Senators assistant coach Bob Jones opens up about ALS diagnosis

Ottawa Senators assistant coach Bob Jones says he has no plans to stop working after he was diagnosed with ALS, which stands for amyotrophic lateral sclerosis, earlier this year. 

"It was shocking," he said of the news. "I didn't do any research on it, I didn't know anybody that had it. I knew it was a horrible disease." 

The neurological disease, also known as Lou Gehrig's disease, causes gradual paralysis and eventually complete loss of muscle control — including the ability to walk, talk, and breathe. 

In an interview with CBC Radio's Ottawa Morning, Jones opened up about his life post-diagnosis, how he broke the news to the Senators organization and his desire to raise awareness about the disease.

Before the diagnosis, Jones said he tried to hide his symptoms from family and colleagues. He said he was experiencing slurred speech and cramps in his hand and feet, but felt an urgency to see a doctor once members of the Senators coaching staff noticed. 

After the hospital visit, Jones invited the Senators coaching staff over to his home to deliver the news. 

"I sat them down, had a beer, and I told them," he said.

While Jones went home to Tecumseh, Ont., to tell his kids Blake and Brianna of his diagnosis, he said Senators head coach D.J. Smith broke the news to the players. 

"They're all in support," said Jones. "They're good people, good humans, good hockey players. We're a team."

Sought multiple medical opinions

Jones said he got three opinions from different doctors before going public with his diagnosis. They all came to the same conclusion. 

"I was looking for something else, but it is what it is," he said. 

Although this diagnosis has affected much of Jones's life, he said he has no plans to stop working. He is on medication to slow down his symptoms and he is still active on the ice and travelling with the team.

When his "body says no," he said he will know then that it is time to quit. But for now, he said working helps him. 

"I'm a coach, I want to coach," he said. 

Jones has had a long career in hockey, as a player and a decorated coach in the American Hockey League and Ontario Hockey League. He is now in his fourth season as an assistant coach with the Senators.

Memories of past championships and former teammates and coaches are important to him as he navigates his diagnosis, he said. 

"It's soothing to look back and remember the moments of winning," said Jones. "And I believe this team will win sooner rather than later."

Words of support

After announcing his diagnosis, Jones said many people with the disease have reached out to him to offer support, including former NHL player Mark Kirton who was diagnosed with ALS in 2018. 

The two participate in a weekly group call with other ALS patients. The group includes some in the later stages of the disease while others are just learning how to live with the symptoms, said Jones.

These calls help him "see where he is going" but it is hard to hear people who are further along than him talk about their struggles.

Jones said Kirton's advocacy and fundraising for ALS research has inspired him and was one of the reasons he decided to go public with his diagnosis. He wants to do the same. 

"I want to fight it and hopefully find a cure someday," he said. 

While there are good days and bad days, Jones said he is happy if he gets to go to the rink to work and see his wife at the end of the day. 

"I am capable to do my job. I don't want people to feel sorry for me. I'm OK."