Ian Black’s article was a very difficult read indeed, but so well expressed (My brain is shrinking – and so is my world. Could I find out what’s wrong with me?, 1 October). My wife was diagnosed with corticobasal degeneration four years ago. To see the deterioration in her over the years has been heartbreaking. She is now totally disabled and cannot do anything for herself. She has lost the use of her left arm and hand, her left leg, and now her right arm and hand are going. She spends her life in bed and her riser recliner chair.
The condition is so rare that people have just never heard of it. Because of infections, my wife has a couple of hospital stays a year. I find myself explaining her condition to medical staff, even consultants. I have to explain that she has lost all connection with her limbs and she is not being awkward or uncooperative.
It helps me to cope by imagining a seesaw. One side has all the shit that the condition comes with, but on the other side is all the care, kindness and love that people offer. Complete strangers are sometimes so kind, for example when they see me struggle with the wheelchair. Then we come to our carers, who are so kind, gentle and loving.
The diagnosis has obviously changed our lives, and those of our families. Some find it almost impossible to be with my wife, but for others the reverse is true.
And the sunshine in our lives? Well, a glass of wine for me and a can of gin and tonic for my wife (only one, mind) at 5 o’clock, plus a dose of Bangers and Cash and the Highland Vet helps. And lastly, a huge ray of sunshine comes from our recently acquired rescue cat, who seems to sense despair and provides immediate solace. I’m so pleased that you have published this article and raised awareness of these conditions.
Name and address supplied
• My heart went out to Ian Black on his diagnosis of frontotemporal lobar degeneration (FTLD). I guessed what the diagnosis was within a few lines because my brother was diagnosed with the same condition, aged 47. It took a while to diagnose, just as it did for Ian. We could also see his world gradually shrinking as the disease progressed.
FTLD is little known and so there is less support and information than for Alzheimer’s. We did, though, receive excellent support for both my brother and his family from the National Hospital for Neurology and Neurosurgery.
I wish Ian and his wife, Helen, all the joy they can find and thank them for their courage in sharing their experience of this dreadful disease.
Margaret Jacobi
Birmingham
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