Duchenne Ukraine Presentation

Hi, I hope everyone is doing well and that you are finding today’s program, presented by Duchenne Ukraine, to be beneficial for your journey with Duchenne. I would like to express that it’s truly a great honor and a pleasure to be asked to join you all here today, to share a glimpse into my life with Duchenne! 

My name is DJ Kimble. I am 42 years old, just about 43 and I have Duchenne Muscular Dystrophy. I live at home with my parents in the United States, in the state of West Virginia, a very rural area and I am the oldest of three children. I was a spontaneous mutation with no known family history of Duchenne.  

I was diagnosed with Duchenne in 1982 when I was two years old. My mom began to notice that I was having difficulty keeping up with my younger brother and that instead of crawling like most children, I would just roll or scoot to get to where I wanted to get to. When she shared these concerns with the family doctor he developed a few concerns, as well, when he saw that I was falling behind in all the other milestones that all children are measured by. As I briefly mentioned earlier I live in a very rural area with just a local clinic, so they were unable to run any tests to determine what was causing my inability to do the things most other children were able to do. I was sent to the biggest hospital in our area, which was a 4-hour drive away. When I arrived they first ran a blood test and saw that my creatine kinase or C K levels were much higher than they should have been, which was an indication of a muscle issue. So the next test was a muscle biopsy, in which the removed a small portion of my bicep muscle, I actually still have the scar. With this test, it was determined that I had Duchenne Muscular Dystrophy. 

After the diagnosis, It was very hard on my parents especially my mom because she had so many dreams for me and in that moment everything seemed lost. 

At that time in 1982, there was very little knowledge about Duchenne other than that it was a progressive and fatal muscle-wasting disease that affected most of the muscles in the body with an average lifespan of the early teens. The doctors advised my parents just to take me home, to love me, and to enjoy the time they had with me. At that moment, I can truly understand why my mom felt like every dream she had for me would never come true. But… I also have to give my mom great credit for the courage that she showed to not let that moment define my life. She made the decision shortly after my diagnosis that I would live a normal life just like every other kid did, the only difference was that I just happened to have Duchenne. I believe that decision was the absolute best decision that my mom could have made for me because it allowed me to understand everything about life and that is why I am the person that I am today, in this moment!

The community that we lived in was a tight-knit community, where everyone knew everyone and looked after each other. I believe that growing up in this community was a huge benefit to me because it allowed everyone to know me and to accept me for who I was, and not just that I had a disability. While I was accepted and seen as just another kid at home and in my community, it was a very different story when we would go to other communities where there were more people, people who didn’t know me and people just didn’t seem to be as accepting when they didn’t know me. I always found that people would either stare, point, or just whisper amongst themselves. I can remember feeling really bad about myself like I had something wrong with me and that nobody wanted me around. I just couldn’t understand why people were like that towards me because I felt like I was just as normal as anyone else. As a result, I developed severe anxiety, which led to me being extremely nervous when going out among those who didn’t know me, it kept me from doing a lot of the things that brought joy into my life. As I look back at that time of my life, as an adult, I do wish that I would’ve been able to overcome those feelings of unacceptance and anxiousness to do the things that I had missed out on but I also understand that as a child those feelings are much more difficult to understand, let alone, to find a way to overcome them, too. 

I have to say that I did have a fairly normal early childhood for the most part. I did struggle to do a lot of the things that I wanted to do, although it was truly difficult at times, I did always find the ability to do them in a way that worked for me. Those of us with Duchenne lack many abilities but Ingenuity is not one of them, we do possess this ability in unlimited quantities. If we love and enjoy doing something, we will mostly, if not always, find a way to do them. 

The moment that really began to limit my ability to do a lot of things was when I stopped walking around the age of 9. I can even still remember that exact moment, exactly what I was doing but the biggest thing that I remember even more is the feelings I had, it was a mix of emotions on one hand I was sad because I knew that was probably the last I would walk, on the other hand I was so very relieved because I would never have to be so scared of falling, I would be able to keep up more with everyone, especially my brother, cousins and friends, and I could also be much more independent instead of having to have someone to hold me, whenever I wanted to do anything. 

I know as parents, seeing your son or daughter losing their ability to walk is so heartbreaking and frightening, as you see the effects of Duchenne progressing in so many ways, but please take comfort that yes, those of us with Duchenne do grieve the loss of this ability, in ways that are mostly private but above all we are absolutely relieved in so many more ways, too. We always keep our heads up as we adapt and overcome these physical challenges in life. 

As I got older and became a teenager, Duchenne continued to progress a lot quicker than I expected as it was all I could to just drive my wheelchair and to get my arm up on my tray to do everything from eating, doing schoolwork, drawing or to even scratch my nose. It was just a struggle to do absolutely anything that required any amount of physical exertion. These struggles did weigh heavily on me but they paled in comparison to the mental aspects that I truly struggled with so much more. which were mostly the result of my home environment and social exclusion. 

When it was time for me to move on to junior high and high school it meant that I was going to a different school, a bigger school with a lot more kids that I didn’t know and teachers that didn’t really know anything about me, except for one or two that knew me from when they taught 7th and 8th grades at my elementary school. This was a very daunting task for me because it wasn’t just a new school that made it hard but I had pretty much lost most of my abilities. The one saving grace that I did have at that time was my best friend, Clay. He offered to be in every one of my classes so that I would have someone I knew with me to help me with things. Clay was a very dear friend of mine. Not only did he help me with things physically but he did something much more important for me and that was that he allowed others to see me as just one of the guys. That was cool, funny, and just as normal as anyone else was. His simple gesture of just being my friend allowed me to make a handful of new friends that also helped me throughout my schooling. If it wasn’t for my friends wanting to help, I probably would not have been able to finish school on my own. I will always be forever grateful to him for that!

Having this handful of friends was very helpful and did go a long way in helping me finish school, but there were also plenty of others that just couldn’t get beyond my chair and they wouldn’t even acknowledge me, let alone see me as an equal. I became very self-conscious about myself and would try to make everything about me perfect in the hopes of having others see me and not my chair. I didn’t know it at the time but I became very OCD about everything and if it wasn’t right, I just couldn’t deal and it would upset me so bad that I would just cry before going to school because I knew people would notice and not see me as an equal. One of the hardest parts of not feeling like an equal was when about half of my friends that I went to elementary school with and were quite close to, wouldn’t even acknowledge me anymore because they were worried about what their new friends would think. They all knew how much I valued them as friends but it still wasn’t enough for them. 

My struggle to fit in socially was mostly because people really had a hard time seeing beyond my wheelchair, to see me, for me. Also, with the inability of doing things for myself, I had to rely on the help of others, primarily my mom, to do just about everything. So, I wasn’t really able to hang out with friends from school very often, if at all, to attend the activities that everyone else was enjoying at that time. I honestly had very few opportunities to socialize and did truly miss out on so many things during this time of life, unfortunately. The one aspect of socializing that I never even had an opportunity to even come close to experiencing was dating and romantic relationships. It wasn’t that I didn’t have the same feelings and emotions that everyone else was having at that time. What prevented me from having these experiences was that I just wasn’t able to get the attention of very many girls to even talk to me and to just be my friend, let alone see me in a romantic way. I’m not sure if it was because of me having Duchenne or if it was more of not wanting to be seen with someone in a wheelchair and having to always explain to their friends or peers why they were with me afterward. I tend to believe the latter because if they would have just taken a moment to get to know me, they would have seen how great I actually was. 

If it’s okay, I would like to share the one time that I thought I was almost in love. I had a huge crush on a good friend that I had known since elementary school. To be honest, I’ll probably always have that crush. She does know and has always known.

Perhaps, if it was another time and another place, it would have worked out but it just wasn’t written that way, I suppose. I know technically that doesn’t actually count, but I was still close and that so counts to me. Perhaps one day I will finally get to know what that feeling of falling in love actually feels like, the promise is there now more than ever but if it never happens, that’s OK too! 

I do absolutely wish that I would have been able to experience all the aspects of being an adolescent but honestly, I really don’t have any regrets to speak of. That’s one thing that age teaches you is that life is just truly too fragile and short for having regrets and I try every day to not let the opportunity of regret to still away my joy for life, I hope that everyone here today remembers that in your lives, too. As I wrap up this portion of my life, I would like to add that I did get be with my friends socially just once and that was the night of my graduation, when I hosted a party in the forest, and it was exactly everything I expected it to be and so much more

After high school, I was looking forward to what the future held. It was uncertain, to say the least, but I was still optimistic about what it held for me. Unfortunately, I never quite got the chance to discover what my future held. When I was 19, exactly one year after graduating, I suffered a serious health setback that would change my life forever. I had developed a very bad pneumonia. This pneumonia was the worst one I ever had, the doctors recommended that I be intubated and put on a ventilator to breathe and to allow me to have a better opportunity to recover. My parents and I agreed, even with the possibility that I may never breathe on my own again. Unfortunately, that was the outcome, it was suggested that I should have a tracheostomy, which would be my best option since it would allow me the opportunity to go home instead of residing in an institution. So, I went through with the tracheostomy, mostly because I wasn’t through living life.  

My life was forever changed in that moment for the rest of my life. The biggest change was that someone would always have to be with me to care for me. Thankfully, my mom was to be that person, as she always has throughout my life, to be that person to care for me and I will be forever grateful to her for that.

After several more weeks in the hospital recovering and learning my new life, I was finally able to return home. 

Living with a tracheostomy and being on a ventilator is a very hard thing to get used to. I have always been anxious throughout my life, but it was even worse, to be honest. I would, and do still worry about numerous things, with all of those worries being driven by not being able to breathe and not finding help in time. Thankfully, I have found ways to somewhat manage my anxieties and function normally with the help of therapy and other ways to truly help. I always like to encourage others with Duchenne, through my work, to share your struggles with your family, your friends, or someone you know that will keep things confidential, there’s nothing more helpful sometimes than to simply talk about things, thoughts carry an enormous burden on us and letting that burden go does help in so many ways, I too, have finally learned that.  

Life on a ventilator, a machine to keep you alive is a very tough thing to become accustomed to, and honestly, I’m still doing so but I haven’t allowed that to deter or deny me joy in life. This part of my life may seem like the hardest part but for me, it truly isn’t. The hardest part for me has been the one thing I never expected, and that was losing my ability to communicate, as a result of becoming ventilator dependent. The ability to communicate was truly the last connection that I still had with the outside world and now that was gone, too. You never really think about communicating in your life until you no longer have the ability, to. Then you truly realize the scope of how much you actually communicate in your daily life, it’s involved in every single aspect, to a degree. The only person that I was still able to communicate with was my Mom because she was able to read my lips, most of the time anyway. If I wanted to speak to anyone else, it was through her as she translated for them. As you can imagine, I’m sure that’s a very difficult way to do so and you’d be absolutely right. This aspect of my life did cost me most of the relationships that I had with my family and a few friends. It was like they immediately saw me as someone else but I wasn’t, I was the exact same person, the only difference was that I could no longer communicate with them. I did struggle very much at trying to understand why they could no longer see me for me, not that I couldn’t speak and that I was no longer viable to them anymore. This life was the life I lived for the following 15 years of my life.

Thankfully, this wasn’t the life that I wasn’t beholden to for the rest of my time in this world of ours. In 2015, during a very difficult time in my life, I was introduced to an absolutely amazing, life-changing technology. That truly gave me a life back, my life, one that I thought was gone forever, but it so wasn’t. Once I learned and mastered eye-gaze technology, the entire world opened up to me in ways I never imagined, it allowed me to communicate again, and I reconnected with a lot of my family and friends, it allowed me to finally meet others who had Duchenne, up until that time I never had the opportunity to meet someone else with, Duchenne just like me, I thought that I was the only that understood what it was like to live with Duchenne but that was so not the truth, they’re were so many who did truly understand, that absolutely helped me in ways that nothing else ever had. I’m sure everyone here with us today has experienced this same exact feeling and I’m sure you’re all remembering that feeling again just like I am, too. It so absolutely feels like a massive weight has been removed and you can truly breathe again, even with the enormous weight that Duchenne brings to all of our lives being able to just breathe, even for just a moment, can mean absolutely everything. 

Receiving my voice again and meeting others with Duchenne were two of the greatest moments of my life, and I feel so lucky and blessed to have experienced both, but there was something missing in my life. With the help of eye-gaze and the new connections I made in the Duchenne community, it allowed me to rediscover myself in ways I never considered and to find my true passion and purpose in life, which is advocacy within our community of Duchenne. I feel as an adult with Duchenne that it’s a responsibility to share my journey with Duchenne to help everyone touched by the diagnosis to find their way in life through education, understanding, and inclusion into every aspect of life, no matter where we live, the language we speak or the culture we celebrate, we all deserve to live the life we hope for, despite Duchenne, to not only survive but to truly thrive in life. 

Today I have the absolute pleasure to work with 3 truly wonderful organizations that allow me to live my passion for advocacy each and every day, in ways that allow me to truly make a difference in this wonderful community of ours, the Duchenne community. I spend the vast majority of time with Family, Friends, and Duchenne, who I am proudly representing here with you all today. Family, Friends and Duchenne provides me a platform to share my life story and to have a truly intimate ability to shine a light on what we as a community experience every single day in our very own communities and homes. We celebrate this gift that has allowed us this opportunity to touch the life of every single individual touched by a Duchenne diagnosis no matter their relationship or who they are, everyone truly matters, just like every single one of us here today. I would also like to mention the other organizations that provide a platform for me to help with other aspects of the lives of those with Duchenne. Most of the aspects of the Duchenne journey overlap in each and every organization that calls to Duchenne community home, we all just have our own unique way of how we support the community just like every individual with Duchenne differs from each other. These 2 organizations are Parent Project muscular dystrophy, where I hold the position of secretary for the adult advisory committee, and The Jett Foundation, where I am a community ambassador. I truly love this work that I do, each and every day, the one thing that I hope you remember from today is that each of you knows that you do matter, your life does matter and how you live that life is entirely up to you, it’s your destiny, despite Duchenne. 

Thanks so much, everyone for having me, today, it was an absolute pleasure, honor, and a highlight of my life, truly.