In November 2009 Western News published an article on the Daily News website titled “Gaining a better picture of lung disease.”
Don’t turn the page! Please bear with me for a moment, even if you don’t think you’re interested.
This article highlighted some new research into Chronic Obstructive Pulmonary Disease (COPD) being conducted by Grace Parraga of Robarts Research Institute and her collaborators.
Many of you may have bypassed this story in favour of others you could better relate to, but to those whose lives have been touched by this condition and its debilitating effects this story may have offered a distant ray of hope, a sense of promise for the future – and some of them would have been tireless champions of this research initiative in the community.
These people are among the hundreds of millions that suffer from this disease with no known cure and treatment options that too often offer little to no relief.
Betty Wilson would have been one of those champions, and I would like to tell you some of her story.
Diagnosed with COPD in the mid-1990s, she was a prime candidate for it, with a lifelong history of lung infections and a decades long history as a cigarette smoker. Her medical team explained COPD (also known as COLD – Chronic Obstructive Lung Disease) as a group of lung diseases that cause obstruction of the airways, making it difficult to breathe.
The most common of these diseases are emphysema and chronic bronchitis (most often caused by smoking), but other causes may also be linked to repeated lung infections during childhood (including cystic fibrosis), obstruction of the airways by tumours (including lung cancers), and environmental exposure (including occupational exposures to things such as coal dust).
COPD is progressive, there is no cure, and treatment options are limited. Betty was devastated.
Soon, though, her natural resilience came to the fore. While she accepted this terrible disease could not be physically cured, she was determined it would not trample her spirit and she set about doing everything in her power to educate herself – and to make a difference. She became involved in the community created by the COLD Program attached to St. Joseph’s Health Care London, and lobbied within that community to create an activism directed toward building a strong voice for more research and better outcomes.
Over the next eight years Betty’s spirit was sorely tested. Treatment medications often offered unpleasant side effects in return for small advances in ability to breathe freely. Equally as often a medication appeared to have no effect at all. Once in a rare while a treatment would appear to be working like magic, but eventually the disease would progress a little more and that, too, would become another disappointment.
Frustratingly, the medications and dosages that worked well for one patient might be totally ineffective for another, and this is what makes Parraga’s research so important.
The research team believes that COPD patients can be divided into two major groups with different types of dysfunction and is using imaging to study changes in these patients’ conditions over time. These images can detect differences may offer a better understanding of each patient’s disease progression and perhaps alleviate some of the trial and error of current treatment regimens.
The first major bump in Betty’s new road came when she was diagnosed with lung cancer. Instead of becoming defeated she became part of a research study her surgeon, Richard Malthaner, was involved in, hoping more participants would equal better data and that would in turn influence better future outcomes.
Prior to and following the surgery to remove her lung she spread the word to everyone she could that research was their hope for the future, not something to be afraid to participate in. Left with only 40 per cent lung capacity compared to a healthy person with two lungs, she worked hard and wasn’t satisfied until a few short months later when, just before her 65th birthday, she had improved to the point where she no longer needed to use home oxygen.
Now back to her old self, Betty was once again actively advocating with her fellow COLD Program members to keep educating themselves, to stay current with and volunteer for pulmonary research studies, to work as hard as they could to maintain a decent quality of life, and to take their commitment right down to the wire.
She planned to bequeath her body to the Department of Anatomy & Cell Biology at The University of Western Ontario for medical education and research, and urged others to make a similar bequest to their institute of choice. She signed petitions for increased funding of programs and research, and never became bitter about or railed against the fact these things would never be in place in time for her, but would instead be for the benefit of those coming after.
Something, however, was not right.
Betty had been feeling more and more tired lately. It was harder for her to find the energy to keep pushing and motivating, it was getting progressively harder to breathe, and her COPD medications were once again failing to give her any relief.
A blood test determined she was suffering from severe anemia – she required a blood transfusion. This happened periodically over the next months; all the while her medical team was running every test under the sun to identify the underlying cause. Finally one last set of results came back and the verdict was in. Betty’s lung cancer had returned.
Having only partial function in her one remaining lung Betty was only too aware this would be her final role – she didn’t need her doctors to tell her that. Did it slow her down? No. It energized her, and she proceeded in her usual way to meet this new challenge head on. She used it to educate, encourage, and motivate those around her, making sure her voice was heard, making the case for greater support for the needed programs and research for COPD.
Eventually even Betty’s unflagging dedication was no match for her rapidly advancing diseases. Her spirit, however, was as unstoppable as ever. She was positive she had helped to make a real difference, but she had one more thing to accomplish. This incredible, bright and dynamic woman put her remaining energies into designing her own memorial service – from top to bottom.
Betty passed away peacefully on September 25, 2003.
Who was Betty? She was my mother, and I hope her story gives hope and lends inspiration to all in our community, most especially those who may be struggling to deal with COPD in themselves or a loved one.
The writer is a staff member in Western Information Systems Group.
More information
COLD Program: Phone – (519) 646-6083, Email – cold@sjhc.london.on.ca
Program Information – https://thehealthline.ca/displayservice.aspx?id=449
Ontario Lung Association: Search for “COLD Program” – www.on.lung.ca/
Department of Anatomy & Cell Biology – www.uwo.ca/anatomy/
Bequeathal Program – www.uwo.ca/anatomy/res_serv/bequeathal.html
Dr. Grace Parraga – www.robarts.ca/grace-parraga