What you have to do

Hi everyone,

 

Here’s what you have to do for the Muscular Dystrophy awareness challenge.  

The challenge is actually very simple to do, and it’s pretty fun. Basically, all you do is sit in a chair (because it’s a little slippery) and have someone record you putting your bare feet into a tub of shaving cream. Or you can donate to the Muscular Dystrophy Association. Then challenge 3 of your friends to do a video of it (or donate) within 3 days or whenever they can. Here’s a general idea of what to say, but it doesn’t have to be exactly this.

Hi, I’m ____! I’m doing Mike Riley’s Shaving Cream challenge to raise awareness for Muscular Dystrophy. It’s easy. All you have to do is put your bare feet in shaving cream or donate to the MD Association. I’m challenging ___, ___, and ___ please try to do this in 3 days. Let’s go viral! Also, please sit when you put your feet in because it’s slippery.

(Please feel free to dedicate this to someone who you know suffers from MD or in memory of someone who had the disease.)

I know I said on my last Blogger post I said that the shaving cream is slippery and simulates what it’s like to not have control of your legs. But in order to keep the challenge safe and fun, please make sure you are sitting down when you put your feet into the shaving cream. I just don’t want you to fall and get hurt❤.  .  

 Here's my video of me doing the challenge.

Creating the MDA Challenge

Creating the challenge

A few years back, Pete Frates and Pat Quinn created the ALS Ice Bucket challenge to help raise awareness of ALS (amyotrophic lateral sclerosis) and encourage people to donate to research. Many people across Social Media including many celebrities, took part in the challenge, causing it to go viral and raising $225 million for ALS. It inspired me to create a challenge to raise awareness of Muscular Dystrophy, a disease I suffer from. For those of you who don’t know what Muscular Dystrophy is, it’s a group of 40+ genetic diseases that cause progressive weakness and loss of muscle mass throughout the body. Check out my last Blogger post for a more detailed explanation of what Muscular Dystrophy is.

While the Ice Bucket challenge was a brilliant idea, many of us who have Duchenne Muscular Dystrophy could not take part because we’re on ventilator machines which cannot get wet. So I wanted to create something unique but simple that everyone can do, including people with disabilities like me and something that can be done either indoors or outdoors year round. I thought of a few ideas, one of which was pieing yourself in the face, but that has been done to death and again those of us with a Trach and ventilator. That would be a problem. I also have an irrational fear of people putting stuff on their faces because of severe claustrophobia. So then I thought how about people putting their feet in something because with a little help people like me can definitely do that. I first thought of using ice water but then thought it was too close to the Ice bucket challenge plus freezing cold water might not be good for people who have a compromised immune system. So one day I was at the grocery store with my mom and we just passed down the aisle with shaving products, and I saw all the cans of shaving cream. That’s when it hit me. Shaving Cream would be perfect! It’s widely available and easy to clean up and it actually looks like it would be pretty comfortable (it definitely is lol!). Plus, you can do it indoors or out. Also, the shaving cream is very slippery and it kind of simulates how it is to stand or walk when we lose our ability to do that. It’s basically the feeling of not having control. So the MD Shaving Cream challenge was born with my cousins being the first to take part. Over the years, many people have taken part, mostly me, my friends and family, and all the aides and nurses who have come to my house. Plus countless YouTubers and a handful of actors, actresses, and newspeople. I plan on continuing to keep the challenge going as long as I can or until it goes viral.

What is Muscular Dystrophy?

Definition

A group of genetic neuromuscular diseases that cause progressive weakness and loss of muscle mass.

 

In Muscular Dystrophies, abnormal gene mutations which are passed down genetically by DMD "carriers" lead to muscle degeneration. Most forms begin in childhood. It is a rare illness there are fewer than 200,000 cases in the US per year. Treatment can help, but the condition currently cannot be cured. Lab tests or imaging are required to make a medical diagnosis. There are around 40 types of Muscular Dystrophy, some are more severe than others. The most common type and the most severe is Duchenne Muscular Dystrophy, it begins at birth and mostly occurs in boys with rare cases recorded in girls. It is usually terminal. 

 

What is Duchenne Muscular Dystrophy?

Duchenne Muscular Dystrophy is the most common and most severe form of Muscular Dystrophy and is caused by a mutation in the gene responsible for the production of the protein, Dystrophin. The Dystrophin protein is an important part of your muscles, it helps with forming and maintaining healthy muscle tissue. The lack of this protein results in fragile and easily damaged muscle tissue. Duchenne was discovered by and named after French Neurologist, Dr. Guillaume-Benjamin-Amand Duchenne, who described and detailed the illness in a young boy with the condition in his book in 1861.

 

DMD begins at birth and is diagnosed typically between the ages of 2 and 6, but with our advancing medical technology it can be much sooner. The DMD gene is located on the X-Chromosome so it primarily affects males with females being carriers. However, some females can, on rare occasions, be manifesting carriers which means that they can experience different degrees of physical DMD symptoms. Typically, the illness gets passed down to the child by the mother if there's a history of it in the family. But in about 25% of cases the illness can occur spontaneously even if there was no history. It is a rare disease, 1 out of 5,000 males born are affected with Duchenne with 20,000 children diagnosed every year worldwide. DMD is currently incurable.

 

Symptoms

Symptoms can begin as early as the age of 2 or 3. Damaged muscles become progressively weaker. The proximal muscles (the muscles close to the body's core) are affected first followed by the distal limb muscles(the muscles close to the extremities). Usually, the lower external muscles are affected before the upper external muscles. The child affected by the disease may have trouble jumping, running, and walking. They will also have enlarged calves, a waddling gait, and an inward curve of the spine. Some might also experience muscle pain. Muscle weakness, muscle loss, and permanent shortening of tendons are common in DMD. Also common are cardiomyopathy, walking on tip toes, constipation, and fatigue. In some cases, delayed development or learning disabilities can occur. Eventually, people who have the condition will need a wheelchair. Later in life, the muscles responsible for swallowing as well their cardiac and respiratory muscles will be affected. Scoliosis will result in impaired Pulmonary function and can lead to possible respiratory failure. Lifespan is often shortened by the disease. It's considered a terminal illness.

 

DMD Life Expectancy

Until recently, the lifespan for boys suffering from DMD was the late teens to early twenties if lucky. Due to the advancements in medical technology, specifically in Cardiac and Respiratory care, life expectancy is increasing significantly. Boys and young adults suffering from DMD are able to attend college, have careers, get in relationships, and have children. Survival into the 30s and 40s, as in my case, is becoming more and more common.

 

Treatments

Treatment can consists of steroids, medications, physical therapy, breathing aids(such as C-Pap machines and ventilators, or surgery may help maintain function. Proper treatment of the disease can increase the lifespan of those living with this illness and improve quality of life.  Researchers are pursuing several revolutionary strategies to combat DMD such as gene therapy, exon skipping, stop codon read through(don't ask me what that means), and gene repair. Human clinical trials are currently underway.

 

*The Information in this blog was provided by the mda.org website with references from the sources below 

 

* Understanding Neuromuscular Disease Care. IQVIA Institute. Parsippany, NJ. (2018). 

 

* Ryder, S. et al. The burden, epidemiology, costs and treatment for Duchenne muscular dystrophy: An evidence review. Orphanet Journal of Rare Diseases (2017). doi:10.1186/s13023-017-0631-3 

 

* Moat, S. J., Bradley, D. M., Salmon, R., Clarke, A. & Hartley, L. Newborn bloodspot screening for Duchenne Muscular Dystrophy: 21 years experience in Wales (UK). Eur. J. Hum. Genet. (2013). doi:10.1038/ejhg.2012.301 

 

* Romitti, P. A. et al. Prevalence of Duchenne and Becker Muscular Dystrophies in the United. Pediatrics (2015). doi:10.1542/peds.2014-2044

About me and my life with Duchenne Muscular Dystrophy

Hi everyone,

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