less prevalence—of ALS than MS in a population at any given time.
That also makes it difficult to find a cure. In 2014, however, more than 17 million people around the world posted videos of themselves getting soaked with cold water in the ALS Ice Bucket Challenge. The viral social media campaign, started by Florida golfer Chris Kennedy to boost the spirits of a family member with the disease, raised more than $220 million for ALS research.