Let’s hear it for the NHS!

[No posts for weeks, then two within 24 hours!]

Yesterday

  • I knew for certain at breakfast that something was wrong with my left eye (I had had some warning signals in the week before).
  • At about 10 am I rang the my local health centre and asked if I could see a doctor –ideally that day. They said, would it be alright if a doctor phoned me?
  • At about 12 midday a doctor phoned, listened and asked if I could come to the health centre for 2.15 pm.
  • At about 3.30 pm I left the health centre with an outpatient letter for the local hospital  and an appointment for 6.30 pm in the emergency eye clinic.
  • At about 7 pm I saw a nurse for several tests and eye drops.
  • At about 8.15 pm I saw an opthalmic doctor. He had been on call since 7 am that day and there were more people waiting in the clinic
  • He listened patiently, examined my eyes with extraordinary thoroughness, going the extra mile to fetch lenses not immediately to hand.

I walked out of that hospital at about 9 pm knowing that I did not have a detached retina (serious, but repairable if caught quickly), but only a vitreous detachment, needing no treatment. This can occasionally turn into a detached retina, but I know what to look for and what to do now.

Our National Health Service is fast, efficient, kind and free at the point of demand – total cost of day £3.50 hospital car parking and a little patience. I slept well last night.

Thank you NHS!

This is a screenshot of a cartoon which one of you posted a while ago. I love it.Screen Shot 2016-01-20 at 09.54.35

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.

Carrots and Jaffas – a book for big minds

Carrots and Jaffas by Howard Goldenberg opens with the heart-stopping scene of a child being stolen. The child is one of twins. While the story of the twins, their birth and their fates, is central to the narrative and binds the reader by a need to know the outcome, the book ranges over many other stories as it takes us there.

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Actually, it doesn’t just range, it digs deeply into these other stories. As the twins narrative progresses, the reader has a sense of entering several books in parallel. With each character, comes new subject matter and, personally speaking, new and fascinating information. The book manages to be both deeply moving and matter-of-fact. This is meat for the curious, manna to the open-minded and satisfaction for the intellectually hungry. It is packed with poetry, fantasy, humour and fact and I enjoyed every word.

Howard has set the book in his native Australia, and offers a depth of intimate knowledge about the continent and both its modern and indigenous peoples. This is a revelation to the non–Aussie reader (and you might need a map). He draws on his decades of work as a doctor with all these people. I am now happily anticipating reading his memoir, My father’s Compass, and Raft, his account of life as a doctor in remote, indigenous Australian communities. He also blogs entertainingly and with passion at http://www.howardgoldenberg.com.