FTD-the horror of early onset dementia
Updated: Mar 4
Sadly, in my family, the expression ‘early onset’ is one we know only too well. There are certain illnesses which are considered old people’s conditions. When somebody young is diagnosed with an old person’s condition it is particularly heartbreaking, and raising awareness of these conditions is essential. Raising money to search for a cure is imperative. This week my blog isn’t about me, my family or my book, it’s about a young lady from New York and her mum.
On Friday, one of my Instagram posts was ‘liked’ by somebody with the handle ftdalovestory. I don’t usually pay too much attention to the names of people on #Instagram but FTD is frontotemporal dementia and I wanted to see what it was all about.
I’m not going to try to tell Jacquelyn’s story, she writes it so beautifully herself. I got in touch with her right away and asked if I could share it with you. She said yes, so here it is:
This is my mom. She’s beautiful, right? This picture was taken in April 2019. Life was good then.
My mom. How can I begin to describe her? The first word that comes to mind is “glamorous.” A woman who spent over three decades making a career in the fashion industry, her closet could compete with the Kardashians. She was always the best dressed, most put together woman, and when she’d walk in any room she made her presence known.
She had a BIG personality. She was loud, fierce, feisty, and quite the perfectionist. She believed in tough love and being great was never good enough. She would push you to be your best, and when you reached your best, she’d push you to be even better. She loved to travel, shop (endlessly), get her hair and nails done, go to the gym, and she always took great care of herself. She never looked her age, and always joked how she’s “much hotter” than other moms because they “let themselves go.”
We fought all the time. Like many mother and daughter relationships, ours was tumultuous. We would even joke that if we weren’t arguing about something, it was out of the ordinary. Mom, I miss fighting with you. I never thought I’d say those words, but I do.
Mom got diagnosed with FTD in early October 2020. She was 56. She’s different now. She’s still hilarious and loud, but doesn’t care that her Joe’s jeans won’t zip anymore, or if she spills a little coffee on her sweater. Sometimes her sweater is inside out. She doesn’t care that she cannot work anymore, or drive, or have her credit cards. She doesn’t know we just celebrated her 57th birthday a few weeks ago. But she still knows us - my dad, my brother, and myself.
We are all suffering.
FTD? We had never even heard of it. We’ve heard of dementia, we’ve heard of Alzheimer’s, but FTD? What is this silent killer and why has it invaded my family?
To those out there suffering, we hear you. To the caregivers, the siblings, the parents, friends, extended family, we hear you. We need to make some noise. We need to SCREAM. My mom can’t scream anymore, but I can, and I will.
Ma, this is for you. To everyone part of the larger FTD family, this is for you.
And finally I can't go without mentioning my book which tries to shine a positive light on dementia through the eyes of a child. You can buy It’s Raining in Moscow and I Forgot my Umbrella on Amazon. Click here,😊
"If you, your friends or your family are facing dementia, then get hold of a copy of this book. It has a more positive view of dementia than is usual in our society. It describes a way of coping with compassion and humour."