Tuesday, February 14, 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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Monday, February 13, 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 I also aim to make a difference in my community. The goal is to have a positive impact on the lives of others affected by Muscular Dystrophy. As a long time Motorsports fan in 2014 I founded Laps 4 MD - a network of professional racers who donate $1 from every lap they lead in support of Muscular Dystrophy Canada. I am truly thankful for everyone supporting the cause helping to make a difference in the lives of those affected by Muscular Dystrophy. To learn more please (Click Here)

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

Saturday, February 11, 2017

Shouldn't we always treat other's how we want to be treated?

When it comes to treating other's how we want to be treated at time's it can be quite difficult. With all that happens these days on social media it's not uncommon to run into those who simply have a bad attitude. Throughout the years of sharing my story, I have met other people online who appear to simply be mad at the world. I have even met others with disabilities who are not the nicest people, a friend once told me that everyone has the ability to be a jerk, even those of us with disabilities. It reminds me of a time in my teens meeting a young man who was mad at the world because he had a disability. At the time, I couldn't understand why. But over the years I have learned that everyone is at a different stage in life and I can admit to at times being mad at the fact that I had Becker's Muscular Dystrophy. This was when I was in my twenties and looking ahead at all the challenges that I may face one day. At the time, I was feeling overwhelmed with the fact that my muscles will continually grow weaker taking away my ability to do things many people take for granted - like climbing stairs. So, I can fully understand some people's frustrations and why they might not feel like being so friendly all the time.

In life, I truly believe that no matter what we are going through we must still strive to treat each other with respect - this is when treating others how we want to be treated comes into play. Now I know the whole idea of treated others how you want to be treated might be a thing of the past but with the way things are in the world today, let’s hope more people consider treating each other better. Even in times when someone may have upset you or done you wrong.

Unfortunately, Sometimes I do fall short

Now I can admit I haven’t always been that good at following my own advice. At times, I have been guilty of not treating others with respect by not thinking things through - at times before I say or even post them. I can also admit I am far from perfect and even flawed at times. That is why I must apologize to those I may have offended through any of my actions as it is never my intention to hurt anyone. Sometimes we can have a brain lapse and at times this can occur when we are upset and not thinking straight. So, from now on I will start thinking things through and continue doing my best to stay focused on treating other’s how I want to be treated even if they don't show me the same respect! 

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Tuesday, November 22, 2016

My Becker's Story has been viewed over 200,000 times!

Over the last 7 years of sharing my story I have made many good friends and have even had the privilege of meeting others also affected by Becker's and other forms of Muscular Dystrophy. Being able to meet other's has helped to prove to me that we are all in this together. That is why I want to thank everyone who supports the My Becker's Story blog and my efforts to share my story. In the end, it’s all about raising awareness, not to bring the focus on myself but on all of us as a community.

So today I would like to thank everyone for their support of the My Becker's Story blog!

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Sunday, November 20, 2016

A look at: The Ontario Disability Supports Program

When it comes to people living with disabilities I am sure you will agree that we all have the right to get married or start a relationship without penalty. Sadly here in the Province of Ontario our Government has policies in place that actually end up punishing people with disabilities for getting married or for just living with someone they are in a relationship with. These policies govern the Ontario Disability Supports Program which was originally created to help those with disabilities in need of income support. The issue we are addressing today is their treatment of spousal earnings and the negative affect this is having on the lives of people with disabilities like me who currently rely on income support from the Ontario Disability Supports Program. 

Here are the facts:

1) Spousal earnings are clawed back under current ODSP regulations. This forces non-disabled or working spouses to assume the full financial responsibility of the person with a disability. A result of ODSP benefit payments being made on behalf of families rather than individuals. Structuring the benefit unit in this way has many negative consequences for people who receive ODSP. As this ends up “stigmatizing and robs recipients of their dignity and control of their own lives.” As you can see the current system penalizes those who live with a spouse and prevents many from forming new relationships that would be beneficial to their health and well being. 

2) Currently the base amount of income support married couples can receive where the non-disabled spouse is working is $1688, this before Spousal earnings are clawed back. They will also receive the $100 work-related benefit due to one spouse working bringing their rate of income support up to $1788. Another benefit they are eligible to receive is the special diet allowance which can also increase their income support by another $100-$200. Meaning some couples may be eligible to receive up to $1904 monthly. While this might sound good many actually will never even come close to receiving this amount once Spousal earnings are clawed back. 
3) Once Spousal earnings are clawed back many actually see their income support reduced by 50-60% each and every month. Resulting in many seeing their income support eligibility drop drastically from $1688 to only $800 of income support per month. As you can see in many cases, the treatment of spousal earnings ensures that families cannot earn enough income to escape poverty. This burden compromises the independence of people with disabilities and also weakens the capacity of the family unit overall to achieve and maintain an adequate standard of living.

The Ontario Government has just two options:

  1) They need to stop placing unfair financial limits on those with disabilities simply because they get married or are in a common law relationship. The time is now to make the Province of Ontario a place that allows people with disabilities who are on ODSP to equally contribute and be involved in every aspect of marriage even when it comes to finances. That is why the Province of Ontario must seriously consider adding Spousal earnings to the list of "exempt" forms of income.

2) Change the way Spousal Earning are treated! STOP reducing the amount of income support couples receive when the working spouse is earning less than $37,000 a year. Meaning that spouses earning $3100 or less a month would not see their disabled partners income support clawed back. With the cost of living in the Province of Ontario already being so high the reality is that couples need two incomes just to survive. Especially couples who face the extra costs that come along when one or both spouses are living with a disability. 

What people are saying about the treatment of spousal earnings by the Ontario Disability Supports Program:

"This is truly INSANE, can't believe how this system appears to work. I knew it had problems, but this is worse than I thought. We appear to be going backwards with social programs not advancing.Ontario government please find a heart!"

"I can tell you while I was married, this put a great deal of stress on the household that eventually ended our marriage."

"I am applaud, how can a person like me enjoy life with a person that has accepted me for who I am. Now when she see's this, she's not going to want to marry me!"

"This can lead to a person in an abusive marriage having no way to leave."

"I went on ODSP 4 years ago at that time I was happily married for 16 years and enjoyed life, I am now separated living in a room. I am getting worse instead of better." 

"I am reading about this literally a week from moving in with my girlfriend and her daughter.. I was overjoyed! As overjoyed as a person suffering from depression and several sleeping disorders, and deemed unfit to work could likely ever be. I was starting a family. Now all I feel is a knot in my stomach"

"This article has left me in tears. Finally I feel like I am not the only one who seems to see things as they are. My exact thoughts and words have been voiced."

"We all need to come together and fight these ridiculous "rules" that we're all getting screwed by. I'm totally committed to figuring all this out for everyone in need!"

 "I wish everyone would join the fight to fix this very very broken system."

There is no doubt that something needs to change!

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Retirement Savings forbidden for spouses married to someone on ODSP 

If you are currently receiving ODSP and are planning to marry or are in a common law relationship please call your local ODSP office. This is the best way for you to confirm how this might impact your income support.

Parts of this blog post contains information from the ODSP Action Coalition's report entitled "Dignity, Adequacy, Inclusion: Rethinking the Ontario Disability Support Program"