Understanding Duchenne Muscular Dystrophy

What is Duchenne Muscular Dystrophy (DMD)?

Duchenne Muscular Dystrophy (DMD) is a rare, genetic disorder that causes muscles to weaken and break down over time. It primarily affects boys, with about 1 in every 3,500 to 5,000 boys born having this condition. DMD usually starts in early childhood, and symptoms progressively worsen as the child grows older. While girls are rarely affected, some can carry the gene and occasionally show mild symptoms. This condition is considered terminal, significantly shortening life expectancy, though recent medical advances have been improving the quality and length of life for many individuals.

Raising awareness for DMD is essential, as it promotes early diagnosis, increases access to treatments, and supports ongoing research for better therapies. By understanding the challenges faced by those with DMD and their families, we can work together to make a positive impact on their lives and move closer to finding a cure. 

How Does DMD Affect the Body?

DMD is caused by a genetic mutation in the gene responsible for producing dystrophin, a protein crucial for muscle health. Without dystrophin, muscles become fragile and are easily damaged. Over time, muscle tissue is replaced by fat and scar tissue, leading to severe muscle weakness. The muscles around the hips, thighs, and shoulders are typically affected first, making it difficult for young children to walk, run, or climb stairs. As the disease progresses, muscles in the arms, legs, heart, and lungs are also impacted, leading to more severe complications.

Symptoms of DMD

Symptoms often begin to show between the ages of 2 and 3. Early signs include:

• Difficulty walking, running, or climbing stairs  

• Frequent falls and trouble jumping     

• Enlarged calf muscles  

• A distinctive waddling walk  

• Curved spine (scoliosis)

As they grow older, children with DMD may need to use a wheelchair, often by ages 9 to 11, as leg muscles become too weak. Eventually, DMD affects muscles used for breathing and the heart, leading to life-threatening respiratory and cardiac complications in their late teens or 20s. Other common symptoms include fatigue, learning challenges, and constipation. 

Life Expectancy with DMD

Historically, the life expectancy for individuals with DMD was limited to the late teens or early twenties. However, due to advancements in medical care, particularly in cardiac and respiratory support, many people with DMD are now living longer, some even into their 30s and 40s. Improved care has allowed individuals to attend school, pursue careers, and enjoy relationships and family life. These advancements give hope to those living with DMD, though it remains a life-limiting condition.

Treatments and Care for DMD

While there is no cure for DMD yet, various treatments can help manage symptoms, slow disease progression, and improve quality of life:

• Medications: Steroids like prednisone can slow muscle degeneration. Heart medications are often needed as the heart muscles weaken over time.

• Physical Therapy: Regular physical therapy helps maintain muscle function, flexibility, and strength, which can delay joint problems and scoliosis.

• Breathing Support: Respiratory devices, such as C-PAP machines and ventilators, support breathing as respiratory muscles weaken.

• Assistive Devices: Braces, wheelchairs, and other aids can help individuals maintain mobility and independence for as long as possible. 

• Surgery: In some cases, surgery is required to manage scoliosis or other complications caused by the weakening muscles.

Research and New Treatments

Scientists are actively working on new therapies for DMD, including:

• Gene Therapy: Experimental therapies aim to introduce healthy versions of the dystrophin gene to produce the missing protein.

• Exon Skipping: This approach “skips over” faulty parts of the gene, allowing for partial production of dystrophin.

• Stop Codon Read-Through: Helps cells ignore premature stop signals in the gene, potentially restoring some dystrophin production.

• Gene Editing and Repair: Techniques like CRISPR are being explored to directly fix the genetic mutations that cause DMD.

These therapies are still in clinical trials but offer hope for the future. While they do not represent a cure, they have the potential to slow the progression of DMD significantly.

Famous People Affected by DMD

Over the years, several individuals and families have either had DMD or helped raise awareness for the condition:

• Alfredo "Dino" Ferrari: The son of legendary car manufacturer Enzo Ferrari, Dino Ferrari was diagnosed with DMD at a young age. His life and struggle with the disease inspired Enzo to name a series of Ferrari sports cars, the Ferrari Dino, in his honor. Dino passed away at the age of 24 in 1956. His legacy lives on in the iconic Dino car series and has helped raise awareness about DMD, even at a time when little was known about the disease.

• Darius Weems: Darius Weems became a well-known advocate for DMD awareness after he traveled across the United States with his friends in the documentary Darius Goes West. The film highlighted his journey and aimed to raise awareness about DMD, raising funds for research and inspiring others living with the condition. Darius passed away in 2016 at the age of 27 but left a lasting legacy of advocacy.

• Nick Catone’s Son, Nicholas: Former UFC fighter Nick Catone’s son, Nicholas, tragically passed away from complications related to DMD at just 20 months old. In Nicholas’s honor, Nick and his wife became strong advocates for DMD awareness, founding the Nicholas Catone Foundation, which raises funds for research and supports families affected by the disease.

• Ryan Benton: Musician and DMD advocate Ryan Benton has used his platform to raise awareness about DMD and the importance of clinical trials. Diagnosed as a child, Ryan has participated in experimental treatments, including adult stem cell therapy, which has improved his quality of life. Ryan shares his story to inspire others and promote advancements in DMD research.

• Austin Carlile: Although not personally diagnosed with DMD, former Of Mice & Men lead singer Austin Carlile has Marfan Syndrome, another genetic disorder that affects muscles and health. After learning about DMD, Carlile became a vocal advocate for those with neuromuscular disorders, including DMD, using his platform to raise awareness about both conditions to support research and advocacy.

• Corey Dubin: Diagnosed with DMD, Corey Dubin became an influential advocate for healthcare and disability rights. A founding member of the Committee of Ten Thousand, Corey advocated for hemophiliacs and those affected by DMD and other disabilities. He worked tirelessly to improve access to treatment and support for DMD patients. Corey’s dedication to disability rights continues to inspire the DMD community even after his passing in 2015.

• Mike Riley: A 43-year-old from Cape Cod, Massachusetts, is a dedicated advocate for Duchenne Muscular Dystrophy awareness. Mike created the Shaving Cream Challenge, a fun and inclusive activity to raise awareness for DMD. Participants, inspired by Mike’s vision, dip their feet into shaving cream and post their videos on social media using the hashtag #MikesDMDChallenge. This sensory experience brings attention to DMD in a positive way, building a community of support. Through over a decade of advocacy, Mike continues to make a meaningful impact in the DMD community.

• Hawking Family’s Support for DMD Research: Though not directly affected, the family of renowned physicist Stephen Hawking has been involved in advocating for DMD awareness and supporting research efforts, given their connection to neuromuscular diseases through ALS.

• Jett Foundation: The Jett Foundation, founded by Christine McSherry, whose son Jett was diagnosed with DMD, has worked tirelessly to raise awareness and fund research. While not a public figure himself, Jett’s story has been shared widely, and the foundation has made a significant impact on the DMD community.

These individuals and families have brought DMD into the public eye, helping to increase awareness and funding for research to improve treatments and, one day, find a cure.

Films and Documentaries on Duchenne Muscular Dystrophy

Several films and documentaries have been created to raise awareness and provide insights into the lives of those affected by DMD:

• "Darius Goes West" (2007) - This documentary follows the journey of Darius Weems, a young man with DMD, as he travels across the United States with friends. Their goal is to raise awareness for DMD and raise funds for research. The film is both uplifting and educational, highlighting the resilience of those with DMD and inspiring viewers to support the cause.
  

• "Dusty’s Trail: Summit of Borneo" (2013) - This inspiring film follows Dusty Tueller, a young man with DMD, and his brother as they embark on a life-changing trek to the summit of Mount Kinabalu in Borneo. Their journey is both a physical and emotional challenge, emphasizing the power of family support and resilience. The film raises awareness for DMD by showing the incredible lengths families go to in their advocacy, inspiring audiences worldwide.
  

• "A Race Against Time to Access New Treatments" (2019) - This documentary takes a closer look at the science of gene therapy for treating DMD and the urgency faced by families and researchers to find a cure. It offers an in-depth perspective on the latest developments in DMD research, providing hope for families affected by the disease.

• "A Life Worth Living: Pushing the Limits of Duchenne" (2012) - This film shares the personal stories of families affected by Duchenne Muscular Dystrophy (DMD), focusing on their struggles and triumphs as they cope with the disease. It sheds light on the challenges they face in accessing advanced treatments and managing the high costs of care. Through an intimate look at day-to-day life, the film captures the urgent reality for these families, emphasizing the need for quicker access to therapies that can slow DMD's progression. Ultimately, it celebrates their strength and determination amidst the difficulties of living with DMD.

• "A Space in Time" (2021) - A Space in Time, directed by Nick Taussig and Riccardo Servini and released in 2021, is an intimate documentary that follows the Taussig family as they navigate life with Duchenne Muscular Dystrophy, affecting both of their sons. The film has gained recognition for its candid portrayal of family life and resilience amidst the challenges of DMD.

• "Brothers" (2019) - This deeply personal documentary, filmed in Maine, features a young man with Duchenne Muscular Dystrophy who reflects on his brother’s struggles with schizophrenia and his eventual suicide. Brothers explores complex themes of family, mental health, and resilience, offering an honest and moving look at the impact of both DMD and mental illness on loved ones. The film highlights the importance of mental health awareness alongside the challenges of living with DMD. 

• "The Remarkable Life of Ibelin" (2024) - This documentary is about Mats Steen, a Norwegian gamer who lived with Duchenne Muscular Dystrophy (DMD). Known as "Ibelin" in World of Warcraft, Mats formed deep friendships and created a meaningful virtual life that his family only fully discovered after his passing at age 25. Directed by Benjamin Ree, the film explores how gaming allowed Mats to connect with others beyond his physical limitations. It was released on Netflix on October 25, 2024​.

• "The Fundamentals of Caring" (2016) – Directed by Rob Burnett, this film follows Trevor (played by Craig Roberts), a teenager with Duchenne Muscular Dystrophy (DMD), who embarks on a road trip with his caregiver, Ben (played by Paul Rudd). Along the way, they confront fears, explore new friendships, and experience adventures that challenge both of them. The film highlights themes of independence, humor, and resilience in the face of physical limitations, providing a heartfelt and humorous look into life with DMD and the bonds formed through care and companionship. Jennifer Ehle stars as Elsa, Trevor’s protective yet caring mother, while Selena Gomez plays Dot, a young woman they meet on their journey. Megan Ferguson joins the cast as Peaches, a pregnant hitchhiker whose unexpected presence adds humor, warmth, and a unique perspective to their road trip.

Books on Duchenne Muscular Dystrophy

For those who want to learn more, here are recommended books on DMD. These books include personal stories, medical insights, and practical advice for both families and professionals:

General Interest and Family Resources:
 

• "The Duchenne Path: A Parent's Guide to Duchenne Muscular Dystrophy" by Wendy Erb and Marci Roth. - An invaluable resource for parents, this guide provides clear explanations, treatment options, and day-to-day advice for managing DMD.
  

• "Darius Goes West: The Roll of His Life" by Logan Smalley and Darius Weems. - Based on the documentary, this book tells the story of Darius Weems and his journey across the U.S., raising awareness for DMD.
  

• "One More Step: My Story of Living with Duchenne Muscular Dystrophy" by Ryan Benton. - Ryan Benton shares his journey and his experience with experimental treatments, providing hope and insight for those affected by DMD.

• "Understanding Duchenne Muscular Dystrophy: A Guide for Parents and Educators" by Susan Gurley. - A practical resource for parents and educators, focusing on creating a supportive learning environment for children with DMD.
  

• "The Revised Fundamentals of Caregiving" by Jonathan Evison. While the novel itself is fictional, it draws on themes inspired by Evison’s real-life experiences as a caregiver for a young man with a degenerative condition. The story is not a direct account of any specific real events but is instead shaped by Evison’s insights into the caregiving experience, the emotional challenges, and the deep connections that can form between caregivers and those they assist.
  

Medical and Professional Resources:
 

• "Muscular Dystrophy: A Concise Overview of the Disease" by Alan R. Emery. - This book provides a comprehensive overview of various muscular dystrophies, including DMD, focusing on medical and scientific information. It’s an essential resource for healthcare providers and students in medical fields.
  

• "Neuromuscular Disorders of Infancy, Childhood, and Adolescence: A Clinician's Approach" by Basil T. Darras, Harvey B. Sarnat, and Elsevier. - This textbook offers an in-depth look at various neuromuscular disorders, including DMD, with details on diagnosis, treatment, and management. It’s ideal for clinicians working with pediatric patients.

• "Duchenne Muscular Dystrophy: Advances in Therapeutics" edited by Ronald Cohn and Corrado Angelini. - This book focuses on the latest research in therapeutic approaches for DMD, making it a valuable reference for healthcare professionals involved in DMD treatment and research.

• "Principles and Practice of Pediatric Neurology" by Kenneth F. Swaiman. - Covering a wide range of pediatric neurological conditions, this book includes comprehensive information on diagnosing and managing DMD, making it useful for both general and specialized medical practitioners.

Conclusion: How You Can Make a Difference

Duchenne Muscular Dystrophy is a challenging journey, but with greater awareness, understanding, and support, we can help improve the lives of those affected. By spreading knowledge about DMD, sharing stories, and supporting ongoing research, each of us can play a role in creating a more inclusive and hopeful future for individuals and families touched by this condition.

If you found this post helpful or inspiring, please consider sharing it with others to raise awareness. You can also take part in Mike Riley's Shaving Cream Challenge, a fun and sensory activity that invites participants to dip their feet in shaving cream and post the video on social media using #MikesDMDChallenge. This unique challenge not only raises awareness for DMD but also builds a sense of community around this important cause.

Learn more by watching one of the recommended films or reading the books listed above. Together, we can build a community of support and encouragement for those living with DMD, fueling the hope for advancements in treatment and, one day, a cure.

Sources:

1. Muscular Dystrophy Association. “What is Duchenne Muscular Dystrophy (DMD)?” [https://www.mda.org/disease/duchenne-muscular-dystrophy](https://www.mda.org/disease/duchenne-muscular-dystrophy)

2. Mayo Clinic. “Duchenne Muscular Dystrophy.” [https://www.mayoclinic.org/diseases-conditions/muscular-dystrophy/symptoms-causes/syc-20375388](https://www.mayoclinic.org/diseases-conditions/muscular-dystrophy/symptoms-causes/syc-20375388)

3. National Institute of Neurological Disorders and Stroke. “Duchenne Muscular Dystrophy.” [https://www.ninds.nih.gov/health-information/disorders/duchenne-muscular-dystrophy](https://www.ninds.nih.gov/health-information/disorders/duchenne-muscular-dystrophy)

4. WebMD. “Living with Duchenne Muscular Dystrophy.” [https://www.webmd.com/children/duchenne-muscular-dystrophy-what-to-know](https://www.webmd.com/children/duchenne-muscular-dystrophy-what-to-know)

5. NIH Genetics Home Reference. “Duchenne and Becker Muscular Dystrophy.” [https://ghr.nlm.nih.gov/condition/duchenne-and-becker-muscular-dystrophy](https://ghr.nlm.nih.gov/condition/duchenne-and-becker-muscular-dystrophy)

6. Parent Project Muscular Dystrophy. “Research & Clinical Trials.” [https://www.parentprojectmd.org](https://www.parentprojectmd.org)

7. BioMarin Pharmaceutical Inc. “Duchenne Muscular Dystrophy: Exon Skipping and Gene Therapy.” [https://www.biomarin.com](https://www.biomarin.com)

8. Darius Goes West Foundation. “Darius Weems.” [https://www.dariusgoeswest.org](https://www.dariusgoeswest.org)

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

My second life threatening experience: Hypercapnia and Respiratory Acidosis.

Hi everyone, 

 

This is about my second life-threatening health emergency I survived.

In May 2000, I was 18 and had my high school Senior Senior Prom. They held it at the Hyannis Sheraton hotel in Hyannis, Massachusetts (now known as The Resort and Conference Center in Hyannis). I went by myself because I wasn’t sure anyone would want to go with me. There was someone I should have asked. Jenny Gervelis I should have asked you. You were always an absolute sweetheart to me and a good friend. Anyway, at the Prom, my friends, their dates (now wives), and I all sat at the same table where we had dinner. Afterwards the dance floor was open to people to.. well dance lol. About an hour into it, I noticed it was getting really hot in there. I swear it had to be around 85 degrees in the function hall and there didn’t appear to be a way to open the windows. We were all in an oven. 

Around 11:30 PM, the Prom came to a close. Everyone went either to a hotel room, home, or to the after-prom party. I planned on going to the after party, but I went home first to change into regular clothes. I noticed as I was crossing the parking lot I felt a little fatigued, a lot more than usual. But I thought nothing of it and continued to go home and then to the Dennis-Yarmouth Regional High School where the party was being held. It was a pretty great party! In the gym, they had a bouncy house and a slide into a ball pit. In the corridor, they had several arcade games. They had food in the cafeteria (not sure where else it would be lol), and movies in the Auditorium. My aide Greg took one for the team and went along with me the whole night (it ended at 6:30 AM). We got something to eat and then watched the movies in the Auditorium. It was Austin Powers... yuck! and the Sixth Sense, which I already saw, and that’s a movie you can only see once. I had the greatest action/sci-fi/horror film in existence, Aliens, in my backpack. I should have asked the media production guy to let us watch that instead of Austin fucking Powers. The entire night I was downing Coca-Cola and caffeinated black tea. Probably the worst thing to drink. Anyway, the morning came, and the party ended and everyone went home. My mom picked me up in our shitty Plymouth Grand Voyager handicapped van and we went straight home. I felt accomplished because I was born with a terminal illness and I made it to senior year and prom. I got home and tried to get some sleep.

I woke up about two hours later, and I couldn’t sleep. So I got up and hung out with my aunt Tricia and my 2yr old brother James. I was so tired yet couldn’t sleep. That night I slept really well. The next day we had to go up to Middleton, MA, for my cousin Molly’s kindergarten recital at Middleton Elementary School. The ride up my breathing seemed way off and at the school, the AC wasn’t working and it was hot as hell inside. I had to go outside because I felt like I was being asphyxiated. On the way home we stopped at Best Buy because I was a big gamer back then too and they released the game Resident Evil Code Veronica that day and I was picking up a pre-ordered copy. Again, that night I slept very well. The next day, I have school early in the morning. Now I had a bad habit of falling asleep in my first class which was English and the teacher, Miss Smith, usually had to wake me up lol. Well, on this day, Smith was in an incredibly shitty mood. I was also having trouble that day staying awake for anything. She was yelling at the class about something and I nodded off. She turned her attention to me and yelled at me to wake up, which almost gave me a fucking heart attack. At the end of class she stops me from leaving the room and says something like “I don’t appreciate you sleeping in my class” I say “I’m sorry I can’t help it I don’t know what’s going on” and in a tone that I took as sarcasm she says “then what are you doing here?”. I was like a real bitch? Like I have a choice.... My mom was a newly single mother raising a disabled teenager and an ornery 2-year-old. She had to work and if I’m at home, how the fuck was she supposed to do that? I didn’t say any of that, by the way lol. If I did, her insensitive response would be it’s not her problem. Clearly, I wasn’t doing good. Instead of being a miserable bitch, how about you send me to the nurse? I wasn’t a normal student. I had severe underlying health issues, which she knew. Anyway, I left the room without telling her to go straight to hell, back to her own kind. So, the next day I started bringing caffeinated tea to school in a big insulated cup so I could keep myself awake. I feared that if she started on me again, I probably would have been suspended by calling her a bitch. It was helping a little, but I felt like shit. The following day was a Wednesday and my aide Beth was here at home after school. She noticed I was breathing rapidly and my heart was racing. I had recently been put on a blood pressure medication and I thought I had to take one of the pills because maybe it would slow down the heartbeat. She wasn’t really supposed to give me those and I wasn’t going to make her do something she was uncomfortable with. Eventually that night it subsided and, like with the pneumonia, I felt good in the morning. Even still my mom contacted my Pediatrician in Hyannis and made an appointment for Friday at noon. I told Miss Smith that I was leaving early and she was like “Oh you’re leaving during my class?” I was like Fuck You lady(in my head). Mom came and picked me up and we drove to Hyannis. They began doing some tests and administered a nebulizer in case I had Pneumonia again. They couldn’t find anything wrong with me but they could clearly see something was off. They decided to be cautious and told us to go to Boston Childrens Hospital. It was a good thing they did.

Mom and I get to Boston and leave the shitbox to the valet... poor guy having to drive that... Anyway, they sent us to Cardiology to do EKGs, Ultrasounds, blood tests, and I think they did several X-rays. Still, they couldn’t pinpoint whatever the hell was wrong with me. Finally, they were like we can’t find anything, so I guess we’ll send you home. As we were waiting for the elevator, the doctor came over to us and said while they couldn’t find anything; he was very uncomfortable about it. So he sends us down to the Emergency Department to see one more person who was basically a respiratory genius. He looks at my blood test results and was like it’s really good you came up here when you did. He admitted us and immediately started me on a BiPap machine. Unfortunately, there were no rooms at Childrens at the time they were all occupied. They sent me to the ICU at Boston Medical Center and they got me in a room there. I had to use the BiPap that night, which I didn’t like because it was a strange sensation and I felt like it was sucking the air out of me. So, about halfway through the night, they took it off. It was probably not a good idea. I wake up the next morning feeling like shit. I got up in my chair and I was becoming irritable and disoriented. At one point, my mom goes to grab a smoke. The nurse comes in and says something to me and I reply with “fuck you bitch”,, which isn’t me, and then started saying “shit” repeatedly. Now I don’t remember any of this. But I guess the nurse was understandably angry and upset at my outburst. She asks my mom if I normally speak to people like that and my mom says she’s never heard me say anything like that to anyone. Mom comes in and I remember her asking why I was upset. I didn’t know what the hell happened and said I wasn’t upset. Then I asked to get back into bed. I don’t remember the next four hours. According to my mom, aunt, and several nurses who witnessed it. As soon as I lay down, my body seized up and my eyes rolled back into my head. The heart monitor registered a heart rate of 250 bpm. Normally it’s between 60 and 100 bpm, so my heart was on the verge of exploding. After a few minutes, my heart rate dropped to normal, but I was out cold. 

When someone has DMD, like myself, the muscle responsible for respiration called the Diaphragm gets weaker. So we have trouble removing excess Carbon Dioxide from our lungs. This is known as hypercapnia and can lead to Respiratory Acidosis. Respiratory Acidosis is when the buildup of C02 in the blood causes the blood and other bodily fluids to become acidic. Symptoms of RA are confusion, fatigue, lethargy, shortness of breath, and sleepiness. If untreated, it can be fatal. I had been suffering from all those symptoms all week and I became disoriented right before the seizure, which is why I told the nurse off and didn’t remember.

Four hours later, I woke up surrounded by family and EMTs. The EMTs were there to move me back to the Children’s Hospital ICU, where a room had become available. I was intubated so I couldn’t speak. The DMD wasn’t as advanced as it is now and I still had the use of my hands. I asked for a pen or pencil and a notepad and wrote, “What happened and where am I?”. My mom explained I had a seizure from C02 build up and was probably going to be in the hospital for a couple weeks. I was concerned because HS graduation was a month away and I didn’t want to miss it. The only good thing about it was I had a paper due for the English teacher the Monday coming up and I hadn’t even written a goddamn word of it. So I was off the hook! 

I spent a week in the Pulmonary ICU at Childrens. The episode happened on a Saturday and by Tuesday I was extubated (tube pulled out of my trachea). It was the most boring experience in the hospital. Every day, I watched the clock tick by. On Friday, they moved me down to a normal room on one of the patient floors. I spent another week in there and had some family and friends and even some of my teachers came to visit. They also gave me access to an actual TV with cable, so I wasn’t just watching the clock. By that Friday, they discharged me from the hospital. They gave me a pulse oximeter, an oxygen concentrator, and my own BiPap machine, which I started using at night when I got home. 

Two weeks later, I went back for the last three days of school and I received my yearbook, which I had Jenny G. sign because she was a good friend. The following day was June 10, 2000, and I rolled up on the stage and got my diploma from our principal, Mr. Jenks (✝️👆❤️). I received a standing ovation from my classmates and friends, which brought a tear to my eyes. I was so happy I could attend my graduation. 

Why my challenge is feet in shaving cream

Explaining why the challenge is what it is.

Hi everyone, I imagine some of you probably wonder why my Muscular Dystrophy challenge is feet in shaving cream and what exactly it has to do with Muscular Dystrophy. I know many people misunderstand the challenge and when they see feet are involved, they automatically assume that it’s some kind of fetish thing under the guise of raising awareness. I can tell everyone right now that it’s definitely NOT! I actually discussed this in one of my other blogs but I would just like to explain the whole thing in its own blog post. 

Why is your challenge putting your feet in shaving cream?

Well, this is a good question and one that people should ask me first and allow me to explain before assuming that the challenge is for fetish purposes. So I chose putting feet into shaving cream because it’s something easy to do for everyone, including the disabled. When the Ice Bucket challenge came out, no one like me could do it. A. We have life support and mobility equipment that will be damaged if it gets wet. B. Some of us, including myself, are sensitive to cold temperatures and can get sick if we get drenched in ice water. So I wanted something that wouldn’t be anywhere near our faces or too close to our machines. Putting our feet into something was the best option. It’s not much of a challenge, I know. If anything, it’s something fun yet simple to raise awareness that is inclusive. But I want everyone to do it this way. I don’t want anyone to put their own spin on things or putting shaving cream in faces. Because that’s been done to death and I also have an irrational fear of things on faces. Keep it simple and just put your feet in! It’s a lot easier to clean.

What does the challenge have to do with Muscular Dystrophy?

It really has nothing to do with Muscular Dystrophy. Like I said in the last question, I just created it as a fun, simple, and unique way to raise awareness that everyone, including people who are physically disabled, can take part in. I guess you could say that the slipperiness of the shaving cream kinda simulates how unstable you feel trying to stand up in the early stages of Duchenne Muscular Dystrophy when we began losing our ability to walk. But I rarely mention that part for the sole reason (no pun intended) that I don’t want anyone to stand up and then fall and get injured. So if you do the challenge, sit! I have to say it’s a pretty satisfying experience!

Why does it look like only girls are doing it?

It looks like it, doesn’t it? Fact is women are much more likely to do it than men. I ask everyone to do it. Men, Women, and kids. I don’t just ask women. Guys are usually like “my girlfriend/wife/etc, will do it". But they themselves usually chicken out. But again, the challenge is open to everyone of every age. Kids have so much fun with it, but adults enjoy it too. 

In Conclusion.

Don’t assume something and judge another person because you don’t understand something. It’s harmless fun, and it makes someone who doesn’t have much they can physically do happy. This challenge is really important to me and I want more people to take part in it, so it goes viral.

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.

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