Please click here to order your copy of Worth the Ride: My Journey with Duchenne Muscular Dystrophy. All proceeds go to Parent Project Muscular Dystrophy (PPMD)

Wednesday, November 28, 2007

Welcome Back

In what has become an annual tradition, I joined several pulmonologists from Children's Hospital of Philadelphia in addressing the second year students at the University of Pennsylvania School of Medicine, where I have seemingly become a regular speaker. In fact, some of today's students remembered me from my spring presentation, when they were in their first year of school. I might just have to change my material next year -- maybe I'll an outrageous foreign accent or something!

As usual, my favorite part of speaking to the students was answering their questions. As the work that I do involves assistive technology, I enjoyed answering the question I was asked about how I use my computer (voice recognition software and an infrared camera mouse). But I thought that the most interesting question I received was when someone asked me when I knew I would attend college and how that decision came about. That was easy. I always planned on going to college. My parents expected me to do so. Where I attended high school, it was practically unheard of not go to college. I saw myself as no different from anyone else. Plus, while I was in a motorized wheelchair, and I missed some time to have spinal fusion surgery, I was relatively healthy.

I would love to be as healthy and energetic as I was back then. Even so, I felt fortunate just to be here, doing what I do best: talk. Whether anything useful actually came out of my mouth, well, I'll let the students be the judge of that!

Sunday, November 25, 2007

Darius Goes... to Your Home

Several months ago, I wrote about "Darius Goes West," an uplifting documentary film (see trailer, at left) that follows the cross-country journey of Darius Weems, a then 15-year-old with Duchenne's, with the assistance of a group of loyal friends. You can ready my previous entry here.

Now, after screenings across the country, the film is coming to DVD, just in time for the holidays. To order a copy, please click here.

We all have a part to play in the fight against Duchenne muscular dystrophy, whether it's Darius with this film or me, with my book about my life with the disease. So, just as I will soon be asking you to purchase my book, I encourage you to purchase a copy of "Darius Goes West." Proceeds from its sales go to Charley's Fund, an organization started by the parents of young boy with DMD that is dedicated solely to funding a cure or treatment for the disease.

Thursday, November 22, 2007

Gobble, Gobble, Gobble!

Happy Thanksgiving, folks! For those in our worldwide audience who are unfamiliar with this holiday, you can read about its origins here, but Thanksgiving is essentially a time to give thanks for all that one has in life. As you can see from the picture above, Thanksgiving is also a time to celebrate with family and friends -- and to eat lots of turkey, stuffing, and mashed potatoes!

My life is hardly perfect (whose is?), but I have plenty to be thankful for this year. My health has remained stable. I have been fortunate enough to find a publisher for my book. I have a wonderful circle of friends, which has grown to include friends across the world, thanks to this blog. I have a loving family and a dedicated group of nurses and attendants to care for me.

And tonight, of course, I was thankful for a delicious Thanksgiving dinner. For more about the food that I ate, click here or here to visit Food Network Musings, where Sue (that's Aunt Sue to me) has posted photos of the dinner she prepared. By the end of the meal, I was also pretty thankful for my ventilator as I had eaten so much that I wouldn't have been able to breathe without it!

From Winheld's World to your world, wherever that may be, Happy Thanksgiving!

Thursday, November 08, 2007


Yo, Adrian!

Sly Stallone I ain't, but like Rocky before me, there I was today at the top of the steps of the Philadelphia Museum of Art, arms raised (someone's arms, anyway) in triumph at the fact that two years after beginning the project of a lifetime, I officially signed an agreement with Little Treasure Books to publish my memoir, Worth the Ride: My Journey with Duchenne Muscular Dystrophy.

It has been a long road, with long hours, moments of self-doubt, and several bouts of writer's block, but with a tentative publication date of February, 2008, we're nearly there.

There are so many people who deserve credit for making this moment possible that I could practically write another book. To my friends, family, nurses, doctors, advisers, and to Winheld's World readers near and far, thank you for your support. I could not have done this without you. And to everyone out there who has ever been touched by DMD, our experiences may not be exactly the same, but this is your book, too. Together, we will create awareness of this disease, so that someday soon, a cure will be found and no family will ever have face it again.

Please continue to visit Winheld's World for all the latest updates...

Proceeds from book sales will go to Parent Project Muscular Dystrophy, which works "to improve the treatment, quality of life and long-term outlook for all individuals affected by Duchenne muscular dystrophy (DMD) through research, advocacy, education and compassion."