Living with Muscular Dystrophy

There are many people who live their lives without a disability or with limitations on what they can do. They can wake up in the morning, dress themselves, cook their breakfast, drive to work or school, and do all their other daily activities. They do not need to make any adjustments to their lives or need help doing any of their daily activities. They may take it for granted having the ability to do their daily activities themselves. There are many people who are unaware of or may want to know what it is like for people who have a disability. As someone who lives with a disability, I can provide a perspective for people who do not live with a disability.

I have muscular dystrophy, which is a disease that causes progressive weakness and loss of muscle mass. It is a disease that affects people’s ability to use their muscles properly, which can affect their daily lives. There are nine major forms of the disease that each differ from one another. Each affects different muscles and can have different severity. The form that I have is Duchenne muscular dystrophy, which is one of the most severe forms. It affects lower body muscles first and then the upper body muscles later. I was born with it, but I was able to walk fully until I was nine years old. I was able do most activities on my own. Then when I was nine years old, my muscles began to weak more where I needed a wheelchair part of the time. By the time I was eleven I needed a wheelchair full time due to having limited leg movement. This made it more difficult to get around because I needed someone to push me around until I got a power wheelchair. With the power wheelchair I was able get around myself, but I would need transportation when I needed to go somewhere. This meant I needed a van with a ramp to get around and a bus with a lift to get to school.

When I was 16 years old I lost my ability to lift my arms up, which made it more difficult to some activities such as feeding myself or brushing my teeth. I am currently able to move my arms and hands enough to have access to a phone or to control a mouse for a computer. I require assistance for most daily activities including eating, using the bathroom, showering, etc. Even though I need assistance with many aspects of my life, there are still many ways I am independent. When I turned 18, I began to receive services from the state I live in, which made my life easier. I began receiving home health services, which allows me to have a home health care provider to assist me with my daily activities.

I also received services that aided me with my schooling, which made it possible for me to go to college and receive my Bachelor’s degree. The disease has affected my respiratory muscles in recent years, which affects my ability to cough properly. This affects my breathing and my ability to fight infections because I have a hard time coughing up congestion. I now require equipment to help my respritory system, which are provided by an organization called MDA and is paid for by my father’s health insurance. One machine is called a nebulizer, which loosen up the congestion I may have. I have a machine that helps me cough and one that helps me breath at night, which both help reduce the congestion I have.

This disease also affects the family of the person who has muscular dystrophy, which requires the family to make many sacrifices. My parents have had to take care of me for my entire life and they have been there whenever I have needed them. To give an example, the schools I attended growing up were not fully accessible and my mom would call to make sure they accommodated me. They must care for me when I do not have assistance and they sometimes must leave work when I need them. There are times when my disease affects them financially, but they make that sacrifice because they care about me. I have an older sister who has helped as much as she can, even though she has her own family. There are many more family members that have helped me through my life such as my Grandparents, Aunts, Uncles, and Cousins.

The common misconception people can make is that the challenges I face in my life hold me back, but that is not true. I am still able to have a life even though there are difficulties in my life. I am still able make friends, go out of the house, and I even received a degree. It is true that my life has been difficult, but I still have a life worth living. My quality of life has been made possible by the countless people in my life who have helped and supported me. Even though what I described may make my life sound more difficult, I have been lucky to have the support of many people and access to many services. I know there are those with Duchenne muscular dystrophy that have a more severe case than me, which has made me thankful. The point of this article was to inform people of how muscular dystrophy can affect people’s lives and to raise awareness for the disease. People with muscular dystrophy and other disabilities can still have a great life. It is important for people to know their life is not over if they ever become disabled. It may be more difficult, but that just makes it that much more rewarding to fight and enjoy life.