Wednesday, August 17, 2016

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)

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Tuesday, August 9, 2016

Living with Muscular Dystrophy & dealing with fatigue

Over the last few years I have been struggling with low energy and it has been affecting my life in negatives ways. Lately I have been feeling a lot of muscle pain which tends to make me a little anxious, especially when I am having pains in my chest. I guess that these muscle pains are just a part of living with Muscular Dystrophy. Most times when I am having these chest pains I jump to the conclusion there's something wrong. But I have already had an in-depth heart check up which included an echo-cardiogram. At my follow up appointment I was told everything looks great so I really have no reason to be concerned. But most days I feel sluggish and tired and even off balance at times. Sometime when I am standing I wish I could sit down, sometimes I feel so tired I even wish I could lay down and take a nap. Maybe part of the problem is that I am not getting a proper nights sleep. Now I do have sleep apnea and use a CPAP machine every night but I shouldn't feel this way. Maybe it's due to the fact that I am unable to stretch out as much as I would like. 

Being married I am sure other couples who sleep in a queen size bed understands that space is limited. That is why I would prefer a King size bed but unfortunately I live in a very old apartment building with very small bedrooms. So I make due but it does seem to play a role in me feeling tired most of the time. It also doesn't help that the people in the apartment above our keep us up all night moving furniture along with stomping and dropping things on the floor above at night long. It is sad that some people are that inconsiderate. I guess there are a lot of things that could be causing all the tiredness. After all it is important for those of us with Muscular Dystrophy to get a good night sleep as it allows our muscles to recuperate. As we all know that is the whole point in sleep - for us to rest our bodies so we have the energy to face another day. 

Now I have been to the doctor many times had blood work completed and everything comes back just fine. I have come to the conclusion that maybe I have low testosterone. The one thing that is holding me back from getting it checked is the $40 fee I would to pay for this blood test. A real waste of money if they come back and say that it's perfectly fine as well. So is this a part of living with Muscular Dystrophy? After all fatigue is a major part of Muscular Dystrophy. I really want to find out what the problem is. So I have started taking vitamins but they are only good for maintaining health. Then you have those out there selling a cure for Muscular Dystrophy, but it seems they are more interested in selling you products in order to create a source of income for them selves. Sure there are many things out there that can make you feel better but I wouldn't call them cures. If feeling tired all the time is a part of living with Muscular Dystrophy then I guess I just have to accept it. Now if you are living with Becker's Muscular Dystrophy and a lot of this sounds familiar, please feel free to share some tips as I believe that others living with the same condition can always provide each other with the best advice.    

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Sunday, June 19, 2016

A fun & interesting day at Canada's Wonderland

When I was growing up in my teens I would often join my friends at a local amusement park known as Canada's Wonderland. I have many great memories of hanging out with my friends riding roller coasters and various other rides. But that was over 20 years ago now. Recently though my wife and I ventured out to Canada's Wonderland with another couple, a place we both hadn't been to in about 10 years. To be completely honest I really was't that enthusiastic about spending the day there, but sometimes you sacrifice for the ones you love. Now the one reason I was a little apprehensive about going, was due to all the physical challenges I faced the last time we went to Canada's Wonderland. But I kept a positive attitude about thing's, and went with the goal of having a good time and even planned to go on a few rides.

Thankfully our day didn't start that early in the morning and I was happy that I didn't have to drive. We arrived at Canada's Wonderland around 12 PM and after paying $20 for parking we found an accessible parking space and made our way into the park. It is a pretty impressive place and when you first arrive inside you are greeted with a massive water fountain that leads to wonder mountain. We were all happy that it was a beautiful warm day and I was thankful for the cool breeze. Our first stop of the day was the roller coaster known as Dragon Fire a ride I decided to skip out on. Up next was a very intimidating roller coaster named Leviathan, a high speed coaster known for being a major thrill ride that I also decided to skip. While I was waiting though I did noticed that this ride offers an elevator/lift for riders with disabilities. Now as far as accessibility is concerned they do a pretty good job allowing those with disabilities who can't climb the stairs to access the rides. In some cases you simply go up the exit ramp and the ride attendant will assist you in getting on the ride. A great system that I actually took advantage of on this day when I went on an old wooden roller coaster known as the Wild Beast. I am sure those who ride a lot of roller coasters would agree that the old wooden roller coasters sure give you an exciting high speed ride. It was a lot of fun and when the ride came to an end I sure did face major difficulties getting back out. But I am happy to say that even though it was a real struggle I did survived.

After this I did skip out on a few more rides, that is until everyone convinced me to go on a high speed coaster known as the Vortex. So I went up the accessible exit ramp and waited till my wife got to the front on the line so I could meet her. It was a really difficult ride to get on to but I was looking forward to the ride. Now it did start off very slowly then when it rounded the corner it picked up speed at a high rate which took me by surprise, next thing I know I am being tossed around like a rag doll with my head flopping side to side. I found myself just wanting the ride to be over, but the next 15 seconds of the ride seemed to take forever. I was very thankful the second the ride came to a stop. It actually felt like I had just taken a physical beating. Then when it came time to get out I struggled like I had never before. I could barley stand on my feet as one of my legs almost gave out. I even ended up having trouble walking for the next minute or two after the ride. This was a major wake up call for me, in this moment I realized that at this point in my life I can no longer handle the stresses these types of rides place on my body. So my advice for anyone with a disability or any medical condition considering going to a local amusement park is to fully think it through. After all their are actually signs posted outside of each ride prohibiting those with certain medical conditions from riding. On this day I would have to say I learned my lesson and I now know that high speed rides at amusement parks are not a good idea for me.


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Wednesday, June 8, 2016

Travel Review: Four Points by Sheraton Niagara Falls

When it come to staying over night in Niagara Falls, Ontario Canada - depending on where you choose to stay it can get quite costly. That is why most people planning a getaway to Niagara Falls now look for great deals on webpages such as Groupon. That is exactly what my wife and I did and this resulted in us being able save a lot of money. We were able to reserve a city view room at the Four Points by Sheraton located on Fallsview Blvd, which included a $70 food voucher to Ruth Chris Steak House. We were pretty excited when we arrived as this would be our first time staying in a more upscale hotel. This year we were joined by a friend who stayed in his own room at the hotel as well. Check in went perfectly, I was even able to find an accessible parking spot directly in front of the main entrance. So right away there was no worry about parking. Eventually we headed up to our room to freshen up before we headed out for the evening. Our plan was to relax for a bit then head over to the Casino, then in a few hours go to dinner at the Ruth Chris Steak House. I knew it was going to end up being a long day, but I was thankful knowing that we had a nice hotel room awaiting us that I really looked forward to sleeping in at the end of our day. 

Lord of the Dance
So our night began at Ruth Chris Steak House for dinner, the $70 voucher went a long way in helping cover the costs of an expensive dinner. The food was absolutely amazing and the portion size was perfect, almost too much to each. We all left feeling pretty full after a very satisfying dinner.
After a short rest in our room it was time for me to meet up with our friend to go see the Lord of the Dance show. Thankfully ahead of time my friend asked for accessible seating, but when we arrived I was a little surprised to find one small step down to my seat. Thankfully it was too much to deal with and worked out just fine. After the show we met back up with my wife and we went to into the Casino. Best of all we had been given a free $25 credit to play in the Casino simply for booking our stay through Groupon. Eventually I was feeling pretty tired but I had no worries as I knew our evening would end with a good nights sleep back in our hotel room. At least that was the plan but it didn't happen. This is when our stay at the Four Points by Sheraton became a very unpleasant one.    

This is due to the fact that the Four Points by Sheraton is located directly across from an outdoor night club known as the Bull Market. This night club plays music so loudly that all you can hear is the bass pumping in your hotel room. We tried our best to fall asleep but the constant pounding of bass made this an impossible task. So I did called down to the front desk to ask if anything can be done and to maybe get and idea of how long this might last. I was told I was not the first person to complain and that there was simply nothing they could do. Sadly the music kept getting louder and it even went past 2 am actually ending a half hour later at 2:30 am. At that point we were finally able to fall asleep, a whole 2 hours after we hoped to be enjoying a good nights sleep. In the morning we awoke extremely tired and in my case I was feeling physically weak and exhausted. When we checked out the front desk clerk asked us how our stay was. So we told her and she simply said she was sorry and that they have been having an issues with the club ever since it opened three month ago, but that there was nothing they could do. She also told us that other guests had called the police, but that they can't do anything either. I am guessing that certain bylaws actually allow businesses like the Bull Market to play loud music all night long.

This experience did end up ruining our stay at the Four Points by Sheraton, a nice hotel that I wish warned us of this issue ahead of time. Little did we know that the biggest mistake we made when reserving a room was choosing the city view. I do feel pretty bad for the Four Points by Sheraton as I am sure the Night Club across the street will have an affect on their business. After our experience we now know that the Four Points by Sheraton may not be the best place to stay if you want to have a good night sleep.

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Wednesday, June 1, 2016

Photos - 2016 Durham Region Walk for Muscular Dystrophy

On May 29th I joined the 2016 Durham Region Walk for Muscular Dystrophy. This year Team Brad was also known as Team Laps4MD. It was so awesome to be joined by family and friends as well as a few supporters of Laps for Muscular Dystrophy. It was hot day but the weather was perfect! This year we were able to raise just over $1000, with the grand total raised by those supporting this years event exceeding $50,000. Again this year I joined the Walk planning committee, a great group of people dedicated to making this years event a huge success! A huge thank you to Joey McColm of Canada's best Racing Team for bring one of his race cars to display at the 2016 Durham Region Walk for Muscular Dystrophy. To those who join Team Laps4MD thank you! Please enjoy a few pics from the day found below.
Brad with Laps4MD supporters Joey McColm, Kyle Tasker, Matt Garwood & Rob Murray
The 2016 Durham Region Walk for Muscular Dystrophy planning committee
Thank you volunteers!
Laps4MD supporters Canada's Best Racing Team.
Steven Richardson with Laps4MD supporters who join us for the walk this year.

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