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  • Writer's pictureSee Pain More Clearly Team

A Personal Journey With Pain and Dementia

"I always say hope is all around us, you just have to see it." - Roger Marple

In the journey that I walk with my form of dementia, I often worry about how things will look down the road when I will be at the more challenging stages of this journey.

I was in an appointment with my doctor recently to discuss migraines that I have experienced all my life. She mentioned that people like me make her nervous. Why? I asked. She said that I have a very high tolerance for pain. “You could be having a stroke and it would be just another day to you due to your high tolerance for pain.” At this time I can treat myself with migraine medication and other pain management techniques.

I often think and worry about when I have blistering migraine pain but am no longer able to communicate this effectively to others. Will they think I’m irritable and blow it off to me having a bad day? How will they know when I’m in serious pain?

On another recent visit to my doctor, they mentioned that I had an unusual blood test result. They asked me if I had experienced any discomfort relating to this problem. I replied that I had been meaning to talk to them about this.

Their question: How long have you felt this discomfort?

Answer: About a year.

Question: why did you wait so long to bring this up

Answer: I forgot to tell you, it comes and goes.

Even as we speak It is difficult to articulate things during this stage of my dementia journey. The incredible work being done here, spearheaded by the University of Regina with the help of AGE-Well and other partners, is an area of pain and dementia that hasn’t been explored nearly enough or even thought of in many cases.

I often speak about hope with this dementia journey - what does hope looks like, and where can we find it? in many ways. I always say hope is all around us, you just have to see it. Hope to live the best possible quality of life possible at all the stages of this journey is one of those faces of hope.

Keep doing what you’re doing. Advance your knowledge and training for all to see and adopt. Myself and other people diagnosed with a form of dementia and their families who live with this condition as much as we do are counting on you. Trust me when I say we support the work you do. By Roger Marple

Roger Marple lives in Medicine Hat, Alberta and is the proud father and grandfather of 3 grown children and one grandson. He is an avid sports enthusiast, enjoys playing tennis and golf, loves to travel and knows his way around the kitchen with a real appetite for baking. Roger worked for Alberta Health Services and has worked in supply management in the south zone for over 23 years. He also has young-onset Alzheimer’s disease. Roger was invited to join the Alzheimer Society of Canada’s advisory group to help raise awareness of the needs of people with dementia, including the specific needs of people living with young onset and/or early-stage dementia. Roger also serves on the board of directors of the Alzheimer’s Society of Alberta and North West Territories and is active in supporting dementia research in Canada.

Since his diagnosis in the summer of 2015, Roger has made it his mission to dispel myths about the disease and the stigma associated with dementia. He is a firm believer that you can live well with this disease regardless of challenges and is passionate about sharing his message of hope.

How You Can Help? Would you like to share your thoughts on our See Pain More Clearly initiative and the use of social media to mobilize knowledge about pain in dementia?

We are looking for dementia patients to participate in our study to evaluate the effectiveness of the #SeePainMoreClearly social media initiative to mobilize knowledge about pain in dementia.

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1 comentário

Sharon Douglas
Sharon Douglas
07 de jan. de 2022

My husband was diagnosed with early stage Alzheimer’s and early stage Huntington's disease. He is aware of what is going on some of the time but he refuses to bathe or do any of the things the doctors tell him. He could hardly get around because all he does is sit in front of the TV all day. He refuses to go for a walk or to a senior center and he refuses to bathe. I was beside myself as we cannot go anywhere when he is dirty and stinks. I didn’t know what to do, I could not physically overpower him and make him do things and when I ask him he tells me I am not his boss.…

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