If you’ve read Pea’s Book of Holidays, you’ll already know a little about hemiplegia. Ghosthunter Ryan Munro, of Paranormal Investigations Edinburgh, joins Pea and family on the hunt for Corfe Castle’s mysterious Grey Lady – could she be the ghost of Enid Blyton herself? Ryan wears a splint on his wrist and his leg, and he walks with a limp, but a lot of his condition’s impact isn’t so visible.
[Text from page 192 of Pea’s Book of Holidays: ” ‘Maths isn’t his favourite, is it, Ry? Because it’s hard for him to keep written-down numbers in the right order. Since that re-wired brain is working extra-hard, it gets tired quicker, so sometimes he gets a bit… stroppy.’ Ryan made a growly noise, but Max grinned unaplogetically as he continued. ‘Oh, and he likes pineapple on pizza. Oddest thing about him by far.’ “]
Things that able people do without having to think – like tying up shoelaces, opening a bag of crisps, running for the bus – require a lot more thought and effort if you have limited use of one hand and one leg. It’s made a lot worse when you have to repeatedly explain how the condition affects you to people that you deal with all the time; teachers, bosses, friends, colleagues, doctors, physiotherapists and so on. The issue is complicated because hemiplegia is more than a physical disability: it is caused by an injury to the brain around the time of birth and so people with the condition may have issues that are not readily apparent. These may include speech and/or visual impairment, fatigue, cognitive and psychological issues and more. People generally remember the physical aspect, they often overlook or forget about these other problems – yet people with hemiplegia may find these less obvious issues can be more impairing.
Moreover, it can be very hard for a person with hemiplegia to explain their issues. When you are a young child, it is quite difficult to articulate how you feel to your teacher. As a teenager, you are trying desperately to ‘blend in’ so the last thing you want is to attract attention to yourself in front of your classmates because of your disability. By the time you are an adult you are fed up with having to ‘tell your story’ again and again.
This is why HemiHelp, the UK’s national charity for hemiplegia, has developed a pioneering online tool – My HemiCheck.
The person with hemiplegia can create their own individual profile by completing a short online checklist. Their responses generate a printable personal overview of how hemiplegia specifically affects them. They can then show this printout to people they regularly interact with such as teachers, medical professionals or employers, so that they don’t have to keep repeating how the condition affects them. It can also be used when they meet new people in these contexts or in other situations. Whilst My HemiCheck is a simple concept, hopefully it will make a significant and positive impact on the daily lives of people living with hemiplegia.
See My HemiCheck at http://myhemicheck.hemihelp.org.uk/
You can join in Hemiplegia Awareness Week 2015 too! Watch this video, then share it online, in your school or workplace.
What is hemiplegia?
Hemiplegia is caused by damage to the brain usually before or around the time of birth. The effects are like a stroke with a lack of control and weakness down one side of the body – the opposite half to the injured side of the brain. However, the physical severity will vary from one person to the next. In one person this may be very obvious; he or she may have little or no use of one hand and may limp severely. In another person it will be slight and only show when attempting specific physical activities.
It is not just physical development that may be affected. In fact, most people have additional diagnoses such as epilepsy, visual impairment, speech difficulties, perceptual problems, learning difficulties, emotional and behavioural issues. While these effects may be harder to see, they are often more significant to people with hemiplegia and can impact on confidence, education, employment, friendships and relationships.
Hemiplegia is not rare. In fact it is as prevalent as Down’s Syndrome – it affects one in a 1,000 people – but is comparatively unknown. One or two babies are born with hemiplegia every day in the UK and many more acquire the condition later in childhood following a stroke, head trauma or a viral infection such as meningitis.
Who is HemiHelp?
HemiHelp, the UK’s national charity for hemiplegia, provides information, support and runs events for children with hemiplegia and their families as well as for professionals (medical and educational) involved in their care.