Marie's story

Eight years ago, Marie realised something was wrong. Working as a PA in a busy company, she noticed that she was having difficulty using her left hand. She couldn’t make a fist and was having trouble typing at her usual speed. This frightening discovery was the catalyst for a series of medical tests that ultimately led to a diagnosis of Parkinson’s disease, a degenerative disorder of the central nervous system that often impairs motor skills and speech.

The diagnosis was a sudden and shocking revelation for Marie, then 48, her husband Ray, 50, and their two children Mathew and Sarah, now both in their early twenties.

“She was so young to have Parkinson’s, none of us could quite believe it,” remembers Ray.

It was soon discovered that Marie’s condition was far more aggressive than normal. Within a couple of years, she was forced by the severity of her symptoms to stop work, and her speech suffered a dramatic decline. Just over a year ago, Marie began to have difficulties swallowing, which made eating and drinking a trying and time consuming process. As a result, her weight dropped to a frightening five stone and she took the brave decision to begin using a PEG feeding tube. PEG stands for Percutaneous Endoscopic Gastrostomy, a surgical procedure for placing a feeding tube without having to perform an open operation. Marie went to hospital to have the PEG fitted, and was then referred to Phyllis Tuckwell Hospice to have the new feeding procedure explained.

“We met with the Community Team Doctor, Cathy, from the Hospice, who explained very clearly how the PEG system worked,” Ray recalls. “But just as importantly, she explained what the Hospice does for people with similar conditions in the local community and how they would look after Marie and her family for as long as we needed. We felt relieved that we wouldn’t just be abandoned with what seemed like quite a frightening new phase in Marie’s illness.”

“Once we came here, we felt like we'd found the answer – people who were willing to listen and really had time for all of us as we struggled with new developments in Marie’s illness. The Hospice were the ones who proactively made suggestions for treatment, they lent us equipment and showed us how to use it, they were the ones who noticed the pins and needles in Marie’s arm and referred us to a specialist to see about that,” Ray told us.

Marie began attending Day Hospice on a weekly basis.

“Phyllis Tuckwell Hospice spotted weekly differences and progressions in Marie’s condition which as a family you don’t notice day to day,” says Ray. “They provide a service like nowhere else. The children and I have reassurance that someone is really looking out for their mum. Things happen quickly with Marie and the Hospice is able to assess and respond in time with these changes.”

“Marie sees a hairdresser, has a manicure and enjoys a massage when she visits the Hospice,” Ray says incredulously. “They truly look after the whole person and not just the illness. When you go to a hospital, they are concerned with ‘the thing’ and not all the other worries and processes that go with it and make it a very human experience. At the Hospice, every professional knows what the others are contributing to Marie’s care.”

“We were surprised that the Hospice makes no charge to the patients or their families despite the exceptional level of care,” says Ray. “We simply must keep the Hospice’s doors open for other families like us for many years into the future. It’s a shame that most people only really understand what the Hospice means to the community once they need its services. I would urge anyone who hasn’t been there and doesn’t know what it’s for, to go for a visit – that will take away all your preconceptions and show you how much we all need Phyllis Tuckwell Hospice.”

Sadly, Marie passed away shortly after sharing her story with us. She will be missed very much by everyone who knew her.