My History with Muscular Dystrophy

The goal of my blog has always been about my faith in Jesus Christ and to spread my testimony. But, I have realized that there is more to my story that needs to be heard. Living with Duchenne Muscular Dystrophy, and this is where I will tell it.


I was born on March 20th, 1987 in Flint, Michigan. I was a normal, healthy baby boy. Six months later, I was tested for Duchenne Muscular Dystrophy since there was a possibility. The test results came back positive for the disorder. As you can imagine, it was really heartbreaking for my family to accept. My uncle, my mother's brother, had the disorder, as well as my cousin, who passed away eleven years ago. DMD runs in my mother's side of the family. My older sister also has the gene and is a carrier, but was blessed with a baby girl. It is very rare for females to have DMD.


For the first years of my life, I felt fine and behaved like anyone else my age. Other than over sized calf muscles (a common symptom that develops early) and being a bit slower than the other kids, I was pretty normal. Thinking back now, I can recall some situations where it was apparent I wasn't as strong as a normal healthy boy should be. But at the time, I never really felt DMD holding me back until I was eight and in the second grade. I was a lot slower than the other kids, and some things I simply couldn't do as well on the playground. The next year, it was pretty apparent to everyone I was quite different. Trips and falls started happening. As you can imagine, other kids could be quite cruel about it. But I was fortunate to have a few friends to stick up for me and have my back. When the falls happened more frequently, they would be there to help me back up.


I was assigned a physical therapist to see me and work with me several times out of the year at school. The less muscles are used, the quicker DMD progresses in those particular muscles. It is important to do range of motion exercises to slow the degeneration. I had to have casts made of my feet up to my calves so that plastic braces could be made. The goal was to keep my feet straight as possible and keep me walking. But I really hated those things. They were not at all comfortable and caused me to sort of hobble along instead of walk. It made me stand out all the more and I hated it. I had a good friend in my class that year who always stuck around to help me along.

One of the toughest parts of elementary school was gym class. I was never marked down, of course. But it made it quite obvious to everyone how much at a disadvantage I was. Sitting down on the floor and how hard getting back up was frustrated me. I had to sort of walk my hands up a set of stairs to regain my balance and stand up. It was also embarrassing, especially when a lot of kids didn't really understand why I was so weak.


Despite my issues, I decided to join the Boy Scouts with several other boys from my grade and my best friend who was a year older. I was accepted and made friends, being a part of something that I will always remember. Independence was very important to me and I wanted to do everything others could. I even rode a four wheeler for a few years. DMD never kept me from living my life.

By the time I was eleven and in fifth grade, it was common for me to have a bump on the front and back of my head from falling and hitting the floor. It was decided that I should use a walker while at school. It helped me stay out of a wheelchair for awhile, but it was inevitable that it wouldn't hold me much longer.

Not all of the teasing and being made fun of the result of my DMD. I acted like an idiot on more than one occasion trying to get people to like me. What I didn't realize at the time was it just created more laughter at my expense. Of course, that is typical in an elementary school environment. Sometimes I look back to that time and really cringe at some of my antics.

That summer, things changed drastically. I would be in middle school or what some call junior high. I would be in a new building with long walks to my six different classes and everything in between. I had to get used to a wheelchair. I couldn't delay it any further. It had wheels, so of course I treated it more like a toy at first. I didn't anticipate that I would have to be more dependant on others, especially since my arms were not strong enough to push myself more than a few feet. I technically could still walk, so the insurance company wasn't going to fund a power wheelchair. That didn't become a problem because mostly everyone was willing to help. Kids and teachers both were very accommodating. Part of it was sympathy I'm sure, but I was an early teenager and I acted like it. I stopped the antics of years past. Progressing DMD has a way that matures you. But not all in a good way. I basically shut down and my shyness gained control over me. The longer I was around other people, the more I would open up. But I missed out on a lot of opportunities throughout my school years that I now regret. I did finally get a power wheelchair that winter. Walking wasn't much of an option anymore, except for standing. It helped in a lot of ways, and the daredevil in me drove it as fast as possible. Marks and holes in walls can confirm that.

One opportunity those of us with MD have is summer camp. The Muscular Dystrophy Association puts one on every June for anyone under twenty-one with any form of MD. The closest camp for me was on the shore of Lake Huron. I attended every year from the time I was nine years old to sixteen years old. It is a week long, sleeping over night in cabins. Every kid is matched with a counselor to assist and befriend them. It was always the one time it didn't matter that I had DMD because we were all given opportunities we normally didn't have in a general social setting. I always looked forward to it every year.


I had another problem develop soon after, called Scoliosis. Scoliosis is where the spine becomes curved from side to side. DMD plays a large role, but family members also have been known to pass it on as well. As it got worse, I could no longer sit up straight, and eventually I had to lean heavily on my left arm to keep my balance.


A couple years later, I was taken to a children's hospital in Chicago to seek options to help with my DMD. My cousin had steel rods inserted to keep his spine straight. We thought the same could be done for me. After undergoing many tests, they concluded the surgery would be too dangerous and possibly leave me paralyzed. It was not worth the risk.

My cousin passed away while I was thirteen. It hit me hard, we were pretty close and he understood what I was going through, due to living through it himself. He was seventeen. That was when it really dawned on me that I would die far younger than everyone I knew. I got it in my mind that seventeen would the end and I would never graduate high school. My grades were never anything to rave about before then, but after that I didn't see the need. I began to use that as an excuse to justify what really was a lack of ambition. I didn't know God or His plan for me. All I saw or thought was what was going to happen to me. Why plan for a future I wouldn't have?


Then came one of the hardest years I've ever experienced. I turned seventeen in the second semester of my junior year in high school. I was basically going to school, doing what I had to do, then going home. I shut down more than ever. I was literally so tired, I could barely sit up after my last class of the day. My teachers noticed that I was really struggling. After discussions, I was able to drop a few classes to make my days shorter. I would sleep from 7:30 PM to 9:00 AM, and still be tired in the morning. Once the last day of school came, I couldn't have been more relieved to get out of there. But, my problems didn't stop there.

During the summer, things took a turn for the worse. It would get increasingly difficult to breath while lying down. At first, I merely would get tired and wanted to sleep during the afternoon. I didn't feel like doing much of anything. I wasn't eating well at all, which had been an issue for awhile. Just drinking a glass of water would leave me short of breath. It got to the point where I had to sleep sitting up. I would even get confused and nearly hallucinate at times. Something was seriously wrong. I had been seeing my doctor, but he didn't really have any answers, until early July when I came in with an extremely low oxygen level. I was immediately sent to the hospital.


For a long time, I had not been expelling enough carbon dioxide and it built up until my blood became toxic. Doctors had to perform a tracheostomy, inserting a tube through an incision in my neck to get oxygen in my lungs and get me breathing on a respirator. Doctors speculated I would not have made it through the night if I had not come in that day. When I first woke up, I had an unknown tube in my throat and was unable to speak. My mother was there and able to explain the situation and I was able to stay calm. I was in the hospital for almost a month recovering. I would have to breath through a tracheostomy tube for now on. I was told I would be able to ween myself off the respirator through hard work, and regain my voice through therapy.

I was sent home to a radically different life. My independence was nearly gone, and taking care of me would require a lot more work. Fortunately, I was blessed with a family that has always been there for me. The experience turned us to God and we began our journey to get to know Him and find a purpose in all of our lives. After nearly giving up numerous times, I finally weened myself off the respirator enough to get through my day without it. Despite the speech therapy, I never found the strength to regain my voice. I would never speak again.


Throughout the next year, my parents and I found a church and began attending every week. Traveling was not an easy task for me anymore, always needing to pack supplies and equipment for emergencies. We also found a family we never expected to find at our church. That winter, we all got baptised. I could not be dunked in water obviously, but the ceremony was all the same. I could not return to my senior year of high school, so I worked with a tutor at home, and graduated with my class. I made it to eighteen and my life continued on.


November of that year, I faced another life changing event. My tracheostomy tube wore through my esophagus and into my carotid artery, causing me to start bleeding out and obstructing my airway. My scoliosis had twisted my airway off to the side, causing the tube to rub at a dangerous area. I regained consciousness briefly once the bleeding was stopped temporarily, and was airlifted to a university hospital best equipped to deal with the situation. They were successful, but it was unclear how I would recover. My waking moments were extremely depressing. I didn't understand why God allowed this to happen again, and I wished I hadn't survived. I couldn't move, my mobility was nonexistent and had to be heavily drugged to mask the pain. A feeding tube was inserted through an incision in the exterior of my stomach because I could not physically eat enough to sustain myself at a healthy level. I was in intensive care for about a month because my airway was so unstable. Their engineering unit had to design a tracheostomy tube that would not cause the same problem again.


I was sent home a week before Christmas, with strong painkillers to help me finish recovering. I didn't have the strength and pain tolerance to sit in a wheelchair, so I was stuck in bed. I ended up addicted to the painkillers, wanting more and more of them. My depression didn't help matters, leaving me in a very dark place. I spent my days watching movies and sleeping, feeling that was it for my life. I could only sit in my wheelchair for a half hour before the pain got to be too much. Then, we developed a way to use my computer from bed, allowing me to have some kind of a life. The painkillers didn't seem to be all that necessary anymore. I connected back with my friends, and my life became much brighter.

By then, it was clear my wheelchair would no longer work for me. We started working with a guy to mold a seat and put together a system so that I could sit comfortably and regain some of my mobility. After awhile, the new wheelchair was built and was delivered. I could sit semi-comfortably and move around the house. I worked to be able to sit in it for longer periods, but I never gained anything from it. I wasn't able to play my video games anymore because my hands were too weak to hold a gaming controller. I couldn't type or use a mouse from the wheelchair. It got to the point where the pain I had to go through to sit in the wheelchair just wasn't worth it. I knew that I no longer had the strength to get back to where I was before the previous November.


The doctors reacted like I was giving up on life. What they didn't understand was that I knew my limits. No matter how much I worked at it, I just wasn't going anywhere. Looking back now, I think that decision improved my life. On their recommendation, I was admitted into hospice care. Hospice is a type of care to improve the lives of the terminally ill and make them comfortable for the remainder of their lives. I wasn't waiting to die, I just accepted my DMD was at the point where nothing could be done to slow the degeneration. Instead of going to doctors, nurses and doctors came to me. An aid would also come and assist my parents in taking care of me. They are great people whose bedside manner caters to the specific needs of their patients, which is what I really needed.


I don't mean that things were not tough. Lying in bed all the time makes a person miss a lot of things. There are many things I took for granted before, and now I can no longer do them. I was losing a lot of strength in my arms and hands. Lack of use makes my muscles seize up in the positions they are most frequently in. For example, my arms and legs can not be straightened without severe excruciating pain, therefore my legs have to stay bent at the knee. Moving me at all is not an easy task. The same thing happened to my hands, making it near impossible to squeeze or hold anything. I had to learn to use my wrist more and my limited use in my fingers to move and click with my mouse, the only activity I can do with my hands. Most video games were out of the question due to me being too slow and unable to use a keyboard. Computer technology has been a life saver for me, quite literally. It has helped me immeasurably to continue using a computer, despite how much my DMD continues to progress.

Soon after that, I began having problems eating. Chewing had always been tough for years. But then I started having trouble swallowing. Every bite I took would either catch in my throat or cause a coughing fit. I knew that was it, eating was no longer possible. With the stomach tube inserted during my last hospital stay, nutrition formula had been pumped into me regularly for awhile. I had been eating only for the enjoyment and ritual of it. I could not eat large enough portions, so I also had to have the nutrition formula daily. But giving up eating completely was one of the hardest things I've had to do. Even now, I get cravings for foods I used to enjoy and I can't do anything about it.

Despite the hospice care, there is one trip to a doctor that I need to see every six weeks. Since the scare my tracheostomy tube caused rubbing through my esophagus, the tube has to be changed and cleaned to avoid a repeat incident. The only way I can get there is by ambulance transport. The procedure is quick and mostly painless. The toughest part is the ride itself. As time goes by, my body gets less tolerant of being moved around. Going from my soft bed that I spend nearly 24/7 in, to a thin mattress ambulance gurney is not a pleasant experience. My scoliosis twisted body does not fit the gurney well, so I have to be strapped in a position it does not like. Every time I make the trip, it seems to be more painful than the last.

Something I feel very self conscious about started to develop. My tongue started to enlarge and loosen due to weakness. Soon I could no longer hold it in and it began to hang out my mouth, which makes it very noticeable. Ever since, I have tried to avoid pictures being taken of me. I'm independent and intelligent, and I feel like it makes me look the opposite. Usually if I don't see it, I can forget about it while my mind is elsewhere.


In September of 2009, a few people suggested that I start writing about what I go through in life and my faith in Jesus Christ. Up until that point, I only dreamed of having a purpose that would make a difference. I never thought it possible in my condition. It wasn't enough to just live, I had to live for something to truly accept my Muscular Dystrophy. I decided to start this blog. My first post was my testimony and how I was led to Christ. Many more posts followed in the two years my blog has been up. The reaction my posts received amazed me. Writing really energized me deep inside, giving me what I dreamed of. Making a difference, even if it's only one heart at a time.


Duchenne Muscular Dystrophy is most certainly Satan's most powerful tool he wields against me, but it will not defeat me. My body may be weak, but my mind, heart, and soul are strong. God was my birth, Jesus is my life, and His glory will be my eternity. DMD is only one chapter among many. It is my hope that others with DMD will realize it does not define who they are or how they need to live their life. The way I have lived my life with hope and happiness despite everything, will testify to that fact.