HemiHelp Conference for Parents, Crawley, 2006
On 16 September 2006, parents gathered at Maidenbower Community Centre in Crawley, West Sussex, to attend a conference for the parents of children with hemiplegia. The conference, held by HemiHelp and Scope, was a great success, with many parents commenting on how useful they found the day. Here are just some of the positive remarks they made!
- "It was good to be able to listen to professionals, to broaden my knowledge and of course to meet other parents"
- "We knew very little about hemiplegia before today, so we learnt a lot, thank you"
- "It was good to spend the day with people who have experienced similar problems associated with hemiplegia"
The day featured four very different talks, on botulinum toxin, epilepsy, therapy and living with hemiplegia.
Dr Patricia Atkinson, Consultant Paediatrician at the Child Development Centre, Crawley Hospital, gave an overview of the causes of hemiplegia, and the use of botulinum toxin to treat hemiplegia and cerebral palsy. Dr Atkinson described how botulinum toxin can improve gait, and outlined the typical procedure for getting treatment. She emphasised that it’s important for the family, physiotherapist and paediatrician to work together to ensure that the child gets the full benefits of botulinum toxin treatment.
Sally Gomersall, a Trustee of the National Society for Epilepsy (NSE), spoke about her personal and professional experience of living with epilepsy. Diagnosed with epilepsy at 15 months, Sally suffered so many seizures she was told she wouldn’t reach her 40th birthday. But in her 30s, she underwent a five-hour long temporal lobectomy (an operation to remove part of her temporal lobe), and following the surgery, her seizures stopped. Sally set up a patient information service at a Nottingham hospital for the NSE - now called an NSE Information Service - and started her own business, training people to support professionals who care for and support individuals with epilepsy. Sally told parents that many children do grow out of their epilepsy. A paediatric neurologist with a specialism in epilepsy should be able to tell, depending on the type of epilepsy, whether or not this is likely.
David Scrutton, a physiotherapist and Honorary Senior Lecturer at the Institute of Child Health, University College London, gave a talk entitled ‘Why don’t all therapists use the same treatments for cerebral palsy?’ David emphasised that congenital hemiplegia seldom prevents a child from having a ‘socially normal’ life, and that a child with hemiplegia will be governed by their own intellect and personality (and perhaps by epilepsy), rather than by their hemiplegia. This means that treatment and management of hemiplegia should focus on what’s best for that particular child, rather than simply concentrating on the physical manifestations of hemiplegia. According to David, it is important to think of the adult that the child will become. As time passes, it becomes easier to define what will be important for your particular child.
Living with hemiplegia
Finally Jenny Wright, an Adult Member of HemiHelp, gave an inspiring speech about her experiences of living with hemiplegia (see below for some of the highlights). Her speech covered the highs and lows of living with hemiplegia, from avoiding showers at school to the logistics of holding a bag and a drink in one hand at the pub. Her closing words to the audience were: “Aim high and go for your dreams. No one else can do it for you.”
Jenny’s words of wisdom
On secondary school:
- “Bunsen Burners would have been problematic to a lesser mortal, and hydrochloric acid coupled with involuntary arm-waving is dodgy at the best of times. But I survived school and it survived me.”
On her wedding day:
- “In 1991 I married my handsome prince. I was on cloud nine and it was the best day of my life. I did have a spasm when he put the ring on my finger, but that was bound to happen, wasn’t it?”
On having children:
- “Before they were born, I imagined the boys would learn to take advantage of my situation. How wrong was I? They have never pulled a stunt because they could, and I’m really proud of them all.”
On having cerebral palsy:
- “I’ve had all the normal life experiences, and to be perfectly honest I’m glad I’ve got CP. It’s made me who I am.”