Family open lid on horror of ‘devastating’ disease
Tuesday, 29 April 2014
FORMER jockey Jack McEvoy was a proud man who put passion into everything he did.
In October 2009 the truck driver from Newry was diagnosed with the rare neurological condition PSP (Progressive Supranuclear Palsy).
“Jack was very passionate about his job. He cleaned his lorry every weekend, made sure it was sparkling. He took pride in himself and his job," said his wife Nell.
In 2008 at the age of 65 Jack injured his shoulder which left him unable to work.
It was during this time that Jack's family started to notice something wasn't quite right and became increasingly worried.
“He would stand up and then immediately sit back down. He would be walking to the kitchen and his legs would just give way." explained Nell. "It was at this point the family sought medical help."
The couple's GP couldn't diagnose the cause of Jack's symptoms and it was suggested that the family saw a neurologist, so they organised a private consultation for the following week.
From first analysis the neurologist suggested the cause of Jack's loss of balance and co-ordination could be due to the effects of Parkinson's disease, a common misconception in the diagnosis of PSP.
But he was later diagnosed with PSP, which is a neurological condition which is caused by the progressive death of nerve cells in the brain. Over time, people diagnosed with PSP are robbed of the ability to walk, talk, feed themselves or communicate effectively.
The average life expectancy from the onset of symptoms is seven years.
Nell described her reaction to her dad's diagnosis as devastating. "He couldn't walk or stand. His balance was severely affected. He couldn't be left alone for the fear of him falling and hurting himself."
The father-of-four became depressed but friends, family and old work colleagues supported him through difficult times, including his ten grandchildren and two great grandchildren.
Eventually Nell contacted the PSP Association, a national charity which supports people affected by PSP. She was given the number of a specialist care advisor who gave vital support to the family.
“The main help we were given was in the day-to-day activities," said Helen. "I couldn't have done it without them especially when Jack started to lose his sight. They also helped get us a stair lift and a toilet downstairs which helped us a lot."
During Jack's illness the family and their friends organised a number of different fundraising events to raise awareness of PSP and money for the PSP Association.
This included fundraising from the annual Mourne Truck Run organised by the O'Hare family from Newry, which raised more than £10,000 over three years.
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.
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