MEMBERS WITH LIVED EXPERIENCED
Myrna lives in Maple Ridge, BC. After she was diagnosed in 2009 with Frontal Temporal Dementia, feeling total and absolute despair, her daughter Sherry explained to her, ‘It is what it is’. At that moment, Myrna decided to become educated in neuro-cognitive disorders, and to become an advocate.
Myrna’s advocacy is far reaching as she speaks on the topic with the Purple Angel Ambassadors, the Alzheimer’s Society of BC, various churches, and staff and residents of retirement and long term care homes. She recently also attended the Dementia Strategy Conference in Ottawa.
Speaking from personal experience from diagnosis, appointments, tests, appointments, and more tests, opened Myrna’s eyes on the vast issues within the current care systems. Her belief is that we can all do so much more for our complete community of neuro-cognitive disorders, and it drives her to ensure that the therapies, education, long and short term care practices by staff are all well versed and aligned in the care required, and that offer answers and paths to a fruitful life.
Bill Heibein, formerly employed as a CA, has been living well with dementia for 20 years. He has not let his diagnosis stop him from continuing his active and social lifestyle--Bill owns and runs Amethyst Farms outside Thunder Bay, and he plays bass with local band Bottom of the Barrel. Bill is a self-advocate for people living with dementia, is a member of the North West Dementia Working Group, is a member of the advisory committees for the Alzheimer Societies of Ontario and Canada, and has worked on numerous research projects with Lakehead University and the University of Waterloo.
Bill is proud of his children and grandchildren and is proud of his ability to remain independent after receiving his Alzheimer’s diagnosis in 2000 despite doctors telling him to go home and get his affairs in order, that with such an early diagnosis he would have to take medication immediately and would be lucky to get 5 more “good years” of his life. Bill is proud to be part of the first group of four people with a diagnosis of dementia to ever appear in person before the Canadian Senate Review Committee when they were studying the status of dementia in Canada prior to issuing their recommendations. Most of all, he is proud that he and his late wife Heather were able to have a life of 60 years together.
In Bill’s words: “I have always felt that a diagnosis of 'Dementia', should not stop a person from doing what they love to do for as long as they can continue to do it.
I think the key to a healthy and rich life is to stay physically and socially active. Running a farm and having horses and dogs means that I have a reason to get up and get going every morning. It also means that it does not matter if the temperature is + 40 or - 40, I spend at least a couple of hours outside seven days a week. The social activity keeps me in contact with and talking to people.”
Clara Mersereau was inspired by her late mother and her late sisters when she received her own diagnosis of Alzheimer’s disease. Her mother and sisters all lived with Alzheimer’s disease and Clara saw firsthand how difficult things were for them when they were living with it. When she received her own diagnosis, Clara was determined to live well with the disease. She is now a passionate self-advocate for people living with dementia and proudly wears her homemade shirt “I may have Alzheimer’s, but it doesn’t have me” to prove she will not stop living well because of her diagnosis and to encourage others to share her outlook.
Clara is a member of the North West Dementia Working Group and has been a panelist and presenter for several events that aim to reduce the stigma affiliated with dementia. For Clara, the opportunity to work with the North West Dementia Working Group and having the opportunity to help others accept and live with their dementia is very important.
In Clara’s words: “The key to a healthy and rich life is having an excellent caregiver and very close friends who reach out to me and are willing to take me out for tea and shopping. I am happy to be able to help others who have developed this disease. I am more than willing to talk to anyone else with it to explain how I am dealing with it and inform them about all the activities and events that are available to us. I say this because my mother and sisters all went through their journey without the activities that are available to me that I am so grateful to the people who are dedicated to helping those of us with dementia here in Thunder Bay."
“I am proud of myself at being able to sit in front of people and be able to tell my story of my positive outlook and help them feel the same way”