The Dance: Our Journey Through Frontotemporal Degeneration

by Deborah Thelwell

The Dance is a lively memoir of a couple's five-year journey through a little-known, non-Alzheimer's dementia -Frontotemporal Degeneration (FTD). Deborah and Alan's story is told with honesty, humor and love. The Dance illustrates of how the 'normality' of Deborah and Alan's life was stolen away by FTD. They danced together for almost thirty-eight years until Alan's death in 2012. How they handled this challenge together and with the help of their family and friends shines some light on this uncommonly diagnosed disease. FTD strikes men and women from the age of 35 onwards. It is most commonly diagnosed from age 50 onwards but has been seen in people as young as 20 and as old as 80. It is often accompanied by physical conditions such as Motor Neuron Disease or ALS (Lou Gehrig's disease). The average time between diagnosis and death is between four and ten years. Added to the pain of dealing with an untreatable, incurable illness is the loss of person, insight, and empathy for others. The grieving begins long before physical death. Further information on FTD can be found at www.theaftd.org

187 pages, Kindle Edition

First published November 4, 2014

Reviews

[Molly · Rating 4 out of 5]

(4.5 stars)
Honest, well told, helpful memoir. Why not 5 stars? A good editing would have helped - there were too many occasions when a person who hadn't seen the person with FTD in a while was "shocked at his deterioration." True, and painful, each and every time, but---

As I read along, I was grateful that she was a nurse. Access to information, support, networks, perspective. And still what an anguished path along much of the way. She was an amazing advocate for her husband/patient.

I am amazed that Ms. Thelwell could write such an affecting book while living through and looking back on her experiences. A spouse, not an experienced writer. Hats off to her. Hope the years since have been kind to her.

[Ellen · Rating 5 out of 5]

Great book especially for those of us that have a family member with this disease. I couldn't put it down once I started. I have recommended it to family and friends.

[Nathan Hill]

A truly wonderful book.

I have read this book three times now and each time it has more meaning. My husband is living with FTD and we as a family are on the journey of this long and devastating disease.. Ten years so far and more to come, watching him have no quality of life because the illness has stolen his brain. I wish Debbie love and peace. Jo

[Diane Francisco · Rating 5 out of 5]

For those of us dealing with this devastating disease affecting our loved ones, this is a must read! Also recommend for friends of someone with FTD. It’s enlightening for everyone since so many are unfamiliar with this disease. As the wife of a husband with FTD, I could so relate to this book and I couldn’t put it down, even as tears streamed down my face.

[Carei · Rating 5 out of 5]

Mirror Image

Anyone going through the horrific journey of FTD can recognize themselves in this author's memoir. I understand more now than I did before I read this. I am where she was in 2011. I am glad I read it. I dont feel so quite so lost and crazy.

[Harriet Thomas · Rating 5 out of 5]

I Can Relate

I am experiencing the same journey with a husband with FTD. Her words both scare and comfort me. It's hard to describe the feelings and her description validated some of my thoughts and feelings. Written in a touching manner.

[Sophie · Rating 4 out of 5]

I've worked on psychiatric units and in day centres for people with dementias of all types. This is a very moving look at how the wife of someone with frontotemporal dementia coped with his illness.