ANY life-threatening illness is difficult for a family to cope with – but even more frustrating when you cannot get a diagnosis.
This was the situation Karen Lee, wife of Newcastle-based Sligo man Maurice Duffy, found herself in with her beloved mother.
After months of anguish and trying to figure out what was wrong with Moyra Lee, the couple eventually discovered she was suffering from a rare condition called progressive supranuclear palsy (PSP).
“It’s often confused and misdiagnosed as Parkinson’s or Dementia,” Karen explained. “This adds to the distress of the family because it manifests itself in a really weird way, they lose the ability to look downwards and constantly fall over.”
She added: “We explained that mum kept falling over randomly on the street and stuff and the doctor mentioned Dementia and asked could it have been the dog pulling her along and tripping her up.”
Moyra was diagnosed with PSP just over four years ago – and life expectancy from diagnosis is five to seven years.
PSP is a degenerative disease that involves the gradual deterioration and eventual death of certain parts of the brain.
Now in a bid to raise funds and awareness of the disease Karen and her businessman husband Maurice hold the annual Sham- rock Ball in Newcastle.
Dealing with PSP has been tough on the Duffy family.
Moyra with her daughter Karen.“You can see it happening,” said Karen. “They deteriorate in so many respects. They become distracted, they lose their inhibitions. Because they can’t look down, dinner can be difficult – they can’t seem to get their fork on to their plate. It’s awful.”
PSP is often misdiagnosed as other degenerative brain diseases, because of the rarity of the condition. There are only around 4,000 cases of PSP in Britain at any one time.
In Moyra’s case, it has been a harrowing few years for both her and her family since the diagnosis.
“She was diagnosed in 2010,” Karen said. “But Maurice has been great – he really helped in getting her diagnosed and now we run the ball.”
Maurice is originally from Co. Sligo but moved to his wife’s native Newcastle after they married.
Maurice is also a committee member with Lionra, a networking group for business professionals with a specific interest in Ireland and the North East of England.
The Shamrock Ball is run by Lionra, the PSP Association and a partner charity – this year it was run in conjunction with The Sick Children’s Trust.
“Each year we raise between £10,000 and £20,000,” said Karen. “It goes to PSPA for their services.”
The event has become a staple in the social calendar for the Irish community around Newcastle, with next year’s date already planned for March 19, 2016.
“This year was our third,” Karen said. “We will hold them beyond mum’s lifetime, though.”
What is PSP?
Professor David Burn, of Newcastle University’s Institute of Neuroscience, explains more about the condition.
“PSP is a rare and untreatable neurodegenerative condition characterised by early falls, an eye movement disorder, Parkinsonism and neuropsychiatric features, including Dementia,” he said.
“PSP is associated with the accumulation of a protein called tau, which interferes with the function of nerve cells in the brain.
“We do not yet know why people develop this brutal condition, nor do we yet have drugs or other treatments that can slow its progression.
“People who develop PSP become increasingly dependent upon their families as the disorder slowly robs them of their independence, affecting mobility, speech and social interaction in particular.”
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