Tuesday, January 18, 2011

Life after being diagnosed with Becker's Muscular Dystrophy

  When I was first diagnosed with Becker’s Muscular Dystrophy at the age of 10 my life really didn’t change that much. The only thing I really noticed is that I just couldn’t keep up with other children my age, but it really didn’t bother me that much. Even as a child most time’s I kept a positive attitude about things, sure I had trouble running which limited my ability to participate in team sports, I just didn’t let it get to me. To be honest most time’s I didn’t allow my condition to keep me from being involved in playing sports with my friends. For most of my childhood I was able to take part in shooting hoops, playing baseball and was even was able to play floor hockey. What really helped me a lot was the fact that growing up most of my close friends knew about my condition and they just allowed me to play sports at my own pace. When I was younger I remember a time when my churches youth group was going to a local park to play a game of soft ball, at first I didn’t think I was going to be able to play, but thankfully one of my friends offered to run for me. This allowed me to join in the game and have a great time with everyone else, and what made that day even better is that when it was my turn up to bat I hit the ball so far that the person running for me actually made it all the way to third. As you can see even with Becker’s Muscular Dystrophy I was still able to be involved in sports just in a different way. I really believe that I was lucky that growing up I had people in my life who understood what my limitations were.

Sure growing up I ran into a few problems, but to be honest having Becker’s Muscular Dystrophy really didn’t end up ruining my life. From the day of my diagnosis to at least the age of 18 my life wasn’t that bad there was actually many things I could still do. Stairs were a bit of a problem but when I was younger I was still able to climb stairs, I just had to climb them in my own unique way. But my biggest problem with stairs came when I had to go down them; you see I had to be very careful since there were a few times as a child that my legs gave out resulting in me falling and sliding down the stairs. As you can see living with Becker’s Muscular Dystrophy I have faced a few challenges and at time's I had to adapt to the situation and do things in a way that works best for me. I learned pretty quickly that when going down stairs I really have to take my time, it's was the same when it came to me and playing sports I just had to do it at my own pace. You see there are many things I was still able to do as a child, I even joined my friends whenever they would go to the local amusement park. I just took a lot of breaks but I still had a great time. You see growing up I never allowed the Becker’s Muscular Dystrophy to get in my way of having fun.






10 comments:

  1. Hi Brad - I just came across your blog yesterday. I too have BMD and was diagnosed in the early '80's when I was in my mid twenties. No need to do the math - I will be turning 55 this March.

    I also live in Ontario and was working full time until last January when my BMD made it more difficult to complete tasks and travel.

    As a child I had many of the same issues as you. In my case my symptoms were less noticeable. Yes, I was slower than the other kids but I was unaware I had a disability. The only major physical complaint was the intense gramps in my large calves. So painful at times I had to sit for 30 minutes before I could stand again.

    I was teased endlessly and had a great deal of difficulty dealing with it. In high school I took gym and was ALWAYS last. I was mocked by the gym teacher and students alike.

    I survived and was able to attend and graduate university where I really came into my own. The teasing and bullying of the past was gone but I soon realized something was wrong physically. I was having difficulty climbing stairs and walking long distances.

    In 1979, I went to my family doctor who said I was just out of shape and I should try jogging! I took his advice and tried jogging a few times but the cramps in my calves came back. I also tried swimming which was much easier. But in the end my condition was getting worse. So back I went to the doctor who sent me to a neurologist and all the tests. This was in 1982. At the time they diagnose me with LGMD.

    I had a a lot of difficulty with this I was a young man in my early 20's. I felt my prospects for employment and love were at an end.

    I was the manager of a retail store at the time and I knew I would have to find a less physical job before too long. Eventually, I was promoted to an desk job at our head office and continued there until 1995 when I met my wife and was laid off after 15 years service.

    I was without a job for two years but finally decided to go into charity fundraising first with United Way and then with Dog Guides Canada in 1999 until I left last January.

    Like you a was able to keep walking until about 2005 when I visited Washington DC and used a scooter for the first time. I was liberated!! I was able to go everywhere and not get tired or fall. Upon my return I inquired about a scooter. Lucky for me my company group insurance covered the cost. I used the scooter for all my outdoor and mall visits. I also have lift in the back of my Chevy Venture.

    In 2007, I was having increasing difficulty getting up from my office chair. I started using a power chair at work.

    I HATE WINTER!!!! This time of year is frustrating. With my job I had to travel at night for fundraising. This was a challenge anytime (especially if the building was not accessible, as often was the case). That with weakening with my arms and hands it was just too difficult to carry on. I applied for and received Long Term Disability (which pays a lot more than government plans.

    That's where I stand (or sit) at this moment.

    Look forward to ready your blog in the future.

    Gord

    ReplyDelete
  2. Gord - Great to hear from you, I am always amazed by the stories of others living with BMD. I hate winter too, if it's slippery we have to walk slow which can lead to fatigue, I struggle so much in winter, just today my legs gave out when I tried to step up a curb. Thankfully a lady was there who helped me get back up. I really wish I lived somewhere warmer like Hawaii.

    Employment has always been a major issue for me, when I was working sadly my work place did a very poor job of clearing snow making winter days very stressful. After only 4 years I had to stop working due the progression of the BMD. I now spend my days focused on this blog, it's really too bad that writing doesn't pay. I really love writing but getting published is very hard. I really hope that in the future I may be able to become more involved with Muscular Dystrophy Canada. I have some big ideas to help raise more awareness about Muscular Dystrophy in Canada, I guess we'll see what happens in 2011.

    Eventually I will need to start using a scooter as well, I find some trips a real pain now I love going to Niagara Falls but the walking is too much, I still go but take my time. Growing up and even now I love cars but had to stop going to the yearly Autoshow in Toronto since it involves so much walking. Having a scooter must be great. Currently it is really hard for me to get up from a seated position, my car is a really big issue for me right now it sits too low, and at home getting up from a chair is really hard, I think I might need to get a lifter chair in the near future.

    I am very glad you took the time to share a bit about your story here.

    Thanks again for stopping by and leaving a comment, stay well and keep in touch!

    Brad

    ReplyDelete
  3. I thought it was easy to compete with normal boodied persons in normal day to day life. But it is not with BMD

    ReplyDelete
  4. At times sure life is hard living with BMD. We just have to find ways to stay positive and I know it can be hard doing that but maybe it would be a good idea for people living with Beckers Muscular Dystrophy to find someone else living with it that they can talk to so when they are having a tough time they don't have to face it alone. When it comes to any struggle it's always better when you have the support from someone who is going through or who has been through the same things. This blog allows me to connect with so many others living with Beckers Muscular Dystrophy and knowing were in this together helps me a lot.

    ReplyDelete
  5. My 16 year old was diagnosed at 13, his Grandfather also has it. He see's the horrible shape his Grandpa is in due to the Beckers and I cannot for the life of me get him try and lose weight and find something else to do besides play his XBOX. I really would like him to go to an MDA summer camp, but he won't. I would love for him to have someone with Becker's to talk to him. He is in real denial about him having this disease. He is about 50 lbs overweight and no ambition at all. I am scared about his overall health and heart conditions. He does go every year for his checkups at the University of Michigan though. I am just frustrated with him not wanting to deal with this and talk to others about his frustrations. All my father does to him, he says is preach, so it goes in one ear and right out the other. Any suggestions would be wonderful at this moment...
    Thanks for reading,
    Candy

    ReplyDelete
  6. Candy - When I was first diagnosed I really had no clue as to what the future held for me. You see no one in my family history has ever been diagnosed with any form of Muscular Dystrophy I am actually the first one. When I was diagnosed with BMD the internet didn't exist and I really had no way of seeing what my future might be like. It wasn't until I started the blog that I met others with BMD and to be honest sometimes their stories are hard to read. I am guessing since your son see his Grandapa facing some major struggles due to BMD that he may just want to ignore the fact that he has BMD. At times I wish I had someone in my life to give me tips on how to deal with the progression of my BMD.

    I would suggest to anyone who is young or has recently beeen diagnosed with BMD to stay active it is truly the best thing you can do. Over the years I have done my best to stay active since my doctor always told me I had to keep my weight down since even being a little overweight can make my life a bit more difficult. It is always best for those of us with BMD to do our best to maintian a healthy weight and stay active. One of the biggest things that helped me stay active was attending my local Church youth group thats where I met most of my friends so every Tuesday night I had something to do plus whenever they went on day trips I would join them this helped keep me active. As a teen I use to always hang out at the mall with my firends and with all the walking that was involved in this I got a pretty good work out.

    Growing up these days is much different from when I was growing up, when I was a kid video gaming systems were just coming out and yes through out my teens playing video games was something I did alot. But I was still active and loved riding my bike around my neighborhood and hanging out with friends. And I would suggest to anyone that if at anytime you are having troulbe finding friends to hang out with then try attending a local church youth group I say this since it helped me a lot you see growing up I really didn't have many friends at school. I really don't know why the friends I found at church were more accepting of me but they were. I had many great times growing up when I was younger I even went to amusement parks and weekend retreats with my church and I know this really helped me to keep me active. Plus I just wanted to be like any other kid so there were times I didn't let my condition get in my way of having a bit of fun.

    The things I mention above worked for me all I can say to your son is that it is in his best interest to try and stay active since it will really help you out alot. Another suggestion is to make sure you get at least 8 hours of sleep a night this went a long way in helping me maintain a good energy level. Right now I am in my mid 30's and still walking and I know sometime's it is easier to just stay at home playing xbox but sometimes you need a break and in these momonet try and find things outside of the home you can do. And just do your best to stay positive and enjoy life.

    You see when I was first diagnosed with BMD I too wanted to just ingnore it and most times I never really did like talking about my issues related to having BMD. It actaully wasn't until my early 30's when I started this blog when I decided to start talking more openly about living life with Beckers Muscular Dystrophy. And I know for a parent you want to make sure your child is ok and I know it can be frustrating when he doesn't want to talk about it. I think the best thing you can do is lead him to web pages like mine and others and hope some of my posting help him come to terms with his diagnosis. I want to let you know that if he wants to talk or if you or any other parents have questions to please feel free to leave another comment and I will always try my best to answer everyones questions. Candy thank you so very much for stopping by to read this post I wish you and your son all the best!

    ReplyDelete
  7. This is a very interesting post. I myself am on Long Term Disability. I practiced medicine for over 20 years. After an unexpected accident, I have been unable to get to the office for a year now. I'm grateful for my disability insurance, so that I can pay for my medical bills and still support my family.

    ReplyDelete
  8. I am thankful to have found your blog. My son (18) was recently diagnosed with BMD. It is all new to us. It is helpful to read about your life, etc. Again, thank you.

    ReplyDelete
  9. Brad from the My Becker's Story blogNovember 8, 2011 at 12:20 PM

    Thank you for the comments Mel! You are very welcome! I hope the info you find here is very helpful for you and your son!

    ReplyDelete
  10. Hello Brad i am Nacho i have BMD too im 36 years old and i just discovered your blog, i live in spain so sorry about my english, i recogniced myself iyour stroy alot, same things as a young with sports and doing things slower, but you are complety right saying that you must know and accept your limitation and thats it, so glad to meet you, i create a facebook page a bout funcional diversity if you want to join it i will be so glad, thamg you and SALUD.http://www.facebook.com/pages/Actua-CON-TU-Diversidad-Funcional/376628322413567

    ReplyDelete