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.
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.
