My online friend Joe Blanc posted this to the Society for PSP’s Forum recently. It’s about Brigadier Michael Koe writing a book about his wife Sara, who had progressive supranuclear palsy (PSP). The Koes established the PSP Association in the UK, which is a wonderful organization.
Here’s an excerpt from the newspaper article:
“Mr Koe…said one of the reasons he decided to write the book was to help him deal with the experience of watching a loved one deteriorate from a condition which robs people of their balance, movement, speech, eyesight and ability to swallow. He said: ‘It’s also difficult in that the symptoms can make it seem like the sufferer has been drinking. Friends of Sara’s became less friendly. It was a pretty traumatic time and a pretty bad experience and I think writing it down has helped.'”
Robin
Book tells of tragic death of wife
Brigadier Michael Koe with the book Charity begins at Home, which wrote after the death of his wife
Published Date: 01 December 2008
By Nick Spoors
A former soldier who set up a leading charity after losing his wife to a little-known brain disease has published an account to raise awareness.
Brigadier Michael Koe and his wife Sara started the progressive supranuclear palsy (PSP) association in 1994 after she was diagnosed with the condition. However, just eight months later she died from complications arising from the illness.
Mr Koe, of Wappenham, near Towcester, said one of the reasons he decided to write the book was to help him deal with the experience of watching a loved one deteriorate from a condition which robs people of their balance, movement, speech, eyesight and ability to swallow.
He said: “It’s also difficult in that the symptoms can make it seem like the sufferer has been drinking. Friends of Sara’s became less friendly.
“It was a pretty traumatic time and a pretty bad experience and I think writing it down has helped.”
The couple set up the PSP Association because they were frustrated at the lack of knowledge about PSP, even among medical professionals.
Since then, the charity has grown to a position where it now employs 21 people with nine volunteers, has helped 3,000 people and invested more then £2 million in research.
Mr Koe was awarded an OBE for his charity work.
Charity Begins At Home can be purchased from the PSP Association for £20 plus £3.50 postage and packaging with proceeds after costs going to the charity.
Cheques can be sent to PSP House, 167 Watling Street West, Towcester, Northamptonshire, NN12 6BX.
The charity can also be contacted via www.pspeur.org, by email on [email protected] or on 01327 3224110.