Family of Banham woman describe how rare brain condition is affecting her
- Credit: Archant
When Ann Dunning had problems with her mobility it was assumed that she had Parkinson's disease and was given treatment for it.
But as her symptoms got worse her family were convinced she had been misdiagnosed - a conviction that proved to be correct as she was then diagnosed with a rare brain condition that is slowly claiming her life and has no known cure.
Mrs Dunning, 70 and of Banham, near Diss, has been diagnosed with progressive supranuclear palsy (PSP), which affects about 4,000 people in the UK and sees sufferers have an average seven year life span left from its onset.
And now the brave grandmother of two, who due to her condition has had three falls at her home in the last three weeks, has agreed to take part in trial research at Addenbrooke's Hospital in which dye will be used to monitor any changes to her brain so that maybe one day other sufferers can be helped.
Her husband Anthony Dunning, 76 and a retired builder, spoke emotionally on how PSP was robbing of his wife of enjoying hobbies such as gardening.
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He said: 'In the last three weeks she has had three falls at home. It is so hard to see what is happening to her as she used to be so fit, she loved gardening. It is like Parkinson's, but a much worse condition.
'I had never heard of PSP and either had our doctors.
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'When Ann said she wanted to be a guinea pig she said anything that would help others would be worth a try.'
Because PSP is so rare doctors at the Norfolk and Norwich University Hospital thought Mrs Dunning had Parkinson's disease due to her symptoms which affect her balance and movement and makes her withdrawn.
It was only after she had been referred to Addenbrooke's that she was diagnosed with the terminal disease in September 2015.
Mrs Dunning is already part of a research programme run by Addenbrooke's consultant neurologist Dr James Rowe which has seen her take part in drug and medicine trials.
The family hope her participation will one day help others living with the condition.
Daughter-in-law Catherine Dunning, 51 from Thorpe Parva, near Diss, said: 'She is becoming vacant and quite withdrawn and has trouble with her gait.
'You are watching someone slowly taken and it is awful. I have got two children and they are watching nanny slowly decline.'
On Saturday Mr and Mrs Dunning were joined by their daughter-in-law Catherine Dunning at a fundraising and awareness event held at Scole Primary School where she is a teaching assistant.
It raised at least £1,000 for the PSP & CBD Support Group for the East, which also helps those with cortico basal degenerative disease.
Attending was the founder of PSP & CBD Support Group for the East, Linda Iaccarino, 70 and who lost her husband Saverio to PSP in 2013 at the age of 72, and Linda Moore, 48 of Lowestoft, and whose aunt Veronica Mumford died of PSP in 2012.
PSP is associated with the over production of the protein tau in the brain and with PSP it forms into clumps which are believed to damage nerve cells.
The progressive death of nerve cells leads to difficulty in balance, movement, vision, speech and swallowing.
For information on the PSP & CBD Support Group for the East call Mrs Iaccarino on 07818 817505 or email firstname.lastname@example.org