h2g2 The Hitchhiker's Guide to the Galaxy: Earth Edition

I was diognosed with Ducheane MD in 1977 age 9. I was always falling over at school and could not run and found it hard to stand up. I was pushed over but people by mistake or on purpose.

I went to a special school in Coventry called Exhall Grange in 1980 at age 12. I gradually got weaker and went into an electric wheelchair at age 15 in 1983.

I then went to Hereward College also in Coventry in 1986 to 1991 going onto Staffordshire University in Stoke on Trent from 1991 to 1994 and got a 2.1 in BA Hons Fine Art however fell out of my electric wheelchair and broke my left leg but the shock of that advanced my MD.

TO BE CONTINUED..........

part 2

I returned home to live with my parents in June 1994 until I left home to live in Aylesbury Buckinghamshire in a Residential Care Home on the 5th of April 1997 this is where I met my future wife. I had to leave there for various reasons and returned to Warwickshire on the 6th of March 1998 and had tempory accomodation at an old peoples home neat Stratford upon Avon. I was eventually offered a bugalow in Southam Warwickshire. My future wife and I moved in on the 2nd of June 1998

In December 1999 I got phmonia and was addmited to Warwick hospital but had a respitory arrest followed by two cardiac arrests and was in ITU on a ventilator for weeks. I was then transphered to Papworth Hospital in the February 2000 they got me off the ventilator and took out my traciotamy. The diognosed I also had Sleep Apnia and gave me a Nippy ventilator which I have to use every night. The events above advanced my MD a bit more. I was also rediognosed at Adambrookes Hospital Cambridge after a muscule biopsy with Becker MD


MORE TO FOLLOW......

part 3

I was married on the 6th of March 2000

In October 2001 my wife and I were involved in a car crash on the M40 prior to the accident I could shave myself, brush my own hair, sit forward in my wheelcair, I could get myself onto my PC, I could scratch / blow my own nose, I could feed myself, I could hold a mug or glass of drink, I could use a telephone unaided. I could use a urine bottle unaided. After the accident all the above I could not do.

Part 4

Basically I need full care 24 hours a day 7 days a week.

I could be sad about it but there is no point in that.

In January 2002 I had a chest infection and was addmited to Warwick Hospital again and had a respitory arrest and had to have an emergancy traciotamy which I still have to this day it is just in case I get a chest infection again as I can not physically cough up the secretions so use a suction machine when needed.

Thank you for sharing this with us, Lord Wolfden. It was a very enlightening and informative contribution.

Pleasure, if anyone wishes to ask any questions please feel free.

Will Locke AKA Lord Wolfden

I would like to ask how you have adapted to MD, for example any physical tricks you have developed, what aids have been useful... mechanical or electronic.

Thanks for sharing Wolfie!

Wolfie.

How do you use the computer now? Have things got any easier?

(Knowing Wolfie, i bet he has trained his to operate it "Oy! You there with the stripey fins, scroll down a bit!")

zdt

from me too . Thanks for telling your story. I'm interested too as to how you manage the computer.

Well the is research going on into MD and they have identified the defective gene and are looking for was to slow the muscule waisting down and maybe repair the damage but that is some way off. I dunno if it will benefit me in my lifetime if it can then great but not counting my chickens.

I use an old inkless pen in my left hand and type one key at a time using Caps Lock for capitals. It is a tad hard to do Shift key functions Shift ' = @ Shift # = ~ Shift / = ?. I drive the mouse with my right hand.

How usual or unusual is it for children to get MD?

I am amazed that you take the trouble to use capital letters & punctuation properly, here's me with fully functioning fingers & lazy bugger that i am; how often do i bother typing "I" instead of "i" & use "&" instead of "and"....

to you, Wolfie. some of your shorter posts make a bit more sense now, given the background.

zdt

Children are all effected by MD I had it all my life but did not show itself until I was 8 years old.

Muscular Dystrophy Information

http://www.muscular-dystrophy.org/about_us/index.html

The muscular dystrophies are a group of genetic disorders, which cause muscle weakness and/or wasting.

I have an electric Chiltern Ceiling Track Hoist over my bed.

My bed is electric too, feet, middle and back can be raised and the whole hight of the bed can be lowered of highered.

I have a Chiltern shower chair adapted to fit over the toilet below \/

I have a Closimat toilet that has a beday and hot air dryer it washes and and drys your bottom.

I have an electric front door operated from a key fob on my lap which is on a chain.

I have a Steeper Enviomental Control Unit I can turn on various lights, and plug sockets, talk on the door entry systum, turn on emergancy alarm.

Ho hum, the Mods are working overtime, wonder if we will ever find out what the last two postings said?

*sigh*

zdt

Please take this seriously if you can't find anything connstuctive to say please leave.

Terri only wanted to read your replies, Wolfie.

All of that must have cost a fortune, did you get some kind of benefit or grant or did you have to shell out?