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So what is Becker’s Muscular Dystrophy?
Becker
Muscular Dystrophy also known as BMD is a rare genetic condition mainly affecting
males. It causes progressive muscle weakness and leads to difficulties in walking, running and standing for a
long period of time. Other issues include difficulty getting up from a low
seated position and eventually the inability to climb steps and stairs. Other issues may include
frequent falls and fatigue. The progression of BMD is mild in some
cases and more severe in others. Eventually men living with BMD will lose the
ability to walk and require the use of a wheelchair. This can happen anytime
between our 20's and 50's or in some cases even later in life. There is currently
no cure for any form of Muscular Dystrophy including BMD.
So where do I begin?
Well like every story, it’s always best to start at the beginning, when
my life was changed forever, and this was in the mid to late 80’s when I was just
10 years old and was first diagnosed with Becker's Muscular Dystrophy. You see
in the years before my diagnosis my parents had me join the local soccer team,
and it didn’t take long for them to notice that I was having some issues
keeping up with other children my age. I was struggling, having issues running
from one end of the field to the other; I just could not keep up. I even
remember a time once during gym class when we had to run from one end of the
gym and back, I really hated it because every time we had to do it I was
always the one finishing last. As a child this was very frustrating for me, it
really didn’t take me that long to learn that running was something that was
going to be difficult for me. You see as I grew older whenever I would try and
run my legs would just give out on me. This has happened to me at various times
throughout my life and one of the times I remember most, was when I was a
teenager. It was when I joined my friends in running across a busy street and I
was the only one to fall in front of oncoming traffic. Thankfully, I got up in
time but this was very frustrating to me. So you can see at an early age I
sometimes had to learn the hard way that there were certain things I could and
couldn't do, and running was one of them.
With all the physical
issue’s I was facing at just 10 years old my parents
eventually took me to our
family Doctor who seemed to have an idea about what was going on. He told my
parents that he had an idea of what it could be and shortly after that I was
sent to a local children’s hospital to undergo some testing to see what could be
the cause of all the physical issues that I had been facing. The testing took
place over a two day period and included various tests, ranging from simple
things such as the doctors watching me walk from one end of a hall and back, to
even having me climb some stairs - simply to see how much of a challenge they
were for me. Then the more serious and somewhat painful testing had to be
completed. One such test involved doctors putting long needles into my calf
muscles - to be honest what I remember most was the pain that which could only
be described as excruciating. I couldn’t have been happier when this test was
finally completed. The very last test they needed to perform on me involved
surgery in the form of a muscle biopsy. This is where they removed a small
piece of muscle tissue from my right arm. Once the surgery was completed all
that remained was four stitches in my right arm. Being 10 years old at the time
the whole experience was very interesting to me. It sure was a long two days
and I will admit I was definitely glad when my hospital say came to an end. After
this life just went back to normal, it was back to hanging out with friends and
doing the things most kids do. To be honest life was still good and honestly I
thought that the entire experience was pretty cool. Plus I was very popular
when I returned to school as everyone just wanted to see my stitches. Thinking
back I really believe what I enjoyed the most was the fact that I got to miss a
couple days of school.
Eventually the results of
my muscle biopsy came in and it was at that point when my parents were given
the news that I had been diagnosed with a neuromuscular
disorder known as Becker's Muscular Dystrophy. When it comes to Becker's it is
just one out of many different forms of Muscular Dystrophy one can be diagnosed
with. As far as Becker's is concerned it affects the body in many ways this can
range from, muscle weakness, difficulty running, progressive difficulty
walking, frequent falls and eventually the use of a wheelchair. So at this time
in my life now I can't even imagine what my parents would have felt like when
they were given the news. Ask any parent whose child has been diagnosed with
any condition and I am sure they would tell you it’s quite devastating. My parents
were even told I would be in a wheelchair by mid-twenties and I know they did
their best to stay strong for me. Thankfully they didn’t focus too much on my
diagnosis, sure they tried to learn as much as they could but they still
allowed me to be a child.
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To be honest at the age 10 the diagnosis of Becker Muscular Dystrophy had a minor impact on my life. I was still able to walk long distances with no real problems, sure a few slips and falls here and there but I just accepted it. I would just dust myself off get back up and keep going. I was even able to still ride my bike, play with my friends, climb stairs with minimal issues and as far as I was concerned I felt perfectly fine. The only time Becker’s Muscular Dystrophy really affected me was when it came to running - so as a child I really didn’t join in playing that many sports. Thankfully when I did join in my friends would make adjustments to the game so I could still play – many times when playing baseball someone would simply run for me. When it came to school and gym class I am happy to say that when needed - I was exempt from having to take part in any of the physically demanding activities. The only time during my childhood when I was frustrated or reminded that I was somewhat different was when it came to climbing fences or climbing tree’s, two things I just couldn’t do it. Eventually I learned to accept the fact that there were just certain things I would struggle with physically. A large portion of my childhood was spent learning what my limitations were and doing my best to not go beyond that. I am happy to say that most days I would do my best to keep a positive attitude about things - no matter what happened. I have always felt like there's really nothing wrong with being different, and that it's just better to try and accept the fact that you have this, and to try and enjoy life as much as possible even throughout all the challenges!
When it comes to living
with Becker’s Muscular Dystrophy at times throughout my childhood I did face a
few challenges. One of the most difficult times in my life as a child came in
school when other children would bully and pick on me. You see having BMD
affected my ability to participate in gym class and other activities around
school, unfortunately once the other kids noticed this they just wouldn’t leave
me alone. The only positive that ever came out of this experience is the fact
that I now know what it feels like to be picked on and teased - which has resulted
in me always being kind and friendly to everyone I meet. I actually made the
decision years ago to never talk behind someone back or call anyone names
simple because they are different or have other views than me. After all no one
deserves to be treated this way for any reason. Thankfully when I reached high
school after the first two years a lot of the name calling did stop. I believe
the fact that I kept to myself and went home for lunch everyday played a role
in this. To be honest I didn’t really have any friends at high school. It was
actually a pretty lonely place but luckily I did have a life outside of high
school as I attended a church that had a youth group which I would go to each
and every week. This was where all my friends were, the only people I knew who
accepted me for who I am and didn’t focus on my limitations. I would even play
floor hockey before youth group they just let me play goalie - this helped to
make me feel like I was included. This really helped me escape the stress and
frustration that came along with being high school.
As I entered my teens I'd have to say my energy levels were still pretty good,
I would hang out with my friends almost every day, the only difference for me
is that this would all have to be done at my own pace. Honestly I am very
thankful that I had a few very understanding friends especially at this point
in my life. You see the biggest thing I have learned living with Becker’s
Muscular Dystrophy is that when it comes to any physically demanding activity that
it is always best for us to just take it easy. Throughout my teens I was still able
to have plenty of fun, things ranging from; play floor hockey before youth
group, go kart racing to even
spending a day at the local amusement park. These are just a few of the things that
I was able to do simply because I paced myself and took small breaks when I needed to. Sometimes I
did learn the hard way that if I pushed myself too far physically that this
could increase the likelihood of a slip or fall. This was due to fatigue and
whenever this happened it would usually take about 2 or 3 days for my energy
levels to return back to normal. I just learned to accept this and it also
taught me to that I need to stick within my limitations and do my best to not
exceed them. So you can see as a person living with Becker’s Muscular Dystrophy
we can still enjoy our lives and be involved in many physical activities, we
just need to live within our limits.
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Now as I entered my early thirties there are a few things I am starting
to notice related to the progression of Becker’s Muscular Dystrophy. It recently
has become more of a challenge to stand up from a low position which is causing
a bit of an issue whenever I have to get up from a chair. The place this has
become a real challenge for me is with my car, since the car I owned at this
point sits really low to the ground. It seems at this point in my progression
it now takes a lot more energy than it used to for me to be able to get up from
a low seated position. Thankfully I do have an accessible parking permit which
allows me to open my car door all as I need that space to be able to push off my
car to help myself stand up. Honestly most days I wish I had a vehicle that was
easier to get in and out of - one that could be easily modified in the future if
I need to start using a mobility scooter. The only mistake I made when
purchasing my current vehicle was not taking accessibility or my condition into
consideration. Unfortunately I decided to choose a car based on quality and
reliability and that is why I purchased a Toyota Tercel – only problem is it
sits very low to the ground. Instead I should have focused on cars that sit
much higher, vehicles such as a Toyota Sienna, Mazda 5 or maybe even a small
sized SUV. My biggest piece of advice to anyone living with Becker’s Muscular
Dystrophy is to focus your search on a vehicle that suit your future needs,
mainly one that is easy to get in and out of. Other areas I also face a bit of
difficulty getting up is when I am out at a local restaurant it’s one of the
reasons why I need to avoid sitting in booth’s. Lately movie theatres have
become a challenge as well so I tend to sit closer to the front to avoid having
to climb stairs. I have also learned to wait until the entire theatre is empty before
getting up to leave. This way I can avoid the large crowds and then I am able
to use as much room as I need to get up. One of the most valuable lessons I
have learned over the years is that we need to do our best to adapt to every
situation. This usually results in those of us with Becker’s Muscular Dystrophy
being very creative people.
Currently as I enter my mid-thirties I have
noticed that a few things are starting to change. At this stage of my progression
my muscles have weakened so much that climbing stairs has become next to
impossible - especially if there isn’t a railing. Lately it also seems I am
having issues with fatigue, this is a result of not being able to get a proper
night’s sleep. I recently brought this to my doctor attention so he sent me to
have a sleep study done at a local clinic, talk about a very interesting
experience. After this they discovered that I had sleep apnea so now I use
something known as a CPAP machine. Thankfully this helps me get a good night's
sleep which now really helps to provide me with the energy I need to make it
through the day. Now as far as the walking is concerned at times I would have
to say that lately it can be a bit of a challenge avoiding slips and falls - especially
when I have pushed myself too far physically. There have even been a few times
when my legs have given out so now I tend to just take it easy. These days
it’s all about conserving energy and living with-in my limitations, remaining
positive in times when I might be struggling with a few of the challenges that
come along with having Becker’s Muscular Dystrophy. In the end no matter what my goal will always be to try
and enjoy life as much as possible with the hope that one day they find a cure!
Related Posts:
My Childhood with Becker's Muscular Dystrophy ,
My Childhood with Muscular Dystrophy: School & Gym Class ,
Growing up with Muscular Dystrophy: The High School years ,
Living with BMD: Dealing with falls & size of calf muscles ,
Life after being diagnosed with Becker's Muscular Dystrophy &
Growing up with Becker’s Muscular Dystrophy as a teenager
My Childhood with Becker's Muscular Dystrophy ,
My Childhood with Muscular Dystrophy: School & Gym Class ,
Growing up with Muscular Dystrophy: The High School years ,
Living with BMD: Dealing with falls & size of calf muscles ,
Life after being diagnosed with Becker's Muscular Dystrophy &
Growing up with Becker’s Muscular Dystrophy as a teenager
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