Carpe Diem – Living Life to the Fullest

My Story

I’m often asked if I can pin-point when the dreadful disease of Frontotemporal Lobe Dementia (FTD) slithered into my life and began to attack my brain. I don’t know. When I look back, it was about the year 2007 when I began to make serious mistakes in my executive reasoning and started to experience memory loss. My ability to develop solutions for problems seemed to disintegrate. My skills of being able to create and manage strong teams seemed to go by the wayside. I told my therapist that I did not seem as smart as I used to be. I became snappy with everyone, moody, began to drink too much alcohol, and ultimately I spiralled down into a deep and very dark depression. I stopped recognizing myself.

September 5th, 2012 is the day that has forever changed me and my family. It was on this day I was diagnosed with FTD at the young age of 45. I’ve known for years, there was something seriously wrong with me. I just didn’t know what it was. Finally, I had a diagnosis to this terrible thing. My emotions have ranged from disbelief to anger to sadness to mourning. Based on my symptoms, I most likely have Behavioural variant FTD (bvFTD). This type of dementia normally occurs between the ages of 45 to 65.

The average life expectancy is anywhere from 2-10 years. There is no cure.

When faced with such a diagnosis, you are forced to make a decision on how you will lead your life. Instead of lying on the couch and cursing this disease, I have chosen to seize the day, and place no trust in tomorrow. For you Latin readers, you will recognize this saying as Carpe Diem.

I am fortunate to have a loving partner of 11 years and a daughter who is 18 years old. Our unconditional love for each other has been paramount in helping us cope with this dementia in a positive manner. In addition, I have surrounded myself with positive people who are like-minded in helping me live well with dementia. I call them fondly, The Dementia Team. It is always a teams’ goal to work hard, respect each other, encourage and support. Working with this Team, I have sought out and developed ways to live well.

One of my most important relationships, is that with Murray Alzheimer Research and Education Program (MAREP). Its goal is to integrate research and educational activities in an effort to improve dementia care practices. We have become partners, which allows me to live with dignity and purpose. I write journals articles which may be posted on their website and participate in events and committees. Recently, I watched a documentary on the history of women obtaining the right to vote. It took years of international rallies, and protests of thousands of individuals to overturn prejudice and stigmas.

As a young person with dementia, I see myself in a similar type of fight. We need to stand up together, as an international group, and fight stigma associated with dementia, and replace ignorance with compassion, education, government services, and more money with resources in an effort to find a cure. I reach out to you – I’m happy to include you on The Dementia Team.

Copyright © 2013 Mary Beth Wighton; reprinted with permission. Thank you.