30 Days of Night

I have my new manual wheelchair now. My independence hasn't really changed, still doing the things I enjoy. Friday night, I went to the movies to surprise my buddy Ken for his birthday. He didn't expect me showing up at all. This was all orchestrated over the past week between his wife Janice, my Mom and myself. Janice dragged him to the show and wouldn't let him watch 30 Days of Night. Mom and I showed up and when he saw us he still didn't know what was up.

He goes "What movie you going to see?"
I respond, "30 Days of Night."
Then he says "I was going to see that with you, Bastard!"
So I said "Why do you think I'm here."

Then it finally clicked for him. Janice and Mom went to bingo and Ken and I got to see the movie we wanted to see. By the way, 30 Days of Night was an awesome vampire movie, best I have seen in years. Very hardcore! Afterward we all met up at Kelsey's for drinks. I was feeling brave so I ordered an extra spicy Caesar and some hot wings. That sure warmed me up fast.

It was a excellent night.

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I have Duchene muscular dystrophy or DMD. Just for reference, you may have seen or heard of the Jerry Lewis labor day telethon, well DMD is one of the 40 known neuro-muscular disorders they raise money for. Unfortunately, although it's an awesome program, most of the money raised for the Muscular Dystrophy Association (MDA) is used on research and afflicted kids. Don't get me wrong, MDA is a great organization, however, they are just more focused on children and don't do all that much for adult sufferers.

Anyway, DMD is a disorder that generally affects males. It's very uncommon in females. It's a genetic disorder that screws up the body's manufacture of the protein dystrophin. It's characterized by severe muscle wasting that can't be stopped. The only thing that can be done is to slow down it's progression. It is eventually fatal.

Symptoms begin around 5 or 6 years old, which is true in my case, I was 6. Usually, the elementary school gym teacher notices the early weakened activity that DMD sufferers portray. We just can't quite keep up with the other children, we fall down a lot, and are slow to get up. Gym class helps discover DMD because it's easy to make comparisons to 'normal' children. DMD starts its attack on the legs, making stairs and running difficult tasks. This makes leg braces become necessary. It then progresses to the hips which makes it difficult to walk and stand up. Falling becomes a major issue. For me it was 11 years old, which is the average age. This is when we are often put in manual wheelchairs in order to get around easier and minimize falls. Next, the back, shoulders, and arms start to go. Around 14 or 15, a power wheelchair becomes necessary and walking becomes impossible. This is when assistance is needed for toileting, bathing, dressing and getting in and out of bed. Many victims around this time develop severe scoliosis and need surgery to insert metal rods along their spines for straightening. I got my first power wheelchair at 15 and fortunately I never needed the back surgery.

During the late teens/early 20s people with DMD used to die. Usually death came from weakness of the heart or the lungs and diaphragm, which are all muscles. Pneumonia would often cause lung failure. Nowadays with proper care, therapy, and technology many survive into their 50s & 60s. I'm going to be 31. The worst part about that is now I have to use a mechanical ventilator to assist my breathing. But like everything else in life, we must rise to the challenge.