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Thursday, February 28, 2008

Down Periscope

Kind of looks like another planet, doesn't it? Actually, it's a view of the inside of my trachea, taken during my tracheobronchoscopy today at the otolaryngologist, or ear nose and throat specialist (ENT). To do this, the doctor inserts a flexible laryngoscope through my trach (see picture below). It's thin, like a suction catheter, except that it has a tiny camera at the end.

The purpose is to check the bottom of the trachea for any abnormalities. By the way, the two holes that you see in the first picture are where the trachea attaches to my left and right lungs. It doesn't hurt, though it makes me cough a bit. It is a bit more irritating when the doctor slightly pulls out the trach to see that immediate area.

The doctor was pleased with what she saw, and complimented me on my healthy, pink airway. Always love receiving compliments on the look of the inside of my body! Well, at least the inside of that part of my body. After all, there's a reason this entry is titled "Down Periscope" instead of "Up Periscope!"

Monday, February 25, 2008

My Vacation

No, I'm not writing to you from a warm sunny beach. Actually, I haven't even left my house. But to quote after McCauley Culkin from his much cuter "Home Alone" days, I made my family disappear! And for me, this qualifies as a vacation.

I certainly love my parents, but I'm just about 30 years old and the thought of still living with them is, well, old. I have yet to abandon the thought of moving out, as difficult as it may be, but in the meantime, any opportunity to be independent for even a short period of time is a cause for celebration.

Sure, you may say that having to handle the day-to-day responsibilities of living alone (even though I am technically never alone because my nurses must still be around) can be a bit of a hassle at times, but I find it incredibly liberating. And in any case, who ever said that life was supposed to be easy? The point is that I should be entitled to the same life that everyone else has, both the good and bad.

Unfortunately, because insurance only covers 16 hours a day of nursing care, moving out presents a challenging proposition. The only reason I am able to have complete coverage while my parents are away is that my parents are able to pay out of pocket for the extra hours I require. It's as if they are paying for two vacations at the same time.

Then again, it really is two vacations -- theirs and mine. And let me tell you, I'm going to enjoy every last second of mine, even if the scenery outside isn't the least bit tropical like theirs!

Saturday, February 23, 2008

Thanks for the Memories

It's awfully hard to believe that I graduated from Temple University nearly 8 years ago! But even though my undergraduate days have been over for so long, I remember them like they were just yesterday. I remember how hard I worked, how much fun I had, and how independent I was. It was, without a doubt, the greatest time in my life.

So it's always nice to return to the scene of the crime, so to speak. Today I attended an alumni brunch at Temple's School Communications and Theater, where I majored in journalism. It was an opportunity to catch up with a few familiar faces and meet some new ones, as well as to stuff my face with some good food. I did manage to stop eating long enough to pose for the camera with Hooter, the Temple Owls mascot.

As I write this entry, I'm chuckling at the memory of attending a basketball game in which Hooter was issued a technical foul for mistakenly entering the court because he/her/it thought that there was a timeout on the floor. Former head coach John Chaney was furious at the call and he ended up with a technical foul as well. Then the team lost the game, which made me livid!

While I can never re-create that time in my life, it sure does feel good to once again be a student at Temple, where I hope to complete my master's degree in urban studies by the end of the year, even though I don't physically spend much time on campus.

It's just too bad that the basketball team is not nearly as great as it once was. But maybe things will start to turn around because I'm back! GO OWLS!!!

Wednesday, February 20, 2008

Exciting Times

Some things are truly worth the wait. Today, the New York Times story about DMD research and treatment for which I was interviewed several weeks ago finally ran. The article and video can be found here. I thought it was a great piece that highlighted the fact that without a cure for Duchenne's, doctors are now focusing on managing the disease, "making better use of available therapies to eke out longer lives for their patients." There is no doubt that it is this philosophy that has been responsible for keeping me around.

Naturally, I was most impressed with the video segment that ran with the story because it featured me! Just like the print article about me that ran in the Philadelphia Inquirer on Monday, the story was not overly dramatic, but offered an honest account of my life. Not only did it address the medical issues that I face, but it also focused on some of what I've been able to accomplish in spite of my disease.

Still, I would be remiss if I did not raise an objection to the part of the article that described how one boy, whose ability to walk appeared gone forever, regained that ability. While this is a wonderful thing, I think that parents often get too carried away with the fact that their son is going to be a wheelchair. Obviously, no one wants to be in a wheelchair. But the fact of the matter is that you can accomplish much in the wheelchair and I think it's important that parents of children with DMD, one of the audiences targeted by this blog, understand.

Today's world is becoming more and more accessible. And let me tell you, when I started using my wheelchair, it was a tremendous relief. Sure, I was able to walk before that point, but it certainly wasn't easy. I was terribly unsteady on my feet, constantly afraid of falling.

My point here is that, yes, we need to cure all aspects of this disease. But let's not forget that being unable to walk will not kill you, but the pulmonary, cardiac, and nutritional aspects of the disease will.

Perhaps with stories like the one that appeared in the New York Times today, hopefully one day soon, we won't have to talk about any such aspects of DMD because there will be an effective treatment for the disease.

Monday, February 18, 2008

Inquiring Minds

When I responded to Philadelphia Inquirer columnist Daniel Rubin's request on his blog for comments from people with disabilities in the Philadelphia about accessibility, little did I know how that I would soon become the focus of one of Mr. Rubin's columns.

Last week, I received an e-mail from him expressing an interest interviewing me about my life and my soon-to-be released autobiography -- as soon as possible. The interview took place on Friday and today the story, fittingly titled "Aspirations Like Any Other" appeared in the paper.

Truth be told, I have always been an admirer of Mr. Rubin's work. His columns are always very thoughtful and heartfelt. His story about me did not disappoint. It was not one of those sappy, melodramatic, "Look at the poor boy in the wheelchair; he's going to die" pieces that, let's face it, we see all too often. No, this was anything but. It painted an accurate picture of my life, which has been challenging at times, but which has also been productive and enjoyable.

The story was poignant, making reference to my desire for independence and love, but humorous in detailing my recent cheesesteak expedition following my recent cardiology appointment.

Word has it that I will soon appear in another well-known newspaper. Seems I've become quite the media darling!

Thursday, February 14, 2008

Heartening News

I can't say I'm a big fan of the holiday, but it turned out to be a pretty sweet Valentine's Day after all. Today, I had my annual echocardiogram at the cardiologist, which I always dread because it looks at the functioning of my heart, typically an issue in guys with DMD. But the news was good, folks. There was noticeable change since last year!

Not only that, but the very lovely Michelle, who performed the test, was able to find a perfect view of my heart on the first try, so my chest wasn't even that sore afterward from being pushed on with the probe of the ultrasound machine. You might say she saw into my heart -- hey, it is Valentine's Day, right?

So after leaving the doctor's office, I did what every good cardiac patient does to celebrate news like this: I ate a greasy, artery-clogging, but delicious Philly cheesesteak sandwich! My doctor wasn't especially thrilled when I told him where I was headed after seeing him. But I was on a mission -- in four months, I will be hosting friends from England (you know who you are). I want to take them to the best cheesesteak establishment in the city, so I've begun an expedition to find that place. Today marked the first stop: Dalessandro's, in the city's Roxborough section. Let's just say their sandwich warmed my heart, which was fitting on this day!