My Disability, My Story Part Two

Before I continue my life story, I'm gonna give you guys some more information on Muscular Dystrophy. There are many different strands. The strand I have is called Duchenne Muscular Dystrophy (DMD) Average life span is 25-30. There is nothing that can really be done to slow down the process drastically, but things that can make life a little easier. When I was 4 years old, I was put on a medication called Deflazacort. Deflazacort is a steroid specifically designed for DMD. On average without the drug walking stops at 10. With the drug it increases to 14.

Time line of how DMD has effected me.

From 4-9

-Hard to run

-Difficulty getting up off the ground  

-Difficulty climbing stairs

From 10-13

-Needed a walker 

-Raising arms became increasingly more difficult 

-Getting dressed became very difficult 

From  14-20

-Walking became impossible 

-Feeding myself became harder

-Need a straw to drink

-Spine started to curve

21-22

-Can no longer write with a writing utensil

-Can only feed myself finger foods

-Lung function has declined 

22-???

-Lung function will decline more

-Heart problems will arise

Okay let's continue 

Not much happened in grade nine and ten, well except the minor injury here and there. Then a month before I started grade eleven, I hurt my back. I had gotten seven compression fractures in my lower back. For this, I was given a back brace to straighten my back, because I refused surgery. I got  a new power chair with tilt soon after. As well as a hospital bed a few months later , because it was too much pain to lay flat.    

So after that, I could no longer go on long trips. The last overnight trip I went on, was in November that year. I went to Boston. It was an awesome trip, so i'm glad. The city made me feel alive. I wish I could go back. The rest of high-school was fairly pain free, well i'm always in pain so not exactly. What I meant is that the pain was bearable.

I stayed in high-school for an extra year, because I was unsure what to study in post-secondary. That year I took a marketing class and absolutely loved it. So in September of 2011, I started college, at Mohawk College here in Hamilton. I choose to study Marketing. In October that year, I was admitted into hospital. I had gotten really sick and couldn't cough anything up. I came down with pneumonia, and was in hospital a whole week. It was mid-term week as well.  

I came out alive though!   

After that my year was not too bad. December of 2012 is when my arm function went completely downhill and I could no longer take my own notes. Feeding myself became practically impossible. I took this the hardest out of anything else that happened in my life. I have learned to cope with it though. The next thing to effect me will be ten times harder to deal with though. My lungs will shrink smaller making me lose my breath much easier. After that my heart will betray me and I will die shortly after.

That may seem depressing to you, but I have dealt with it and i'm totally okay with it. I won't grow old, that's fine. I won't see a long relationship, that's fine. I won't have kids that's fine. I will enjoy what life I have left! I haven't given up that's for sure! I will fight this disability with every fiber of my being!

Like I said yesterday, i'm not looking for sympathy. I just want to share my story. Maybe it'll inspire some of you! This is the end! I will be back tomorrow with something different! Peace!