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My personal story about growing up with Becker's from diagnosis to my thirties
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 10 years old and was diagnosed with Becker‘s MD. 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 myself remember at 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 last one to finish. As a child this was very frustrating for me, but I learned pretty fast that running was a major issue for me, you see as I got older when I would try and run my legs would just give out on me. This has happened to me at various times through out my life, and one of the times I remember most, was when I was a teenager, you see me and a few friends were running crossing 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 upsetting to me. So you can understand at an early age I sometimes had to learn the hard way that there were certain things I just couldn't do, and running was one of them.
With all the physical issue’s I was facing, 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, so here I was 10 years old getting ready to under go some testing to see what might be causing the physical issues I had been facing. So over a two day period I was put through 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, just to see how much of a challenge they were for me. But then the more serious an somewhat painful testing had to be completed, one such test involved doctors putting these very long needles into my calf muscles, to be honest what I remember was the pain involved with this test was just excruciating, I could not be more thankful when it was all over and done with! Now the very last test they needed to perform on me, was a muscle biopsy, this is where they removed a small piece of muscle tissue from my right arm. Once the surgery was all over and done with, all I was left with was four stitches in my right, I thought it was all very interesting what had happened to me over those two days, but definitely I was glad when my hospital say was all over with. Because for me life just went back to normal, back to hanging out with friend's, to me life was still very good and honestly I thought that it was pretty cool what I had gone through and I just wanted to show everyone my stitches. But maybe what I enjoyed most about the whole experience is that I got to miss a few days of school.
So soon after all of the testing had been completed my parents were given the testing results, and they were told that I was diagnosed with a Neuromuscular Disorder called Becker's Muscular Dystrophy. When it comes to Becker's it is just one out of many 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 even heart disease. So at this time in my life now I can't even imagine what my parents were feeling when they were told all of this, but to be honest at age 10 for me the Becker's really wasn't affecting my life too much, I was still able to walk long distances with no real problems, sure a few falls here an there but I accepted it, I was also able ride my bike, play with friends, climb stairs with minimal issues, as far as I was concerned I felt perfectly fine. The only times Becker’s became a real issue was the time when it came to running, so I didn’t really play much sports as a kid, and in school I was always exempted from gym class. You see for me the only times during my childhood I was frustrated or reminded that I was somewhat different was when it came to climbing fences or climbing tree’s, I just couldn’t do it. I just had to learn what my limitations were and to not go beyond that. You see most days I just kept a positive attitude no matter what happened, I really 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 live and enjoy life as much as you can, even through out all the challenges!
Truthfully sometimes life was pretty hard, there were times through out elementary school after being diagnosed with Becker's that I was teased and made fun of just because I walked different, I think it's crazy how little kids if they notice something different about you they feel like they have to point it out, for me the kids loved to make fun of the way I walked, they would also call me all sorts of names, which would eventually end up with me sitting in the principals office or in detention over recess, for standing up for myself. To be honest my days in elementary school at times were really hard, but thankfully once I entered High School and soon after the first year a lot of the name calling did stop, but maybe that’s because I always went home for lunch, and always just kept to myself during High School. Luckily I had a life outside of High School as I always attended a Church youth group weekly and that’s where all my friends were.
Then once I entered my late teens, I'd have to say my energy levels were very good, honestly life was pretty good, I would hang out with my friends, have lots of fun, the only difference for me is that this would all have to be done at my own pace. Honestly I’m just very thankful that I had very understanding friends at this point in my life. You see, the biggest thing you learn as a person with Becker’s Muscular Dystrophy is that when it comes to any physically demanding activity, it’s always best just to take it easy. And through out my teens I was able to have plenty of fun, things ranging from; play floor hockey before youth group, go karting to even spending a day a the local amusement park, these were things I was only able to do because I paced my self, and took breaks when I needed to. But I did learn on occasion that if I pushed myself too far physically, that it could result in slips and falls, and at times it could take me 2-3 days to fully recover, and most time’s I had no other option but to be ok with that, again I have to say it comes down to knowing your limits and not exceeding them. So you can see as a person living with Becker’s Muscular Dystrophy we can still enjoy our lives, and be involved in physical activities, we just need to live within our limits.
Now in my mid twenties, I am noticing that things are starting to change, but not majorly just gradually, physically now stairs are becoming a bit more of a problem, truthfully nowadays I just try to avoid them all together. Still life is pretty good, I am still walking with no major issue’s, I just have to take thing’s at my own pace, sure falls happen from time to time but I’ve learned to live with it, and now to keep fit and heart healthy I usually go for a walk. Now I do have to be careful to avoid uneven surfaces, as I find it is very easy for me to trip and fall these days, you see when I lose my footing it usually will result in a fall, that sometime end with some type of injury, so most time’s I like to keep my walks to short distances in order to avoid falls and muscle Fatigue. Lately I have been noticing how far a good nights sleep goes in helping with my energy levels, one thing I have learned is that sleep is VERY important when it comes to living with Becker's Muscular Dystrophy. I have also really noticed that when I don't get enough sleep at night that my chance of falling or injuring myself goes way up, so I always try and get at least 8 hours of un-interrupted sleep every night. Now as far as lifting goes, I have noticed that I just can not lift anything that is too heavy, it’s just not possible, that is why I have always needed assistance when lifting heavy objects, anything from a case of pop, a box of cat litter, grocery bags, or even a jug of milk, and sometime’s that can be very frustrating, so when I do need help I am so thankful to have people in my life who are willing to help me in these situations, from friends, family and even total strangers.
Now as I am reaching my early thirties there are things I am really starting to notice lately, things such as it has become a real challenge for me to get in and out of my car. Unfortunately I have a car that sits really low to the ground, and with the progression of the Becker's it now takes a lot more energy then it use to for me to be able to get up from a seated position. Honestly most days I wish I had a vehicle that was easier to get in and out of, one that in the future if need be could fit a mobility scooter. For me I wish I never purchased the current car I have and I really regret not purchasing a car that sits higher, but at that time I wasn't thinking about my future and living with a disability. Back when I purchased my current vehicle there wasn't many options out there, but now I see that some car companies are now offering some really good vehicles that might work for those of us with disabilities, vehicles like the Mazda 5 and the 2011 Chevrolet Equinox come to mind. The other area's where struggling to get up from a seated position affects me is when ever my wife and I go out in public, if we go to a restaurant, most times it is very hard for me to get up from the table. Also when ever we go out to a movie when it's finished I have to wait until the whole theatre is empty to avoid the embarrassment of people seeing me struggle just to get up from my seat and that is frustrating.
Currently as I enter my mid thirties I realize Becker's Muscular Dystrophy is now something I just can't ignore, sure things were hard over the last few years but I’ll admit it things are getting worse. Stairs are now a major issue, so these days I tend to just avoid them at any cost. Recently my wife and I ended up moving out of our two story home, into an apartment with no stairs to help reduce the risk of falls and injury. And over the last few years fatigue has become an major issue, I just can’t push myself like I use to, and recently I found out I have sleep apnea, this means I stop breathing from time to time through out the night. So now I sleep with something called a cpap machine which comes with a mask that blows air into my mouth to make sure I don't stop breathing. Thankfully this helps me get a good night's sleep now which really helps me have the energy to make it through the day.
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. It's seems these days my leg’s tend to give out more then ever, usually resulting in falls, so these days I like to take it slow. Unfortunately though a few months ago I slipped and fell on the wood floor in my apartment, my left knee hit the ground pretty hard, the pain excruciating. I could barley walk I really wrecked my knee, and over the next 6 weeks I had to use a cane, with out it I couldn't walk. Thankfully after 6 weeks of ice packs and elevating my knee it finally healed up and I no longer needed to use the cane. It was a real wake up call for me, I was lucky this time, next time I may not be so lucky, so now I wear slippers around the house all the time. And recently, I was referred by my doctor to a physio-therapist who is now teaching me some exercises I can do to help me maintain the strength in my legs, to help prevent me from falling in the future.
These days it’s all about conserving energy and living with-in my limitations, remaining positive in times when I am struggling with the challenges and weakness related to having Becker's. I fully understand that this disease will get worse over time, but I have to keep a positive attitude, not matter what, my goal is to try and enjoy life as much as possible hoping one day they find a cure!
If you haven't yet visited the My Becker's Story blog please go to: www.my-beckers-story.blogspot.com where you will find over 40 blog posts! Hope to get to know more people like myself living with Becker's to stay up to date with the My Becker's Story blog you can join the Facebook page at: http://www.facebook.com/pages/My-Beckers-Story/209348579098673
Brad |
