A POOLE woman, inspired by the bravery of her late mother, is setting up a support group to help others who are suffering from the same incurable disorder.
Sue Pinfield-Wells lost her mum Eileen Norris last August, four years after the 64-year-old had been diagnosed with Multiple System Atrophy (MSA).
The family was not alone in not having heard of the disorder before – many health professionals have never encountered a case before.
“When she was diagnosed, neither myself or dad or any of us knew what MSA was. We looked it up on the internet and discovered it was a terminal illness,” said Sue, mum of three daughters.
MSA, a progressive neurological condition, is caused by damage and deterioration of nerve cells in areas of the brain.
“It makes the body shut down,” explained Sue. “Initially she started to fall over. Soon after I had my youngest daughter, mum started getting stiffness in her arms and was having problems with walking. She was walking with a stick.”
An only child, she and her husband Dave decided to move from Coventry to Poole so they would be closer to Eileen, who was being cared for at home in Wiltshire by Sue’s dad.
As the disorder took its course, it had a devastating effect on Eileen, who had previously been an active woman.
“The only way she could get around the house was by shuffling. Her swallowing was bad and she was struggling to eat. She drank through a straw – she couldn’t hold a cup. Her legs swelled up really badly and her feet and hands curled up,” recalled Sue.
“Every weekend we would go and help look after her. Life expectancy is four to five years after diagnosis.
“There is no cure, but she took lots of medications. She lost her speech and ability to eat. By the end she couldn’t walk and was totally bed-bound.”
Eventually Eileen was admitted to hospital in Bath with an infection, where she spent the last 12 weeks of her life. Her will to live surprised doctors when she survived repeated bouts of pneumonia before passing away on August 17.
“I think the only thing that kept her going was her grandchildren. Every time she we took them to see her she would perk up,” said Sue.
Following Eileen’s death, Sue decided more needed to be done to raise awareness of MSA and to support sufferers and families.
She is now looking for a meeting room in the Bournemouth and Poole area and hopes to start the support group in spring.
Anyone who can offer a meeting room with disabled access, or who is interested in joining the new support group is asked to email firstname.lastname@example.org.
What MSA is
UNTIL recently MSA was thought to be extremely rare, but recent research suggests about five people in every 100,000 are affected, meaning there are at least 3,000 sufferers in the UK.
MSA usually starts between the ages of 50 and 60, but can affect older and younger people. It is not infectious or contagious and has no connection with Multiple Sclerosis.
No two people have the same set of symptoms or progression, but for men the first sign is often erectile dysfunction, and both sexes may have bladder problems.
Other early signs can be feeling stiff and slow; changes in handwriting; becoming clumsy or unsteady while walking; and feeling dizzy when standing up.
For more details about MSA and fundraising for research see msatrust.org.uk or ring 020 7940 4666.