Raising awareness of rare brain disorder PSP

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A woman who lost her husband to an uncommon degenerative brain disorder has spoken out to raise awareness of the condition.

Carol Stanton’s husband of 47 years, John, died from progressive supranuclear palsy (PSP) in August last year.

The condition is caused by the premature loss of nerve cells in certain parts of the brain.

Over time, this leads to difficulties with balance, movement, vision, speech and swallowing.

Carol, who lives in Ramsey, explained that it took two and a half years and a battle with medical staff for John to be properly diagnosed.

‘Eventually we saw a neurologist from Liverpool who sent us to Addenbrooke’s to see Dr James Rowe, who confirmed John had PSP.

‘I’d never heard of it in my life. It was quite a shock.

‘Although we had a diagnosis, and it’s better to know what’s going on, there’s no cure so it’s not what we wanted to hear.’

Carol and John first met when she was 14. They moved over from Northamptonshire to the island in 1978.

They had a jeweller’s shop in Ramsey and she described him as ‘action-packed and full of life’.

She said John’s early symptoms were a difficulty in speaking and falling over for no apparent reason.

As the condition progressed, John was only able to see straight ahead, was not able to communicate very well, unable to walk so was wheelchair bound and had difficulty swallowing which resulted in having to make the choice of John having a feeding tube fitted.

When Carol was no longer able to care for John at home, she and her family had the difficult decision to make for John to go into a nursing home. ‘It was the hardest decision we had to make,’ she said.

‘As the condition progresses it’s difficult for them to talk. They can take everything in as their brain is fully functional but they can’t respond.’

Carol said they were both grateful for the support they received from social worker Maria Clinton and her team in social services and also the care and kindness of the staff at Brookfield Nursing Home in Ramsey.

She is now using her experience to help other families in the island affected by PSP.

Through the charity PSP Association, she gets referrals from residents, both those who have been diagnosed and their carers.

‘If people want to talk to someone I’m always at the end of the phone,’ she said.

The PSP Association visited the island in 2014 to give a talk for health and social care professionals as well as carers and their families.

Since then Maria has had contact with at least eight people on the island who had been diagnosed with Parkinson’s but after some years had turned out to have PSP.

The PSP Association describes PSP as a very individual condition and symptoms can be experienced with varying degrees of severity and at different stages of progression.

In its early stages, symptoms can resemble those of other neurological conditions.

The charity has a helpline and information service offering information, practical and emotional support. Contact 0300 0110 122 or helpline@pspassociation.org.uk

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