The husband of an Auchterarder woman suffering from a rare and fatal disease has called for extra research funding after specialists failed to diagnose his wife’s condition.
Ian Martin 81, of Glenorchil Crescent, has seen his wife Betty, 77, deteriorate before his eyes with PSP (progressive supranuclear palsy).
The condition slowly reduces a sufferer’s mobility, speech and general health, and Betty was originally told by a specialist nurse she had a life expectancy of between three and five years. Subsequently it has been confirmed that life expectancy can be as long as nine years.
Mr Martin said that despite stints in Ninewells in Dundee and Auchterarder’s St Margaret’s Community Hospital, doctors were at a loss to diagnose what was wrong with Betty.
He said: “This is a very rare disease that is difficult to diagnose according to the medical professionals. Early diagnosis is very important and I’m afraid my wife didn’t get any diagnosis.
“There is a tendency to fall backwards when you have this condition and she has had numerous falls with it. They sent her to a psychologist on the basis that psychology could be a factor. It was not.
“She finished up in Ninewells in October 2013 after yet another bad fall and was there for four and half weeks. She was then moved down to a cottage hospital at Auchterarder for another four and half weeks.
“There was no diagnosis of what was wrong and why she was falling so often. I think it’s unacceptable.
“Last summer she was diagnosed after another geriatrician at Perth Royal Infirmary was appointed to look into her case.
“He picked up that she had this condition and, sadly, it’s incurable.”
Mr Martin said there has been a notable decline in his wife’s health since she was diagnosed.
“Betty is not very good at the moment. Her eyesight is now affected, she can’t read, her speed is affected and she chokes on her food.
“These problems are what to expect, but it is coming so quickly after the diagnosis.
“I wonder why didn’t somebody, somewhere in the profession get a hold on what was wrong with her, even when she was in Ninewells. I don’t know what they did for her in there.”
The Courier has highlighted the efforts of another PSP sufferer, 43-year-old Angus man Keith Swankie, who has been battling to raise awareness of the condition.
When paramedics were called to his Arbroath home recently they confessed they had not even heard of PSP.
Mr Swankie was diagnosed in April 2012, more than two years after suffering from eye problems.
Mr Martin said: “It has become more in the public eye recently because of the exposure that The Courier has given it. The fact that this fellow is pushing only 44 years of age and has a life expectancy of roughly nine years, unless a miracle happens, is a terrible shame.”
Mr Swankie had a meeting with Health Minister Shona Robison, who pledged to ensure the faster introduction of training to diagnose rare diseases.
Mr Martin echoed the calls, adding: “There is a genuine need for more research into this disease and more help and support for the people who suffer from the condition.
“An English charity (PSP Association) gets no money from any public source and I intend to write to Prime Minister David Cameron urging him to put more money and resources into fighting the disease.”