Parents' conference and children's and young adults' workshops, Newcastle, 12th May
Read HemiHelp trustee, Liz Barnes' write-up of the conference
Newcastle greeted us with hailstones on Friday evening, but on Saturday the promised sunshine arrived, setting the mood for our event. About 50 families and adults attended, mostly from the north east and Cumbria. The day was not without its glitches – a suitcase with HemiHelp merchandise, sent ahead by courier, had disappeared and we had no copies of the Handbook and Primary School Pack to sell – which was probably just as well because those HemiHelpers who would have staffed the stall had to rush out to buy supplies and run a very successful children’s arts and crafts session to replace the drama workshop people who had cancelled at the last moment.
The programme was varied, with a session on changes in additional support for children at school (watch this space!), and an overview of HemiHelp’s information services from early photocopied leaflets to our stunning Primary Pack and Hemiplegia Handbook. Children also had an African drumming session, and our transition adviser Karen ran an adult workshop where topics ranged from friendships and relationships to driving and cooking.
One reason we were in Newcastle was the exciting research into play therapy going on at its University and Royal Victoria Infirmary, so after a welcome from Simon Crosbie, HemiHelp’s new Chair, Dr Janet Eyre, head of the research team, talked about how effective early therapy intervention can be in minimising the effects of hemiplegia. And by early we mean days after birth! Janet showed us video of a four day old baby (without hemiplegia) reaching for a soft toy hanging above its cot, and revealed that babies this young were not only keen to play but knew which toys they liked and disliked. Then footage of a ten week old baby with hemiplegia showed him also reaching for a toy – with his affected hand! Babies this young have not yet developed a ‘hemiplegic’ pattern of brain activity that reflects the increasing use of the non-affected over the affected side. And the Newcastle researchers hope that early intervention can lessen this ‘rewiring’ of the brain.
Of course most children with hemiplegia are born with it and only diagnosed several months later; but some, like the one filmed, have a stroke soon after birth, and so can have an immediate ‘preventative’ therapy programme. But Dr Eyre’s research has also shown that although the brain develops very quickly in the first six months of life and a lot of connections are lost if a child has hemiplegia, there is enough flexibility left to improve hand and arm function all the way through childhood and up to about 25 years of age.
Another study in Newcastle involves children (aged between 4 and 14) having daily extra play at home, focussing on two handed activity, over a period of three months, with half of them having a botox injection first and the other half just being injected with saline solution (and no one knowing which child has had which). All the children are showing an improvement in hand function, but evidence is emerging that it is the therapy, not the Botox, that makes the difference.
Janet Eyre also talked about the importance of parent and family involvement in therapy – just as well given NHS cutbacks. Some parents reported unwillingness by children to do exercises at home, but Janet stressed that it was not a question of exercises, but play encouraging the use of both hands.
Since a lot of play these days involves computers, another side of research in Newcastle is the development of specialist equipment and games, which HemiHelp members had a chance to try at the conference. One game, for young children, has a naughty cartoon poodle and his friends looking for a bone. The child controls the game by touching the screen wearing different coloured play dough ‘caps’ on their fingers, a camera in the computer recognises the colours and the game proceeds. A more ambitious graded game, Circus Challenge, is for all ages. Here the player, prompted by a figure on the screen, uses two handed movements to make acrobats, jugglers etc perform their acts. The game’s wireless remote control devices can be reset to any player’s abilities (so a child or adult with hemiplegia can play with, and beat, friends and family) but they are designed only to work if the player’s hand and arm are in the correct position, so can’t be ‘cheated’, as is possible with systems like Wii. The Newcastle team are discussing production of these games with a major games company and hope to have an affordable package in the shops by next year.
The star performer at our conference, however, was adult member Joanna Sholem, showing adults and children alike that having hemiplegia doesn’t mean living half a life. Joanna’s impressive biography includes time spent studying and working in the USA – one job was as nanny to the owners’ children at a ‘dude ranch’ in Arizona – and back in London running an independent toyshop before joining Scope’s corporate development team, helping the charity plan and carry out projects more effectively. But what impressed most were her wonderful red shoes with platform soles and killer heels – a recently fulfilled dream of many years that made her the role model of choice for most of the daughters in the room (and their mothers)!
Catch up on the day's presentations:
The Hemiplegia Handbook - a practical guide for the people who really need it - Liz Barnes, HemiHelp Trustee (and a parent of a child with hemiplegia).