Two sisters who have witnessed the devastating effects of progressive supranuclear palsy (PSP) are preparing for a ‘massive challenge’ to raise awareness of the disease.
Claire Weeks, of Moreton Hall, and Sarah Smith, from Thurston, had never heard of PSP, a rare condition in which increasing numbers of brain cells become damaged over time, until it began affecting members of their family.
In May, their grandmother Joan Alston died, just 18 months after being diagnosed.
“We remember her doing everything for us but in the end she couldn’t do anything for herself,” said Sarah, 37.
“It just wasn’t the person we knew anymore,” said Claire, 35.
Because earlier symptoms can include slowed movements and behavioural changes, PSP is often misdiagnosed as Parkinson’s - as happened with Joan - or Alzheimer’s disease.
PSP, for which there is no treatment or cure, is also killing Claire and Sarah’s grandfather, David Weeks.
Sarah said: “He’s in bed all the time now. My gran has to feed him and he has carers four times a day. He can’t move himself. He can’t do anything for himself.”
“Unfortunately, it’s going to be any time,” said Claire.
But the sisters are turning their grief into something positive by taking part in October’s London’s Royal Parks Foundation Half Marathon in aid of the PSP Association, a charity that supports people with PSP and funds research into finding causes, treatments and an eventual cure.
Claire said: “One in 10,000 people in the UK suffer from it so for us to have two people in a relatively small family makes it even more important to try and do something to support it.”
She added: “Prior to signing up, the most exercise I was doing was taking the dog for a long walk at the weekends. It’s going to be a massive challenge, but that makes it more worth while.”
To support them, go to www.virginmoneygiving.com/team/claireandsarah