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Dec. 5, 2019 | Thursday
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Remembering a conversation with Terry Hardy
Terry Hardy in October 2018. (Richard Harley/Niagara Now)

In his final days, Terry Hardy was sure the disease that was killing him wasn’t as rare as doctors thought.

Now, his wife Sandra says he was right.

Hardy died Dec. 13, 2018, after fighting a battle with idiopathic pulmonary fibrosis, a progressive lung disease that causes scarring of tissue, shortness of breath and debilitating tiredness.

In the last year, a support group started by Hardy has only grown in members, and research has begun to suggest it is one of the major forms of pulmonary fibrosis.

In October 2018, I spoke with him at his home; about IPF, his support group, a fundraiser he initiated, and a bit about journalism.

It was the first time I met him. His mind was as sharp as ever, and he was in good spirits. But the toll the IPF was and had taken on him was evident. Photos of Terry from when he was healthy showed a thick, handsomely built man. The man I was talking to, was frail, his fingers were swollen (as is often a symptom of the disease), and he was hooked up to an oxygen tank that was pumping air through tubes that were carefully lined throughout the house.

It was as if the hospital had moved in. The medical equipment had taken over his and Sandra’s lives — though his sense of humour wasn’t hindered.

“I keep joking — aside from IPF I’m in pretty good shape,” he said.

But even with weak, scarred lungs causing him to cough as he spoke, Hardy was adamant to be heard, and to fight for people like himself.

“I really want to see something in the paper,” he told me, not shyly, as he showed me information about IPF on his laptop at the kitchen table.

“Because in my view, yeah, it’s sad. I’m not happy I’ve got this disease. But the story, this whole story, is a really good news story. You don’t see those in the paper too much,” he said.

“I’m not saying your particular paper,” he was kind enough to add.

The story he wanted to tell began with his doctor recommending he explore support groups.

“Now I’m not big on support groups,” he said. “At least I’m not big on what I thought support groups were about. So I said, ‘well, you know maybe.’”

But after some reflection, and encouragement from Sandra, he contacted a man who was starting a support group in Hamilton. The problem was, he wanted to run it from 7 to 9 p.m. in the evening, which isn’t ideal for IPF patients — or someone living in NOTL.

“One of the side effects of IPF is you get very tired. I can’t be driving (at that time), I just can’t do it,” Hardy said. “So at that point Sandra and I sat down, and thought, if there isn’t a support that I can go to, why don’t we try to create one ourselves?”

So that’s what they did. They organized a monthly group to meet at the Niagara-on-the-Lake community centre.

“And the interesting thing is, when you first get diagnosed they will tell you it’s a very rare disease — which I don’t know if that’s supposed to make you feel better or not, but it really doesn’t. But what it does is it creates the impression that you’re on your own,” Hardy said.

“But when we set up the support group, all of a sudden, the first meeting, we had 23 people show up. We all said the same thing. When we walked in we had no idea there was this many people in the Niagara region — and this is just Niagara-on-the-Lake and St. Catharines.”

Hardy wanted the support group to teach people something too, so he started inviting guest speakers in to talk about some of the key issues of living with IPF. He put the list together himself, with topics like “physical activity, and mind over matter.”

“When I first said the group up, I said it needs to be more than just a social group. And we’re not there to teach anybody, or give any medical advice. You get that from your doctor. But I wanted there to be an educational component.”

For people living with IPF, knowing what’s available to them, and advocating for things they need together, could mean the difference between life and death.

One fairly obvious suggestion for people with IPF is to get exercise, as Hardy said, but the solution to practically doing that isn’t so easy to figure out, he learned.

“Therein lies the problem,” he said. “Anybody with advanced IPF is on oxygen. I can’t do anything without this. This is 24/7.”

When trying to find out where he was able to exercise, he was surprised to learn that in all of the Niagara region, there was only one place to access workout equipment without oxygen — the St. Catharines hospital on Fourth Avenue, which only had two oxygen machines.

At that point he decided he was going to raise money for the hospital.

“I wanted to have a fund-raiser, and to increase the awareness for this disease,” he said.

He contacted Juliet Dunn of the TD Niagara Jazz Festival to see what he could arrange, though shortly after that, he was hit with pneumonia.

“I recovered, fortunately. Because, usually, people with IPF, if you get pneumonia, it’s usually the kiss of death.”

While he was sick with pneumonia, he called Dunn to tell her he wouldn’t be able to continue with the plans for the fundraiser.

“So I said, you know, we’ll have to forget about it. And she said, ‘No we’re not. No we won’t. We’ll take it on as part of our big band fundraiser.”

The fundraiser takes on a different charity every year. Normally they give 20 per cent of proceeds to a charity. That time they gave 50 per cent, and the money went directly to the St. Catharines hospital.

Sandra talked proudly about Terry, and still does.

“In the course of one year, he co-ordinated a support group, he initiated a program at the hospital, and is now doing this with the graciousness of Juliet,” Sandra said in 2018, echoing the sentiment in a recent talk we had.

The program has come a long way since Hardy died, she said.

As of this September (IPF awareness month) Sandra said the group has about 40 people, and now also meets once a month for lunch now — as more of social gathering.

The actual group continues to have an education sharing focus, she said.

The St. Catharines unit has also been converted into an auxiliary unit so people in Niagara don’t have to travel out of the region for physiotherapy.

Sandra has also been out trying to raise awareness about IPF, bringing pamphlets to doctors and politicians, to try and spread the word and encourage further IPF research.

Sandra says Terry was right when he said IPF is more common than what was once thought.

When I talked with him, he thought so.

“It’s becoming more and more common I think, because the diagnostic techniques are improving, and I think that generally speaking, family physicians are beginning to recognize the symptoms,” he said.

Terry chose to leave the world by means of doctor-assisted death. In his time before the disease became too much to bear, he said he was overwhelmed at the support he received.

“The one thing we’ve both been struck with is the incredible generosity of some people,” he said. “I think people realize that it’s not just going to benefit me, it’s going to benefit all those who come after me.”

 

This September for idiopathic pulmonary fibrosis month, the Canadian IFP Foundation is asking people to blow bubbles for those who can't because of the disease. NOTL residents can show their support by blowing bubbles at the gazebo at Queen's Royal Park next Monday, Sept. 23 at 8:30 a.m.

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