Join me as I share My Becker Muscular Dystrophy Story

Hi my name is Brad, a Canadian blogger living with Becker Muscular Dystrophy. Join me as I share my personal story, with a focus on life with a disability.

My Beckers Story includes stories from my childhood and teens up to me becoming an adult with Becker Muscular Dystrophy. A blog page where I hold nothing back by sharing each defeat along with every victory - while providing a few tips along the way.

I believe we can learn a lot from each other’s stories and encourage you to join in the conversation. As together we can raise awareness, not only about Muscular Dystrophy but the issues those with disabilities face. Issues which include accessibility, employment, mental health & everyday life challenges. 

So please join me as I take an informative look at life with Becker Muscular Dystrophy.

To start reading my story please (Click Here) or continue below!

So where does my story begin?

Well like every story, it’s always best to start at the beginning, when my life was changed forever, and this was in the mid to late 80’s when I was just 10 years old and was first diagnosed with Becker's Muscular Dystrophy. You see in the years before my diagnosis my parents had me join the local soccer team, and it didn’t take long for them to notice that I was having some issues keeping up with other children and this is where my story begins so please (Click Here) to continue reading my personal diagnosis story!

Please make sure to join My Beckers Story on Instagram & Facebook as well!

Falling with Becker Muscular Dystrophy when cats attack

A few weeks ago I had a scary fall which resulted from our cat who for some reason loves to attack my legs from behind. When she did this the other day I immediately collapsed falling back and smashing my tailbone directly on the hard tile floor. Instantly the pain was excruciating which left me with no other option but to lay there for a bit before having to drag myself across the living room floor to a foot stool which I used to climb back up - a next to impossible task with MD but thankfully I was still able to do it. After this I had no other choice but to lay in bed and rest which was hard to do since I was in so much pain.

The next day I woke up in even more pain and it was truly debilitating. Just getting out of bed was a major challenge but thankfully once I was standing it did relieve a lot of the pain but I could still feel it. This led to me treating the pain with Tylenol which really helped. Still while sitting down in bed or especially in my lifter chair any wrong move I would make resulted in massive amounts of pain which made it hard not to swear. All this was caused by our cat Dusty who I was very upset with at the time. I am sure we can all agree that a cat who likes to attack legs adds in a lot of risks especially for those like me living with weakened leg muscles resulting from Becker Muscular Dystrophy.

I truly hope the recovery from this injury is a quick one as being hurt certainly adds in a few more challenges when living with Muscular Dystrophy. Even through all this I still love our little kitty as she does bring a lot of joy into my life. I just wish there was a way to fix the issue with her attacking my legs. Thinking about it you could say I am in an abusive relationship. This just means I really need to be very careful in making sure she isn't sneaking up behind me ready to attack and possibly knock me down as another fall could end very badly especially while trying to recover from my current injury.

Now thankfully a few weeks later I am happy to report that I am doing a lot better. I may still feel a bit of pain but it's no longer excruciating and best of all I am now able to sit comfortably in bed and my lifter chair. My only hope is that in just a few more weeks I am fully recovered from what I view as one of my worst falls and injuries.

Often the stories of men with invisible disabilities get ignored

Often the stories of men with invisible disabilities get ignored or they simply don't get shared, still today the attitude of "be a man" exists and some think men should toughen up and just deal with it. We get labeled as complainers if we mention our struggles but I believe sharing my story is important as it can help encourage others to start sharing theirs.

Now at this point in my progression with Becker Muscular Dystrophy one day I could look perfectly fine, able to walk short distances but the next day desperately needing to use my mobility scooter. Like everyone I have my good and bad days. See, my needs can change from day to day but I still face plenty of ignorance from strangers when they can't easily recognize that I have a disability. It's certainly frustrating as I always seem to have run-ins with ignorant people whenever I am having one of those rare good days. 

It was only a few years ago on a good day when having an invisible disability got me into trouble with a grumpy old senior citizen, he saw me parked in an accessible parking space which set him off - instantly he went after me by insulting me very loudly in the parking lot of the local mall at this point I immediately tried to explain to him that I had Becker Muscular Dystrophy - he accused me of lying.

Eventually he said I know what your disability is and pointed to his head. Now off in the distance I did hear a person say that it wasn't worth my time arguing with this very ignorant old man. So at that point I turned and walked away though I felt threatened and unsafe as at any moment I knew he could have physically assaulted me and I simply wouldn't have the strength to defend myself.

It's in these moments you get very frustrated that some people are still so ignorant and have no understanding of the wide range of disabilities that exist and that not all of them are visible.

The Perks of being up early in the Morning

A perk of being up early this morning meant being the first customer in the grocery store! A short little trip to grab a few items for tonight's supper!

To be honest I get nervous going to the grocery store alone due to all the walking as I'd prefer the ability to use my mobility scooter. I think about what would happen if I fell? Would they have to call the paramedics to pick me up off the ground? It's a scene I've played out in my mind so many times.

Some may say I worry too much but living with a muscle-wasting disorder results in constantly having to think about your needs. With entryways and smooth parking lots of any store I visit being very important. As even the smallest incline can cause me to trip and fall so not being able to use my mobility scooter means for now having to avoid certain stores.

Another concern when visiting a store or event is someone unintentionally bumping into me as the slightest bit of contact can result in me collapsing & falling to the ground. Actually a few years ago while playing a game with friends someone hip checked me - I instantly fell to the ground. They felt so bad & apologized immediately. A simple mistake on their part and I wasn't upset with them. It's just unexpected things can happen such as a bump or even a pebble on the ground that I might step on causing me to go down. At least for me walking at this point in my life takes a lot of consideration which quickly gets tiring.

Now thankfully this morning there were no crowds or line ups which meant no extended periods of time standing. This definitely helped me. So if you want to limit your risks it might be best to visit a grocery store in the morning. The major benefits being no lines and the ability to use accessible parking. For some it might be easier to schedule a grocery pickup or if you can afford it delivery.

Thankfully on this day as of 8:30 AM this morning my errands for the day are done!

This Type of Stupidity needs to Stop Immediately!

All too often when I arrive at my local grocery store I run into the same problem which consists of the access aisles between the accessible parking spaces being filled with a large number of grocery carts completely eliminating the reasons this area was created.

Now it could have been a fellow accessible parking space user who left the first one behind then everyone else just followed their example and simply just added to the problem. The frustrating thing is that for over 20 carts to be found in this area it had to take a while for this many to accumulate in this area. It's simply a sign of a complete lack of respect for people with disabilities who use these spaces. It's also frustrating that the grocery store itself doesn't take keeping this space clear very seriously.

Now I've tried my best to raise awareness of this issue, even posting photos on the various My Beckers Story social media pages and the companies who own these grocery stores apologize and say they will speak with the manager so they can address this issue. I understand the store managers can't control what their customers do once they exit the store but you'd think people would know better. I guess some people are lazy and only think of themselves but I do hope a few people reading this blog post commit to refraining from participating in this type of behavior. If you have a disability and are unable to return the cart, consider making an employee aware and feel free to ask them for assistance in returning the cart for you.

In the end no one should be leaving their grocery cart in the access aisles between accessible parking spaces. 

Disability Travel: A Day Spent in Kingston, Ontario Canada

This past week happens to be my wife's week off so that usually means we're going on a few day trips. So, the week before we ordered tickets for the Thousand Island brunch boat tour. The 3-hour tour would take place on a boat called the Queen Island II. Now at first, I was worried about accessibility but was told they would set up a table for me on the main deck and that there was an accessible ramp onto the boat. So, everything was falling in order. We just had to take the two-hour drive there which meant getting up at 6 AM so we could be on highway 401 by at least 7:15 AM. 

Thankfully so far everything was working out perfectly and it was smooth sailing down the highway with us arriving at the time we hoped to and I was so thankful to find a parking space close by but as we went to get out tickets for the boat tour this is when our entire day took a turn.  We actually both made a mistake and didn't realize that the date at the top of the tickets was August 2nd not July 26th. So, what did that mean well at that time it meant we had made the trip for nothing. Now we were both looking at ourselves like how could we miss this? It completely shocked us that we both missed the date. We felt pretty stupid about the whole situation. 

So, the ticket lady told us they did have an opening for tomorrow's brunch cruise so we decided to reschedule for Wednesday.  Then we walked around a bit wondering what we were going to do - would we take that long drive back home and do it all again tomorrow. Then we decided to go to their other ticket office to see if they had any dinner cruise tickets left for that day. And thankfully they did have some tickets so what that meant was now we could exchange our tickets and board the cruise for 6:30 PM that evening.
At this point I was a little bit nervous wondering how we were going to get through the day since we now had about 8 hours before needing to board the boat. Thankfully with some nice scenery and some really nice restaurants we did find a few things to do. Now I did not prepare for a day full of walking because we expected to park close then walk a short distance, get on the boat, enjoy the brunch and drive back home. So that is why I left my mobility scooter behind at home because there was only supposed to be very little walking. Now having to spend the entire day quickly meant it was going to be a very physically challenging day.

So, I did my best to take it easy and to rest as often as I could. Now one solution I thought of immediately after finding out we'd be there all day was to see if we could find a hotel room for the night so we went to the local Holiday Inn which sits right next to the Harbor to see how much it would be and after finding out it the cost for one night was $320, we decided driving home to be the better option financially.
So, we just went back to the harbor front and watched the people get on the boat we thought we were going to be getting on that morning then also decided to look on as it sailed away. After this we wandered around a bit and I took advantage of some pretty awesome photo opportunities even shooting a few short videos.

As lunch time approached, we found ourselves at Diane's Fish Shack and Smokehouse. So, we relaxed a while on their patio with a cool breeze and enjoyed some fish chips. We took our time and then the first challenge of the day came when our lunch was over which involved me now needing to work up the strength to get up out of my seat. See often chairs at restaurants sit very low to the ground which make it very challenging for me to get up. Then after a few minutes I worked up the courage to attempt to get up which involved me putting my hands on my knees then shooting myself towards the table quickly placing my hands onto the table in front of me as a support which then allowed me to get up. It's certainly an entertaining show for everyone around.
After successfully getting up from my seat we walked around a little bit more then eventually I needed to use the city's public bathroom located underneath their visitor's centre which could only be described as disgusting and had me longing for an overpriced hotel room with a clean bathroom. After this we decided to head back to the vehicle to take a bit of a rest. Eventually we headed back to their visitor centre to ask about their trolley tour of the city and to see if they had an accessible tour available. They said unfortunately their accessible tour bus was in the shop which meant there was no possibility of me going.

So together we decided that my wife could go without me and that I would just wait behind the visitor's centre on their back patio which thankfully offered seating that worked perfectly for me. I would describe them as bar style chairs which sit much higher than regular ones making them so much easier for me to get up and out of. So after about an hour she returned from her city tour and we headed back to our vehicle to enjoy some relief from some air conditioning and to relax a little bit more before needing to line up to board the 1000 Islands Tour boat.
Before we knew it 6 PM approached and we found ourselves boarding the Island Star. I walked on with ease but at first the swaying of the board really got to me. It even made my legs feel weaker to the point where I worried it might cause me to fall over. Now thankfully we made it to our seats pretty quickly and once I sat down, I decided there was no way I would be getting up over the next 3 hours. It simply wouldn't be possible. Now it certainly took me a long time to get used to the swaying of the boat and thankfully I didn't suffer any type of sea/river sickness. As I'm sure if that happened people wouldn't have appreciated it. 
Now the food was decent, actually my wife's meal was so much better than mine as she got beef brisket with vegetables. When it comes to my meal, I honestly could make trout a lot better at home as on this day it was just okay. As far as entertainment the music was good and a bit too loud but the view was absolutely amazing. Once on smooth water the boat ride was great. I just found the roar of the engine surprisingly loud as we cruised down the water. Even with that I enjoyed the cruise but will admit I was constantly looking at my watch to see how much more time was left as I honestly couldn't wait for the cruise to be over.
So as scheduled and right on time at 9:30 pm we arrived back at the dock and after a few tries I got myself up and out of my seat, then steadied my feet and we were back on solid ground. The entire day certainly took a lot out of me physically which resulted in me and my wife taking a very slow walk back to our vehicle. At this moment I honestly could barely walk and pretty much collapsed into the drivers when we arrived at our vehicle, rested a bit then we made our way to the closest Tim Hortons, quickly used their bathrooms, grabbed some coffees and my wife drove the entire two-hour journey back home.

So, was it a good day? In some ways yes as at least we didn't take another trip to Niagara Falls and got to experience something different and even though the day didn't go as planned we learned a few things - one to always check the date on our tickets - two to consider always bringing my mobility scooter along as on this day it would have really helped - three things don't always go as planned and to do our best to be prepared for any situation especially when I am dealing with some walking difficulties.
Now as far as Kingston is concerned accessibility is not great, even if I brought my scooter many of the restaurants don't provide easy access and still have steps to climb if you wish to eat inside. Then sadly accessible park space availability is truly disappointing as they barely offer any and the 3-hour parking limit the city places on those with accessible parking permits means if you're spending the day there then every 3 hours you will need to move your vehicle. Something not quite that easy for many with disabilities and good luck finding another accessible parking space. Thankfully I was able to park in one of the city's parking lots unfortunately with no accessible parking but everyone who parked beside me left me plenty of room so I didn't struggle too much.

So even with our entire day taking an unexpected turn I didn't let any of this ruin my day though I was truly disappointed with the price gouging taking place by hotels in the area making an overnight stay impossible one positive is that we now have a day trip to Kingston and boat cruise crossed off our list.

Now where should we visit next? I am just a little tired of Niagara Falls, mainly because of the cost of hotels due to it being a tourist destination so we haven't stayed the night in a very long time. See if hotels were cheaper or at least offered a disability rate I could go more places and do more things without having to worry about a late-night drive home or getting fatigued from not having a proper place to rest when needed. Oh, some days I wish I was a millionaire just so I could stay in hotels and enjoy life while I still can.

In the end the one positive from our day is that it was nice to get away and experience something new. Most of all I am thankful I survived what turned out to be a long day but I will certainly be taking it easy the next few days.

Please enjoy the short video I shot of our day spent in Kingston, Ontario below!