Now we know I have Becker Muscular Dytrophy. A small amount of relief as you would expect having 6 years of thinking there was something wrong, now to be told there is something wrong. Lets just say it was a very, very small amount of relief mostly I was quite upset. With the information about this new condition being thin on the ground and well most of it going in one ear and going out the next. I was set for quite a few years of turmoil before coming to terms with the news.
I am not the only boy in my family, I also have two brothers who had to find out they also had this condition and a sister with a chance of being a carrier. There's a word you will find me using to describe Becker Muscular Dystrophy, that word is "condition". You would think with BMD being a muscle wasting disease, I would use the word disease. When you mention the word disease to the small of mind, one of the first things that comes to mind for them is "I wonder if I can catch it". Also using the initials MD causes confusion with the first question being "Is it like MS".
One of the first things to deal with is how to tell people you have this condition. Over the years I have discovered explaining how it effects you first ie "I suffer from a condition which effects the construction of my muscles". Going further into details the best you can usually promt's the person you are telling to ask "what is it called". You can then land them with the name they haven't heard before.. Becker Muscular Dystrophy.
The most important thing is do your research, in the early days armed with conflicting information I told people all sorts of facts about it sometimes really quite wrong. It was quite easy to paint the picture of doom and gloom when armed with the information on what the end result of suffering from the condition involves.
Once you are happy you have the facts and and deliver them in a clear way, you find people will become quite interested in the facts of how it all works. Now I could prattle on about the facts of it but I wont so have a search on the internet for the information. When I first found out information was all in books and in the minds of doctors but now its all over the net..
So google it will you
Monday 18 July 2011
First Post
Well here I am, another person who now has a blog. I created this blog account originally to become a follower of my wife Angie's sewing blog and my daughter Joanna's fashion blog to show my support. But now I find myself creating one too, after a read of a blog about a subject close to me. So a few things to get out of the way am a 32, married, have one daughter to a previous marriage, live in a little village just outside York, currently a kept man(better way of saying looking for work).
I suffer from Becker Muscular Dystrophy. Becker MD might not always be the only subject of the the posts on this blog but it will rear its head a lot. Oh in all that forgot to tell you my name well its Andrew to my family and the bank manager lol, Geord to my friends and in laws with the exeption of Angies Gran who is a great lady and who refuses to call me anything but Andrew. Geord comes from my first days at college when a tutor picked up on my north east twang(Middlesbrough) and decided to call me Geordie which I hated at first but it kind of stuck. I dropped the 'ie' once my accent almost disappeared also to stop the apparent offence it caused the odd person from Newcastle. Not to say that people from Newcastle are odd, its just there isnt to many of them in York.
So I will think of you as my friends and you can call me Geord pronounced "Jord" if your interested. Now am not sure where to start the story of my life with Becker, I could start where all story's start, which is the beginning. I feel starting before I even knew I had Beckers might better explain my reaction to the news of the discovery. So the first time I was thinking something is wrong here was when I was around 10 years old. During my childhood I was a avid tree climber and garden hopper which is a practice of running though the gardens of the front and rear of the houses in the council estate I spent most of my childhood in. Well during the summer holidays following my 10 birthday I noticed I had difficulty climbing the tree in a friends garden which was as high as his house. I had climbed this tree many times before and hated the fact one of my friends could climb it faster than me now.
The next time I noticed a problem was once I had started secondary school. Physical Education became and issue as running from one end of the field to the other gave me really bad leg cramps. A quick visit to the doctor dismissed this as growing pains, because of this I just pushed past the pains safe in the knowledge that to be in this much pain am set to be 8 feet tall( am 5"7'). So we know now they were not growing pains. I joined my school football team to avoid the track and field events, became a good midfield player. Now here is where the running becomes more of a problem so I find myself moved to defence and later to the goal keepers position manily due to the heavy tackles I was performing to save on running after the other players. The heavy tackles played heavy on my knees we will talk more on this later. So difficulty's at home caused my farther to kick me out onto the streets of Middlesbrough in my final year at secondary school. So I did what any hardened kid of the council estate of Middlesbrough would do and called my Mother to come and get me. My parents split when I was to young to remember and my Mum lived in York.
My mum of course came to the rescue who would of known all I had todo was ask for her help. I was collected at the phone box I spent the previous night sleeping in and transported to my new home. So here comes an event which highlights I have a problem. My step farther Ian who I now think of as my Farther needed some help.
The help needed was to lift out of the boot of a car his wide selection of tools, they appeared to all be in one box. I couldn't lift my end of the tool box. Now instead of dismissing this as me being difficult he raised the issue in an understanding way which at the time was rare. Understanding that is, with the fact I was a mildly rebellious child who was dragged up kicking and screaming and I wasn't the one doing the kicking. I might elaborate on that more later. So I now wasn't the only one who though they might be a problem.
Now onto the next thing, I joined in with the boys of the village in playing football being that I wasn't awful at the game. This caused my knee's to give me a lot of trouble and a visit to the doctors was needed.
Finally a doctor who could see that my knee trouble was due to the lack of muscle I had to support it. A referral to someone who knew quite a bit more about muscles than my GP was in order. Now this doctor took one look at my enlarged calfs and strangely the muscles in my hand and he knew right away what it could be. An appointment was made for a test what I can only describe as a world of pain. A open muscle biopsy was needed now hope your ready for some gory details. A open biopsy involves making a small cut in the skin and into the muscle, then a small piece of muscle is removed.
This procedure being rare at the time in my area no real setup was in place, so an old lady was kicked out of the bed in an all women's ward. Now am informed that the skin will be numbed a little and I might feel a slight tug. The numbing process had not taken effect, a quick choice was made to do it anyway. So with a 1cm cut in my leg the quack went fishing for some muscle and with a twist and a pull a small section came out. Now I did scream, thankfully no noise came out, however when looking to my mum who was to the side of me watching this gave me reassurance. Reassurance that it was in fact horrific due to her white face and horror stricken look.
The test was performed, results in and Ta Da!!! We then knew I had a condition called Becker Muscular Dystrophy.
I suffer from Becker Muscular Dystrophy. Becker MD might not always be the only subject of the the posts on this blog but it will rear its head a lot. Oh in all that forgot to tell you my name well its Andrew to my family and the bank manager lol, Geord to my friends and in laws with the exeption of Angies Gran who is a great lady and who refuses to call me anything but Andrew. Geord comes from my first days at college when a tutor picked up on my north east twang(Middlesbrough) and decided to call me Geordie which I hated at first but it kind of stuck. I dropped the 'ie' once my accent almost disappeared also to stop the apparent offence it caused the odd person from Newcastle. Not to say that people from Newcastle are odd, its just there isnt to many of them in York.
So I will think of you as my friends and you can call me Geord pronounced "Jord" if your interested. Now am not sure where to start the story of my life with Becker, I could start where all story's start, which is the beginning. I feel starting before I even knew I had Beckers might better explain my reaction to the news of the discovery. So the first time I was thinking something is wrong here was when I was around 10 years old. During my childhood I was a avid tree climber and garden hopper which is a practice of running though the gardens of the front and rear of the houses in the council estate I spent most of my childhood in. Well during the summer holidays following my 10 birthday I noticed I had difficulty climbing the tree in a friends garden which was as high as his house. I had climbed this tree many times before and hated the fact one of my friends could climb it faster than me now.
The next time I noticed a problem was once I had started secondary school. Physical Education became and issue as running from one end of the field to the other gave me really bad leg cramps. A quick visit to the doctor dismissed this as growing pains, because of this I just pushed past the pains safe in the knowledge that to be in this much pain am set to be 8 feet tall( am 5"7'). So we know now they were not growing pains. I joined my school football team to avoid the track and field events, became a good midfield player. Now here is where the running becomes more of a problem so I find myself moved to defence and later to the goal keepers position manily due to the heavy tackles I was performing to save on running after the other players. The heavy tackles played heavy on my knees we will talk more on this later. So difficulty's at home caused my farther to kick me out onto the streets of Middlesbrough in my final year at secondary school. So I did what any hardened kid of the council estate of Middlesbrough would do and called my Mother to come and get me. My parents split when I was to young to remember and my Mum lived in York.
My mum of course came to the rescue who would of known all I had todo was ask for her help. I was collected at the phone box I spent the previous night sleeping in and transported to my new home. So here comes an event which highlights I have a problem. My step farther Ian who I now think of as my Farther needed some help.
The help needed was to lift out of the boot of a car his wide selection of tools, they appeared to all be in one box. I couldn't lift my end of the tool box. Now instead of dismissing this as me being difficult he raised the issue in an understanding way which at the time was rare. Understanding that is, with the fact I was a mildly rebellious child who was dragged up kicking and screaming and I wasn't the one doing the kicking. I might elaborate on that more later. So I now wasn't the only one who though they might be a problem.
Now onto the next thing, I joined in with the boys of the village in playing football being that I wasn't awful at the game. This caused my knee's to give me a lot of trouble and a visit to the doctors was needed.
Finally a doctor who could see that my knee trouble was due to the lack of muscle I had to support it. A referral to someone who knew quite a bit more about muscles than my GP was in order. Now this doctor took one look at my enlarged calfs and strangely the muscles in my hand and he knew right away what it could be. An appointment was made for a test what I can only describe as a world of pain. A open muscle biopsy was needed now hope your ready for some gory details. A open biopsy involves making a small cut in the skin and into the muscle, then a small piece of muscle is removed.
This procedure being rare at the time in my area no real setup was in place, so an old lady was kicked out of the bed in an all women's ward. Now am informed that the skin will be numbed a little and I might feel a slight tug. The numbing process had not taken effect, a quick choice was made to do it anyway. So with a 1cm cut in my leg the quack went fishing for some muscle and with a twist and a pull a small section came out. Now I did scream, thankfully no noise came out, however when looking to my mum who was to the side of me watching this gave me reassurance. Reassurance that it was in fact horrific due to her white face and horror stricken look.
The test was performed, results in and Ta Da!!! We then knew I had a condition called Becker Muscular Dystrophy.
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