Living with hemiplegia

Hemiplegia is a condition which affects one side of the body only, (hemi comes from the Greek word meaning half) I have left sided hemiplegia, which means I am affected on the left side of my body, especially my left arm hand and leg, my right side is normal. I used to call my right side my good side, and my left side my naughty side when I was very small.

I have congenital hemiplegia it cannot be cured. It is caused by damage to part of the brain which could have happened before, during, or soon after I was born, it is called congenital hemiplegia; (usually damage to the right side of the brain causes left sided hemiplegia like mine.) Other forms of hemiplegia are called acquired hemiplegia (as a result of having an illness or a stroke). It is normally the result of a stroke (blood vessel disorder), although, disease processes affecting the spinal cord and other diseases affecting the hemispheres, are equally capable of producing this clinical state.

The most common cause of hemiplegia in children is infant stroke or childhood stroke.
Cerebral palsy can also affect one hemisphere, resulting in limited function. This does not cause paralysis but instead causes spasms. Cerebral palsy where this is the only symptom is often referred just as hemiplegia.

Hemiplegia is similar to hemiparesis, but hemiparesis is considered less severe.Childhood hemiplegia is a relatively common condition which affects one child in a thousand. and I was the one in a thousand to have it (bad luck me!) Nobody really knows why I got hemiplegia in the first place. Some of the doctors say it may be that my Mum had a difficult time giving birth to me. I guess being born was a bit of bother for both of us! I can't remember much myself it was too long ago.
Apparently the young brain is quite flexible so many of the jobs that the damaged parts need to do, can be done by the unaffected parts of my brain, which is good news.

Some children with hemiplegia have additional medical problems such as speech difficulties, visual field defects or epilepsy. Many others have less obvious additional difficulties, such as perceptual problems, specific learning difficulties, or emotional and behavioural problems, which may be more frustrating and disabling than their physical problems. I am one of the lucky ones, in as much as I don't have any of these extra problems associated with my hemiplegia.

I have lots of physiotherapy and other occupational therapy, to help get my left side working better. I do lots of sporty things like swimming which I like very much, I am in level 9 now, I also do trampolining, and horse riding with South Bucks RDA (Riding for the Disabled) and lots and lots of exercises to keep my body working correctly. I also walk quite a bit.

I walk to and from school every day, which is about 2 miles, and when I go on holiday to places like the picturesque Lake District, which I love, I walk for miles and miles, apparently the uneven ground is good for the balance problems that I have with my hemiplegia.

I try as much as possible to do the same things as my friends do, but sometimes it is difficult for me, because I can’t grip things with my left hand, they just fall out, and I sometimes, (well a lot actually) fall over when my right leg is off the ground, so I have lots of bruises mainly on my left leg and foot.

I wear specially made  neoprene (the rubbery stuff wet suits are made of) splint, for most of the day on my bad hand, which allows me to use my left hand for some simple tasks like holding light object, but I will never be able to hold things like a hot drink in my left hand. They come in different colours too which is nice, pink is my favourite. I also wear special custom made boots, with insoles moulded to my feet, so they are more comfortable than they look, they resemble walking boots.

I love music, and play a special handmade descant recorder, which allows me to play using only one hand. A normal recorder costs about £6, mine which is a very sophisticated instrument cost over £400, it has an adjustable thumb rest which clamps the recorder to my right thumb when I use it.

This is a photograph of my wonderful Dolmetsch descant recorder, it is a right handed version, so I can play the instrument only using my right hand, there is a left handed version available for people who can’t use their right hand.
Four keys replace the finger and thumb of my unusable hand, it incorporates a two-position thumb key (closed or open), operated via a key with my smallest finger of my right hand.

Dolmetsch started making their one-handed gold-series recorders, when they were approached by the charity REACH as they were being asked to find a manufacturer to replace Zen-On in Japan who had stopped making their own plastic recorders with a one-handed key system.

They decided to switch the base instrument from plastic to wood, because it was easier to fit the keywork, and at the same time they worked with Howarths the oboe making company based in London and Worthing to make the keywork much stronger by copying the type of keys found on modern oboes. It is this system that my recorder has fitted to it, and which is also supplied on their one-handed trebles.

Dolmetsch have been making adapted musical instruments since the 1930’s but they make only 100 instruments like mine a year.

You can't just pick up my recorder and play it without knowing what keys to press to produce the right notes, so even other musicians won't necessarily know how to play my instrument, so I have to show them how to do it, which can be quite interesting! I use a special notation chart which is supplied by the instrument makers, the left and right charts are both different.



All About Me
HemiHelp
Living without my Mum
HemiHelp Children helping Children Concert



Coping with my hemiplegia at school
with a few simple aids.

Me playing my special one handed
Dolmetsch descant recorder

Running in the relay race at my old school

Swimming at Sandbanks

Enjoying a spot of one handed climbing

 

In training for my Race for Life