Former Sault journalist fights ALS, focusing on hope

In late 2018, Steve Gallagher didn’t know a stiffness in his right hand would eventually lead to a devastating diagnosis of Amyotrophic Lateral Sclerosis (ALS).

“In November 2018 I was bowling with my daughter. I noticed my right hand was pretty stiff. I went to my doctor about a month later and he said you have arthritis. I thought ‘okay, nothing major, I’ll not use it as much,’” Gallagher told SooToday, speaking from his home in St. Catharines.

“About three or four months later I noticed I couldn’t put my fingers together on my hand. I was working at the hospital, having lunch with two of our orthopedic surgeons and I said ‘hey guys, is this something you can fix?’ They spent a lot of time with me and they told me I was losing muscle in my hand and needed to get to a neurologist as soon as possible.”

“I was diagnosed with ALS three months later.”

“It was gut wrenching,” Gallagher said.

ALS, also known as Lou Gehrig’s Disease, is a disease marked by progressive degeneration of nerve cells in the brain and spinal cord. 

With ALS, the ability to eat, speak, move, and ultimately breathe is lost. It causes paralysis and death can come as early as two to four years after diagnosis. There is no cure, though treatments are available with the intent of prolonging life. The cause of ALS is unknown though sometimes genetics plays a role. 

“My family and I prayed it was maybe something to do with my spine, something that could be fixed. I knew ALS was a possibility so when I was diagnosed, to use a baseball analogy, I felt like I got thrown a 100 mile an hour fastball to my head. I didn’t want to believe it but I knew it was true,” Gallagher said.

“Those early days were hard. I didn’t know a lot about ALS other than it’s something you die from. I focused a lot in those early days on ‘I’m going to die’ and ‘what’s my life going to look like at the end?’”

After that, Gallagher took on a more positive outlook despite the devastating diagnosis.

“I went from focusing on the three letters in ALS to focusing on the four letters in ‘hope.’”

Apart from his own spirit, Gallagher credits his family for their care and the ALS Society of Canada for their fundraising for research and support.

“I’m not alone,” Gallagher said.

Gallagher, 50, lived in Sault Ste. Marie from 1997 to 2004.

He worked as a journalist for The Sault Star covering the education beat and serving as district editor.

“I have fond memories of Sault Ste. Marie. The city is such a great community. I fell in love with the city. The natural beauty of the area is second to none. I enjoyed skiing at Searchmont and spending time on the water in the summer. It’s a lovely community.”

Born in Oakville, Gallagher was raised in New Brunswick and, after studying journalism at Ryerson - now called Toronto Metropolitan University - worked for newspapers in Edmonton and Medicine Hat before coming to the Sault.

After his time at The Sault Star, he worked in editorial roles at newspapers in St. Catharines, Brantford and Niagara Falls before working in a public relations capacity at Niagara Health.

Gallagher was officially diagnosed with ALS in August 2019.

Gallagher said he now uses a walker to get around the house and a wheelchair for longer distances outside the home.

His breathing has been impacted and Gallagher now uses a BiPap machine to help him breathe in bed at night.

“I believe one day we will see advances and a cure. At the St. Catharines Walk to End ALS about three weeks ago I was honoured to speak and I said one day we won’t need this walk and one day we will be celebrating advances in care and a cure.”

“It may sound odd but I feel pretty fortunate. With the advocacy work I’ve been doing I have sadly heard so many people tell me they had family members die pretty quickly. That’s tragic. I have my family and I’m in my fourth year of this fight and I’m doing okay compared to others.” 

“None of us know what tomorrow’s going to bring. Having a diagnosis like ALS is an opportunity for me to tell people how much they mean to me. I know my time may be limited but there’s a blessing there as well because it gives me an opportunity to express my gratitude to people, what they meant to me in my life.”

“Having those good friends is very comforting,” Gallagher said.

The ALS Society of Canada has been involved with holding annual Walk to End ALS fundraisers since 1997.

The annual Walk to End ALS fundraiser for Sault Ste. Marie will be held Sunday, June 26.

After registration at 10 a.m., the event will start at the Roberta Bondar Pavilion at 11 a.m. and include a five kilometre walk along the boardwalk and city sidewalks.

Information on how to register online, pledge forms and special instructions for the event can be found on the event’s website.  

“At the Niagara Walk on June 4th, we were the superheroes team. I had a whole bunch of my friends and family come to the Walk dressed as superheroes and the idea was to use our super powers to beat ALS. I hope it’s an awesome Walk in Sault Ste. Marie. The community there really rallies around people and I know they do that for people living with ALS,” Gallagher said.

“I’m often asked what would I say to somebody who is diagnosed and I would say ‘you’re not alone," adding he is encouraged by new ALS medications.

“I know good people are working hard.”

“This month has really been about the Walk to End ALS for the ALS Society of Canada and the ALS community. We have about 23 ongoing Walks in each region of the province and a virtual option for individuals,” said Emily Moffatt, ALS Society of Canada community lead.

Moffatt travels to different regions throughout Ontario to visit and assist ALS clients, ensuring they have help such as PSWs, occupational therapists and virtual support groups available.

Many Sault ALS clients and others from northeastern Ontario travel to centres such as Toronto’s Sunnybrook Hospital for out of town care from neurologists.

“We’re always making sure people are connected,” Moffatt said, adding that there are five active ALS clients in the Sault being served by the ALS Society of Canada.

“We’re coming back to in person Walks for the first time in two years. The communities are really excited about it. Sudbury’s Walk was last weekend. The weather held out and it was great to have everybody come and walk and that’s what we’re looking forward to for Sault Ste. Marie,” Moffatt said, speaking from Barrie.

“There are currently two disease modifying ALS therapies that are approved in Canada. Those therapies are Riluzole and Radicava. Riluzole has been around for quite some time. Radicava, also known as Edaravone, is relatively new. They’re meant to improve an individual’s quality of life. Canada is really known to have some of the world’s leading ALS researchers,” Moffatt said.

Approximately 25 people are registered for Sunday’s Walk in the Sault, with more expected to register on the day of the event at the Bondar Pavilion.

The Walk to End ALS has raised almost $200,000 for research over the last 15 years in Sault Ste. Marie, Moffatt said.

“When we come together for the Walks, it’s everybody raising awareness that ALS is still prevalent. Our goal is to continue the research so that we do see a cure in the future,” Moffatt said. 

Information on ALS and the ALS Society of Canada can be found on the Society’s website.