My Becker’s Story has only one purpose, and that is to 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 Becker’s, my struggles and concerns when it comes to living with a disability. Over the years while growing up with Muscular Dystrophy I have been surprised to learn how many people don’t really know too much about it. And times that can be very frustrating, and still to this day there are people out there who still think I have MS when I don't. It seems like all I have been doing over the years is constantly telling people I don't have MS. So I started the My Becker's Story blog to raise awareness, to help give people a better understanding of what it's like living with Becker’s Muscular Dystrophy. First a brief overview about what Becker’s Muscular Dystrophy is, it’s a disease that ends up affects every muscle in the body, over time the condition get’s progressively worse resulting from muscle wasting. The truth is there can be a lot of issues one can face when living with Becker’s, this can range from slips and falls, heart condition’s, mobility issues, problems climbing stairs, issue’s walking and upper arm issue’s. Thankfully, though most people with Becker’s can look forward to enjoying a normal lifespan exceeding past their 50’s and 60’s. Though the use of a wheel chair or cane can become a reality as early as the mid 30’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 10 years old and was 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 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.
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 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 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.
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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 nose 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 muscle disorder may get worse over time, but I have to keep a positive attitude. No matter what my goal is to try and enjoy life as much as possible hoping one day they find a cure!
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 muscle disorder may get worse over time, but I have to keep a positive attitude. No matter what my goal is to try and enjoy life as much as possible hoping one day they find a cure!
Related posts:
Life after being diagnosed with Becker's Muscular Dystrophy ,
Growing up Life was pretty good , Still finding ways to enjoy life &
A little bit about me the author of My Beckers Story
Click here for a list of all blog postings found here on the My Becker's Story blog
Join me on Facebook at: facebook.com/mybeckersstory
Life after being diagnosed with Becker's Muscular Dystrophy ,
Growing up Life was pretty good , Still finding ways to enjoy life &
A little bit about me the author of My Beckers Story
Click here for a list of all blog postings found here on the My Becker's Story blog
Join me on Facebook at: facebook.com/mybeckersstory
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.
ReplyDeleteIt'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.
ReplyDeleteHi, 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.
ReplyDeletesmartscribe 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!
ReplyDeleteI 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.
ReplyDeleteAs 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.
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
ReplyDeleteI 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!
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.
ReplyDeleteDitto 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: http://www.amazon.com/Lifting-Cushion-Seat-Assist-Chair/dp/B000VZA90A. 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.
ReplyDeleteSusan I'm glad I am able to tell my story thank you for stopping by and sharing a bit about your son.
ReplyDeleteMario - 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.
ReplyDeleteWow!! 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.
ReplyDeleteThank you for sharing your story..God Bless!!
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!
ReplyDeleteStay strong and may God Bless you with a job really soon!
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
ReplyDeleteModit - 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!
ReplyDeleteHi All,
ReplyDeleteIt'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?
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!
ReplyDeleteThanks 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.
ReplyDeleteBrad, 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?
ReplyDeleteAnd 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?
Anonymous - The best source I could think of to find out the difference between BMD & DMD is found at muscle.ca please go to: http://www.muscle.ca/ontario-nunavut/muscular-dystrophy/disorders.html
ReplyDeleteThank you so much for the question and leaving a comment! :)
Brad very inspireing story hope you know your friends love ya in any way i can help just let me know
ReplyDeleteBrad, 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
ReplyDeletei forgot to say, i'm 42 now and married for over 14 yrs and still at home
ReplyDeleteYour 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!
ReplyDeleteHi 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.
ReplyDeleteThings 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.
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.
ReplyDeleteI 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!
Brad
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.
ReplyDeleteI 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.
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.
ReplyDeleteI 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?
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.
DeleteHollybd 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.
ReplyDeleteYou 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 my-beckers-story@hotmail.com
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.
ReplyDeleteKeep doing what you are doing and spreading the word. xx
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
ReplyDeleteI 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
ReplyDeleteThank you for sharing. I have 2 sons with Beckers. They were diagnosed in 2009. They are 16 and 11 now.
ReplyDeleteHey Brad,
ReplyDeleteLove 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
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!
DeleteHi 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.
ReplyDeleteElevated 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.
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!
DeleteI 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.
ReplyDeleteAnyhow 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.