Monday, January 4, 2010

Living with Becker Muscular Dystrophy: Brad's Story

PLEASE visit the ALL-NEW My Beckers Story blog at
You can also use tabs found at the top of this blog page!

Includes new version of Brad's story available by (CLICKING HERE)

The My Becker’s Story blog has only one purpose, and that is to help make people aware of the issues those of us living with Becker’s Muscular Dystrophy face. My Story represents the truth of my life and living with BMD, my struggles and concerns when it comes to living with a physical disability. I truly hope that sharing my story will somehow help others living with Becker’s Muscular Dystrophy, as well as their families and friends. The goal is to take what I have been through in my life and somehow use it to help those going through a similar situation. It’s also about raising awareness about Muscular Dystrophy a rare genetic disorder that is sometimes confused with Multiple Sclerosis. At times that can be very frustrating, and still to this day there are people out there who still think I have MS when I do not. Actually it seems like all I have been doing over the last few years is constantly telling people I don't have Multiple Sclerosis. So I started the My Becker's Story blog to raise awareness, to help give people a better understanding of what it is like living with Becker’s Muscular Dystrophy.

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.



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.

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 slip and falls 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 can give out without any notice and when that happens the place you will 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 progression 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 starting noticing how far a good night’s sleep goes in helping with my energy levels. If there is one thing I have learned is that sleep is very important when it comes to living with Becker's Muscular Dystrophy. So now I always try and get at least 8 hours or more of un-interrupted sleep every single night. Now as far as lifting goes I started to notice that I am unable to carry or lift anything that is too heavy for me, it’s just not possible. This means most times I am in need of assistance when it comes to lifting or carrying heavy objects. This can range from a case of pop, a container of cat litter, heavy grocery bags and even a jug of milk. Some time’s this can be a little frustrating, so when I do need help I so very thankful that I have a few people in my life who are willing to help me in these situations - mainly my wife, a few friends, even family and sometimes from total strangers.
  
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!

Click here to visit the ALL-NEW My Beckers Story blog.

Join My Beckers Story on Facebook
& on Instagram @MyBeckersStory