Friday, June 24, 2011

Aging with Becker’s Muscular Dystrophy

Over the last few months I have met many people who are also living with Becker’s Muscular Dystrophy and I have learned that I may not be fully aware of some of the challenges that lie ahead. To some knowing what the future may hold for them concerning their disability is viewed as a good thing but lately I think I’ve been suffering from information overload. Before starting the My Becker’s Story blog I honestly wasn’t fully aware of the true effects that living with Becker’s Muscular Dystrophy may one day have on my life. It was only about five years ago when I learned that I could possibly face issues related to the weakening of my heart. The heart being a muscle I really don’t know why I didn’t clue into this fact a lot sooner. I actually didn’t realize how serious of an issue it could be for some of us. This is why I see cardiologist once a year to have an echocardiogram and an EKG done to make sure my heart is performing exactly as it should. Thankfully so far all reports have been very good and I have been told that my heart seems to be functioning properly. Still though I continue to do my best to eat healthy and stay active just to be safe. To be honest that’s easier said than done and I admit to slacking a little in both areas. But there does come a time when you have to take your condition a bit more seriously. This is why for the first time in almost two years I forced myself to go for a walk at the local beach something I used to do a lot. 

 Over the last few years I have learned so much about life and what it is like for other living with Becker’s Muscular Dystrophy. Now I must admit that there are times when I am more than a little concerned about what the future holds for me and the progression of my Muscular Dystrophy. I already know that over time my legs will grow weaker and it does concern me. Just recently two friends of mine who are also living with BMD actually broke bones resulting from one of their leg’s giving out. So now I know I have to try my best to be as careful as possible to avoid these types of falls. As we all know one really bad fall can have a negative impact on your life. When I fell just a few years ago hurting my knee I could barely walk for about six weeks. On this occasion I was very lucky not to have broken any bones I just know now that I have to be a lot more careful around my home. Now since starting the My Becker’s Story blog I have met others also living with Muscular Dystrophy and their stories help to give me an idea of the future I may be facing one day. One thing I have learned is that so many of us are living at different stages in our progression and that none of us can predict the day when we may lose our ability to walk or do the things we enjoy. Over the last few years I have met other living with BMD some who are already using wheelchairs who are able to keep a positive outlook on life. Actually over the last few months I have learned a lot from reading the Life with Muscular Dystrophy blog where the author who is currently using a wheel chair shares his story about his life and living with Muscular Dystrophy. The most amazing thing about his story is that he really hasn’t allowed his condition to stop him from accomplishing anything. He helps to set a great example that despite the progression of Muscular Dystrophy life still goes on. 

 If there is anything I have learned over the last few years it’s that it is better to just accept things as they come and just keep on living your life. Now I am not saying the journey will be easy after all slowly losing your ability to walk will be difficult to accept at first. But being able to connect with others and learning how they overcame these same challenges will help me out a lot. I already accept the fact that one day I may need to start using a mobility scooter and I’ll admit that will still be a big step for me to take. At this point I plan to accept whatever changes come my way and hope to do my best to learn to adapt to a new way of life. I truly hope I can handle things as well as others have and I guess the best part of getting to know other people living with Becker’s Muscular Dystrophy is the fact they will be there to encourage me along the way. In every situation I plan to try and stay positive about things and really believe that there is no reason to focus on a situation you can’t change. And I know dealing with life changing circumstances concerning your everyday life for anyone can be very difficult and I haven’t always remain so positive throughout every situation but I do try my best. And honestly on those days when I happen to slip and fall or one of my legs gives out some times I do get angry and embarrassed. But in recent months I have really been trying to remain more positive about everything knowing I am lucky to be alive and that there are many things in my life I should be very thankful for such as my family and friends. So should I worry about my future and the progression of my Becker's Muscular Dystrophy? I'd have to say no since I have the support of so many great people including other's living with Muscular Dystrophy. 





4 comments:

  1. when i was still walking, i used to worry and pray for god to not let me fall everytime i stood up.now that im in my power wheelchair full time, my stress level is far less than before. i too struggled to stop walking not wanting to give it up but the danger of falling was becoming to great. ive also had to adapt my house for myself too. my suggestion would be to not wait till its too late because getting things you need can sometimes be time consuming and difficult.thanks again for starting this. its been very helpful to me knowing i'm not alone.

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  2. Brad from My Becker's StoryJune 27, 2011 at 6:26 PM

    It really makes me happy to hear you enjoying reading the blog, It's great meeting so many people and everyone who leaves a comment really helps to modivate me to continue this blog! I plan to get a lifter chair really soon and other mobility aids that will help me around the house. Cleaning is a bit of an issue I find it hard lately, I can still do it it just takes some time. Guess I need to search for items that help me clean the tub Mr Clean had a product but it seems they no longer make it oh well what can you do. Anyways Thanks for the comment and thank you for reading my blog!

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  3. Hey Brad -- Thanks for the mention -- I appreciate it! I have definitely been where you have been and it's okay to struggle, worry, and stress out about the things you are right now. One day you'll realize you've done all the stressing/worrying you need to do and you'll be over it. Not to say you won't have concerns but the frustration will start to evaporate. I now approach each new round of challenges with a good attitude and it helps a lot. You do sound like you have the same positive attitude, you might just not realize it yet!

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  4. Hi I also suffer from Becker's much of your blog rings so true with my own life am 32 and walking anywhere is an issue mainly because of that no energy in the muscles feeling. The falling is few and far between now, it used to be everyday at least once a day. I have been keeping a log of my falls helps to see if changes in my home physio improve my balance. I have discovered that the better honed your balance skills are the less you fall down. I have also trained myself in pushing my knees a little bit backwards each step helps stop the sudden Boom your on the floor events. Another thing I have been doing daily is calf stretch's and standing on a step with just my toes on and dropping my heel below the hight of the step, from since I first visited physiotherapy 16 years ago to stop achilles tendon contracture. Achilles tendon contractures are what cause the toe walking so many becker suffers do. The running down hill feeling that you can get from this only makes the chance of a fall so much higher. Footwear is also very important, I find a flat soled trainer works well like the skater kind. The padding on skater shoes help for when your bottom lands on your foot. I went to a local event today and there was some uphill walking needed which we becker suffers hate, so I had a go of my mothers mobility scooter and well now I want one. The odd comment of hey I want one of them from the people I was passing on it helped overcome the feeling like an old lady on it. The scooter was a Luggie mobility scooter am not a seller of them so google it lol. I do have a wheelchair but it sees rare use I think when my walking gets too bad I will get a power wheelchair with the fact that by then my arms wont be strong enough or cause as much tiredness as walking for a manual chair. Sorry for the long post btw

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