Pam Harris’ parents died from Chronic Obstructive Pulmonary Disease at relatively early ages. 

“They didn’t have the medications we have and the know-how,” says Pam, a 20-year member of the Canberra Lung Life Support Group.

“I promised my mum at the first sign of it, I would give away the cigarettes, and that was the hardest thing I ever did, I think.

“I was diagnosed [with COPD] in 2001 and I went to a specialist and he sent me on to a course called Pulmonary Rehab

“That taught you a lot about what the disease was and how it could affect you and so forth.

“By doing that, you also went to the gym because we were told that exercise was such a big part of it, and I’d never been near a gym until then. 

“I still go two to three times a week now and it’s been really, really good.”

Chronic Obstructive Pulmonary Disease (COPD) refers to progressive lung conditions, including emphysema, chronic bronchitis and chronic asthma, says Lung Foundation Australia.

It says COPD causes the narrowing of the bronchial tubes, making it difficult to breathe and that it is progressive and incurable.

From her visits to the gym, Pam was introduced to the Canberra Lung Life Support Group. 

The group was formed in 1998 and is a volunteer-led social network supported by Lung Foundation Australia, says Marina Siemionow, co-ordinator since 2019.

“It started with a group of eight people who had lung problems, and it’s just grown since then, we actually have about 70 members now,” says Marina, who discovered the group while walking through the Seniors Expo with her partner Val, who suffers from bronchiectasis and asbestosis. 

“People were inclined to stay at home when they got ill, it got too hard to do things, so they wanted somewhere that people could come and relax, and learn things, so that’s sort of how it started and why it started,” she says.

One of the main things that the group tries to encourage is better understanding of diagnoses. 

“People leave being diagnosed with very little information, and therefore no support,” says Marina. 

“I’ve had people on the phone, ringing up because they’ve heard about us, and saying things like they think it’s a death sentence.

“Then you sort of say, look, we’ve got people who’ve had COPD for 23 years, yes, it’s debilitating, and it gradually gets you, but you can manage it, you can slow down the process. It’s not a death sentence.” 

Those who suffer from COPD are often faced with stigma from the public, Marina says.

“As you start puffing and panting, everybody says, ‘oh, you’re a smoker,’ yeah, you were, but that was the time. That’s what you did,” says Pam.

Pam now requires an oxygen mask to assist her breathing, but she says that the Canberra Lung Life Support Group has helped her gain confidence in herself again.

“It’s about seeing people in the same position as yourself, discovering what you can actually do to support yourself,” says Marina.

“And it’s just as critical for the carer to be educated, so that they don’t go into panic mode when somebody’s having a moment where they’re short of breath and they’re gasping.

“For the health system, what happens is people who panic ring up the ambulance and in fact they don’t need an ambulance. They just need to calm down and do some breathing techniques.”

The Canberra Lung Life Support Group has formal meetings at the Labor Club in Weston. 

“We have speakers that come to that meeting and if it’s not speakers, then we have a topic that we share experiences of, or we do some planning for the group, and then we always meet for lunch afterwards,” says Marina.

On the last Friday of every month, Marina says they have a social lunch at new locations, so that members can explore new places. 

“They’ve become like family,” says Pam.

Marina says that not all members attend the in-person meetings and members can keep up to date through the group’s newsletter.

Contact Canberra Lung Life Support Group via Lung Life Australia, 1800 654301 or at lungfoundation.com.au/services/canberra-lung-life-support-group