Monday, January 4, 2010

Living with Becker's Muscular Dystrophy: Brad Miller's Story

Brad Miller - Author of the My Becker's Story blog
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!

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  1. Wow....It's just so similar to my BMD story its remarkable to read. Although I am about 10 years behind in age, my symptoms are almost the same. We recently installed a chair lift on the stairs and it has been so much easier for me. The one problem I hate is when you go to an escalator to go up and its out of order and you have to back track to the elevator. I still find my self reluctant to use elevators but recently on a trip to Disney land I learned that I just have to accept it. I am almost ready for a wheelchair but am holding out as long as possible.

    1. it's really strange i don't suffer from falling over or tripping up. I was about the same age when i was diagnosed with BMD. However it was due to blood and muscle enzymes in my urine that led to the diagnosis. I am 26 now and in all honesty i only really have an issue with stamina. When i was younger i would push myself to just before my pain threshold in the hope that i would have a longer lifespan and greater stamina. In honesty it has worked and most don't believe me when i say i have a disability. In actual fact i managed to run for the bus the other day, i have found i recover by eating lots of food and if possible i always carry a sugary drink to help me when i need it. I feel so lucky after what i have read. I wish you all the very best.

  2. It's amazing to hear that there are others facing the same struggle, and that were not alone in this. Our stories go a long way in letting people know what having BMD is all about. I to struggle with stairs a lot, ok I'll be honest I hate stairs, so recently I moved into an apartment building so I wouldn't have to deal with the issue of climbing stairs. My only struggle now is getting to my car walking thru ice an snow. I'm just like you when it comes to the wheelchair issue, I too will hold out as long as possible. Hope your keeping well, and thanks for stopping by to read the blog.

  3. Hi, my son has BMD. he is now 10 ys old. he started showing symptoms at age 4. He takes a while when walking, cannot do stairs unless with railing and then he has to kind of lean sideways to pull himself up. He has large calves too. He loves video games. His has had emotional issues with his diagnosis but he has come along way and is a happy little boy again. We used to have a Honda Civic and he just could not get out any more so we purchased a Ford Flex. It is a crossover and he just has to slide into the seat and then getting out he just puts his feet out and can almost touch the ground. Best car we think. he has ridden in minivans but they are too low and hard to get in and out of too. It is nice to hear about young men out there who are in their 30's. The doctors have told us BMD can live up to their 60's. I pray so, he can be here that long and hopefully with being able to have a somewhat normal life. I am worried about middle school, I hope he does not get teased. I pray they find a cure soon for all of the men and boys out there. My son says he will grow up and become a scientist and find a cure. I can see him as a scientist but I would rather they find the cure before then.

  4. smartscribe thank you so much for stopping by the my beckers story blog, I hope you and your son are doing well. I fully understand the issue's your son is facing, for me just like him I loved playing video games, it helped take my mind off the issue's I was facing, it was hard at times for me, but there were things in my life that helped me get through hard times, my family was great, and it seems to me your son has a really great mother. As you know the support of great people help us get through hard times. Where I live Muscular Dystrophy Canada has many great supports available to everyone living with Muscular Dystrophy. I registered with them just last year. For me I have been able to live a somewhat normal life, I just live with-in my abilities, and tend to focus on the things I can do. For me what helped me growing up was that I had many hobbies, from collecting baseball and hockey cards, to collecting car magazines and I even wrote lyrics for songs I use to perform locally. For me hobbies went a long way in taking my mind off my struggles. I really hope the information you find here on my beckers story is helpful. It's great to hear your son want to become a scientist, he gives all of us hope for the future. I'm glad you love your Ford Flex, and I am really glad your son finds it easier to get in and out of. I hope one day to be able to get a better more suitable vehicle for myself, I now know how important it really is. And I am happy you were able to do that for your son. I too really hope to see a major break through in near future and hope to see a cure for Muscular Dystrophy very soon. Thank you again for stopping by and leaving a comment, I wish you and your son a very Happy New Year!

  5. I have BMD and your story parallels mine almost exactly. I'm a few years older in my late 30's. I to was exempt from P.E. in school, I took art and music classes instead. I to was made fun of a great deal, but being from a small country school that did not stop until I graduated. I also kept to myself a good bit in high school, hung out in the art room most of the time painting. I was also involved in church youth groups a good bit.

    As I got out of school and entered my 20's I had some great friends that would help me when I would fall. We'd go camping a good bit, we played music together etc.

    As I progressed through my 20's it got harder for me to get up from sitting down, getting out of cars, etc. I got a pickup truck and drove it for awhile. I fell often, and the falls kept happening more and more. One day I was thinking, you know, I'm gonna fall and break something and possibly be in bed for a long time to recover. I purchased a scooter and used it for long distances. I didn't need it much around my home, I still stood for showers, washed dishes, clothes etc.

    Then I started losing strength in my spine, and when I would walk my back would pinch a nerve and it just got to where I would hurt all the time, my back, hips, knees, etc. One night after a long hot shower standing up, I just made up my mind "this time when I sit down, there's no more getting back up." I called my wife into the bathroom and told her this would be the last time she saw me standing, she gave me a hug, I sat down, and that was 9 years ago, I was 29 years old.

    Life has been much better without the worry of falling, and accepting the fact I knew I had reached my limitations physically. I can go most anywhere, drive, movies, out to eat, no worry of anyone staring at me struggling. People seem to accept someone in a chair physically over watching them maneuver around to stand and walking different. People tend to approach me differently, asking more reasonable questions, checking out my van lift etc.

    Life is good, I have 2 beautiful girls, I worked as much as I could, now I stay at home with the girls and work on my career in art. I do not hurt, no risk of breaking anything or tearing muscle/ligaments from joints. etc.

    Dunno, something to consider. I had a counselor once tell me "everyone will end up with a disability unless taken suddenly from this world, you have the fortune of having it now, and having control over it to choose your own destiny." Take care and God bless.

  6. I too lately worry about the falls, I fall from time to time and I tend to think what if I get injured again, last year I had a bad fall and could barley walk for 6 weeks. I know sometime in the future I will need to get a scooter as well, right now I am ok but going to places like the zoo or other places where you have to walk a lot are becoming a pain. A doctor actually told me he knows a guy who recently got a scooter and that he now has more energy to do things around the house and that he is actually able to do more things then he use to. So there is some real benefits to having one. Safety is very important as we get older, I just need to get a better vehicle in the future, one that would fit a scooter even a small one. Sadly the lotto numbers I play haven't won big yet. lol

    I guess you faced the same issue as me when walking around a busy stores, people come out of no where and give you no room, and for us it's hard to make quick moves to get out of someone's way. Like you say using a scooter means people have no choice but to give you room. Must be nice, as it makes going out less stressful.

    Its amazing to hear how similar all our stories are thank you for sharing a your story. It lets me know I'm not alone in this. Like you I am glad to have good friends and a wife who understands my issue's and accepts me not matter what. I too stay at home since I had to leave a well paying job due to an arm injury they say was related to the BMD. Now I just write for the blog and I also work on music production, I have a basic program right now but plan to record my own material sometime in 2011. Would love to see your art work if your on facebook join the my becker story group and you can post your pictures there or add me as a friend.

    God bless as well and thank you for stopping by to read this post!

  7. My son's story is so much like yours. He was diagnosed at 9, but we have not been given a definite Becker's or Duchenne diagnosis. Jonathan is 19 and has been using a power chair for a little over a year. He is still able to walk a little bit. Those precious few steps from the wheelchair to the bathroom make our lives so much easier. His life is a little more complicated because he also has epilepsy. Thank you for sharing your story.

  8. Ditto for me, for just about everything in your story. But I stopped being able to walk before you, for me it was age 25. Prior to that, I only drove cars that would be easy for me to get out of (Jeep Cherokee, Grand Cherokee, Isuzu Trooper). As for getting up to a standing position from any other chair, this helped me for a few years: Now, at 33, I use a power wheelchair, have an accessible minivan, use a Bipap machine at night for breathing, am on heart medications for cardiomyopathy (and got an implantable defibrillator). Besides this boring stuff, lol, I thoroughly enjoy life with great family, friends, and girlfriend.

  9. Susan I'm glad I am able to tell my story thank you for stopping by and sharing a bit about your son.

  10. Mario - Thank you for sharing, I hope your keeping well, I'll have to check out the link you sent me. I'm glad to hear you are enjoying life with your family and friends and wish all the best to you and your girlfriend.

  11. Wow!! I can relate to your story because since 11 years old i was diagnose to have a BMD. It's very difficult for me to adjust in my life because i think i have no hope for life. The people around me seems not to understand what is BMD is. Most of the people make fool with me and laugh about me.I get angry most of the time when they laugh at me but I am just praying to God and understand them.I am 26 years old now and I am still struggling for myself. For almost 5 years that I am seeking for a job until now i haven't found one.Every time for my job interview they ask what is BMD and it seems they don't understand the nature of BMD so they don't hire me.But still I'm finding a job.

    Thank you for sharing your story..God Bless!!

  12. Gaylord - I hope all is well and that my blog in someway helps you to understand your not going through this alone. At times things do get tough but we get through it and I believe someday soon you will find a job and find a great employer to work for. But I understand it is tough when people don't understand what BMD is, I to at times have been overlooked simply because people had no undertstanding of what issues I was facing. Sad facts are some employers are just missing the mark and I know interviews are really tough as well. The whole reason I started sharing my story was to make people more aware of what BMD is. People just need to be educated concerning those of us living with BMD. One day it will get better and not only in my area but around the world, I have people stopping by my blog from all over the world so lets hope someone is reading this blog in you area as well! Someday soon you will find that job!

    Stay strong and may God Bless you with a job really soon!

  13. I am fifteen and i also have BMD i know its gaing to get worse but call me naive but i still have faith ther'll be a cure sooner or later

  14. Modit - Thats where my hope lies, I really believe I will see a cure for BMD in my lifetime as well. Till then its all about staying positive and enjoying life the best we can! Thanks for leaving a comment!

    1. They are so close to finding a cure I believe it will be in the next 10 years

  15. Hi All,

    It's good to hear people's stories. Just like everyone I also have the same problem, the only difference is that I am 25 and was diagnosed of BMD today. Keep up with the positive attitude guys, reading your stories have given me strength.

    I have one question to people who are married though. I learnt that it's difficult to be in relation/marriage because of the physical weakness (which makes sense also), but it seems you guys have good and normal life. Is it really possible to get married and lead a normal life with BMD? Doesn't it create problems with physical relationship?

  16. Vivek - Great to hear from you I am glad to hear reading everyones stories has given you strength. When it comes to relationships and marriage our lives are usually exactly the same as those without BMD. Sure we struggle with with issues when it comes to lifting heavy objects, walking long distances, falling and sometime not being able to help our wives out but in every other area of relationships we do perfectly fine. Just stay active go for walks exercise and eat healthy and stay positive all this helps me a lot. Again thanks for the comment!

  17. Thanks Brad for information. I am all fine and positive. The next issue for me is to inform my parents about this. Unfortunately my sister also has BMD. It will be difficult for them to accept that I too have the same decease. May god give them strength to accept it.

  18. Brad, would you explain to me what the difference is with DMD & BMD? I know both are Muscular Dystrophy with DMD with the lack of X Chrome’s?
    And thank you for posting a blog. For me, I don’t want to be ignorant, but sometimes parents are protective of the child and can be standoff people like myself who just want to understand and not be invasive?

  19. Anonymous - The best source I could think of to find out the difference between BMD & DMD is found at please go to:

    Thank you so much for the question and leaving a comment! :)

  20. Brad very inspireing story hope you know your friends love ya in any way i can help just let me know

  21. Brad, thanks for sharing your story.i also have BMD and its been an eyeopener seeing so many people dealing w/ this. i grew up not having a clue about what was wrong w/ me till i was diagnosed at 24.i finally gave up walking a yr. and a half ago after i nearly broke my pelvis in a fall. giving up walking and driving were the 2 hardest things i ever had to do. thanks again Brad

  22. i forgot to say, i'm 42 now and married for over 14 yrs and still at home

  23. Brad from My Becker's StoryJune 23, 2011 at 8:47 PM

    Your welcome Ralph! I hope your doing well! Sorry to hear you had to stop driving I know it must have been hard! I am a big car guy and losing my ability to drive will be difficult for me as well! I am facing some walking issue right now winter is becoming my biggest problem I live in a apartment that means walking to a parking spot in deep snow and ice! I really wish I had my own home with a garage or at least lived in an apartment with underground parking! My Wife hates seeing me struggle in the winter and I know one wrong slip and fall and I might break something! I know of two people who have broken bones recently so I need to be more careful but that easier said than done! Lets hope no injuries for the both of us from here on out! Anyways thanks for the comment wish you all the best!

  24. Hi all. I have BMD also and my story is very similar. I was diagnosed at age 9. I loved playing sports but really struggled doing it. I could never run very fast. I played Little League Baseball. Played Basketball through the 9th grade. I was never exempt from PE and this was very difficult. I wished I had done more things when I was younger. I'm 45 years old and have been using a power wheelchair for 10 years after a bad fall that resulted in a broken femur and surgery. I have not walked or stood up since that tragic day. I have a Braun Handicap Minivan with electronic hand controls. I have not worked full time since 1998 and I'm on disability. Been married to my high school sweetheart for 23 years. We have two daughters. One is 20 and one is 15. They both are carriers of the disease. I also have a brother, uncle and nephew who are all currently struggling with BMD. My wife works full time and helps me with whatever I need. I feel bad for her because she has to do all the chores I normally would do. She works so hard and gets very tired and frustrated. I love her a lot, but it has been difficult. One piece of advise; Accept your walking limitations and get that power wheelchair or scooter. It really makes life a lot less stressful. I mean a lot. Worrying about falling all the time is not worth it. I live in Michigan and ice in the winter was almost impossible to walk on. And very dangerous. I had my fair share of falls and face plants.

    Things I miss: Roller Coasters, Walks on the Beach, Swimming,Standup Hugs, Playing Baseball, Playing Golf, Camping in a Tent, Hiking, Running, Baths, Hot Tubs, Bowling, Basketball, Football and just standing up.

    I don't want pity. I just want respect and for people to not judge me based on my wheelchair. Please stop staring at me!!! I have a brain and know how to use it. I always try to smile everyday. It's not easy. I get mad and frustrated on a daily basis. I hate not being able to do simple things.

    Thanks for listening.

  25. Brad from the My Becker's Story blogAugust 15, 2011 at 10:42 AM

    Daniel, I can fully understand where you are coming from, I too feel bad for my wife who also has to do many things for me. I know it can be stressful, cleaning can be difficult for me, walking in the winter what a pain I was actually hoping I would win the lottery before the winter comes but I am running out of time. I live in an apartment and sadly the parking lot and walkways are never cleared properly. I fall every winter I really wish I owned a home with a garage that I could drive into. I could understand using a power wheel chair in the winter must not be fun.

    I am just at the point where I am looking into getting a small mobility scooter just to avoid falls and it would come in very useful when going to areas where you have to walk alot. I fell I while back and really hurt my knee I was lucky to have it heal but it taught me that I need to take this way more seriously.

    Its very weird I am actually the first in my family to have BMD I have a brother he doesn't have it. Thank you for the advice about a mobility scooter I know it can be a big step for most of us to take but it will make our lives better.

    Thank you so much for your comment. Please know were in this together and I know were both very thankful for our wives and we both hope they know we wish we could help out more. They may get frustrated but we both know they do love us.

    Please if you are on facebook join the My Becker's Story Facebook Page just use the link on the side of this page! It a great place to meet others with BMD!

    Please keep in touch!


  26. I am a 17 year old guy in high school. I have BMD and struggle with lots of things, just like many people here. I have a great life and am a very happy kid. I have awesome friends and family that have helped me over the years with my disability.

    I live in CA and go to UCSF once a year for a check up so the doctors can see how I am doing. The time before last that I went, the doctor there suggested that I try creatine. I don't know if any of you have heard of it but its something body builders use to build muscle. I have been using it for a couple years now and it has increased my energy, but also I got some 2 pound weights from a friend and have been using those and they have got lighter so I started using 3 pounds weights, then 4 and now 5 pounds. Also with my legs I have been doing some exercises with those and have been getting results. Getting around my big high school has gotten easier. I am able to get up ramps easier and faster and can get up from sitting easier. I am hoping wanting to get back to UCSF soon so I can see what the doctors there have to say.
    Some of you might wanna try it. It isn't prescription and so you can go to a local health food place and get it.

  27. My 11 years old son was just diagnosed with BMD yesterday. He had high CK levels (muscle enzymes) and enlarged calves, he complained of some leg tiredness, but other than that he leads a fully active life playing baseball, soccer, riding a bike, jumping on trampoline, etc. So it is a bit confusing as to hear how BMD progresses.

    I am both scared for him and sad. I never want my son to feel limited in anything he does - mentally or physically. The doc said he is "very strong, and maybe the case is mild."

    His dad and I do not want to scare him by going into all the possibilities at this age, but focus on staying active like he is, get regular exercise and build strength in muscles.

    I am not really sure what to say. This is not a place I ever thought I would find myself or my son and with it all being so new am going through the range of emotions that leave me exhausted. I don't exactly know what to expect and that creates more fear.

    Is a wheelchair for him inevitable? Is falling and having trouble getting out of seated position (even though he doesn't show any problems with this now) just going to HAPPEN....? Or can BMD play out differently?

    1. I just read your story and I am in a very similar situation. My son is 10 and diagnosed by accident. He has the large calfs and testing revealed high CPK numbers. He is active, playse soccer and jumps on the trampeline, all in all is very strong and bright. I was told he is mild but doctors never know when changes will occur. I spend so much time watching and crying over this, he is a happy biy and I do not want to take anything from his childhood, it eats at me and I am scared.

  28. Brad from the My Becker's Story blogSeptember 3, 2011 at 5:37 PM

    Hollybd I too at age 11 could do all the things you mention your son is able to do right now. When it came to me wanting to know more about my condition/BMD when I was younger I was ok not knowing what life would be like for me in the furture. I knew I had my limitations but my parents really never went over all the troubles I could face related to having BMD they just let me be a child and I enjoyed life just like anyone else.

    You have the right attitude if he's already active thats great, the biggest thing that can help is staying active & doing exercises. I've been told when it comes to staying active its more about maintaining than building muscle.

    Sometimes the best thing you can do is just be there for your son, truth is when I was younger I really didn't want to talk to anyone about having BMD I was too busy trying to have fun. If your son has activities he enjoys doing that take his mind off of his conditions thats great. I use to draw but really enjoyed being outside with my friends.

    I can understand your worry, my parents were told I would be in a wheelchair by my early 20's and here I am 35 years old and still walking.

    The truth about BMD is that it can affect someone in different ways some use wheelchairs at an early age other are over 30 and still walking. I know this must be tough for parents not really knowing and hearing and reading so many different stories it can be overwhelming.

    Falling and having trouble getting up can be a bit of a problem but this can be reduced by staying active and getting enough sleep. Please Holly if you want to talk a little more you can also e-mail me at

  29. Wow, when I read your story it is so much like my husbands! he is 34 and has BMD. Life is a struggle for him getting around etc.Evene what seem to easy things can prove difficult, like pushing our daughters pushchair, his feet get in the way. He does get very upset and frustrated. We to have to soon think about moving to a bungalow to avoid the stairs. My husband also suffers with a heart problem, which he is medicatted for.
    Keep doing what you are doing and spreading the word. xx

  30. hi i have 3 sons age 10 3 and 10 months. my 3 year old was dignosed with bmd 2 days ago. i am devasted and very concerned about what lays ahead of him. i never thought i would find myself in a situation like this.i dont know how to accept this and i really dont know what to do.he is my baby and i would give anything in this world to help him but i dont know how

  31. I have three sons, 15, 14 and 9 months, my 14 year old was diagnosed with bmd when he was 2, we've looked back on family tree and can't find a source, doctors said was new case, I was tested and was told I was not a carrier yet my 9 month has just recently been diagnosed and he has different father so I think their tests were wrong. My 14 year old has wheelchair but is very independent and prefers to struggle on, secondary school is starting to be a cause for concern as bigger kids can be so cruel, it's hard coping but we take everyday as it comes x

  32. Thank you for sharing. I have 2 sons with Beckers. They were diagnosed in 2009. They are 16 and 11 now.

    1. I too have 2 sons with Becker's MD. My oldest son was diagnosed as the result of serious cardiac issues, but not until after he had a heart transplant. He had continued high CK levels even after transplant and that's how we found out 2 years after his transplant (in 2008). We have since learned the difficult news that our younger son also had Becker's and he is also now having cardiac issues. They are now 15 and 18.

  33. Hey Brad,

    Love the blog, been following you on twitter for a while from the UK and what you are going through sounds v similar to my experiences - I'm now getting on to my mid 40's so have an idea of what is in store! Something that I am sure you are aware of, even if you haven't stated it. Do as much as you can while you can and don't put things to tomorrow. I realised this and acheieved a life ambition of sailing round the world 13 years ago. So glad I did it then as it wouldn't be possible now. Keep up the great blog. @paulph

    1. Thank you Paul! That is great advice - there are still a few things I'd like to do in life, guess I'll have to share that in a future post! Thank you for following the blog! Comments like yours help give me the modivation I need to continue sharing my story! Thank you!

  34. Hi Brad, thank you (and other posters as well) for sharing your stories. I'm a father of three boys of 4y, 2y and 5 months from the Netherlands. Our two year old was diagnosed with BMD a year ago. More or less by coincedence as we ended up at the doctors cause he was behind in growth/length.

    Elevated CK levels in his blood lead us to DNA test, which confirmed BMD. I started to gain lots of medical info to get an idea of what BMD is all about. Your stories and experiences really help in putting things in perspective and give us practical info on the road that lies ahead. My wife is not a carrier, so that reduces the chanches for BMD to our other sons. To be sure, our oldest son was checked today on his CK levels, results are back in one week. Fingers crossed.

    Our 2-year old son doesn't show any BMD signs yet, and we try to stay positive en hope for the best and a cure in the near future. Much of questions I have from a parent point of view are already answered here, but we are still in doubt about issues like: When are we gonna tell him about BMD? Encourage him to be active or just take it easy? How can we as parents/family support him best?

    Keep up this great blog! Carpe Diem / Seize the day.

    1. Welcome to the My Becker's Story blog Jeffrey. Thank you for taking the time to leave a comment. I hope for good results concerning your oldest son, I am glad you have found a few answers to some of the questions you have. I encourage you to read my post "Life after being diagnosed with Becker's Muscular Dystrophy" where you may find a few more answers. Thank you for the encouragment, I am glad to hear sharing my story is helping others. Thank you!

  35. I was diagnosed with becker muscular dystrophy. Before being diagnosed i felt that i was naturally lazy and i felt shame about it. But after knowing that it is the part and parcel of my DNA I felt that i was not responsible for my weakness. Only my muscle chemical make up was naturally like that.

    Anyhow the life which posses more challenge will give more intuition to achieve lot many things in our life.

    From my childhood days i wish i had been blessed with an elder sister to take care of me. I used to dream as if a spiritual sister is there to motivate me. When i do something thinking that a elder sister is there with me I do it with more interesting and creatively.

    My elder sister thoughts is great inspiration and motivation for me. I will face this worst by thinking that as if an elder sister is ther motivating me. I wish i find many person in all the walk of my life as my own elder sister so that i would face this challenge with confidence.

  36. Hi Brad. My Name is Costa Ndayisabye. I am a Rwandan Author of the book "The Work That Brings Peace In Me" or I live in the USA. I and my friend who has DMD here in Maine, are finishing our book called, "Muscular Dystrophy Is Not Mind Dystrophy". We would wish to quote your positive and encouraging ideas you wrote on your book. You are such an inspiration for you and for this world.
    Much love and Light, from Costa

  37. My husband has BMD he was not diagnosed till he was 38 which is very late! But he can now look back over his 'clumsy' childhood and see where things may have been linked. He too has the falls but always walks with a stick now and this helps enormously it also lets othe rpeople know to be careful around you and not assume you are able bodied. He copes well but does get very tired.

    I am currently in training for The Great North Run which I am doing on behalf of The Muscular Dystrophy campaign. My endeavours are been doccumented in my blog called 'following a fat unfit 50 yearold to fitness' feel free to have a read.

    1. oops typo..... following a fat unfit 50 year old to fitness

  38. My husband has BMD, and is currently 53 years old. We have only been married for 3 1/2 years, but have been together for 10 years. He was married previously and had 3 children, 2 boys now 23 and 22, and a girl now 21. The girl is a carrier the boys have no problem with MD.

    My husband would like me to add these comments:
    "Quality of life is very important, and his recommendation is not to delay using a wheelchair, as the dangers of trying to stand and walk when it becomes a dangerous situation are not worth it. Going into a wheelchair opens up a lot of opportunites that you may not have even considered before having the wheelchair. In his situation, he had to avoid the movies for the fear of being knocked over or falling and would only go to the drive-in movies (which no longer exist). Once he went into a wheelchair he could go to the movies whenever he wanted. He used to play guitar, and the weakness meant he could not longer hold or play the guitar, and switched to playing keyboard. Being in the wheelchair has given him the mobility to go to concerts, and he is a member of a Country Music Club and is out performing with club members on a weekly basis, something he couldn't do if he wasn't in the wheelchair."

    He has now been in the wheelchair for 20 years. Uses a power chair outside the house, and a manual chair inside the house which he is now struggling to push on our tiled floors. He is very weak now, and can't lift a cup or even a fork to his mouth, he has to bend his head right down to eat or drink. We now have carers coming in morning, lunchtime and evening to assist with his care as he also suffers from Irritable Bowl Syndrome which is a bigger problem than the BMD. I have injured myself caring for him, as we didn't have a lifting hoist for a long time and I used to lift him in and out of the car, take apart the powerchair and lift that into the car, lift him in and out of bed, and the shower and over time that took its toll. I ended up with a bi-lateral femoral hernia - which was repaired and has come back, and I have 1 crushed disk and 2 bulging disks and am unable to do the physical care I used to. I now use a walking stick and struggle - but that doesn't mean I love him any less.

    Things these days require a lot more planning, but once we plan things we're able to do a lot, including going on holidays, outings to movies or restaurants, picnics, or just walking the dogs.

    I often say I'm lucky he has the conditions he has. He's always there to talk to me, especially when my day hasn't gone to plan and I'm feeling down - he has the time to spend with me and talk things through. I always hear him playing the keyboard and singing when I come home, often singing beautiful love songs to me while I cook dinner. I reckon if I had a husband who went out to work, he'd come home too tired to talk, and probably just have dinner and then veg out in front of tv. My husband reads a lot, is interested in so many things and is very knowledgeable due to his wide reading so makes for a great conversationalist. I'm lucky the way our lives have turned out - if he didn't have BMD it wouldn't be as good as it is. Everyday might be a struggle, but it sure makes you appreciate all the good things and to be thankful for the things you can do and enjoy.

    Love the blog - your story is so similar to my husband's, he was diagnosed at age 10. He suffered terribly at school from other kid's cruelty. Life as an adult has been much easier for him.

    Good luck to anyone else with BMD - from my observations and living with someone with it - life is what you make it! Stay positive, focus on what you can do not what you can't and make sure you enjoy each and every day.

    Take Care - Dianne C

  39. First of all I would like to thank Brad for this Blog. I basically had the same experience throughout life. Luckily I was not really teased during school, as I some very great friends that just would not take their idiocy or other were in fear they would beat them up.

    Dianne, you are a trouper. I am married as well and have 2 teenage daughters. I have been together with my wife since I was 18yrs old. We have been married for over 20 yrs and she is still by my side although I am not always the best to be around.

    I am 45 now and must use my manual wheelchair on a daily basis. This just happened recently as I am now in my chair at least 12 hours due to work and taking local disability transit. By the time I get home my leg muscles are basically useless but my energy levels are tolerable. I too decided a wheelchair was a must for me to become more and independent and the thought of the many injuries, including falling down a flight of stairs, was just not worth it. I guess Im fortunate that I still work but it is mainly because I work at Call Centres. All you need is to use is a headset, can type somewhat, and be able to take verbal abuse on a daily basis. It can be very stressful at times and unless you can do this kind of work, your basically out of luck when it comes to half decent employment.

    Thank you Dianne, and your husband's contribution, as I believe sometimes the risks of making your body do something it is not capable of doing result in injury, frustration, and depression. I do know that it is not an easy decision to make as many do not understand, but I have to believe it is the right one. Tell your husband to keep on singing and giving you praise because you definitely deserve it. I believe your husband must have the most positive outlook on life because it must be awful difficult to sing with a negative outlook.

    Keep up the battle.

  40. Wow! I am so amazed at the similarities in your story with my own. I was diagnosed at age 11 with FSH MD. Similar experiences in school with friends, walking,steps, rising from chairs fromlack of core abdominal muscles and feeling different. My walking didn't get too bad until my 30's. I tripped so horribly I fell and scraped my knee to the bone. An AFO was ordered and I've been wearing one for 12 years now. I didn't realize that Beckers was so similar. Now that I have joined Twitter, I am looking as time and neck allow for information and reaching out to those who are like me. I thank you for sharing your story. It is something I have attempted but not yet completed. Reading other's stories is inspiring me to write my own to completion. I have a blog and write inconsistently. I too have spoke at many MDA events locally and participated in fundraising. Even appearing on the National Jerry Lewis Labor Day telethon (local spot only however). It felt as though nothing was getting done. I found the FSH Society. I love this organization and have always found answers and warmth. They have made such strides in raising awareness. I applaud you in your efforts to raise awareness for Beckers Muscular Dystrophy. I love that you keep a positive attitude. It's so easy to get down. Honestly I do from time to time but generally I too try to keep this attitude of gratitude. It can always be worse and despite our challenges we can be proud of all we overcome, balance and cope with. We are a strong lot. Keep writing and doing your thing. It's very inspiring. So glad to have met you via Twitter. It is what we do not what we can't.

  41. I was diagnosed when I was 12, but my parents knew something was wrong much earlier. Starting around age 4, I had started "toe walking" and complained about my legs hurting when walking. Apparently in the 70's (I was born in 1970), most doctors didn't seem to know about MD. From that young age until 12, I was taken to several doctors. After examining me, they'd tell my parents I was just a lazy kid, and would outgrow it. At 10, frustrated, knowing it cant just be from laziness, I was taken to a chiropractor. He was the closest, knowing something was wrong with the muscles in the leg. For a couple months I'd go in for weekly electro-stimulation sessions. (I did not like those.) After a few months of "therapy," he suggested a surgery. It would entail manually stretching the calf muscles. My parents realizing this was taking things too far, pulled me from that. Finally it was my 6th grade gym teacher that recognized the signs, and suggested a doctor. The rest follows the same story line though. The tests... and yeah, that EMG and the needles still brings shivers. School went much the same as well, some teasing in the lower grades, became less and less as everyone matured. Graduated college, got a job, etc. At 25 moved to a wheelchair, and shortly thereafter a van with controls, chair lift, etc. The rest is the main reason I'm writing. In 1999, was in a serious accident with my van. The hand controls malfunctioned, causing the throttle to be stuck open, and locking out the breaks. Apparently, one small part in the controls was not stainless steel, like the rest. It rusted and a piece broke off causing the malfunction. Anyway the van took off, and the acceleration held me back in the seat, so was unable to get to the ignition, etc. One lucky thing was, I was able to avoid hitting anybody else. Eventually I ended up in somebody's front yard, could either go straight, through the house, or turn into a tree. So, the tree it was, unfortunately I hit it with the driver side, instead of the other. Busted up, I spent 6 months in the hospital. I guess all that time in a hospital bed, doesn't agree with MD. Once recovered, I wasn't able to do as much as I had used to. But, you learn to cope, like you all know, and move on. Besides it being kind of therapeutic to write all this, I wanted to get out the bit about hand controls. I'm not going to say to not get them, its just that if you do, get them to install some kind of kill switch that will be easily reachable. Something as simple as that could make a big difference. Just keep it in mind and be safe. Keep the blog going, I think its great help to others.

  42. Most responses here are from those who have knowledge and experience of the problem.
    Helpful to people like me who have been given alternative diagnosis like M.S.
    I feel I could have done better with more accurate information so I thank you all.
    Not just for myself but for others in similar situations

  43. Thank you all,
    I am 45 years old and have BMD. Around the age if 12 I noticed that I cold not compete with other boys my age when playing sports, but I still kept on going.
    Finally at the age of 18 I was diagnosed and then my world fell apart!.
    In part it was due to the family doctor not knowing much about BMD and telling me I would be in a wheelchair in a few years and that my life as I knew it then was all but over.

    Well, the next 5 years was hell......I gave up on life and sat around moping and thinking that my life is over.
    One day I woke up, realized I wasted 5 years of my life ans started looking at things differently.

    There is a lot more to tell, but I consider myself lucky. I am still mobile, only problem is the stairs, but I force myself to stay active.
    I would recommend you all to take up Tai Chi, the flexibility I gained through that is unbelievable!!

    I have traveled the world, I have seen things that most "normal" people will never see in their lives and fell truly blessed.

    Even though we all might be in different situations:
    We have one life, LIVE it!!

    Do not look back in 5 years and think that you have wasted the time.
    Time is precious, especially to us who are affected.


  44. Hi brad I'm cory and I'm 14 and I have bmd do you have any tips or advice you could give me.

    1. Hi Cory. Great to meet you. I have so many tips which are included throughout the My Becker's Story blog. I would encourage you to check out the List of Blog Posting you find near the top of the page. You will find many posts on a wide range of subjects. I truly hope this helps. As far as any advice I can give you at the moment is simply try your best to stay positive and on focus on the good things in life. Pursue your dreams and just enjoy life. I would also suggest if possible to get involved with your local MD Charity, I currently volunteer with Muscular Dystrophy Canada and enjoy it a lot. I hope this helps and please feel free to stay in touch - Brad

  45. Hi, I'm Gerard Cannon from Ireland, Dublin and its good to see these stories of growing up with Becker's MD. I just wanted to share briefly my story:

    I was diagnosed when I was 17 and most of my life before then involved a lot of kids bullying me as I walked funny and was weak - people just thought I was strange and lazy - as nobody knew - also myself. I rode on my bike, had roller blades , did what all kids do, just not as well. After discovering my illness at first I took it bad, did not accept - so I went to have a party life. After awhile I came to terms with it and I now work in Sales and am 27. I struggle to walk long distance and hills but other days are better than others, get up from low positions and also find it horrible washing from a sink - i will now do that sitting, in my job there are stairs but i don't mind as there are rails, in my apartment there are not which is great. I just live my life like anyone else as best I can as I see it as occupational therapy - resistance on the body although some thing I have to compromise. I have falls randomly but have never hurt myself too bad. Well that's just a brief story - so much more could be said - but this is a lot for a blog!