In late 2018, Steve Gallagher was unaware that a stiffness in his right hand would eventually lead to a devastating diagnosis of amyotrophic lateral sclerosis (ALS).
“In November 2018 I played bowling with my daughter. I noticed that my right hand was quite stiff. I went to my doctor about a month later and he told me you had arthritis. I thought ‘okay, nothing important, I won’t use it as much’, ”Gallagher told SooToday, speaking from his home in St. Louis. Catharines.
“After about three or four months I realized that I could not join my fingers. I was working at the hospital, having lunch with two of our orthopedic surgeons and I said, “Hi guys, is this something you can fix?” They spent a lot of time with me and told me that I was losing muscle in my hand and that I needed to go to a neurologist as soon as possible. ”
“I was diagnosed with ALS three months later.”
“It was heartbreaking,” Gallagher said.
ALS, also known as Lou Gehrig’s disease, is a disease marked by the progressive degeneration of nerve cells in the brain and spinal cord.
With ALS, you lose the ability to eat, talk, move, and finally breathe. It causes paralysis and death can occur as early as two or four years after diagnosis. There is no cure, although there are treatments available with the intention of prolonging life. The cause of ALS is unknown, although genetics sometimes play a role.
“My family and I prayed that maybe it had something to do with my spine, something that could be fixed. I knew ALS was a possibility, so when I was diagnosed, to use an analogy with baseball, I felt like they were throwing a fast ball at 100 miles per hour in my head. I didn’t want to believe it, but I knew it was true, ”Gallagher said.
“Those first few days were tough. I didn’t know much about ALS, other than something you die for. In those early days I focused a lot on ‘I’m going to die’ and ‘what my life will be like in the end ? ‘”.
After that, Gallagher took a more positive outlook despite the devastating diagnosis.
“I went from focusing on the three letters of the ELA to focusing on the four letters of ‘hope.'”
Aside from his own spirit, Gallagher credits his family with his care and the ALS Society of Canada for his 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 at The Sault Star covering the educational pace and acting as a district editor.
“I have fond memories of Sault Ste. Marie. The town is a great community. I fell in love with the town. The natural beauty of the area is second to none. I enjoyed skiing in Searchmont and spending time on the water in the summer. “It’s a lovely community.”
Born in Oakville, Gallagher grew up in New Brunswick and, after studying journalism at Ryerson, now called Toronto Metropolitan University, worked for Edmonton and Medicine Hat newspapers before reaching Sault.
After his stint at The Sault Star, he worked in editorial roles at St. Paul’s newspapers. Catharines, Brantford and Niagara Falls before working as a public relations at Niagara Health.
Gallagher was officially diagnosed with ALS in August 2019.
Gallagher said he now uses a walker to move around the house and a wheelchair for longer distances away from home.
His breathing has been affected and Gallagher now uses a BiPap machine to help him breathe in bed at night.
“I think one day we will see progress and a cure. On the St. Catharines walk to end ALS about three weeks ago I had the honor of speaking and said that one day we will not need this walk and one day we will celebrate the advances in care and care “.
“It may sound strange, but I feel very lucky. With the advocacy work I’ve been doing, unfortunately, I’ve heard so many people tell me that family members died very quickly. That’s tragic. I have my family. and I’m in my fourth year of this fight and I’m fine compared to the others. ”
“None of us know what he will bring us tomorrow. 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 is also a blessing because it gives me the opportunity to express my gratitude to people, what they meant to me in my life. ”
“Having these good friends is very comforting,” Gallagher said.
The ALS Society of Canada has been involved in the annual Walk to End ALS fundraiser since 1997.
The annual Walk to End ALS fundraiser for Sault Ste. Marie will be held on Sunday, June 26th.
After registration at 10 am, the event will begin in the Roberta Bondar pavilion at 11 am and includes a five-kilometer route along the promenade and sidewalks of the city.
You can find information on how to register online, commitment forms and special instructions for the event on the event website.
“At the Niagara Walk on June 4, we were the superhero team. I had a lot of friends and family on the Promenade dressed as superheroes and the idea was to use our superpowers to defeat ELA. I hope it is a great walk in Sault Ste. Marie. The community there really focuses around the people and I know they do it for the people who live with ALS, ”Gallagher said.
I am often asked what I would say to someone diagnosed and say ‘you are not alone’, and he added that he is encouraged by the new medicines for ALS.
“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 ELA community. We have about 23 walks going on in every region of the province and a virtual option for people.” , said Emily Moffatt, community leader for the ALS Society of Canada.
Moffatt travels to different regions of Ontario to visit and help ALS clients, making sure they have help such as PSW, occupational therapists, and virtual support groups.
Many clients of Sault ALS and others in northeastern Ontario travel to centers such as Toronto’s Sunnybrook Hospital to receive out-of-town care from neurologists.
“We always make sure people are connected,” Moffatt said, adding that there are five active ALS clients in Sault who are served by the ALS Society of Canada.
“We’re back to face-to-face walks for the first time in two years. The communities are very excited about it. Sudbury’s Walk was last weekend. The weather held up and it was great for everyone to come for a walk and that’s what we’re looking forward to. in Sault Ste. Marie, “Moffatt said, speaking from Barrie.
“There are currently two therapies that modify ALS disease that are approved in Canada. These therapies are Riluzol and Radicava. Riluzol has been around for quite some time. Radicava, also known as Edaravone, is relatively new. They are thought to improve the quality of a person’s life.Canada is really known for having some of the world’s leading ELA researchers, ”Moffatt said.
Approximately 25 people are registered for the Sunday Walk at the Sault, and more are expected to register on the day of the event at the Bondar Pavilion.
The Walk to End ALS has raised nearly $ 200,000 for research over the past 15 years in Sault Ste. Marie, said Moffatt.
“When we get together for the walks, everyone is aware that ALS is still common. Our goal is to continue research so that we see a cure in the future,” Moffatt said.
Information about the ELA and the ALS Society of Canada can be found on the Society’s website.