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

Open Heart, Open Mind: Interabled Relationships and Dating Me💘

Hi everyone, I want to talk about "Interabled Relationships" and what it would be like to date me.

 

An interabled relationship is a romantic partnership between a person with a disability and someone without one. These relationships are becoming increasingly common, challenging societal misconceptions about disability and demonstrating that love transcends physical limitations. Like any relationship, interabled couples support each other in various ways, with the non-disabled partner often providing physical assistance, while the disabled partner may offer unique perspectives and emotional support. 

 

Interabled relationships can foster greater empathy, patience, and understanding in both partners. They often require clear and open communication, which can strengthen the overall bond. These partnerships celebrate diversity, promote personal growth, and can help break down traditional gender roles, especially in caregiving dynamics. While interabled relationships may face unique challenges, they are fundamentally similar to any other romantic partnership, built on love, mutual respect, and shared experiences. 

 

Relationships are unique, and each person brings their own set of experiences to the table. As someone living with Duchenne Muscular Dystrophy, I want to share what a relationship with me will look like. In this post, I'll provide an honest look at the pros and cons, my expectations, and some distinctive features that characterize a relationship with me. Whether you're curious about dating someone with a disability or simply interested in understanding different relationship dynamics, this breakdown will give you a clear picture of what to expect when dating me. My goal is to offer a candid glimpse into my world and how I approach relationships.

 

A Relationship with Me: What would it be like?

PROS:

• I'm not controlling, and not much makes me uncomfortable, so you can do whatever you want.

• I'd treat you with respect.

• I'd show you the love and affection you deserve.

• I'd tell you that I love you and that you are beautiful.

• I'd never abuse you emotionally or physically because I can't and I wouldn't anyway.

• You can experience road trips across the country with me.

• We'd go out as much as you want.

• We'd stay in as much as you want.

• Anywhere you want to go, we'll go.

• I enjoy the outdoors.

• I will never cheat on you.

• I don't mind cuddling or public displays of affection. I might need a little help with cuddling, but I'm sure I would love it.

• It would be about you.

• I have a great dark sense of humor and will absolutely make you laugh.

• My disability doesn't slow me down much, so we would still be able to do a lot.

• I'm great with children, and they are usually fascinated by me and like to be around me. 

 

CONS:

• The most obvious is that I'm physically disabled.

• I don't have a job, but I am on Social Security Disability.

• Certain aspects of the relationship, such as sexual contact, might be a little more challenging. However, this doesn't mean I'm not open to it.

 

What I expect:

Absolutely nothing aside from the basic relationship parts. We show each other respect and stay faithful. Actually, there's one other thing: I expect open communication. If something I do bothers you, please tell me so we can discuss it and I can address it. Also, if I ever tell you I don't want you doing something that you want to do or enjoy doing (that's more than likely never going to happen, lol), I want you to question my reasoning, and if the reason isn't rational, then you do it anyway. 

 

The only request I have is I'd like to do the shaving cream challenge with you as much as we can and engage in the similar sensory therapy activity occasionally. These are fun, bonding experiences that I enjoy. Otherwise, whatever you want to do is fine by me.

Companionships: What are they?💘

Hi everyone,

The topic of my last blog post was dating and disabilities. I stated I was seeking a female partner, more for companionship than for a romantic relationship. I want to explain the concept of companionship and what it entails.

Introduction

Companionship is a close and supportive bond between individuals, involving shared activities and emotional support. This blog post explores the dynamic nature of companionships, delving into their potential for emotional connections, romantic gestures, and shared experiences. 

Companionships: Beyond Definitions

A companionship goes beyond the usual understanding of relationships, becoming a platform for emotional and romantic dimensions. These relationships, built on friendship and understanding, create strong emotional bonds and can include romantic gestures and physical closeness.

Shared Experience: The Heartbeat of Companionships

• Casual Conversation

Conversations are essential to companionships, whether they involve small talk or lengthy discussions on various subjects.

• Outdoor Activities

Engaging in outdoor activities like walking, hiking, and biking allows for shared moments in nature.

• Dining Out

Strengthen the bond through shared cooking experiences or dining out at restaurants.

• Movie Nights

Whether at home or in a theater. Cinematic experiences can strengthen the bond and can create engaging conversations about the film.

• Traveling

From local destinations to long road trips and other extensive vacations, adventures in new places leave a lasting impact.

• Games and Hobbies

Engaging in shared hobbies like video games, board games, and sports creates joyful moments and builds bonds.

• Attending Events

From concerts to sports events, shared cultural experiences enhance companionships.

• Supportive Moments

Through both tough and happy times, companions offer constant emotional support and celebrate together.

• Volunteering

Involvement in community service fosters a stronger sense of purpose in a companionship.

• Relaxing Together

The foundation of intimate companionships lies in quiet moments of gaming, reading, music, watching TV and movies, or simple togetherness.

Characteristics of Companionships

• Shared Activities

Activities provide a pathway for shared memories and experiences.

• Partnership

Companionships involve active participation from both parties, creating a sense of partnership.

• Diverse Duration

The duration of companionships can differ greatly, ranging from brief and casual to deep and enduring connections.

• Practical Aspects

Shared goals or activities enhance companionships.

• Structured Expectations

Different companionships may have different levels of structure and expectations.

• Common Purpose

Companionships can be based on a shared purpose or goal, such as working together or pursuing common interests.

Conclusion

Companionships that are built on shared activities and emotional bonds are difficult to define precisely. The bond between individuals in companionships is fortified through diverse experiences and shared narratives. The simple yet remarkable joy of being together allows companionships to thrive, establishing their significance as cherished connections in the complexity of human relationships.

Disabled Dating: Myths and Assumptions💘

Hi everyone,

I'd like to talk about dating for people who are physically disabled.

Dating for anyone is hard, but it's much harder for those with a disability, especially if they are seeking someone who is able-bodied. Unfortunately, there are so many assumptions and myths about dating someone disabled that seem to turn people who aren't disabled off to even considering an inter-abled relationship. I'm going to discuss some of these myths and assumptions and attempt to debunk them all. Hopefully I can sway peoples opinions and make inter-abled relationships more common. Whether a short or long term relationship or a companionship(which I'm seeking for the moment) or you know even just a friendship. So here we go!

• We can't have sex

The most common myth is that we are limited in intimacy and cannot have a fulfilling sex life. This just isn't true! Great sex is possible if you have a body and a brain. The media often presents a distorted image of how sex should be, featuring people with perfect bodies engaging in intense pornographic acts. This negatively affects everyone, disabled or not. Creative thinking, imagination, and good communication are the key ingredients for a satisfying sex life, and they are accessible to all.

• Disabled people are incapable of love

Of all the myths, this is absolutely the most untrue. Dismissing the ability of a disabled person to love and care for a partner perpetuates harmful stereotypes. Physical ability does not limit the emotional capacity of individuals with disabilities to express love and affection. In fact, individuals with disabilities might even demonstrate it better than those without disabilities. Our only desire is to receive love and affection.

• Our disability is a burden

Some able-bodied people might see the disability and assume they will be required to tolerate unreasonable burdens or responsibilities. This is also an untrue assumption. Having a disability is not a burden. Many people with disabilities can fulfil their own basic needs without help. Assistance from loved ones and caregivers is necessary not only for individuals with disabilities, but also for members of the able-bodied community who require support in different ways. Those with disabilities can provide emotional support, compassion, and companionship to their partners. Relationships involving disability are no different from able relationships as they require mutual effort.

• Dating someone with a disability will be boring

There's a common belief that individuals with disabilities can't take part in fun activities such as travel, concerts, and festivals. This is FALSE. People with disabilities may have different needs or may use different supports to take part in fun activities, but they can enjoy the same things that able-bodied people enjoy. Like any group of people, people with disabilities are diverse, and they approach life from many perspectives.

• Dating with a disability is awkward

Not true. Dating with a disability can feel awkward, but that's just a common experience in the dating world in general. While disabilities may lead to early candid conversations, they don't have to be the determining factor in the comfort level between two individuals. People with disabilities are as varied and multi-faceted as able-bodied people. They have hopes, dreams, families, hobbies, jobs, and responsibilities. There's so much more to discuss aside from disability and illness.

• People with disabilities are more likely to get offended

This is not true. When it comes to educating others about their conditions, many people with disabilities have a great sense of humor and patience. Sometimes, people without disabilities worry about accidentally miscommunicating or offending those with disabilities, but overly cautious language is usually unnecessary. While it’s important to be as respectful and kind as possible, people with disabilities don’t need the people around them to walk on eggshells.

• It's not possible for people with disabilities to have normal dates

This is not true. People with disabilities enjoy the same things as able-bodied people, including dating. People with disabilities can engage in common date activities, such as going to a movie, sporting event, or fancy restaurant. Sometimes, accommodations need to be made. For example, a person with mobility restrictions may need to park closer to the cinema door, or someone who lives with food restrictions may opt for a date that doesn’t involve a meal. These choices are simple and do not destroy the possibility of a great new relationship.

• We can only date within the disabled community

Many people think that individuals with disabilities can only be in relationships with others who have similar disabilities. This is untrue. A shared understanding of disability isn't necessary for a healthy relationship. People with disabilities have full identities. They can find mutual interests and fall in love with able-bodied people as well as other people with disabilities.

• It's not easy for people with disabilities to meet new people

This is not true either. Just like able-bodied individuals, people with disabilities have fulfilling and diverse lives. They engage in education, work, volunteer activities, and hobbies. People with disabilities are more than capable of meeting new people, in the same ways and places that able-bodied people would do so.

• There's no one out there for us

Sadly, many people with disabilities worry that there’s no one out there for them, but this is untrue. Disability does not need to be a barrier to finding true love, as many people with disabilities have successfully dated. Although finding meaningful connections can be difficult, disability should not be a barrier to finding a soulmate with billions of potential matches.

People in general often struggle with dating, but having a disability doesn't, nor should it, affect one's potential to find true love. Having an open mind and self-confidence is crucial for finding a good, healthy relationship.



Recently, I began looking for someone of my own. I’m just looking for a companionship with a woman, at least for the time being and a partner to do my Muscular Dystrophy Awareness Challenge with and maybe the sensory therapy thing. I'm not having any success with the dating sites I've tried. While I've made a few friends, I haven't found anyone who I feel a romantic connection with. This is the toughest thing I've ever done, not counting certain medical decisions. One thing I haven’t tried yet is asking a woman in person. I haven't had the opportunity to do so either. I have to put myself out there and meet new people, especially women. I'm afraid to DM any of my single Facebook friends on Facebook, as it would likely be inappropriate. All I want is someone to spend time and do fun stuff with. Someone I can love, respect, and appreciate. I know I can do it and I really want to get the chance to... I don’t want to be alone forever. I’m not getting younger, plus Duchenne Muscular Dystrophy is a terminal illness and I’ve outlived my life expectancy by 20 years. I don’t plan ongoing anywhere, soon, but you’ll never know. The time we have is short and uncertain. I really want to experience having a girlfriend before it’s too late. I think that’s what many of us in the disabled community want.



Thank you so much for reading!



*The Information in this blog was gathered from the websites below as well as some assistance from Chat GPT

https://www.sunrisemedical.com/livequickie/blog/january-2020/disability-dating-myths

https://www.sheknows.com/health-and-wellness/articles/1048707/top-five-myths-about-dating-someone-with-a-physical-disability/

https://chat.openai.com/auth/login

My Sundays with Kayla

Hi everyone, I would like to tell you about someone who is one of the most important people in my life and my favorite person ever. My wonderful best friend Kayla. I love her very much, and she means the world to me. She will forever hold a special place in my heart for as long as I live. I want to take a moment to share with you why she is so special and how she has impacted my life.

When I think of Kayla, the first word that comes to mind is caring. She's kind, open-minded, and fun, with a big heart. Her family, especially her sister and kids, love her dearly. They'd probably describe her as kind and loving, just like I do. Kayla is a beautiful person, both inside and out. Her kind eyes and warm smile reflect her caring nature. She has some interesting tattoos and piercings that reflect her unique style. Oh and she has really pretty feet too! Which I have mentioned to her on several occasions haha!

How We Met 

On January 2nd, 2019, a cold New England winter day, I met my friend Kayla. I had been living with my trach for about two months already and was recovering at a pretty rapid pace, but I still wasn't talking much yet. The healthcare agency, Bayada, had called us to say they were sending out a new aide named Kayla. I thought it was a little odd that they were sending an aide, as aides weren't really supposed to do anything with the trach, but we agreed to the meet and greet visit.

Around 6 pm that night, a red late-model Chevrolet Tahoe pulled into the driveway and parked behind my conversion van. My mom went to the door and let Kayla in. I was positioned in my living room where my front door was behind me, so I couldn't see people who came in until they entered the room. The first thing I heard was a very sweet, friendly young voice saying, "Hello, I'm Kayla. It's nice to meet you."

I should mention that I still wasn't able to speak yet, so I couldn't respond. When Kayla entered the room, I saw she was a pretty woman, about 5'2", with beautiful eyes behind her glasses. I mouthed "hi," and she smiled. This girl gave off really good vibes and seemed like an absolute sweetheart. I liked her pretty much right away.

Kayla told us about herself: she was 28 and had two kids, a twin sister, and a brother. We later learned that she had just returned from a trip to South Africa to visit family. This international connection added an interesting dimension to her background. We told her about us and what led to me getting a tracheostomy. After a few hours of the meet and greet, Kayla had to leave. Before she did, I showed her my Duchenne Muscular Dystrophy shaving cream challenge video, and she said it looked very comfortable. I asked her if she would like to do it before she went home, and I could tell she was hoping I would ask because she seemed excited.

Without hesitation, Kayla agreed to try the challenge. My mom told her to take off her shoes and socks and got everything ready. Kayla also had a beautiful star tattoo on her leg, which I thought was really cool. My mom brought out the tub filled with shaving cream and the cue card, and we filmed Kayla doing the challenge. She loved it, saying, "It feels good!" and laughing a little.

This encounter marked the beginning of a close friendship, as Kayla ended up working for us for almost four years. Over those years, Kayla and I became close friends, forming a strong bond. I met her kids and her twin sister, and we all developed a strong connection.

Shared Experiences and Memorable Moments

Kayla and I share many interests. We both love horror movies, country music, Ram trucks, and dark humor. One of our favorite activities is the Duchenne Muscular Dystrophy challenge, where we put our feet in shaving cream. Kayla really enjoys this, often saying the shaving cream feels super soft and smooth on her feet. Her kids love participating in this challenge too, making it a fun family activity. We've made it a tradition to do this challenge on holidays. 

We also occasionally do a sensory therapy challenge together, where we put our feet in various soft and squishy textures. Kayla loves this challenge as well, and it's become a therapeutic and enjoyable experience for both of us, though we only do it on rare occasions. 

I really enjoy our Sundays together. Spending time with Kayla and her kids is the highlight of my week. Her daughter is here almost every time and loves coming with her mom. She and I have a lot of fun either watching Disney movies, doing holiday challenge videos, laughing at ridiculous things, or watching me play video games, which I'm careful about choosing because she is still a child. Her son's visits are just as fun, even though he doesn't come as often. I always try to find fun things for us to do, and often my mom plays games with them. We've made so many great memories so far, including birthdays, family gatherings, and Kayla even came to an MD walk once. Every Sunday she drives an hour and a half from Westport, MA, to Yarmouthport, MA, and will get here either on time or a little early. She's been doing this for nearly four years, which really impresses me. She surprised me once after Valentine's Day in 2022 when she came down on a Monday just to put her feet in fluffy pink shaving cream for a Valentine's-themed challenge. 

Looking Back and Forward

Kayla has become one of my closest friends, and I hope we can spend more time together in the future. Our friendship demonstrates how meaningful connections can form in unexpected ways, even in challenging circumstances. We've shared both laughter and tears, which has strengthened our bond. I'm grateful to Kayla for being a great friend and PCA, and for supporting me through my challenges. Her presence has made a positive impact on my life.

Update

I was writing this blog post and then forgot about it when I went to Yellowstone. I hadn't finished it before something unexpected happened: Kayla had to quit. On November 20, 2022, about 19 months ago (or a little over a year and a half), Kayla reluctantly gave her two weeks' notice and had to end her employment with us for personal reasons. It was absolutely devastating to both of us because she didn't want to leave; she thought she would be here forever, and we had become family. She truly enjoyed her time spent with us. I went to bed in tears that night and couldn't sleep. I understood why she had to leave, but it still sucked, to put it lightly. This was a difficult time for us, as Kayla had become such an integral part of our lives. I really miss hanging out with her every Sunday, and I'm hopeful that one day she might come back to work for us again as a PCA. It would be wonderful to resume our weekly traditions and conversations.

If I could relive one day with Kayla, it's a tough choice because I would relive any day with her and her family. Those were some of the happiest days in my life. But if I had to choose, it would be her last day as my PCA. It was a difficult day, but I wish I could have expressed my appreciation for her friendship and care more clearly. I also would try my best to convince her to reconsider ending her employment with us because I didn't want her to go, and I would say whatever I could to get her to stay. There are things I wish I'd said that I can only discuss in person, and I hope I get the chance to do so someday.

Kayla has been a significant part of my life, and I'm thankful for every moment we've shared, even the challenging ones. Whether as a PCA or just as a good friend, I look forward to the possibility of creating more great memories together in the future.

The Bucket List

Hi everyone,

Everyone has a list of things they want to do or achieve in their lifetime. This is what is known as a "bucket list". About a month ago, a young man by the name of Declan, passed away from complications caused by Duchenne Muscular Dystrophy. Dec and his mom, Alexandra, had a YouTube channel that I recently subscribed to and started watching their videos. The channel is called Decs Rolling Bucket List and it documented their completing of the activities on that list like travel destinations and meeting his favorite YouTuber among other things. Declan had a similar outlook as I do, where he made a decision to live his life to the fullest despite the illness. I found out he passed a few days after and I recently watched the Eulogy given by his best friend, his wonderful mom. Alex plans on continuing to fulfill Declans bucket list. I'm so sorry your loss Alex… It looks like the two of you had a similar relationship as my mom and I. Remember that he will always be with you in spirit and memory. May he rest in nothing but the sweetest of peace fellow Duchenne Warrior.




As you know I myself suffer from Duchenne Muscular Dystrophy. I was diagnosed in 1983 at the age of two and given a life expectancy of 18 to 23. Somehow I'm going to be 42 in a month. While I am doing very stable and healthy and don't plan on going anywhere soon, I still have a merciless terminal illness and I don't know what the future holds. There are still a lot of things I would like to do in this life that I hope to accomplish. I fully intend to live my life to the fullest as well. Honestly, none of us really know when our times up regardless of health or illness. I think we all should work on a bucket list and try to do as much as we can. We only live once. I'm going to include my bucket list below. My mom and I plan on getting out to do things as long as I can. So here we go.



Finding love! Either a girlfriend or female companion is at the top.
Make inter-abled relationships common.
Get my Muscular Dystrophy shaving cream challenge to go viral.
Get some big celebrities to do the MDA shaving cream challenge.
Find someone to do holiday themed MDA challenge videos again with.
Get my MDA shaving cream challenge on the news channels.
Get all the reporters and anchors from all New England news channels to do the MDA shaving cream challenge.
Get more of you on my Facebook to do my MDA shaving cream challenge(Ask me about it!).
Get more people to do my sensory therapy activity/challenge with your feet(Just ask lol. It's fun!).
Invite more of my former classmates over.
Drive across Canada.
Visit Vancouver.
Visit the Pacific Northwest of the United States.
Visit Yellowstone(couldn't get in last year).
Visit other National Parks in the United States and Canada.
Visit the Mall of America.
Visit San Diego Zoo again.
Visit the north side of the Grand Canyon.
Visit the 9-11 museum in NYC.
Visit the crater in Arizona.
Visit Central Park in NYC.
Go on another cruise.
Get a dog.
Get new rims for the van.
Meet my friend Jasmine in Canada(she's a artist and lead vocalist for Polarity).
Meet more celebrities. Actors, Actresses, and Musicians
Be an extra in an Alien film or one of the Walking Dead spinoffs(as a zombie because I probably wouldn't survive long in an apocalypse environment).
Feel sand and mud again. Its been a long time since I walked and for people like me who have lost the use of their legs you'd be surprised at how much we miss the ground under our feet. It's the biggest reason why my friend and I started the sensory activity.
Win a powerball jackpot
Get the cat to sit on my lap for once… Pepper you're an asshole!
Get a tattoo. That can't happen now though I'm on a blood thinner.





I guess that's it for now. A lot of these are going to be hard to accomplish because of the amount of travel involved and handicapped accessibility. I mentioned my challenge a lot lol. I just don't have anyone to do it with currently. I'll probably be adding more over time if I think of anything else.

Footprints in Mashed Potatoes: Sensory Therapy for your feet👣

Hi everyone,

I want to share a fun sensory therapy activity I've been exploring since 2019. It involves putting your feet into different substances, similar to "sensory walks" done in some preschools. This idea stemmed from my shaving cream challenge, and my Occupational Therapist thinks it's great.

 

How to do it:
Fill a tub or aluminum pan with your chosen substance - it can be food-related or inedible like shaving cream, slime, mud, or spa gel. The most important safety rule is to always sit in a chair while doing this activity. This is crucial to prevent slipping, as some substances can be very slippery. Sitting ensures you stay safe while enjoying the experience.

Once seated, remove your shoes and socks, and immerse your feet in the substance. Describe the sensation you feel. I recommend trying various textures for a diverse experience. If indoors, have a towel and water tub ready; if outdoors, choose a warm day with access to a hose. We've used pancake mix, mashed potatoes, cool whip, jello, pudding, marshmallow fluff, mud, slime, shaving cream, and spa gel for jelly pedicures. Feel free to use whatever you prefer, but always prioritize safety.

Purpose and benefits:
This activity serves as sensory therapy, stimulating the sensitive nerves in your feet. It can improve circulation and sensation, especially with warm substances. Benefits include reducing pain, inflammation, stress, and improving sleep. It's particularly helpful for those with damaged foot nerves or autism, but anyone can benefit. It's like a spa treatment or massage, potentially great for skin health too.

Personal experience and mental health aspects:
After surgery on my feet when I was a teenager, some nerves in the soles of my feet were damaged. This left them extremely sensitive to touch, yet paradoxically numbed them to where I couldn't feel soft or squishy sensations on the bottom of my feet. This therapy has been instrumental in helping restore more normal sensation. Recently, I began seeing a mental health counselor for depression. They enthusiastically support this activity, urging me to involve others. It's important for my happiness and mental health, and it benefits those who participate too. Research shows it's particularly calming for individuals with anxiety and ADHD.

Initially, I started this activity with my best friend Kayla. Doing this with her was extremely important to me, and I was so happy to share the experience. She enjoyed it too, which made it even more special. Unfortunately, we had to stop because her partner at the time was uncomfortable with it and refused to understand or tolerate her doing it. This made me feel like I was doing something wrong, like I was a freak. The whole experience left me feeling hurt and misunderstood. It made me hesitant to continue or ask others, fearing they might react similarly.

However, I decided to give it another try and was pleasantly surprised by the positive reception. I shared about it on social media, and many people were supportive and eager to try it. This helped me realize that there was nothing wrong with the activity or with me for enjoying it.

Who can participate:
Everyone is welcome, though girls tend to be more receptive than guys. Kids especially love it for the sensory experience and the chance to make a mess. My physical and occupational therapists, as well as teachers and healthcare workers, endorse this as both physical and mental therapy.

In conclusion, this activity has been a source of joy, social connection, and therapeutic benefit for me. The sensation of different substances squishing between your toes is incredibly satisfying and fun. That's actually one of the best parts!. It has the potential to help many others. Please just remember, always sit down to ensure safety, and enjoy exploring these delightful sensations with your feet in a comfortable setting!

Things used so far:

Pudding
Jello
Mud/Fake Mud
Mashed Potatoes
Bisquick Pancake Mix
Marshmallow Fluff
Nutella (gross) (It felt good. It was soft and very thick, but getting it off was
really tough.) 

Spa Gel
Slime
Cool Whip
Shaving Cream
 

Mud and shaving cream combined
Spa Gel and Shaving Cream combined
Mashed potatoes and shaving cream combined
Cool Whip and Shaving Cream combined
Nutella and shaving cream combined



Any suggestions?