Sandy refuses to let disease curtail her enthusiasm for life
Monday, December 15, 2008, 23:00

FOR many people, retirement is a relaxing and enjoyable time of life, and Sandy Simpson, 65, from Alphington, Exeter, was making the most of hers.

It was only when she went to her GP with a minor twitching in her right arm, that she ended up being diagnosed with Motor Neurone Disease.

MND is the name given to a group of related diseases affecting the motor neurones, or nerve cells, in the brain and spinal cord. As the motor neurones gradually die, the muscles stop working.

Sandy spoke exclusively to the Echo about how MND has changed her life and how she has gradually come to terms with the illness.

She worked at Exeter University before retiring five years ago, and lives with her husband of 25 years, Vic.


She said: "Retirement suited me and I was involved in some wonderful activities.
"I went to Spanish and art classes, I was a member of the Bridge club, University of Exeter Retirement Association and my local Church, St Michael and All Angels.

"My husband and I loved travelling and we went on lots of holidays together."

But when Sandy noticed a weakness and twitching in her right arm two years ago she went to her doctor to check it out.

She said: "It didn't seem very dramatic at the time. The weakness got worse, however, and I was referred to a neurologist for further tests.

"At this point the seriousness of the situation became apparent. Yet even at that point, I never for one moment thought it could be MND."

Sandy underwent a series of tests, including MRI scans, blood tests, and X-rays.

"When the diagnosis eventually came it was a tremendous shock and I was completely devastated." revealed Sandy.

"Vic and I came away from the diagnosis thinking that I might only have a few months. I'm pleased to say that that was 18 months ago."

As the couple tried to digest the situation, they also started to break the news to close friends and family, including their son Nick, 42, who lives in London.

"We knew we had to adjust mentally," said Sandy. "It was very difficult. Unlike cancer, with MND you don't have any hope.

"So it's very hard to feel positive about things. I kept thinking, it's terminal, there's no cure, we don't know how long I have left. We had to totally reassess our lives and plans for the future."

Sandy and Vic found a great deal of support in their GP and the MND Association.

She said: "The association's website really helped me — it provided me with the information I needed. Once we'd done our research, both my husband and I decided to make the best of the time left.

"I try to not think too much of the future, or indeed grieve too much for the life I've lost."

There is a strong support network for people who suffer from MND, and this has become an invaluable resource to Sandy. She said: "My MND Association Visitor, Cynthia Hopkins, is just wonderful. She is full of practical help and emotional support. I'm so grateful that she's here and view her as a very good friend now.

"I regret that I didn't see her as soon as I was diagnosed as I know that she would have been able to help me cope with the initial shock."

The MND Association has donated to Sandy specially designed equipment.

She said: "The NHS are good and arrange for sessions with a speech therapist, which makes life easier."

MND is a very gradual disease, and slowly Sandy has lost strength him her arms.

Vic has now become her main carer. "I now rely on him to do so many things for me," she said. "from cooking and running the house, to washing my hair and dressing me.

"It's a very frustrating disease to have, as I have to ask for everything I need doing to be done for me and you lose your sense of freedom."

Sandy has a refreshingly positive attitude towards her condition. She said: "I have learnt not to dwell on things and I try to enjoy and get as much out of life as possible."

Sandy wants MND to become better known by the public.

She said: "It's a very low-profile disease, I would love to help raise enough money for research and possibly one day a cure for it."

For now, Sandy takes it one day at a time.

She said: "After you are told you are terminally ill you stop putting things off.

"You really enjoy being with the people that you love and cherish the most.

"I'm very lucky to have good friends, my husband and my son Nick, they raise my spirits and make me smile."



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