Janet

My diagnosis was actually a relief. I had spent four years noticing subtle changes in myself. Nothing I could put my finger on, but I knew things were not the same. Throughout this time, I went through several tests requested by my doctor. Thankfully, I didn’t have to push hard for them. MRIs and CAT scans, all showing progressive degeneration.

Four years later, I now had a diagnosis. Today, I’m 54 years old, with three sections of my brain affected. There is no history of dementia in my family. However, I’m no longer worrying about “what might be”. I can concentrate on living instead of searching for answers. I now have a focus on my life, my health and my family.

The healthcare system

I have three healthcare professionals: a GP, a geriatric internist and one of Canada’s leading neurologists. My GP is understanding but has made it clear that her knowledge of this disease is minimal, which is kind of disheartening. My internist is not close by, and can be hard to reach if I want to make an appointment. I’m also her youngest patient. My neurologist is very knowledgeable; she’s working to find answers that can help me.

People’s reactions

I can honestly say that I haven’t heard much from any friends after letting them know about my diagnosis. Initially, there were many messages of encouragement, saying how much strength I had sharing my diagnosis. But since then, I haven’t heard from any one of them.

Let me be clear though, I am not deterred by this. I have, as those friends stated, an enormous amount of strength, insight and fortitude; even if those friends never experience seeing it again. I remain proactive with this disease. I stay healthy, I exercise and I research enough to keep me in the loop. I participate in life.

My family reacted with great compassion and, of course, fear. My daughter and son in-law have lovingly opened their lives to my future care. My Mum has traveled from overseas just to spend time together with me. I’m hopeful that I will continue to encourage them and they will advocate with me, together against this disease.

I have recently been given the opportunity to participate in the Alzheimer Society’s Adult Day program. I attend once a week.

Final thoughts

At this point in my journey with Alzheimer’s disease, I’m still quite aware. I notice the changes and am able to tell my daughter and family so they can keep track and monitor things.

I want to let you know I’m not scared and that I have great understanding of my life and where it’s headed. I will die from this disease. My brain will stop telling my body how to function as my brain dies, and then it will stop my body from living. Death is inevitable in any life, just as it is a part of being born into this world. It’s a burden we all carry.

I have now what I perceive to be an unfair advantage over most: I know my approximate lifespan. Therefore, I choose to live every day to its glorious maximum! I love more, I experience more, and I use the phrase “do what your heart desires” to the extreme. I am your friend, I am family, I was perhaps even your co-worker. I live well and love fiercely. I have Alzheimer’s dementia. I am the face of dementia; I am 54 years old. Today, I remember you. Please remember me.