Before we enter into reviewing the website, it is necessary to educate you as to what hemiplegia is and who Hemihelp are.
*** HEMIPLEGIA: THE DEFINITION *** Hemiplegia is a condition affecting one side of the body. Symptoms are different in every child but the most obvious result is a weakness or stiffness with poor hand function or mobility on the affected side. Right of left hemiplegia is often used to describe the side that the physical disability occurs. It is caused by damage to the brain: right brain damage will cause left hemiplegia and left damage, right hemiplegia. Congenital hemiplegia is when it has been caused during pregnancy, birth or shortly after the birth; acquired hemiplegia is when it is caused later on. Affects are similar to that of a stroke and it affects about 1:1000 children.
*** THE ORGANISATION *** Hemihelp was formed by a group of parents in 1990 to provide information and support to children, parents and carers of children with hemiplegia as well as increasing the general awareness of the condition to people who work with them. They currently have over 2,700 members throughout the UK consisting of families and professionals.
*** HOW WE DISCOVERED THE SITE *** The bombshell had been dropped; our son had been diagnosed as having congenital hemiplegia aged 1 and 9 months. The consultant had been very good and explained things clearly to us. It was nevertheless quite devastating. We had been told to go away, read up as much as we could on the condition and return in 4 to 6 weeks to ask any questions that we had thought of or questions/concerns that other family members had. He had directed us to the SCOPE website which deals with all the forms of cerebral palsy and were told to keep an open mind as our son's symptoms were very slight to the majority of information on this site. We didn't get that much from the website so did our own Google search of hemiplegia and found the Hemihelp site.
*** DESIGN *** The first impression is of a clean looking, clear website. It has a white background with a very pale watermark. The banner has the Hemihelp logo in royal blue and 'AA' yellow right across the top, underneath which are the main links set in neat different coloured rectangular buttons. The site only uses the middle 2/3 of the page leaving quite a lot of space either side. All the text is centralised but to the right hand side of this is a very long column of yellow headed links in that you have to scroll down below the end of the main text to see it all.
There isn't too much text on this page although you do need to scroll down to see it all. The text is too small for my liking. The thing I find really helpful is throughout the text there are links to such things as definitions and other areas of the site.
*** CONTENTS ***
HOME Provides brief insight to both Hemiplegia and the Hemihelp organisation
ABOUT US A bit more in-depth including details of helpline, fundraising and newletters
HELP US Information about donation giving and fundraising
NEWS AND ACTIVITIES Some quite long articles here about different issues currently being pursued
KIDS PAGE Photos of 'Children Helping Children' concert and a hugely helpful chart by a qualified nursery nurse suggesting suitable activities to help the child develop their skills on their 'hemi' side
PROFESSIONALS News from conferences that they organise throughout the UK for professionals dealing with children with Hemiplegia
JOIN Details of how to join the group
CONTACT US Contact details
As already mentioned, throughout the text on the homepage there are also links. These are to
NEWS (as above)
HANDBOOK A valuable source of information for us, you can download and print leaflets that give practical advice on many things, most you wouldn't think about
MESSAGE BOARD Provides a place to share your thoughts and concerns
*** HOW EASY THE SITE IS TO USE *** I've never had a problem accessing the site. I do use a broadband connection and have always got straight to the links I request.
*** WHAT THIS SITE HAS PROVIDED FOR US *** This is the difficult bit to put into words. What has it provided for us? A place to come and be encouraged, shed tears, get a glimpse of the realistic future for our son with the difficulties he may incur.
The most helpful area of the site was the HANDBOOK link. Here we found a world that we never even contemplated. Firstly it helped me realise that I was quite normal as I was very emotional at the beginning and it explained that it was more than likely that I was going through a sort of bereavement for the straightforward life I had unconsciously foreseen for my son. Other than that it shows that a normal life can be achieved with most things although some of the ways to approach things may be different. They show ways of tying shoelaces with one hand, ways to help them get dressed, musical instruments that only require one hand and details of ones that can be altered, details of bikes and how to adjust them, i.e. change the breaks over if needed, equipment to change cars etc, as well as details of other conditions that sometimes are in addition to hemiplegia such as epilepsy, perceptual difficulties and behavioural problems.
Our son's condition at the moment is that he has quite a lot of stiffness in his right ankle and calf and mainly walks high up on his toes on this side without support. His knee is also twisted in a little. He has a fantastic splint that keeps his heel at 90 degrees. We could choose the pattern so his has cars, lorries, aeroplanes and helicopters on. This has allowed him to become a confident walker and runner! He has a milder weakness in his right arm and his fine motor skills are immature on this side. He does choose to use his hand which is very encouraging but his arm remains slightly bent at the elbow if you try and straighten it. His main physiotherapy is to encourage him to bear his weigh on his right side so things like kicking a ball with his left leg is a great activity for him to do. Also things that use both hands such as Velcro fruit and veg, stickle bricks and threading toys. There is no concern about his understanding and he is a very happy and mischievous little boy! His speech is slightly delayed although no one knows if this is just one of those things or if it is due to his hemiplegia. We have just started to use sign language with him and in less than a month he is now using 37 signs confidently. His speech is now developing much more too and he his both using words to us as well as having gibberish conversations with his toys. We are very optimistic about our son's abilities and have the knowledge that he will use both of his hands in whatever he does, even though one isn't quite as strong as the other. We have been told that the damage has been done and although it won't get better, it won't get worse either. Having said that, it is very much a wait and see scenario as until our child continues to develop new skills, we will be unsure exactly where problems may arise.
*** WEB LINK *** www.hemihelp.org.uk
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