A Driffield man has spoken out about the devastating effects of a rare neurological condition which affects his wife in a bid to highlight research into the illness.
Former primary school teacher Margaret Grant, 76, was diagnosed with Progressive Supranuclear Palsy (PSP) in 2011 after multiple falls and changes in her co-ordination.
After a series of suspected ‘mini strokes’ the mother-of-three was referred to a neurologist who eventually diagnosed PSP.
“We had no idea what PSP was,” said her husband Peter, a former senior fire officer, of Winterdale.
A few days after the diagnosis the couple received a letter explaining the condition and took this to their next GP appointment.
Peter said: “We were put in touch with St Catherine’s hospice and a specialist neurological nurse suggested we attend the Pocklington PSP Local Group meeting.”
From there, the couple, who are active members of the Methodist church, were put in touch with a PSP support network.
“The local care team are fantastic, anything we need for Margaret we tell them and we get it. “
“The whole house has been adapted to cater to Margaret’s needs,” said Peter, 80.
As is often the case with PSP, Margaret had been experiencing symptoms of the condition for many years before her diagnosis.
“Margaret used to be an avid choirist. She loved to sing. Since her diagnosis, she’s had to give it up.”
She was also an active member of well known local sining groups Middle 8 and Ad Hoc.
“She can’t concentrate on the sheet music and her sight is slowly deteriorating so she can’t read music either,” said Peter.
“We are very well supported. People from the church come and sit with Margaret and ask her how she is getting on, they also look after her when I go to practice,” he added.
The church has helped the couple raise over £1,000 for the PSP Association.
Margaret has taken her diagnosis in her stride and sometimes forgets that she is unable to do the things she used to.
“It can be quite dangerous, she could fall at anytime,” said Peter.
“It is also difficult for her to walk unaided. We’ve had to get a wheelchair. We have a carer that comes to help her get dressed and help with the housework but Margret would do it all herself if she could.”
At the moment Margaret, is still speaking coherently but her speech is slowly deteriorating.
”The only trouble that we have had is getting help with the speech therapist, we’re lucky that she can still speak quite well. We will soon need more help though,” said Peter.
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Progressive Supranuclear Palsy (PSP) is a Parkinson’s-like neurological condition which is caused by the progressive death of nerve cells in the brain.
Over time this leads to difficulties with balance, movement, vision, speech and swallowing. The average life expectancy from the onset of symptoms is seven years.
The PSP Association is the only national charity representing the needs of people living with PSP. It provides advice, information and support to people affected by the condition, their families, carers and health & social care professionals.
The charity is this year celebrating its 20th anniversary.
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Middle 8 have dedicated a song called Lean on Me to sufferers of PSP. The song appears on Youtube and can be viewed on our website at www.driffieldtoday.co.uk
* If you or someone you know is affected by PSP or may be experiencing symptoms of the condition visit www.pspassociation.org.uk or contact the helpline on 0300 0110 122 for more information and advice about the services available. Alternatively you can e-mail firstname.lastname@example.org