by DJ Kimble
about the author:
DJ Kimble is 43 years old with Duchenne Muscular Dystrophy. Thank you, DJ, for taking the time to share your valuable expertise and insights with us. To contact DJ, email him at DJ.Kimble@FamilyFriendsAndDuchenne.org
43 years old with Duchenne
Hi, my name is DJ and I’m 43 with Duchenne!
I promise that is no typo, I even have a hard time believing it at times myself! If you would have told ten year old me that I would still be here to this very day, I would not have believed you.
The reason I say this is because as I was growing up all I really knew about Duchenne was that I would lose every ability I have and most likely not see beyond my teenage years. As a child and teen to overcome that reality it’s tough but when you have the belief in yourself with a great support system in place, which for me was my mom, you are able to thrive in life!
My Duchenne Diagnosis
I would like to share a little more about myself and my progression with Duchenne. I would like to start with my diagnosis.
At around the age of two my mom noticed that I was having trouble keeping up with my brother even though he was only a year old. She also noticed that I would never crawl and would only roll to where I was trying to go. That was the reasoning behind her having me looked at, so the doctors did a blood test and they found that my ck levels were high.
The next test was a muscle biopsy and that was the diagnosis of Duchenne, unfortunately. My
parents were upset about it but they decided I would have as much of a normal life for as long as I was still here. I believe that decision was the best decision they could have made for me and I’m truly grateful for that decision to this very day.
Losing the Ability to Walk
I had a normal childhood for the most part until I lost my ability to walk around the age of ten, which did limit some of the things I could do.
The way I overcame this was by maximizing the things I could still do like hanging out with my family and friends, going to the river to float and fish, playing video games and drawing were my hobbies. The most important ability I continue to maximize to this very day is the ability to learn and experience new things each and every day!!
I feel I must discuss the major life changes that I experienced one year to the day of graduating
In May of 2000, I developed a very bad pneumonia from aspiration. (Aspiration pneumonia is when a person fails to keep food and drink from entering their airway during swallowing.) This pneumonia was the worst one I ever had, the doctors recommended that I be intubated and put on a ventilator to breathe for me. My parents and I agreed to do so, even though there was a good chance I would never be able to come off the ventilator.
Unfortunately that was the outcome and my life was completely changed from that moment for the rest of my life. The biggest change was that I could never be left alone ever again, someone would always have to be with me to care for me. Thankfully, my mom stepped up once again to be that person and I will ever be grateful for that. Over the next 14-15 years I tried to enjoy my life as much as possible and I was able to do so.
Losing Touch with the Outside World
There was one aspect of life that I did lose contact with and that was the outside world. The reason this happened was because at the time I was put on a ventilator, I lost all use of my arms and I also lost the ability to move air over my vocal cords to speak.
During the 2000’s the world was drastically changing with the Internet and the iPhone. Unfortunately I was not really able to experience that change with the rest of the world. I always felt like I had so much to offer but I was just squandering away my ability to make my contribution to the greater good!
Eye Gaze Technologies
I would still be doing that if I wasn’t introduced to eye gaze technologies by a very dear home
health nurse who spoke with me about it and set up a meeting with a speech pathologist to discuss communication options for me!
I know this doesn’t sound like much but with eye gaze, I was able not only to communicate once again but it also opened the entire world back up for me by allowing me to operate my computer with just my eyes.
I just cannot put into words how much this has drastically changed my life for the better. It has opened so many doors of opportunity for me that I hit the ground running and accomplished more in the last five years than the first 34 years of my life.
My Contribution to the Greater Good
The most important thing that I have accomplished during this time in my opinion is becoming a strong advocate for the Duchenne community.
I currently spend a great portion of my time working for Parent Project Muscular Dystrophy by being a member of the PAAC, which is their Adult Advisory Committee. In the PAAC, we work to improve the lives of adults living with Duchenne by providing them with the encouragement, resources and life hacks they need to allow them to thrive in life as adults!!
I have found this work to be very rewarding for me because if I can help other adults in the position I was once in from having to feel like they were just wasting their given abilities and not contributing to this world, even if it’s just one person, then I have made this world a better place. That is the true meaning of a great life by striving to make this world a better place each and every day!!
I would like to thank Family, Friends and Duchenne for allowing me to share a small part of my story here today.
If anyone has any questions, please feel free to comment below. If you would like to discuss the PAAC or to learn more about eye gaze technologies please contact me at DJ.Kimble@FamilyFriendsAndDuchenne.org!!