Monday, July 17, 2017

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 and I was diagnosed with Becker Muscular Dystrophy at the age of 10, 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 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.
  

Laps for Muscular Dystrophy

Laps 4 MD Making a difference - One lap at a time.
 Along with sharing my story as a child I grew up with the hope of one day becoming a race driver, but due to the physical limitations of Becker's Muscular Dystrophy was unable to pursue this dream. Being unable to participate in team sports as a child I always longed to some how find a way to be involved with Motorsports. In 2012, I came up with a unique way of raising awareness & funds for Muscular Dystrophy - which allows me in a way to live out my Motorsports dream. This is when I founded Laps4MD. A charity effort where racers across Canada & the USA donate $1 for every lap they lead benefiting Muscular Dystrophy charities.

To learn more please visit www.LAPS4MD.com


Thank you for visiting My Becker's Story!


Tuesday, July 11, 2017

Is Differently Abled or Abilities really better than saying Disability?

When it comes to the use of the word "Disability" some now take offence to it’s use. I was once on an interview for a position with a company that works on the behalf of those with disabilities, at one point I used the word disability and was quickly told that it is inappropriate term. I never did get hired for the job quite possibly for uttering a word that some now view as offensive. There issue with the word is that for them it represents something negative. So those behind the movement to have us stop saying it want us using different words - ones that they hope will result in people viewing us in a more positive way. To them for some reason the use of the word disability only helps to reinforce negative stereo types.

Now I am sure we can all agree that one of the most offensive words to use these days would have to be handicapped. A word that at times has been used to make fun of us but thankfully these day it’s a very unpopular term. Some within our community today simply want us to be referred to as the differently abled which is a term that was introduced in the 1980’s. But it’s use has never really caught on as many people don’t like the fact that it still suggests that we are somehow different. Another more popular term is disabled but still some also have issues with it’s use as they believe people outside our community also view it in a negative way.

Current Popular Terms

A much more popular thing to do today is to some how incorporate “abilities” into any word being used to describe those with a disability. Locally there is a place called the abilities centre which is a place for people of all abilities which is great. Then you also have the abilities expo along with magazines which is also a great use of the word. But in a way, it’s not the best word for us to use when telling others, we have a disability. In all honesty if we use it during an interview or while trying to explain our issues the use of the word abilities might confuse some people. The first thing that comes to mind when someone tells me the have abilities is that they have certain talents or simply that they think have super powers. After all disabled or not don’t we all have certain abilities? So, in a way it’s also not the best word for us to use.

So where does this leave us?     

With no acceptable term these days what are supposed to do? Go back to it being okay to use the word disability? As for differently abled aren’t we all differently abled as everyone has certain abilities & talents. So, in my opinion it’s also not an acceptable term. Then you can look at the word abilities which makes a great name for a businesses or expo’s catering to people with disabilities, but as a term used in social gatherings when trying to explain our physical challenges it’s not good at all. At times, I have used the term physical limitation’s but that can also be viewed as an offensive term to some. The truth is none of us really know what to say anymore especially in a time when political correctness is king.

 The truth is maybe there is no acceptable term to use but for me when sharing my story and raising awareness I know when I tell someone I have a disability they know exactly what I mean. So as of today, I will continue to use the word disability. As for me and many of us with disabilities it’s actually a word that represents strength and determination to face life’s challenges head on. So, as you can see maybe it is a positive word for us to use. In a way if you have a negative view of the word disability you might just be the one with the problem. 

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Friday, June 16, 2017

The challenges of being a man with a physical disability

When it comes to slowly losing your muscle strength at times it can mean losing the ability to do many things others take for granted. Since I have lost a lot of strength in my arms over the years this has resulted in an inability to carry anything that is too heavy. Things many people can carry with ease such as a jug of milk or even a case of water. This means in many situations my wife ends up being the one carrying the heavy load. This is one of my biggest frustrations whenever we go grocery shopping as this can result in me looking like a jerk. Especially to those who are simple observers as they look at me and wonder why this man is making his wife carry everything that is heavy. As many in society expect the man to do all the heavy lifting. But I do understand that these people have no real clue about my physical limitations, as they see a man who may look perfectly fine in their eyes. Believe me at times I get the stares from total strangers looking me up and down as if they are judging me thinking there's no way this guy has a disability. This is just a part of living with a hidden disability and it has been something I have been dealing with since I was eighteen years old - so it's really nothing new. The truth is some people have a stereotypical view of what someone with a disability should look like and most days I don't fit that mold. So, when they see me not doing what is expected of a man especially when it comes to doing all the heavy lifting they might make the mistake of judging me and thinking I am lazy. I really can't blame them and sure it shouldn't bother me as to what people think as I already know that they simply don't understand.

 Still I do feel bad as I am unable to physically step up and help my wife and I hate the fact that she end's up doing all the heavy lifting. I am so thankful that she understands but to the untrained eye many people view me as a regular guy when they know nothing about my story. It's the same thing when total strangers give me dirty looks when they see me parking in an accessible parking space. Even other people with disabilities at times can be very ignorant to the fact that not every disability is visible. But they are not there when my leg gives out causing me fall or when I trip over a simple pebble on the ground, it's the main reason why I tend to walk with my head down looking for anything that may trip me up. At times it makes me look anti-social since I am always looking down. The facts are only those close to us at times can truly understand our physical limitations, but all too often total strangers make snap judgments simply because they don't know any better. They see the international sign for accessibility being someone in a wheelchair and automatically think that is what everyone with a disability looks like. The facts are ignorant people will always judge others and sometimes we make the mistake of caring what they think. Currently I am slowly becoming okay with other's seeing my wife carrying the things I find too heavy. If they look at me as a lesser man or think I am not a stand-up guy because of this, I don't let it bother me as I can't expect everyone to understand my situation. After all I can admit I may look like a tough guy who can carry my own weight but little do they know looks can be deceiving. In the end, it is truly unfortunate that in this day and age some people still have a stereotypical view of people with physical disabilities. 


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Thursday, June 15, 2017

How losing the ability to climb stairs has affected my life

When it comes to living with Becker’s Muscular Dystrophy at some point in our progression losing the ability to climb stairs eventually becomes a reality. In recent years, my inability to climb stairs has been having a major impact on my life. Now when it comes to where I live if there isn’t an elevator in the building I have no other choice but to live on the first floor. Even though I may look perfectly fine and still have the ability to walk my leg muscles are so weak that climbing stairs is now near impossible. If I could afford to I would move into a more modern building with an elevator so I can live on whatever floor I choose. A place where my wife wouldn't have to go down two flights of stairs to access the laundry room. I actually miss the days of being able to help out my wife by doing a bit of laundry while she is at work. Even with my issues I still do my best to help out around the home after all sitting around all day doing nothing isn't really that good for your health.

  Challenges visiting family & friend's

 When it comes to visiting family, or friends my inability to climb stairs has created a few problems. Just recently someone we know bought a townhouse with the only bathroom being located on the second floor. The last time we were there I needed to use the bathroom so I went up the stairs on my rear end step by step, then going back down in the same way. After this I could barely walk as my leg’s felt like rubber as they kept wanting to give out on me. In the moment, I was really frustrated knowing when we visit next time I would not be able to use their bathroom. So, at this point in my progression with Muscular Dystrophy it is now affecting my ability to get together with friend’s and family. I really wish when it came to hanging out with friends that they could simply come to my place. Only problem is that my current apartment is simply to small and better suit to someone who is single. And as my condition worsens it feels as if my apartment is getting smaller by the day -  especially in our bathroom if you make the wrong move your knee will smash into the counter. I even
 have the bumps and bruises to prove it. But due to the high cost of rent in my community a move currently isn’t even an option.

 The Biggest Wake-up Call of my Life

 My worst experience came a few years ago, when my wife and I attended a Josh Groban concert. At the time, I was still in denial concerning the progression of my Becker’s Muscular Dystrophy and that night I paid for it dearly. That night my troubles all began when I went to stand up after three hours of sitting in a very small and tight space. It is truly unfortunate that at almost every concert venue the seating they offer is usually very tight leaving you with little to no room to stretch out your legs. I guess not being able to stretch my legs out resulted in my legs became so weak that I just couldn't get up. In that moment my legs had lost all their feeling and strength. This ended up creating an awkward situation as I had never experienced this before. It was as if my legs weren’t even there anymore. Thankfully after a few minutes I was able to crawl up the steps on my hands and knee’s and use the railing at the top to stand back up. It was more than a little embarrassing. This whole experience acted as a wake-up call. This is when I also realized that accessible seating would have made a huge difference. It was in that moment I knew that stairs where quickly becoming my worst enemy. Fast forward to today and I avoid stairs at any cost as a simple fall while using them could end very badly. In many cases in my situation a broken leg would more than likely end with me never being able to walk again. Now, as I continue to lose strength in my muscles I know overtime other challenges will come my way and I hope I am ready to face them. As of today, the reality is that stairs are now my worst enemy.


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Tuesday, June 13, 2017

Top 10 Must-Haves for those living with Muscular Dystrophy

Dishwasher

At times having Muscular Dystrophy can result in making household cleaning a little more challenging. Especially when it comes to cleaning dishes which can involve standing for a long period of time and the over use of our hand and arms muscles. That is why so many of us benefit from owning a dishwasher. In my situation, this has made life so much easier resulting in me only having to load and empty the dishwasher. This took away the physical demands I was used to dealing with when washing dishes the old-fashioned way. When it comes to living with Muscular Dystrophy having a dishwasher is a necessity. That is why I am so very thankful for my dishwasher. Cost $500 and up.

Side-by-side Fridge

A simple thing such as owning a side-by-side fridge can really benefit those with Muscular Dystrophy. The ability to place things on specific shelves so we can reach them can really help in eliminating the risks we can face when bending over to get something from the back of the fridge. To me these side-by-side fridges are a much better design especially for anyone living with a physical disability. That is why I am hopeful that one day I will be able to have side-by-side fridge. Cost $1200 and up.

Side Swing Wall Ovens

When it comes to the kitchen one major obstacles at times at times can come when using your standard oven. Especially when placing a heavy casserole dish into the oven. Over the last few years I have nearly dropped many heavy dishes while trying to place them in oven which would end up create a real mess resulting in a major fire hazard. The best thing about any wall oven is that it can be set at a level that best suits our physical limitations. Now it does depend on the stage of progression with Muscular Dystrophy as eventually placing anything in the oven may one day be something we can no longer do. All I know is I sure wish I had one. Cost $1500 and up.


T-Fal Fresh Express 


Food preparation such as cutting up fruits and vegetable to even grating cheese can become a real pain in the arm for those of us with Muscular Dystrophy. The T-Fal Fresh Express is a product I really wish I had as it slices and grates for you automatically with it’s powerful 200W motor. Five cone options offer unprecedented choice: thin slicing (cucumbers, potatoes), thick shredding (beets, cheese), grating (parmesan), thin shredding (zucchini, carrots), and wavy slicing cut (radishes, hard cheeses). In my case simple tasks such as cutting up vegetables of grating cheese can leave my hands and arms feeling weak. That is why I would love to have a T-Fal Fresh Express in my home. Cost $79.99

Walk-in bathtubs


The facts are that many of us living with Muscular Dystrophy lose the ability to take a bath. Some may start to use specific lifts that still allow them to get in and out of a bathtub. But for those of us still walking even with a bit a difficulty due to the weakness in our arms and legs simply can’t lift ourselves out of the tub. That is why many of us would enjoy owning one of these walk-in tubs as a warm bath can really help our muscles to relax, elevating muscles pains. These tubs are simply the only option for some of us to have the ability to take a bath.  
Cost $4,500 and up.

Walk-in/Roll-in Shower


Having Muscular Dystrophy can result in difficulty lifting our legs even when stepping into the shower. Stepping in and out of your standard tub can put us at risk for a fall. Now as our muscles weaken it becomes increasingly important to eliminate these types of obstacles resulting in the need for a walk-in/roll-in shower. This is a real key to our safety in the bathroom especially when facing difficulties to stand up to take a shower. In my current stage of progression I would sure benefit from having a walk-in shower. Cost $800 and up.

Grabber/Pick-Up Tool

Many years ago, I started using a pick-up tool and it has truly changed my life. When it comes to living with Muscular Dystrophy the simple task of bending over to pick something up can become a real challenge for us. These types of tools are very beneficial for anyone facing these types of difficulties. I no longer have waste my energy or risk a fall when I need to pick something up. That is why owning a pick-up Tool is very important for those living with Muscular Dystrophy. 
Cost $29.00

Mobility Scooter

This compact scooter offers wireless disassembly which makes transporting it very easy. This one even allows you to change the look of your scooter with three sets of snap-on shroud panels in Red, Blue and Sahara. It offers a 300 lb. weight capacity, generous seat size and completely wireless disassembly. With easy steering, and a battery charging port which is conveniently located on the tiller under the control panel. In many situations disassembly would have to be completed by a spouse or friend. This is a great option for those dealing limited walking abilities. Cost $2200

Adjustable beds
At times the ability for use to become comfortable in bed can become very challenging. For some of us just sitting up in bed can take a lot out of us physically. Adjustable beds allow us to sit up of put our legs up with a touch of a button. A real benefit for those of us who need the extra help. Cost $1300 and up. 

Mini-Van/Accessible vehicle

Eventually, owning an mini-van or accessible van becomes a real necessity. As many people already know mini-vans at times are the perfect choice for those living with disabilities. Whether still walking or using a wheelchair full-time many offers the perfect step in height for those who may struggle to get in and out of much smaller vehicles. Many will find that they are fully capable of transporting many collapsible wheelchairs. Best of all many mini-vans on the market today are also able to be converted into a fully accessible van. 
Cost $15,000 (Used) $45,000 and up (New)
While many of the items listed above are very pricey and for some of us unobtainable they are things that would definitely help make our lives easier. It really all depends on your stage of progression when these items do become a necessity. In a way this is my Muscular Dystrophy wishlist.