A positive attitude makes all the difference when living with PF
“I’ve never done things the easy way,” chuckles Ray Palmer, now 77, of Winnipeg. And so it was, when a bout of pneumonia eventually led to a diagnosis of idiopathic pulmonary fibrosis (IPF) in 2020, just as the pandemic was unfolding. A diagnosis of the auto-immune condition Sjogren’s disease six months later, only added to his challenges.
It took a while for the IPF diagnosis to sink in, he says. His wife Jo-Anne, struggled with anxiety in those first few months after Ray’s diagnosis, but a month of counselling “helped me put things in perspective, and Ray’s positive attitude is very helpful,” she says.
When pandemic restrictions eased, Ray was able to attend a pulmonary rehab program twice a week one summer. “I learned so much,” he says. In addition to breathing exercises and other physical activities, we learned about nutrition, medications and various coping strategies. “Complaining doesn’t help,” he says. “A positive attitude makes a huge difference.”
Both Jo-Anne and Ray say that the medical care Ray has received has been absolutely incredible. His respirologist and immunologist (who deals with his Sjogren’s disease) are in regular contact about his treatments for the two conditions. And, of course, his GP is also informed.
Events
Happening Soon
Mar
13
2:15 pm – 3:15 pm CDT – In-person event in Winnipeg
Managing Shortness of Breath and Dysfunctional Breathing
Mar
17
7:00 pm – 8:00 pm EDT
Caregiver Support Group
Mar
18
3:00 pm – 4:00 pm EDT
National Patient Support Group
Mar
31
7:00 pm – 8:00 pm EDT
Caregiver Support Group
Apr
1
3:00 pm – 4:00 pm EDT
National Patient Support Group
Apr
1
7:00 pm – 8:00 pm EDT
National Patient Support Group
CPFF will continue to advocate for you
Ontario’s general election was held on Thursday, February 27 and saw the Progressive Conservative party, led by Doug Ford, returned to power with a majority and a renewed mandate. The Ontario Liberal Party gained enough seats to regain official party status, but leader Bonnie Crombie failed to win in her riding. Ontario’s New Democratic Party, led by Marit Stiles, will return as the official opposition and the Mike Schreiner-led Green Party of Ontario kept its two seats in the legislature.
The government’s next steps will include a Speech from the Throne and a provincial budget. A cabinet shuffle may also take place. CPFF will monitor each of these developments with a focus on any initiatives, or announcements, of relevance to Ontarians living with pulmonary fibrosis.
The list of new and returning Ontario MPPs will be posted here in the coming weeks.
Educational Video
The Connection Between Connective Tissue Diseases and Pulmonary Fibrosis
Did you know connective tissue diseases (CTDs) like rheumatoid arthritis, scleroderma, lupus, Sjögren’s, and others can increase your risk of pulmonary fibrosis?
In this CPFF educational video, Dr. Janet Pope breaks down the crucial connection, explaining in an easy-to-understand way, the early signs, treatment options, and steps you can take.
Make sure taking care of your lungs is an important part of your CTD treatment plan.
Awareness and funding get a “Rare” boost
It is difficult at catch the media’s attention at the best of times. With political turmoil at home and abroad it’s even trickier. Yet, pulmonary fibrosis and CPFF piqued enough interest during its Rare Disease Campaign last month to earn interviews with 22 CBC radio outlets across the country.
Executive Director Sharon Lee spoke at length about the disease, early symptoms, how it impacts individuals, the importance of an early diagnosis and the need for equitable access to oxygen therapy. You can listen to one these interviews below:
On February 9 with guest host Dionne Codrington in Montreal
Attention like this helps to inform the public and can lead to community engagement and donations. “After hearing the interview, an individual contacted us to tell us she’ll be following up with her doctor about whether she may have PF. And, she made a generous donation of stocks to CPFF in recognition of the work we are doing,” says Ms. Lee.
In total, the Rare Disease Campaign raised almost $20,000. CPFF also received a $1,000 donation from Swiss Chalet®, thanks to Caitlyn Bell, who nominated us as her charity of choice.
“It’s moments like this that remind us of the power of community and kindness,” says Ms. Lee. “Thank you to everyone who made a donation last month. Together we’re helping to Tackle the Crackle© and bring hope to the PF Community.”
“It’s moments like this that remind us of the power of community and kindness,” says Ms. Lee. “Thank you to everyone who made a donation last month. Together we’re helping to Tackle the Crackle© and bring hope to the PF Community.”
Patient and Caregiver Stories
The Phillips family’s journey with PF
The Phillips family has been profoundly affected by pulmonary fibrosis (PF), a disease that irreversibly damages and scars lung tissue, and has no cure. After losing their mother and four uncles to the disease, the Phillips family recognized the signs of PF, and three out of the four siblings were eventually diagnosed with pulmonary fibrosis.
Dave Phillips was the first in their generation of the family to be diagnosed with PF. In this video his daughter Megan describes her dad’s journey with pulmonary fibrosis and his tragic death at the young age of 56 years old. David Phillips’ legacy lives on through his family and the continued fruits of their labours at Avonmore Berry Farm.
In tribute to Dave and the many other treasured family members lost to, or affected by PF, a five km charity run is organized annually at Avonmore Berry Farm in support of the Canadian Pulmonary Fibrosis Foundation (CPFF). The goal of this annual event is to spread awareness of PF and to raise funds to help find a cure.
With careful planning, you can travel with PF
Just ask Usha Glen who last May spent three weeks travelling with friends and family around the UK and to Bruges, Belgium. Usha, 70, of Thornhill, Ontario, was diagnosed with IPF in 2017 and currently uses oxygen – a portable concentrator – only for exertion.
Naomi Matsushita lives with PF and an auto-immune condition
Naomi Matsushita of Toronto, Ontario, Canada, has interstitial pneumonia, one of the 200 types of pulmonary fibrosis (PF), as well as anti-synthetase syndrome, an auto-immune condition.
Newly diagnosed gain insight and share concerns
About a dozen people joined CPFF’s first online session for those newly diagnosed, along with family members, to learn more about pulmonary fibrosis and discuss their concerns and coping strategies.
Attendees logged in from across the country, and even from a sunny vacation spot. They were patients, caregivers, adult children of a patient and a couple who had a relative with the disease. After an introductory presentation of CPFF resources, participants introduced themselves and told everyone where they were from and when they were diagnosed.
“People were very engaged during the discussion and several shared their original feelings of anxiety, especially after ‘doomscrolling’ the internet while seeking more information about PF,” says Trish Tonelli, who facilitated the session.
Mental health issues and coping strategies were discussed. Some found counselling helpful, others relied on family and friends and others found quiet reflection in nature helpful. All are motivated to find out all they can about pulmonary fibrosis and learn to adopt a positive attitude.
At the close of the session, participants expressed their gratitude and were given information about ongoing CPFF support available to them, including the national patient and caregiver support groups online (see article 2: Events – Happening Soon, in this issue) and community support groups.
A subsequent survey of the group will help CPFF determine if similar sessions for the newly diagnosed and their families should be offered on a regular basis. We’ll keep you informed.
“People were very engaged during the discussion and several shared their original feelings of anxiety, especially after ‘doomscrolling’ the internet while seeking more information about PF.”
Featured Videos
Managing Stress & Coping with Loss and Change
FIBRONEER-IPF: A Phase 3 Clinical Trial
Clinical Trials: An Overview (for everyone)
New tool for finding a clinical trial near you
Are you considering participating in a clinical trial? Are you interested in finding out about which clinical trials are recruiting participants in Canada? Check out our updated Clinical Trials webpage.
You’ll find plenty of information about what to consider, and who to consult, before you take part. You’ll also find a new tool that lists most clinical trials evaluating new pulmonary fibrosis research in Canada.
You might also want to watch our featured video, Clinical Trials: An Overview (for everyone).
