As a graduate from nursing at Western, Susan understood the devastating impact of dementia. Prior to retirement, she worked for ten years in a long-term care home in Lindsay, where many residents had Alzheimer’s disease.
It was after retirement that Susan noticed unsettling cognitive changes. During the summer and fall of 2009, Susan began to feel very nervous when driving. Her husband Brian also noticed subtle changes in spelling, numeracy, comprehension, memory and coordination. After a prompt referral to a Gerontologist in Peterborough and a specialist at Toronto Western, she was definitively diagnosed at age 60 with Post Cortical Atrophy (PCA), an atypical variant of Alzheimer’s.
The next year was dark for Susan, Brian and their family. But one day, she had a change of heart. Perhaps because of the “nursing” in her blood, she knew that wallowing in self-pity would change nothing. To help herself, she decided to reach out and help others. As a first step, she invited a journalist friend in Lindsay to help her “out” herself to the community. The article also focused on the importance of early diagnosis and how denying it only perpetuates stigma.
With the encouragement from the local Alzheimer Society, she became a ‘Champion of Change’ for the Kawartha Lakes area, advocating on behalf of people with Alzheimer’s at the local, provincial and federal level. On a visit to her local MPP with local Alzheimer Society staff, she posed questions about funding for research, capacity of long-term care and the need for better home care that were met with sincere interest and concern. She has communicated with politicians at all levels about these issues and also the importance of a National Dementia Strategy. She believes these concerns must be on the political agenda.
Susan has continued as a prominent spokesperson for those with the disease. In 2012, she presented the keynote speech at the annual Alzheimer Society General Meeting in Peterborough. Last January, she was interviewed by CTV health reporter Avis Favaro. Her performance on The National was also inspiring. In that interview Susan said, “we choose to live with Alzheimer’s.” And she has lived by those words. Since her diagnosis, she and Brian have travelled to Peru, Kenya, Western Canada, Turkey, Eastern Canada, Arizona and will be visiting Patagonia this February.
Susan is also now involved with the development of a “Dementia Friendly Downtown” program, where local shop keepers are encouraged to address the needs of customers with dementia. Susan and her local Alzheimer staff partner recently presented their ideas to the Bobcaygeon Chamber of Commerce members. They were receptive. After an initial trial in Bobcaygeon and some “tweaking,” she hopes to present the idea to the Chamber of Commerce in the much larger town of Lindsay, with the hope of full implementation.
With her experience in long-term care as a nurse, Susan knows that those with dementia require special accommodations. Currently in Canada, these special accommodations are rare. Susan would like to see that change. She is particularly interested in the promotion of specialized small group, residential homes similar to some that are functioning well in Great Britain, Europe and the United States.
Susan became a Dementia Champion because it allowed her the opportunity to do something that could help others. “I knew I had to do something. I couldn’t just sit here doing nothing.” Susan heartily recommends anyone interested in advocating for dementia to get involved as a “Champion for Dementia.”
Visit our website for how to become a Champion for Dementia.
Champion for Dementia