Monday, March 31, 2014

Welcome to the My Becker's Story blog!

Welcome to the My Becker's Story blog!

Join me as I share my Becker Muscular Dystrophy Story.


My name is Brad Miller I am a freelance journalist living with Becker Muscular Dystrophy, a condition which limits my ability to walk and gets progressively worse over time. I created the My Becker's Story blog in 2010 to share my story and to help raise awareness about Muscular Dystrophy. Along with sharing my story I also raise awareness about accessibility and the issues people with disabilities face. When it comes to the My Becker's Story blog even though the focus is on Becker's Muscular Dystrophy I also want to encourage those affected by other conditions even other forms of Muscular Dystrophy to join in as well. I truly believe when we join "Together" we can make a difference in our communities and raise even more awareness about Muscular Dystrophy and the issues people with disabilities face. The main focus behind the My Becker’s Story blog is to tell my story in hopes that it will somehow help those living with Becker’s Muscular Dystrophy, as well as their families and friends.

What people are saying about the My Becker's Story blog:


"Hi there, I also suffer from BMD. Just read the blog and the first half is like reading my personal history!!"

"I ran across your spot today, you sure have a lot on here I will have to check in a lot. I also have BMD and everything you say resonates deeply."

"I am also in my mid-30's with Becker's from the UK so thought i'd join and say hello! Struggling with all the same things as mentioned in the blog!"

"I am new to this group. Just want to say it is nice to meet people who understand."

 "I love your blog and it is nice to know there are others out there facing the same challenges as I do each and every day."

If you would like to read my personal story about growing up with Becker Muscular Dystrophy please click on the image below.


When it comes to living with Becker's Muscular Dystrophy I intend to take what I have been through in my life and some how use it to help those going through a similar situation. When it comes down to it the main idea behind My Becker’s Story is to help those like me who are living with Becker’s Muscular Dystrophy, by creating a place for us to connect. I truly believe that we are in this "Together". And I believe that with every one’s help that together we can help raise awareness about Muscular Dystrophy around the world.
  

The Walk for Muscular Dystrophy



Team Brad at the 2013 Durham Region Walk for Muscular Dystrophy

 Along with sharing my story I also aim to make a difference in my community. Since 2010 my friends and family have joined "Team Brad" in support of my efforts to raise funds that benefit people like me who are living with Muscular Dystrophy. The Durham Region Walk supports Muscular Dystrophy Canada’s mission to enhance the lives of those affected by neuromuscular disorders. To learn more please (Click Here)

Thank you for visiting the My Becker's Story blog!


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Tuesday, March 25, 2014

Best ways to raise awareness of Becker's Muscular Dystrophy

The best way that we can help raise awareness about BMD is to get behind and support some of the initiatives that are already in place. Last year we celebrated the first ever BMD Awareness Week and it turned out to be a great opportunity for all of us to join together to raise awareness. It must be known that BMD Awareness Week is not one man's project its all of ours, and we have to think of ways to make it bigger and better. I am sure like me we all see that the Duchenne community is a united force and we have to be as well. Think of it this way BMD Awareness Week is all of ours - it's our Awareness Week. Our only goal is to help raise awareness and I am sure all of us agree that we need to get the word out there. We all need to work "together" to come up with great ideas to raise help us raise awareness of Becker's Muscular Dystrophy.
 
It's really about supporting each effort including the BMD Project which is about all of us. It's about helping others affected by BMD. So far the support has been amazing and we thank those who have already taken part in filling out the survey. It's a project we are all authors of - it's not about any one person it's about all of us. We really have an opportunity to make 2014 a big year for raising awareness so everyone has to take part. We have come a long way in the last 5 years we just have to keep going. Let's unite and work together and I am sure we can pull this off. I am sure we all agree that every BMD blog/group/page has its purpose and we need to support each and everyone of them. If some one posts about BMD show your support by liking and share their posts. This helps us all raise awareness. If there's one thing the DMD community has going for them its their willingness to support each and every effort and yes many people have been very supportive of all things BMD which is great. We just need to take it to the next level.
 
Think about it every post on any Duchenne Muscular Dystrophy page always gets close to 100 likes and shares. There are hundreds of us living with Becker's out there so why can't every BMD related post get 100's of likes and shares as well? We really need to work together and like and share every BMD related post we find on Facebook the same way those in the Duchenne community do. We really need to speak about every part of living with BMD. Every part of our daily lives including our challenges and successes. We need to talk about everything so people understand the issues we face. If someone mentions a challenge they are currently facing offer them advice. We are all at different stages of living with BMD which gives us an amazing opportunity to learn from each other. As you know our community grows everyday so let's take advantage of what we already have which includes: The BMD Conference, BMD Awareness Week, the BMD Project and each and every BMD blog and Facebook page that is already out there.

In 2014 we have a great opportunity to raise awareness so let's work "Together". 

 
 Related Posts:
 
 
Join the My Becker's Story blog on Facebook today!
https://www.facebook.com/mybeckersstory
 

Tuesday, March 11, 2014

Durham Region Walk for Muscular Dystrophy Ambassador


When it comes to living with Muscular Dystrophy I have been on a mission to raise awareness in my community. It was five years when first joined my local Walk for Muscular Dystrophy. I am happy to announce that for 2014 I have been asked to be the Durham Region Walk for Muscular Dystrophy Ambassador. It is a true honor to have been chosen as this years Ambassador. My aim will be to support Muscular Dystrophy Canada by sharing my story to help raise awareness and funds to make a difference in the lives of everyone affected by Muscular Dystrophy.

A look back at my involvement with the Durham Region Walk for Muscular Dystrophy

It was in 2010 when I first joined the Walk for Muscular Dystrophy after some encouragement from my sister to join. At that time Team Brad was formed and ever since that day the event has become one that I look forward to participating in each and every year. The best part is having the chance to join together with my family and friends. After all the Walk is all about showing your support for a family member or friend who is living with Muscular Dystrophy. Many of you might already know that one of the main reasons why enjoy participating in the walk is due to the fact that I was diagnosed with Becker's Muscular Dystrophy at the age of 10. It also gives me the opportunity to connect with others and raise awareness about neuromuscular disorders. As a young adult living with Muscular Dystrophy I believe that there is no better way to show your support and raise awareness than to join your local walk.


What I enjoy most about being involved in my local walk is the ability to be a part of a team. I believe that creating a team is one of the best ways to get people excited about the event and more importantly it goes a long way in helping us raise awareness in our communities. On the day of the event it really means a lot to me to see so many people joining together in support of family members and friends who are living with Muscular Dystrophy. I know firsthand how much it means to me to have my family and friends support Team Brad by joining us at the Walk for Muscular Dystrophy each and every year. On top of that over the last few years of attending the walk I have made so many great new friends. Like many I am looking forward to seeing everyone again at the 2014 Durham Region Walk for Muscular Dystrophy on May 25th.

2013 Durham Region Walk for Muscular Dystrophy planning committee
In 2011 I joined the Durham Region Walk for Muscular Dystrophy planning committee in an effort to help support an event that is so close to my heart. One of the things I look forward to the most every year is the ability to join with others in my community who share a common goal of supporting Muscular Dystrophy Canada with the hopes that one day we find a cure for all forms of Muscular Dystrophy.

Consider supporting Team Brad

Help Team Brad make a difference in the lives of over 50,000 Canadians living with Muscular Dystrophy by making even a small donation towards our fundraising goal. Whether you are in Canada the United States or even the UK you are encouraged to make a donation in support of those living with Muscular Dystrophy. Please click on the Team Brad image below or simply visit http://muscle.akaraisin.com/DurhamWMD2014/TeamBrad2014 to make a secure online donation. Thank you for your support in 2014!

Tuesday, March 4, 2014

Family & friends need to understand the issues we face

When it comes to living with a disability I am sure I am not the only one who has to deal with people in our lives who refuse to take the time to learn even a little bit about the issues we face. I believe it is especially important for our family and friends to better understand what we might go through on a daily basis. This is one of the main reasons why I started the My Becker’s Story blog. Now it must be known that I am not looking for sympathy by sharing my story just a little understanding. Honestly long for everyone in my life to one day fully understand what it means for someone to live with Becker's Muscular Dystrophy. The first thing I would like them to know is that it causes progressive muscle weakness. Which means I will slowly lose the ability to do some things most people take for granted. Simple things like climbing a set of stairs, getting up from a chair or even walking. Still today there are those out there who simply can't understand why I have such difficulties doing things other people do without even thinking twice. Now before I go any further I need to make it clear that despite having BMD I am at a point in my progression where I can still walk - though I do face a few difficulties with climbing stairs and lifting heavy objects. At this point I could actually be considered to be living with a hidden disability. Sadly even in these days and times many people are still making the mistake of automatically assuming that people with disabilities are much older people who use canes, walkers and wheelchair to get around. These are the types of people who have trouble understanding the issues those of us living with hidden disabilities face. This is when the famous old saying don't judge a book by it's cover needs to come into play.

Why it is important for family & friends to understand the issues we face?

Is this really too much to expect from the people in our lives? After all if they don't spend a lot of time with us how can I expect them to understand any of the difficulties we face? To be honest there are people in my life who have no clue as to why I have difficulties climbing stairs or doing some things most people can do with little to no effort. The truth is many people take the everyday things they are able to do for granted. Most people couldn't even imagine losing the ability to climb stairs or walk long distances. But how can I really expect them to understand what I am going through when they aren't there when I am having a weak day or when I slip and fall then struggle just to get back up off the ground. The point I am trying to make is that it's a little frustrating when some of the people in our lives refuse to take the time to understand what we are going through. Sure there are people who might be wondering why this is so important to me. Especially those who live their lives saying that I simply shouldn't care. Sure it might not matter when it comes to complete strangers but when it's comes to the people in our lives I believe this is very important.

What frustrate me the most about having a hidden disability.

When it comes to my frustrations part of the problem is that we live in a world which is obsessed with judging people by the way they look. So when it comes to people with physical disabilities the general public expects to see some visible sign that you have one. So if they don't see you using a cane or some other form of a mobility aid they automatically assume that you must be fine. This is a major source of frustration for many of us who don't fit some peoples stereotypical view of people living with disabilities. I pretty much face this issue every day especially when it comes to using accessible parking spaces. I actually remember a time once when I parked in an accessible parking space and when I returned found a note attached to my windshield. Some person actually took the time to write a note telling me that I had no right to park there as these spots are reserved for people with disabilities. It’s in these moments I am blown away by the level of some people's ignorance. And it's even worse when it comes from people you know. That is why I wish everyone I knew understood even just a little about Becker's Muscular Dystrophy. Let's be honest many of us actually do care about the way that people think of us - especially when it comes to our family and friends. Maybe others have reached the point where this doesn't bother them so much any more. But I can only speak from my experience and I know that there are others out there who feel the same way as I do. Those who may be able to relate are those who have had people question what you do all day. Especially if you are no longer working. I have actually heard stories from people who say that some in their families simply believe that they are lazy or just pretending to have a disability. They have expressed feelings of being upset that anyone would view them in such a negative way. At this point in my progression I can fully understand where they are coming from. Now sure this might just be an issue those with hidden disabilities but I am sure others living with progressive medical conditions can relate. When it comes down to it all we really want is for the people in our lives to better understand the issues we face not to gain sympathy but just a little understanding. After all we are good people who aim to live our lives to the fullest no matter our limitations.

So if someone you know is living with Muscular Dystrophy or any other condition please consider taking the time to learn more about the issues they face.


Related Posts:
My personal story growing up with Becker's Muscular Dystrophy ,
Living with Muscular Dystrophy and dealing with "Weak Days" ,
A look at the most Challenging part of my Day ,
Living with BMD and difficulties using Stairs ,
Living with a Disability & Suffering a Work related Injury &
Muscular Dystrophy Perspectives: Brad

Tuesday, February 11, 2014

Limb-Girdle Muscular Dystrophy Martin Hywood's Story

When it comes to sharing my story it has led to many opportunities to connect with others around the world whose lives have also been affected by Muscular Dystrophy. This would include those living with Duchenne, FSH-MD, CMT and thanks to Martin Limb-Girdle Muscular Dystrophy. Again as the My Becker's Story blog enters its fifth year it is my plan to raise awareness about the many different forms of MD by inviting others to share their personal stories. Recently I asked a good friend of mine Martin who is living with Limb-Girdle Muscular Dystrophy to share a little bit about his story. After reading his blog post myself I have come to understand that some of the issues we face are not that different. The hope with this blog post is to show the world that we are truly in this "Together"

Limb-Girdle Muscular Dystrophy - Martin Hywood's story
 
So I’m sat here, watching the rain hit the window and seeing the bead of water race down the pane engulfing other drops as it goes speeding up until it gets to the bottom and disappears. Slowly I hear an increase in volume. II realise that I’m being spoken to. I’m sat in a consultant neurologist’s office in a very cold and wet Oxfordshire. I’ve just been diagnosed with limb girdle Muscular Dystrophy and I’m devastated. My whole life just changed. I’m surrounded by my whole family, yet this is the loneliest I’ve ever felt in my life.

The limb-girdle group of muscular dystrophies is so called because generally they cause weakness in the shoulder and pelvic girdle, for example the big muscles around the top (proximal) part of arms and legs (hip, thigh and shoulder muscles). Usually weakness of the legs is noticed before that of the arms.

On this day my older brother, Simon, is also diagnosed with the same condition. All that he goes through I will see, with every expectation that my body will do the same thing. Simon was diagnosed on the same day, but his condition is progressing more rapidly. I will see one of my best friends slowly but surely rely on walking sticks and become very slow in all movement. I will mostly feel burning and feelings of paralysis in my legs, constant nerve pain across my shoulders, neck. I will be tired each day by 16:00.

Now before anyone thinks this is all very melodramatic and may sound exaggerated, it isn’t. This is how it is, But people hear worse things in consultants rooms in hospitals all over the world and it doesn’t take too long before I actually feel grateful that the diagnosis was this and nothing worse. Also to tell you a little more about I and Simon’s relationship, it is as close as two brothers could be.

Simon would be the one who took me to the cinema with friends as soon as he’d passed his driving test, rather than leave me behind. He’d pick me to play football knowing very well that I was useless. We would prank each other at every opportunity, something we have always done. There are four brothers in our family and one sister and we were, and still are, little terrors!

Our condition has not changed the dynamics of our relationship at all. As soon as we were diagnosed and at this time we had three dogs in the family, two boxers and Simons very own Rhodesian Ridgeback. Now I decided to encourage one of the boxers to steal Simons walking stick on demand, chew it or hide it, leaving him stranded, absolutely stuck. With this came a reaction and Simon simply trained his dog to chase me and pin me down on demand to the point when one day I fell down a flight of stairs with this Ridgeback stood over me.
It’s always been this way and I can imagine it always will be. Just recently Simon called me to ask if I was going out that evening and I tried to explain that I couldn’t because the night before I had stood up, lost my balance, fell down and landed on our coffee table which was covered in glasses. Not anymore! As I said, I was trying to explain this in a phone conversation which ended up with Simon hanging up due to laughing so much to the point of tears. He truly is a great brother. So it’s a horrible thing but we deal with it the best way we can and most of the time that is to laugh in its face (and each others!) What’s happened since the diagnosis 17 years ago?  

Well I’ve surprised myself and lots around me by still being able to walk unaided and we’ve gone on to raise awareness about the condition, raised vital funds and we’re trying our best to let others know about the other strains of Muscular Dystrophy. As our Marathon running other brother, Andrew says, we are very lucky to have each other around to help if needs must.

So there you are, that’s how we deal with it. It may not be orthodox or how some others may deal with their siblings but that’s just who we are. Disabled or not, you should still be able to laugh at each other AND most importantly with each other. 

17 years ago, I knew nothing about Muscular Dystrophy, today I work in Pharmaceutical I.T. processing paperwork to do with Muscular Dystrophy clinical studies and I’m only a few days away from becoming an Advocacy Ambassador for the Muscular Dystrophy Campaign in the U.K.  
Martin Hywood