A Helsby man suffering with a rare variant of Alzheimer’s is warning others about the importance of early diagnosis.
Paul Bulmer, of Robin Hood Lane, Helsby, was 53 when he was diagnosed with Posterior Cortical Atrophy (PCA), the same variant that has afflicted the author Sir Terry Pratchett.
PCA is a progressive degenerative condition involving the loss and dysfunction of brain cells particularly at the back of the brain.
Whereas Alzheimer’s is most commonly associated with deterioration in memory, individuals with PCA typically have well-preserved memory but instead show a decline in visual processing.
Now 54, Paul and his wife Alison, also 54, want to raise awareness of the condition and reach out to anybody in the area who has also been diagnosed with PCA.
Since his diagnosis in February 2012, Paul’s life has changed dramatically.
His spatial awareness significantly compromised, he can no longer drive, cycle or go out alone due to an inability to judge depth, distance and speed of traffic.
His immediate short-term memory is poor and is likely to get worse as the illness progresses.
He has difficulty seeing things which are directly in front of him and negotiating stairs and escalators, as they look like slopes to him.
He has trouble reading and using computers now because of the effort required to interpret individual words.
Father of two Paul worked as a consultant in the financial services prior to PCA and spent a lot of time away from home.
The couple originally believed Paul’s visual issues were stress-related but, after collapsing, his doctor referred him to a neurologist who arranged a battery of tests and scans.
Alison, who has given up her work as a teacher at West Cheshire College to become her husband’s full-time carer, said the diagnosis came as a relief to Paul, who thought ‘he was going crazy’.
“Paul was given a fairly quick diagnosis once he sought medical help, but if we had known more about his symptoms sooner and what they might have been indicating, we would have had more time to put our house in order, so to speak.
“Many people do not get such a speedy diagnosis, which is so important.
“Despite everything, we have been given a little time to smell the roses - something everyone deserves when they are facing such a diagnosis,” she said.
The couple believe dementia is not a normal part of ageing, because the fact that young people have it or variant forms like PCA highlights that it is an abnormal process of body functioning.
Often opticians are the first port of call for those who have not yet been diagnosed with PCA.
Paul said: “The thing is that if your optician knows what some of the symptoms are, it could make a big difference.”
Paul and Alison attend PCA Support Group meetings in London, but are keen to see if there are other families locally trying to cope with a devastating diagnosis of early onset dementia.
PCA Support Group Coordinator Jill Walton said: “Typically, people with PCA tend to be misdiagnosed, often for several years, and tend to find themselves passed around various opticians and optometrists before somebody eventually realises that it is not a problem with their eyes but it is a problem with their brain.
“Crucially for us, early and accurate diagnosis is essential so that people know what they are dealing with.
“It is reasonable that people may not have come across it before but we need to make sure that they are at least aware of it.”
If you would like to get in touch with Paul and Alison, contact frances.barrett@trinitymirror.com and for more information about PCA or support visit
