My first blog is going to be about me. So my name is Mike Riley. I am 41 years old and I’m from Cape Cod, Massachusetts. I’m physically disabled. I have a debilitating illness called Duchenne Muscular Dystrophy. For those of you who don’t know what Muscular Dystrophy is, it’s basically a genetic neuromuscular illness that causes my muscles to break down and weaken over time. I will make a blog post in the future, explaining it more.
I was born in Dorchester, MA, a neighborhood in Boston, on October 30, 1981. At first I seemed like any normal infant and there was no sign that there was anything wrong. However, over the next couple of years, my mom and my grandmother noticed I seemed to have a hard time doing things most children my age could do, like standing up. When I was 2 years old, they brought me to my pediatrician to figure out what was going on and pretty much immediately when he saw the way I was walking he thought it could be Muscular Dystrophy. I was sent to a major Boston hospital to have a battery of tests done, and they diagnosed me with Duchenne Muscular Dystrophy. For the next few years, I could walk, but as time passed, it became more and more difficult for me. At the age of 10, I finally lost my ability to walk because the leg muscles deteriorated to where they could not support my weight and it confined me to an electric wheelchair. In the years since, I have lost the use of most of my body. I can no longer use my arms. My respiratory system has severely weakened to where I have a trach and I am on a ventilator to help me breathe. I also have a G-tube in my stomach to help with getting nutrition because, while I can still eat by mouth, my ability to chew and swallow has become very limited.
I have been admitted to the hospital frequently throughout my life because of various surgeries and serious respiratory issues like pneumonia. One time back on my 37th birthday, I actually died for a few minutes and was being pronounced until I inexplicably woke up. That’s when I had the trach put in. Because of that and some amazing doctors, I am alive today and doing much better.
Despite everything I have been through in life, I am still a positive, optimistic person. I have bad days just like everyone else, but it’s rare. I am usually pretty happy and I try to make the most of my life. What keeps me going is my family and my friends. They are the best people in the world! Without them, I don’t think I’d be here. My sense of humor also helps me get by. I think you need to make light of the situation sometimes when you are disabled. If I were to give anyone in a similar situation advice, it would be to live your life the best you can and don’t let your disability stop you from doing what you love. Sometimes it’s going to be tough living with a disability, but you need to stay positive and hopeful and you will get through it. Never give up.
In my spare time, and let’s be honest I have a lot of that haha, I have many interests and hobbies. The biggest thing is my computer. When I’m at home, I’m usually on my PC either surfing the web, reading e-books, and gaming. I play a lot of games but my favorite games are the Forza Horizon series, the Spintires series, occasionally Minecraft, and several others. I have several social media accounts which are linked at the bottom of this blog post. Please check them out and follow. I also love to travel! Every year my family and I try to go on a long road trip somewhere in our van except for 2020 because of Covid. But we’ve been all over the country from Florida to California. We went to Canada a few years ago with my cousin and had fun. We’ve also gone on several cruises to Bermuda and once to Nassau. I feel cruises are very good for the disabled, it’s pretty accessible for wheelchairs. Locally like to go out to the movies usually to see horror or Sci-Fi movies and occasionally we go to a family or friends cookout usually in the Summer. That’s about it!
Another thing I enjoy doing and is very important to me is helping raise awareness for Muscular Dystrophy with a fun and simple challenge I created, similar to the ALS Ice Bucket Challenge. I’ll give a quick description of it. Basically, all you have to do is sit in a chair (because it’s a little slippery) and put your bare feet into shaving cream. Or instead donate to the Muscular Dystrophy Association. Then challenge 3 of your friends to do a video of it too as soon as they can. I chose this activity because it’s something simple and unique that everyone can do, including those of us who are disabled. It’s also fun and actually feels amazing on your toes haha. Just be sure to sit when you put your feet in the shaving cream. It’s a little slippery. It would really mean a lot to me if you did my challenge and told all of your friends and family about it so they can do it too so it can go viral.
Thank you for reading.
Please Follow Me on my social medias:
YouTube channel:
https://youtube.com/c/MuscularDystrophyAwarenessChallenge
Twitter:
https://twitter.com/mda_challenge
Instagram:
https://www.instagram.com/the_mda_challenge/
Facebook:
https://www.facebook.com/MRiley1981
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