Brad's Story of growing up with Becker Muscular Dystrophy

Welcome to My Becker's Story where I share my personal story of growing up with Becker Muscular Dystrophy. My story represents the truth of my life and living with a muscle-wasting disorder and I hope to take what I have been through in life and somehow use it to help others going through a similar situation. After all, I truly believe we can all learn a lot from each other's stories.

So what is Becker 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 Becker’s.

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. 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, especially learning at such a young age that running was something that was going to be difficult for me. And this is just the beginning of My Becker’s Story.

 What led to my diagnosis of Becker's Muscular Dystrophy

With all the physical issues 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. Shortly after this 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, which could only be described as excruciating. I couldn’t have been happier when this test was finally completed. Then 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 complete all that remained were 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 stay 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.

The results of my muscle biopsy come in

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 Muscular Dystrophy. When it comes to Becker 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 this 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 enjoy my childhood.

A look at My Childhood with Becker Muscular Dystrophy

When I was first diagnosed with Becker’s Muscular Dystrophy at the age of 10 my life really didn’t change that much. The only thing I really noticed is that I just couldn’t keep up with other children my age, but it really didn’t bother me that much. Even as a child most of the time I kept a positive attitude about things, sure I had trouble running which limited my ability to participate in team sports, I just didn’t let it get to me. After all I was still able to walk, ride my bike, play with my friends and even climb stairs with minimal issues, so as far as I was concerned I felt perfectly fine. Now even though I still faced issues with my legs giving out on me, whenever I suffered a slip or fall I just dusted myself off, got back up and kept on going.

The only time Becker’s Muscular Dystrophy really affected me was when it came to running - which at the time meant I couldn’t participate in team sports - especially when it came to school and gym class. Most times this resulted in me having to sit on the sidelines watching the other children play. I know it’s sad to say but as a child being left out during school activities was normal to me. Sure it wasn’t fun but inclusion for people of all abilities didn’t exist back in the 80’s - it wasn’t even on the schools radar. But thankfully my childhood and experience with team sports wasn’t all bad, I actually remember a time before my diagnosis when I played on one of my local children’s soccer teams. At this point I already noticed the issue’s I was having keeping up, long story short I came up with the strategy of hanging around the opposing team’s net waiting for the right moment when the ball might come my way. At one point this actually paid off when one of my teammates kicked the ball my way and I scored my one and only goal. A real highlight for me as a child but eventually I had to stop playing due to my inability to run.

Thankfully as a child I had friend’s outside of school who understood my limitations who were willing to make adjustments to games so I could still play – this was truly amazing as I was able to feel like a part of a team. For example, whenever we would play baseball a friend of mine would end up running for me, which to this day still means a lot to me. Now when it came to school and participating in gym class it was never easy but eventually after my mom spoke with the school - when needed I was exempt from having to take part in any of the physically demanding activities. This was great but still there were times during my childhood which led to a bit of frustration especially when all my friends started jumping over fences and climbing trees. It was tough at times to accept but there were many points throughout my childhood when I had no choice but to accept the fact that there were just certain things I couldn't do. This meant that 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.

A look at what I enjoyed most about my Childhood

Thinking back even though I faced a few challenges related to living with Becker’s Muscular Dystrophy for some reason it never really bothered me. I simply just went on living my life and like most children who grew up in the 80’s I really enjoyed riding my bike and most times was able to have just as much fun as the other kids in my neighborhood.

The main thing I enjoyed most about my childhood was riding my bike as it gave me my first taste of freedom. Though it did get me in trouble a few times especially when my brother and I would venture out further than we should. One time we rode our bikes a far distance away from home resulting in us getting into trouble - it was from that point on I was limited to just riding my bike in my local neighborhood.

Thankfully at this in my life I didn’t face much difficulty related to Becker Muscular Dystrophy. Actually when I was growing up it was hard for my parents to keep me inside. Most days I wouldn’t return home until the street lights came on. Then in the morning once the sun would come out my first priority was to run outside to ride my bike. It didn’t matter if I was joined by my friends or not it was all about having fun. That was until the first time I crashed my bike after hitting some loose gravel. At the time I was riding the black and yellow BMX pro thunder sports bike you see pictured above. When this happened I left my bike behind and ran home crying with a small stone lodged in my forehead - it was at that point I realized I had to be a little more careful. But I didn’t allow this to keep me from riding the same way as a child - I didn’t allow a diagnosis of Becker’s Muscular Dystrophy to slow me down. Now I did end up with a few stitches but like anything in life you learn your lesson and keep on living your life. That is why I continued riding my bike and even though I struggled climbing even the smallest hill there was really nothing I could do about it, so I would end up just pushing my bike instead. I just had to learn how to adjust.

There’s no doubt that I enjoyed growing up in the 80’s as there was so much to keep a child occupied. Things such as the very popular AFX slot car tracks and even something known as the Rubik's cube. Another really popular thing for me to do as a child was riding my bike to the local convenience store to buy a package of O-Pee-Chee brand hockey cards, which came with a pink stick of bubble gum inside. At the time I believe I was more interested in the bubble gum than collecting hockey cards. Rather than keeping them in pristine condition at the time, hockey cards were used to play games, including one where we would line them up in a row against the wall and throw the remaining cards trying to knock them over. We would even put them between our bicycle spokes all in an effort to make them sound a bit like a motorbike. Obviously we ended up damaging what turned out to be some of today’s most sought after and valuable collector cards. Being children I am guessing at the time we simply didn’t know any better.

Thankfully my brother kept his Wayne Gretzky Rookie card out of harm’s way and luckily still has it today. As you can see my childhood was spent focused on having fun and this resulted in taking my focus off the fact that I had Muscular Dystrophy. Sure I face a few challenges along the way but at this point in my progression it didn’t end up ruining my childhood.

The most challenging part of my childhood: Dealing with Bullies

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 Muscular Dystrophy 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.

Unfortunately, once other children started to notice that there's something different about me they felt the need to point it out. The first they would make fun of is the way I walked calling me all sorts of names, even trying to push me to the ground. It certainly wasn’t a fun situation having all my class-mates joining together in calling me names. This all being done to belittle me and make me feel like an outcast. Eventually all this bullying led to me becoming self-conscious about the way I walked and looked. This led to many days when I was afraid to go to school which in some way may have affected my grades. I am sure we can all agree that no child should have to spend their days like I did being stressed out and worried about being picked on at school. In my case the bullying wasn’t just reserved to recess and gym class but also took place during class, the bus ride to and from school and whenever I had to walk home.

Eventually All the Bullying started taking its toll

As a child it all began to wear on me since it was guaranteed that five days out of the school week my class-mates were all going to make fun of me. I guess you can understand when I say that going to school as a child was my least favorite thing to do. This resulted in me on many occasions pretending I was feeling sick all in an effort to miss a couple days of school. I actually did this quite frequently simply to avoid all the bullied. But after a few days it was back to school and what I considered to be a battle ground. It got so bad that one time after recess when the bell rang I just stayed outside hiding behind one of the portables feeling as if I was worthless. It truly was more difficult than dealing with my diagnosis of Becker Muscular Dystrophy.

As most people know these days bullying isn’t a nice thing to go through and the effects on some can be tragic. We all know what can happen and it also ends up having a negative impact on a students ability to learn. Now there were times I chose to fight back but this never ended well as all too often this led to trips to the principal's office or one of my class-mates wanting to fight me after school. So you can see that fighting back isn’t always a good idea as it would end up making things worse. Even when teachers found out about the bullying they really did nothing as many had the attitude that this was just kids being kids. I actually once had a teacher tell me; “The only reason they pick on you is because you react to it“ going on to tell me to just ignore the insults. Thinking back this teacher should have done more when I told him that other students were bullying me. Unfortunately, the bullying continued throughout elementary school but going through this taught me the importance of being kind to others. If anything, being a victim of bullying even as a young child I knew that no one deserves to be treated poorly because they are somewhat different or have a physical disability.

The Issues I faced with Stairs & being Bullied in High School

Now, when I found myself in high school, I faced a few challenges related to living with Becker’s Muscular Dystrophy. The first was having to deal with climbing stairs, and over the next four years this became a major part of my daily routine. You see, many of my classes took place on the second floor so there was no way for me to avoid using the stairs. Thankfully in my teens climbing stairs was still possible, even though it was a pretty hard thing for me to do. The worst thing about climbing stairs in high school was the fact that I went up them very slowly, usually resulting in a long line of other students waiting for me to make it up the stairs. Eventually, I had to become really creative when it came to dealing with stairs at school. The first thing I started doing was trying my best to get to the stairs before everyone else, that way I could avoid the embarrassing task of climbing stairs in front of the other students. Now eventually I got lucky in finding the one set of stairs at school that hardly anyone used. This went a long way in allowing me to take my time going up and down stairs without getting in anyone’s way - something that also helped me survive four years of climbing stairs at high school.

Yet Again Being Bullying Enters the Picture

Unfortunately, as I entered high school bullying remained a major issue for me - something I hoped would end by the time I reached high school, but that wasn’t the case. Due to a lack of friends at school I guess this ended up making me an easy target for other students. But by this point I had already become accustomed to being bullied. Sadly enough the bullying in high school seems to get worse, even leading up to a time when a few kids would spit on me during class. Thinking back, I can’t believe I put up with that kind of treatment - all I know is that if it happened today it would be a different story. Sadly, not being able to fight back physically meant I just had to sit there and take it.

Thankfully there were a few moments when I could fight back without getting physical. I actually remember a time when my English teacher wanted us to complete group projects. Long story short, I was put into a group and they expressed disappointment with me being a part of their group. It was at this point I decided that I was going to do my own project separate from what they were doing. When it came time to hand in my project I received the highest mark in the class. My teacher even asked if he could keep my work to be used as an example in his other classes. In the end, I achieved my goal of making them regret not including me in their group. Sure a small victory but it felt great.

Thankfully after my first two years of high school a lot of the bullying came to an end. I believe the fact that I kept to myself and went home for lunch everyday played a major role in this - or maybe a few kids just grew up. Eventually after four years of high school the day came when I graduated leaving all the bullying and difficulties climbing stairs behind. Sure it wasn’t fun at the time but I survived and sometimes that’s all we have to do and one way to look at high school is that one day it will be over and it’s at that point when life truly begins.

My late teens and living with Becker Muscular Dystrophy

As I entered my late 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; playing 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. Now, sometimes I did learn the hard way that if I pushed myself too far physically that it would 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 that I need to stick within my limitations and do my best to not exceed them. So you can see even as a teen living with Becker’s Muscular Dystrophy if I paced myself I was still able to join my friends and enjoy life.

Thankfully I was still able to have a lot of fun in my teens

Now sure when it comes to living with Becker’s Muscular Dystrophy in your teens at times it can be quite challenging. There were many times when I faced some major obstacles in my teens but I didn’t allow them to limit my ability to have fun. In all honesty, outside of school growing up life was pretty good, and even though I faced difficulties in keeping up with my friends but in my opinion I grew up like any other teen. Sure there were times when I would push myself physically but always kept within my limitations and never to the point of exhaustion. Looking back I would have to say at times in my life I have been able to do some pretty amazing things, even some that surprised me. You see at times what helped me through the difficult moments in my teens was writing lyrics for songs I hoped one day to record. Eventually this led to an opportunity to perform in front of my church youth group. Surprisingly to me I hated speaking in front of the class in school yet I got myself in a situation that put me up on stage and yes I was very nervous. Thankfully everything went okay as it actually led to even more performances but I had to keep them short to avoid facing any major issues related to Becker Muscular Dystrophy.

Now to be totally honest at times throughout my entire teens I wanted to ignore the fact that I had Becker Muscular Dystrophy. Many times I simply tried my best to hide the fact that I struggled physically. When you’re much younger this is easy to do but when I reached my late teens into my early twenties that’s when things started to change.

My twenties living with Becker Muscular Dystrophy

When I reached my early twenties, I did notice that things were starting to change not majorly but gradually. Physically stairs began becoming a bit more of a problem so I would try my best to avoid them all together. Still life was pretty good and I was able to walk with no major issues. Again I knew that it was always best to take things at my own pace – sure a slip or fall would happen from time to time but I wouldn’t dwell on it. It really helped to teach me that I needed to be careful and to avoid walking on uneven surfaces. But even that at times isn’t enough due to the fact that my legs at this point could give out without any notice and when that happens the place you would find me is on the ground. Sometime this even happens when I am walking on flat surfaces so in my twenties I already knew I had to be prepared for anything – this is when I had to learn the proper way to fall. I would compare it to a stunt man who can fall without sustaining an injury. Sure I wasn’t able to completely avoid injury from falls but thankfully when they did happen it only resulted in a few bruises and not any broken bones.

At this point in my early twenties I always tried to be careful and did this by only walking short distances all in an effort to avoid falls and muscle fatigue. It was at this time I also started noticing how far a good night’s sleep goes in helping with my energy level. If there is one thing I have learned is that sleep is very important when it comes to living with Becker's or any other form of Muscular Dystrophy. So I started doing my best to get at least 8 hours or more of un-interrupted sleep every single night. This seemed to help a lot but still things were changing as I started noticing how hard it was becoming to lift or carry anything that was too heavy for me. Things many people can carry with ease such as a jug of milk or even a case of water. This meant in many situations my friends or family would be the ones carrying pretty much everything for me. It was at this point in my twenties when I slowly became more open to asking people for assistance. It was also great knowing that I had a few people I could count on to help me out.

My early thirties living with Becker Muscular Dystrophy

As I entered my early thirties I started to notice things changing as a result of the progression of Becker Muscular Dystrophy. Now things were still good but my legs were getting weaker causing major issues when it came time to get up from a chair. I started needing something to push off of to aid me in being able to get back up. It actually started causing issues whenever I had to drive anywhere as it was becoming increasingly difficult to get out of my car. Now one thing I was thankful for is my accessible parking permit which allows me to park in spaces where I can open my car door all the way. After all I was starting to need as much room as possible just to climb out of my car. But still all the effort I had to put into getting out was wearing on me physically. This is when I knew that eventually an upgrade to an SUV in the next few years would become a real necessity.

Other areas my weak legs were causing difficulties were at local restaurants especially whenever we would sit in a booth it was next to impossible for me to get up. It’s the one reason I do my best to avoid booth’s all together. You see it was in my thirties when I had to start making some changes and do my best to not put myself in a bad situation. As my legs were getting weaker I simply had to learn to adapt and at times become very creative. Since I enjoy going to the movies that means a trip or two to the local movie theatre, but lately it has become a bit more challenging. Now I tend to sit closer to the front of the theatre just to avoid having to climb a lot of steps to get to my seat. At times I arrive early to avoid the big crowds and I have also learned that when a movie is over to just wait until the entire theatre is empty before getting up to leave. This enables me to use as much room as I need to get back up. You see 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. Maybe this is why so many people living with physical limitations tend to be very creative people.

My mid-thirties & stairs quickly becoming my worst enemy

Now as I entered 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. So I am sure you can understand why I have become a little apprehensive about using stairs. At this point even a small step even off of a curb can result in a fall. It’s the main reason why I always try to avoid having to use any type of stairs. It has even affected my ability to climb the steps at the local movie theatre. Maybe the worst effect lately is that it has limited my ability to visit family and friends - especially when dealing with stairs that have no railing to support me. In recent years I have had to become very creative in dealing with stairs especially in times when I have no other choice but to use them. At times sitting down to the floor and going down the stairs seated one step at a time on my rear till I reach the point when I can turn around and crawl back up to my feet. Embarrassing in some ways but by this point in my progression I have stopped caring what people think. After all, I have no choice but to live my life to the best of my ability.

A life changing moment leads to me sharing my story

As I enter my mid-thirties I also start dealing with a lot of fatigue resulting from me not being able to get a proper night’s sleep which starts to negatively affect me at work. Also at the time I am suffering from a work-related injury in the form of tendinitis which also isn’t helping things at work. Eventually this all leads to me being let go after having my injury blamed on the fact that I had Muscular Dystrophy. Even after losing my job I couldn’t get a good night’s sleep. So I brought this to my doctor's attention and he sent me to have a sleep study done at a local clinic, talk about a very interesting experience. After this is when they discovered that I had sleep apnea and ever since then I have been using 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 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 even in times when I might be struggling with a few of the challenges that come along with having Becker Muscular Dystrophy.

The Story Continues into my 40's So Please Click Here to continue reading more of My Becker's Story!