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.
9 comments:
Well done. I found your blog via the article. I'm another adult with Dmd, age 31, currently using non-invasive ventilation. I'm also one of the moderators of a Yahoo group created for and by other adults like you. It's called DMD Pioneers...check it out if you haven't already. Here's the url and description:
http://health.groups.yahoo.com/group/dmdpioneers/
DMD Pioneers is an international group for anyone with Duchenne Muscular Dystrophy (DMD) who has beaten the odds. We are in effect Pioneers, in that we have found ways to keep going and to deal with what we've got. Here we can share experiences, give advice or just talk about life in general. We should celebrate the fact that we are not statistics and are DMD Pioneers!
Due to the nature of discussion that goes on in the DMD Pioneers group, membership is limited to those who actually have DMD or parents of children with DMD who are at least 16 years of age. This is not meant to be a support group for parents of newly diagnosed children or as a means to find out about treatment options. This allows for open and candid discussion among members who have "been there, done that" when it comes to the childhood stages of this disease.
***Please be aware that certain topics may be of a somewhat personal and/or mature nature!***
I really enjoyed reading your blog, I also came in via the article. I am a 21 year old girl from Chicago w/ Duchenne (there are some of us, despite what you hear!)I am about to graduate and am going through that fun time of trying to figure out what is next. I imagine I will feel the same resonance with your book that I did here. Good Luck w/ the book and you know, Life...
Elizabeth Heller
yo josh, mr. bigtime are we? philadelphia inquirer, new york time. that is great. and both articles are very good. i hope to see you at the book signing.
Josh-
I just printed the NY Times story and I am going to read it with my classes tomorrow. They need to know about how hard you fight.
Your fame grows....
Josh, I read about you in the NYT. I had a serious injury at work (though my condition is nowhere near as serious as yours) and have had a tough time dealing with it. Your story is really an inspiration to me and it is wonderful that you are so open about sharing it. I will think of you when I am feeling low, and I know it will help. I wish you only the best.
I am saddened to read this article and your blog comments. It seems to me you were soooo negative about MDA and it's researchers not yet having found a cure, that you have forgotten all they HAVE done. MDA is very much about improving quality of life. Have you forgotten the amazing times at Summer Camp. A place designed to help you not be different for a whole week, a place where you get to experience things you wouldn't normally have experienced. I have NEVER heard anything but positive things from MDA campers, and to me that is improving quality of life. Have you forgotten the supports groups, the free clinic visits, the monetary assistance for wheelchair purchased and repairs. I also know (and you do as well because you talked about it in one of your blogs) that there are new treatments that are making young boys be able to walk again. MDA has thousands of voulenteers and staff across the nation working very hard to raise funds to find treatments. It is very sad that they have not found something in time to help you, but that does NOT mean that they aren't helping others every day. The Times article was VERY negative toward MDA and I believe you should be ashamed of supporting it after all MDA has done for you and your family.
I don't feel anyone has been negative towards the MDA (certainly not Josh!), they have done a ton! It's just that the focus is changing from "cure" to "treatment", twenty years is a long time to be hoping for a cure... I know, I remember the day that they announced finding the gene for Duchenne’s. No one thought we'd be in almost the same place twenty years later... The "average life expectancy" hasn't even improved. I'm not faulting the MDA at all. It's just taken a long time… there are many boys who were born after that discovery, who have already lost their battle. It's just a lot of hard work on everyone’s part. I think we are all excited that more is being done, I hope that this excitement brings about more treatments, and greater quality of life, as well as longer life expectancies for those boys who are being diagnosed today...
just want to respond to that comment about the saddened person to read the article, I ddisagree that the article was negative about the mda, but it is true that not enough is being done by them, and also, highlighting this is an opportunity for improvement. How dare you make those with dmd feel bad, they deal with enough already, and the mda is not doiong enough. Leave your negativity behind, you mean spirited, unhelpful idiot.
It makes me "sad" when I see trolling MDA cheerleaders anonymously bashing someone like Josh, who's just trying to do something productive.
Jonathan from DMDPioneers
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