The Dance – living with FTD

This is not a Christmassy post. I could have waited until after Christmas to post a review of a book about brain degeneration, but death and disease do not wait for the right season and I need to write while the effect of the book is still strong in me.

DSCN6841Before I retired, I used to work in brain research and when my work took me into the field of early-onset dementias I found very little to read that was written from a relative’s point of view. Soon after this, in 2007, Marianne Rumens published her brave account of her husband’s life and death from  Frontotemporal Dementia or Pick’s Disease, titled No More Apples for Tom.

Recently, Deborah G. Thelwell published a similarly brave book, The Dance: Our Journey Through Frontotemporal Degeneration. This is a love story about a long and happy marriage. It is also the story of her husband, Alan, and his devastating brain disease (FTD). Deborah is a nurse, and she writes a blindingly honest, clear and heartfelt description of living with this disease. In particular she charts her experience of FTD’s grim and erratic  progress from first diagnosis to last breath. She does this with committed love, but also with clarity – a rare combination.

This disease attacks in mid-life, symptoms typically manifest in patients in their mid-fifties, when no-one is expecting brain degeneration and doctors, understandably, look for more likely explanations first. FTD results eventually in dementia, but it is extremely variable, often difficult to diagnose and poorly understood, even by health professionals.

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This book is an enlightening read for every neuroscientist, doctor, nurse, researcher or student of FTD and other early-onset brain diseases. Because it details the day-to-day changes in behaviour, it shows in devastating detail the way such a disease causes pain to those in contact with it. It shows the many misunderstandings experienced by relatives and sufferers of FTD. I wish that when I was a researcher new to this area I had had this account to hand. I would have had better insight into the lives of those I was trying to understand and both their experience of my efforts and my work would have benefited greatly.

For Deborah, re-living this experience as she wrote must have been very hard. But what she has accomplished is a gift to those working in the field and I hope this knowledge will make the effort of writing all worthwhile for her and her family.

It is important to say that this is NOT a suitable book for the newly-diagnosed patient or their relatives. There are many variants of FTD and the path of this disease is itself very variable. I have personally known several patients with the same diagnosis whose lives have taken a different course from Deborah and Alan’s. Early diagnosis often changes as the disease progresses and FTD is frequently only confirmed with certainty post-mortem.

FTD (Fronto-Temporal Dementia)

My friend, Toni, has just started a new blog at http://myhusbandhasftd.wordpress.com this is about life with her husband who has the misfortune to suffer from the early onset dementia known at Fronto-Temporal Dementia or FTD. He is now severely affected by the disease and she is writing to share the ups and downs of their day-to-day life with others in the same position and for the benefit of professionals in the field. She is also telling, in instalments, the story of the years leading up to his present state. As Toni believes it is of paramount importance to protect the ‘rights’ of vulnerable people, in the main story she refers to him as ‘Mr’ – a fun name used by her family.

This is a brave and generous enterprise and I wish her luck.