What If…You Were Challenged Daily By Your Own Muscles? - Sam's Outlook

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What If You Were Challenged Daily By Your Own Muscles?

http://whatifnews.wordpress.com/2011/03/02/what-if%E2%80%A6you-were-challenged-d\

aily-by-your-own-muscles/

" For me, extra effort is required to perform even the simplest daily

activities. "

For a sufferer of Charcot Marie Tooth disease (CMT), this is what having the

condition entails.

Sam Arnold, 23 from Lincoln suffers from the inherited condition that affect the

peripheral nerves in your legs and arms. These control the muscles and relay

sensory information, but having the condition means that the nerves are

defective.

The neurological condition is thought to affect 23,000 people in the UK and

causes muscle atrophy, foot drop and an abnormal walking gait. Alongside these,

problems occur with hand function, dexterity and balance.

" I can't walk far without becoming tired or attaining cramp. Foot drop, the

deformity of having very high arches in my feet, makes them over turn when I

walk. It results in my walking being off balance. I have to constantly ensure

that I lift my leg quite high at the knee in order to bring my foot back down

steadily to the ground. Due to my sensory nerves being affected also, if I were

to close my eyes and you were to poke me with a pin at the knee, I wouldn't be

able to tell you whether it was sharp or blunt, I would only feel the object

touching. Simple tasks that require fine motor ability, such as doing up the

buttons on a shirt or even picking up a penny, prove tricky. "

Being a progressive condition, the symptoms of CMT will gradually get worse over

time therefore being difficult to spot in young children.

" I inherited type one CMT from my father. My parents knew I had CMT from almost

the moment I was born as my feet already had the typical high arches. When I

started walking at the age of 11 months, I could only manage three steps before

I would fall over. I soon became accustomed to falling and it wasn't long before

I would no longer cry as a result of it. From the age of two, I was taken to

physiotherapy on a regular basis in a bid to stop the rate of my muscles wasting

away whilst trying to improve my balance. The bulk of the exercises involved

muscle stretching and I was given a tailored stretching routine to carry out on

a daily basis to slow the development of deformities in my hands and feet and to

maintain muscle length. "

Sam eventually had to face the challenges his condition brought when starting

school.

" Learning how to write is a crucial part of primary education. During my time at

primary school, my writing was illegible because I simply did not have the

muscles in my hands to hold it steady. More concentration meant the more

decipherable my writing was, however, if I were writing as fast as any other

child my age, it would simply look like lines scrawled on a page.

Every year, sports day would always be a wakeup call, realising that I was much

slower, weaker and particularly unbalanced compared to the other children. I

don't think I ever felt overly upset by it all, I remember being much more upset

when I got singled out for wearing glasses.

But, despite this, I was extremely interested in sports at school. Lunchtime

would be wasted if I wasn't playing football, but due to problems with balance

caused by my feet deformities and muscle deficiency in my lower legs, mum would

occasionally scold me when I returned home with dirty, muddy trousers.

I remember one P.E. lesson in particular. We were playing rounders and the

teacher decided, that rather have me run around the track because of my tendency

to trip or run slowly, I would hit the ball and another boy in my class would do

the running. I felt fairly hopeless at this point but it turned out beneficial

for me and the team as there were no casualties.

The school would blame cuts and broken bones at playtime on my condition, but

I'm not sure it was down to the CMT entirely. They were simply playground

incidents, but ones which would affect me in later life. "

Before going on to start secondary school, Sam's parents had to arrange a

meeting with the head teacher and the special needs adviser in order to come to

an arrangement about what Sam's condition required. His first day meant that he

had to overcome the initial obstacle of getting to and from school.

" Buses would be too pushy for me, and if there was ever an occasion where I

would have to stand due to a lack of seats I was likely to end up on the floor.

Instead, I had a taxi take me to and from school every day. "

With the initial problem over, Sam was apprehensive about how he was to complete

the vast amount of work given to him by the teaching staff.

" To help with work, my occupational therapist advised that I was given a simple

word processor so that I didn't have to write by hand. I realised how having CMT

affected me in classroom and homework tasks. Cutting paper in a straight line

proved tricky as I didn't have enough strength or accuracy in my hands. So,

particular scissors were made that pushed themselves open again after they were

closed. When the occasion came for me to write, I was given a special holder for

the pen to help me with grip.

Like many kids, secondary school was never a particularly fun experience for me.

However, my disability was only partially to blame as I just didn't really find

the overall experience engaging. One parents evening my art teacher told my

parents that my drawing skills were very scruffy. It turned out she had no idea

I had CMT, nonetheless my mum wasn't best pleased at her criticisms. Due to my

many other weaknesses in school, I was always very self-conscious. Naturally

other kids would notice and wouldn't hold back making fun of it. "

Once finishing secondary school, Sam knew that he would never be capable of such

jobs in the army, other forces or as a professional sportsman so, turned his

attention to something he knew he was good at; computers.

" My father had worked in computing for a while so I went to college to do an IT

course. Initially, I rode a bike to college, which gave me a sense of freedom.

I could bike in a normal fashion and enjoyed it a lot. I took the bus to college

on cold or very wet days but biking, although tiring, built up my leg muscles.

When I reached sixteen during my time at college, I received a higher rate of

mobility in my disability living allowance meaning that I was able to start

learning to drive. This would make it easier for me to get around. "

This type of mobility scheme which is funded by the government allows most

people who receive disability living allowance, to get a car so that they can

park closer to where they need to be.

" I passed my college course before moving to Malaysia to work on an online game,

moving out at the age of seventeen and learning to look after myself. Whilst in

Malaysia, I got a blood clot in my leg that travelled into my lungs and gave me

breathing problems. A trip to the hospital meant that I was put on Warfarin, an

anticoagulant to thin my blood. This meant that I had to come home a couple of

weeks later. But, once I was back, I enrolled in a BTEC IT course and got enough

qualifications to enrol into university to study Games Computing. I also got a

part time job at Mc's. I was only able to do short, four hour shifts

taking money on the drive-through. I attempted longer shifts, which were still

very tiring but manageable.

The course was challenging but something I loved. The day of my graduation was

an exciting but terrifying experience. Walking up on stage in front of hundreds

of people whilst being filmed, saluting, then climbing back down was probably an

achievement in itself that managed to rival alongside getting my degree. "

Even though his disability played a huge part in affecting his childhood and

time at school, Sam did not let it bother him and he still doesn't. Once leaving

university, he almost immediately fell in love and married.

" The thought of having a family of my own returned hand in hand with thoughts of

my disability as there is a 50% chance my child will inherit my disability.

There are a couple of options which we are yet to consider; a natural pregnancy

where the baby is tested within the womb for CMT. However, abortion is not an

option for us. Then, there is Pre-implantation Genetic Diagnosis; fertilising

eggs outside of the human body, checking to see if they have the condition

before placing them into the body. Funding is available for just one cycle of

this, but the chances of it are not particularly high. We are currently

considering our options though. "

CMT doesn't have any foreseeable cure. The only realistic options are those

which help with day to day life; shoe inserts, specialised cutlery or utensils

and the disability allowance. Nonetheless, Sam wants to raise awareness that the

condition, although incurable, means that people can still lead a normal life.

" CMT is a huge part of my life and always will be. I know it will gradually

worsen as I get older, but life is about living each day to the full. Having the

condition doesn't bother me too much. I still accomplish the things in life I

love. In my spare time I work on games for the Xbox Live Indie Games section; a

career that does not require a great deal of movement. My career choice was

partially decided by my disability, but to be honest it is something I have

always wanted to do anyway.

An interesting aspect of it and one which will benefit future diagnosis is

taking part in studies and aiding junior doctors to become familiar with the

disorder. Hopefully one day they will find a cure.

Either way, it's simply something that is a part of me. "

For more information visit: http://www.cmt.org.uk/