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The Guardian - UK
The Guardian - UK
Politics
Letters

There’s no easy way to cope with a loved one’s degenerative illness

Man and woman hugging.
‘My wife was diagnosed with corticobasal degeneration four years ago. To see the deterioration in her over the years has been heartbreaking.’ Photograph: Ievgen Chabanov/Alamy

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.

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