A support group for people with epilepsy and their families set up by the Rotary Club Swindon Thamesdown is meeting a considerable need in Swindon according to some of the people who have joined.
Geoff Beale from Stratton has been desperate to share experiences of epilepsy since 2006 when his daughter Stephanie nearly died in a crowded swimming pool on holiday when she had a seizure whilst underwater. "If there is no history of epilepsy in the family, it is a complete shock if somebody close has a fit, you can feel absolutely helpless if you don’t know what the right thing to do is. The Rotary club initiative really has been fantastic; in just a few meetings we’ve met so many people with a wide range of experiences and learnt so much in a short time."
The group was launched after Rotary Club vice-president Paul Parfrey from Haydon Wick inspired fellow members to launch a three year project to support epilepsy sufferers in response to the needs of his wife’s niece, Leona McKee, who suffers from a severe form of the condition.
Pictured top, Paul Parfrey receives a cheque for £300 the support group from Hanif Robani following a charity curry night at the Bombay Lounge at Peatmoor. Below, Leona McKee
In October Leona, 22, who now lives with her parents, underwent surgery to have probes placed onto the surface of her brain but complications prevented more advanced procedures being carried out at the time. The inter-cranial surgery to try and reduce the effects of seizures should take place towards the end of January. Her father Tom said things had been really tough for Leona. "As her condition as worsened she’s become quite isolated and has received fantastic support from a few friends who have stuck with her through difficult times. But her family and friends have been shocked by the negative response and cruelty of some people who do not understand what she is going through and the effects that epilepsy has on sufferers in general.
"We have high hopes that the major surgery will give Leona her life back. Her consultant Dr K.A. Sieradzan and her team. at Bristol Frenchay Hospital have done an amazing job with her and provide superb care."
Steve Weisinger from Highworth has become a member of the epilepsy support group and brings huge experience of epilepsy having had his first seizure at the age of ten months. However it settled down during his childhood and into his twenties but returned with a vengeance when he was 32. He said, "the epilepsy became increasingly severe until I underwent temporal lobe surgery when I was 43. Apart from a slight memory loss and a little reduction in vision, my life has been turned around, I’m totally free of fits and am able to drive again.
"My consultant is director of the National Society for Epilepsy and has pioneered many procedures so I do all that I can to spread information about it and help people suffering. No two sufferers will have the same epilepsy. It strikes into different ways and can vary in the level and type of fit a person will suffer, so its important to get support if at all possible."
Paul said the Rotary Club project had obviously tapped into a need for help in Swindon. "We have attracted parents with under fours who have seizures through to retired people; we now have 15 members plus family and friends. In a short time we’ve gathered a lot of information for members who are finding great relief in talk to others. Parents with young children are getting a lot of help because they’re not receiving enough of it from the health services. The group gives people time to talk without feeling pressured or embarrassed about epilepsy.
"Given that 1 in 131 people suffer from some form of epilepsy in Britain, we believe there are many in Swindon who would benefit from knowing there is a support group. You don’t need to attend meetings but there maybe times when you need a group, and your experience could be helpful to others."
The Swindon Epilepsy Support Group meets at the Holiday Inn, Coate Water at 8pm on 17 February and monthly throughout the year. For details contact Paul Parfrey on 07929 725 708 or mail: firstname.lastname@example.org