Wurzel Tommy Banner tells us about his wife’s struggle with PSP.
Chris Banner has always been at her husband’s side. When Tommy and his fellow Wurzels perform she is never far away and that hasn’t changed.
She’s still there tapping her feet to the hits as the West Country legends perform the length and breadth of the country, but her mobility is suffering, as is her vision and speech.
Initially, she was diagnosed with Parkinson’s disease because the early symptoms are so similar, but this summer the couple, who live in Taunton, were given the news that it was PSP – Progressive Supranuclear Palsy – for which there is no cure.
However, Chris and Tommy – who himself fought prostate cancer just a few years ago – are determined to be positive knowing that research is under way to try and find a cure.
Tommy said: “It started in 2009. Chris has always had ear, nose and throat problems and we noticed her balance was bad. She was seen by an ear specialist who said it wasn’t anything to do with her ears and referred her to the neurology department.
“She had every scan under the sun and various neurology tests. As well as her balance being bad, we started to notice she was getting confused.”
Treatment for Parkinson’s disease began but gradually more tests eliminated the condition.
Tommy said: “PSP was suggested. We went to Frenchay in Bristol and it was confirmed.
“One of the main problems is that she falls backwards without warning and that is a classic sign of PSP.
“She has no warning and there’s nothing you can do about it which means she can hurt herself.”
Chris, 61, fell in the shower and damaged her vertebrae before the diagnosis but now a host of safety equipment is installed throughout their home in a bid to avoid further injury. “We have to watch her all the time,” said Tommy. “She is aware of what is happening but she has no warning that she is going to fall. Her speech is slurred and movement is slow.”
“Chris finds it frustrating because she was used to doing everything at 100 miles an hour. She has a walking aid and bombs around on that,” said Tommy.
“We say to her just concentrate on one thing at a time. ‘Just pretend you’re a man’, I say to her, as she always used to say to me men can’t multi-task. There isn’t a cure and that’s hard for me and the family.”
The family attended a PSP support group to find out more, and although there are only four PSP specialist nurses in the country, Tommy says they are getting fantastic support from the Parkinson’s disease specialists in Somerset. He is attending a course for carers with St John’s and has been referred to a local sitting service because he knows he cannot leave Chris alone now.
“It is scary because we don’t know what the future holds. We are staying positive and looking for a cure.
“We know it’s important to speak out – even now people come to me in the supermarket to thank me for speaking out when I had prostate cancer and they say without reading about what I was going through they would not have had the test, and this is why Chris was happy for me to talk about it. I have been clear for a few years. We all go through life thinking we are indestructible. Once I got over the cancer I thought nothing else would happen except old age may take its toll. Chris, being younger than me, has always been healthy, never drunk a lot, never smoked. I thought we were doing OK and then bang.
“The frustration is hard – not knowing what to expect.”
Tommy, who is full of praise for the NHS care both he and now his wife receives, says: “PSP is described as a progressive disease – I describe it as an aggressive one. You focus on the fact that something may come up, something will give us a miracle cure.
“Our Hospice in Taunton tells people to make the most of today and that’s a good theory.”
Posted on April 12, 2012, in Family and PSP, The Wurzels and tagged affects of psp, coping with psp, living with psp, people who have psp, personal blog of psp, PSP, PSP and family, psp and me, psp help, PSP symptoms, PSPA, suffering from psp, understanding psp. Bookmark the permalink. 4 Comments.