Duchenne Muscular Dystrophy (DMD) is a Neuromuscular Disease, that effects all the voluntary muscles in the body. The muscles are lacking one of the main proteins called, "Dystrophin". Dystrophin is the protein that helps produce muscle, and without it the muscles atrophy or (waste away) slowly over time :(
DMD only affects males from birth. It usually isn't detected right away, things may seem normal at first. Parents might notice strange symptoms around age 2 or 3. They might notice trouble crawling, getting up from the floor, and a lot of stumbling. I was around that age when my parents first suspected something might be wrong. After many doctors appointments, I was diagnosed with Duchenne MD when I was 3 years old.
Living with DMD is at times very difficult at times for the entire family. At first my parents were very distraught when they found out what my future would hold. After time they came to accept my condition, and decided to treat me as a normal child.
I was raised in a neighborhood which gave me the opportunity, to develop great friendships. I went to the local schools with all my friends until 5th grade. I could walk well by myself until I was around 8 years old. Then it started to get harder and harder to walk, without falling down. It didn't take very long before I would fall and could not get up without help. The funny thing is I knew what was wrong but, I always tried to pretend I was just like all the other kids. My parents got me a motorized scooter so I could keep up with my friends. I was not very accepting of this so called, "Mobilty Aide". I would rather sit inside the house then feel different riding the scooter. I remember once, my mom had to bribe me with a pack of candy bars, to drive my scooter around the neighborhood. After I did that, I realized that it was quite a help.
The next big memory in my life was being fitted for Leg Braces, when I was around 9 years old. My mom took me to a place the doctors suggested, to get fitted for the braces. The made casts of my legs my legs to make a pattern for the ugly things. A few weeks later, we went back to get my braces. I wish I had a picture to show because, they'll be hard to describe. They were made of plastic and metal, and had various straps. They were molded to fit perfectly on my legs, and they went all the way up to my waist. Thank god they were made so my clothes, could fit over them. I must say they did help keep me walking for a few more years. Eventually, all I could do was stand, even with my braces. Being 12 years old I didn't comprehend the significance of this. From this point on in my life I would never walk again, unless a cure was found. I learned that my scooter would now be my permanent mode of transportation.
In the middle of 5th grade, my parents made the decision to put me in a "special class". I was coming home almost everyday exhausted, and crying. The teachers were pushing me too hard, too fast, and giving to much work. I started going to a different school a week before Christmas. I would still be in regular classes, I would just get more time and assistance to do my class work. Physical Therapy would now be worked into my daily schedule. Therapy would give me a rest during the day. My therapist would get me out of my chair, and stretch my legs and arms. Sitting in my scooter all the time, would cause my muscles to contract, or tighten. Stretching out would feel good and help my body stay flexible, and limber. Every Friday, my class would go to an indoor pool, and swim. Swimming was also great therapy for me, because I could walk in the water. When I was 14 I got rid of the scooter, and got my first electric wheelchair. At this point, The scooter didn't give me the support I needed. This was a strange adjustment because, I felt the wheelchair made me look more "handicapped". (God, I hate that word, I prefer gimpy)
In 7th grade, I switched to a JR. High School. I was still in a "special class ", going to regular classes. I stopped going swimming because, my schedule wouldn't permit it. I would still have Physical Therapy, 3 times a week. I really enjoyed Jr. High; the freedom, crowded halls, and girls. I felt funny being in the "special class". I would try to sneak into the room, so know one knew I went there. In the middle of 8th grade, I had surgery on my back. The doctors decided, to put 2 steel rods in my back. They did this to prevent my spine from twisting and bending. I also got a new electric wheelchair, during 8th grade.
3 years later I moved to the High school, into yet another "special class". High School was rather difficult, yet very fun. When my friends, got there license's and started driving, I felt left out. I started realizing that I would never drive at all. Now my friends who were always around, were no where to be found. This new found freedom had sucked my friends away, Like a giant vacuum. I had to accept the fact that I couldn't hop in the car with my friends, and go to the mall. I would be left out of 100's of parties, and other gatherings, for the next 3 years. Eventually, my parents would let some of my responsible friends drive our van. Going out with my friends once in awhile was very cool. On the weekends, I was left at home a lot because, I couldn't be out very late. I had to rely on my parents to get me in bed, so staying out past 11 was not an option.
In 12 grade, I started the process of applying to college. I knew I would like to go away to school and live in a dorm. I also knew I that couldn't pick and choose colleges. I had to go somewhere very accessible to people with disabilities. Unfortunately, there are very few of these schools in the country. I heard of a school in Pennsylvannia, that was one of the top accessible schools in the country. It happened to be the closest to my home in Rochester, NY. I applied to Edinboro University of Pennsylvannia, and received an acceptance letter in November '93.
In August of 94, I went off to Edinboro University, to study Communication Graphics. When my parents left me at college, I realized for the first time I was on my own. I loved the feeling of freedom, and for the first time I felt like a "normal" kid. College life was everything I thought it would be, and much more! People were much more accepting of my disability. Pretty soon I had my own group of friends, which made me feel great! I started off as a serious student but, that didn't last for long. I went to my first party a month or so after being at school. I never drank that much if ever but, I learned to like beer real fast. My first year of college flew bye very fast. Before my second year started, I began using a Bi-Pap Unit. A Bi-Pap Unit, is a device that assists with breathing. I was getting a lot of headaches when I woke up, in the morning. The Bi-Pap helps me get more oxygen, when I'm sleeping. I only use the Bi-Pap Unit when I'm sleeping.
My second year was much more fun, I was no longer considered a Freshman Dweeb. I had more friends, and experienced new things. I was now getting into all the bars even though, I was only 20 years old. I really loved the bars, full of hot chics, loud music, and beer! Before I knew it my second year of college was complete!
When my 3rd year started, I was expecting to have more fun than the previous years. It turned out to be my worst and last year at Edinboro (No I didn't fail out). After a month or so I started feeling ill. I figured I had a little bug or something. Almost every time I would eat something, I'd feel sick. My friends kept telling me I was acting different than usual. I figured it was nothing serious, and I'd feel better soon. Then I started breaking out in cold sweats a lot. I started getting worried but, I was in denial that something was wrong. A week later I had a hard time breathing, when I laid down. That experience, really scared the hell out of me! I called my parents and told them I needed to come home. My dad drove up the next day and took me to my doctor right away. I figured, I would be away from school a few days or so. Little did I know, I would never go back to Edinboro again.
The Next 3 months would be pure hell, the worst time of my life. I was admitted to Strong Memorial Hospital, on the 5th floor Neurological Unit. It didn't take long before I was very sick. The doctors could not figure out what was wrong with me. After many days of tests, they told me I was in Congestive Heart Failure (CHF). CHF meant that my heart was having a hard time pumping, and my body was filling up with fluid. I was having such a hard time breathing, I was using my Bi-Pap unit all the time. I kept getting worse and worse because, all the medications they were trying weren't working. Things started getting very bad, and I thought I was going to die. If there was anything humorous about this, it would be the fact that I told my parents all the bad things I did. I told my mom that I smoked Pot a few times at college. I told my dad about the time my friends and I almost set the house on fire. I guess I figured, "what are they going to do kill me?" Finally, the doctors told me that they had a medication that might help. I started taking the medicine right away, and within a few days I was feeling better. I began to think that there was hope, for the future. Within 2 weeks on was on my way to recovery. The "magic" medicine known as "Digoxin" had helped regulate my heart, and essentially saved my life! It was time to start making arrangements, for me to go home. I never figured, that I would have a very difficult time getting there.
In the beginning of December 96, My parents were ready to bring me home. The doctors told them that I would need a lot of nursing care in order to be safe at home. We figured it wouldn't be difficult to get the care I needed to go home. The hospital social worker called the Public Health Agency in the county I live in, to tell them the amount of care we would need. The doctors said I would need at least 15 hours of care a day. The county refused to give us more than 4 hours a day. There was no way the doctors or my parents wanted me to go home with just 4 hours of care a day. I was sick of being in the hospital, and wanted to leave. The social worker suggested I go to a nursing home until I was well enough to come home, without that much nursing care. My parents assured me that I would eventually come home from the nursing home. I was never worried about not being able to come home. My parents went to visit a local nursing facility, and said it seemed like a good place for me to go. I agreed to go as long as I would eventually come back home.
A few days before Christmas'96, I was transferred to the nursing home. My parents met me there and set up my room, with my computer, and television. I was so happy to be out of the hospital, and into a place that seemed more like home. The first couple days, it was hard to adjust to the new environment. All the workers and nurses were very pleasant, and helpful. After being there a month I was well adjusted, and knew everyone there. Almost everyday I began to feel better and better. Before I knew it I had been there almost 3 months, and was ready to come home with my parents. I told my mom and dad, that I was feeling better and wanted to come home. My mom started working on it right away, with the nursing home social worker. They contacted the Public Health Agency and told them I was much better. I would still need more than 4 hours of home care though. The County Agency said, they would look into it and get back to us. Several weeks went by before we heard anything. When we did hear from the County, they told us they would have to come out and do an evaluation. Some people came out to do an evaluation, they looked over my recent medical records, and talked to my doctors. These 2 people who will remain unknown came to my room and told me that they felt I was too "fragile" to be at home. I felt like screaming at them, "I'm not a fucking vase!" Nothing offended me more than being told I was "fragile", I will never forget that day, ever! I was angry at the whole situation, I wanted to go home at all costs. My mom kept making phone calls trying all the angles to get me home. We kept getting the run around, phone calls were never returned, and we kept getting a bunch of excuses.
By this time I was on my second roommate who was in a irreversible coma. After living with a grumpy old man for 5 months, a person in a coma was a welcome sight! I quickly learned that a person with a head injury induced coma isn't exactly fun to room with. Every half hour the respiratory therapist would come in to suction fluid out of his lungs. Let me tell you the sucking sound alone made me sick, not to mention the green slime that came out. His bed had to be changed at least 3 times a day, due to various problems. Thank god, I didn't have to witness that for long. Within a couple weeks, I had a brand new roommate. This Guy wasn't any better, he could talk, and make noise. He was basically deranged, and extremely strange. Apparently, he was a holocaust survivor (I can't imagine surviving something like that) He had to have his light on at all times because, if they went off he would have flashbacks. Yes, I had to sleep with the light on all night, which pissed me off!. By now I had been in the place almost 7 months.
We Decided that if I wanted to get home we would need a good lawyer. We found a good one, that specialized in cases involving disabilities. Sarah (our lawyer) said we definitely had a case, and told me I would eventually get home. We set up a fair hearing, which meant we would tell our side to a judge, and the County Public Health Agency would tell their's. When we went to the fair hearing, the County decided not to show up. We couldn't have a fair hearing, without both sides in attendance. Sarah said, we should tell our side to the judge anyway. We told our side and Sarah said she would contact the County's lawyers and discuss the issue. Sarah had the County send their side of things to the judge, who would then make the decision. I thought I had a excellent chance of going home to live. A few weeks went by and the judges decision came back, it was in my favor. The County Agency was given a court order to give me 18 hours of home care. I thought I was home free but, that wasn't the case. The County Agency didn't comply at all. Now I was let down again, after getting my hopes up. I Started to feel hopeless, and got very depressed. My lawyer was trying to set up a federal court date. This time if the County Public Health Agency didn't comply, they would be in contempt of court. Weeks and weeks went by, with nothing happening. I was very depressed, and didn't have any hope at all. I felt that if I was going to be trapped in a nursing home, I had nothing to live for. Every morning, I would lay in bed until 11 am and sleep. I was basically forced out of bed everyday. All day I would sit in front of the TV and think about home. Eating was not very important to me, all I cared about was going home. By the time I would leave I would have lost 30 lbs, weighing a mere 100 lbs. The last month in the nursing home was horrible. Finally my lawyer called me and told me the federal judge, gave the County orders to provide me with 24 hours of home care. Then on September 26, 1997 I went home to live, after 9 months in the nursing home. Not only was I going home but, CBS news was there to film the whole event.
I have now been home exactly, a year. I'm back to my normal self and I love life again! Every morning, I wake up with a smile on my face, ready to start the day. A few weeks ago I started taking some classes at a Monroe Community College. Living at home has been better than I imagined. I have more freedom and independence. Having 24 hour home care is a blessing for my parents and I. I feel that anyone who doesn't want to live in a nursing home should not have to. The special that CBS filmed on me returning home will be on sometime soon!
There it is the story of my life, living with Duchenne Muscular Dystrophy. If you made it through the whole story, and have any comments or questions, you can email me at: Frogman2@rochester.rr.com I'd love to hear from you!
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