Defying the Odds

Defying the Odds

I attended the 30th birthday celebration of a good friend with Duchenne's today. As recently as 10 years ago, few people with the disease reached 30. While there remains no treatment, advances in medical technology such as spinal fusion surgery, portable ventilators, effective cardiac medications and tiny pacemakers have made it possible for people with Duchenne's to have longer, healthier, and more productive lives.

At 28, I feel fortunate to be here. No two people are affected the same by Duchenne's, to be sure. Yet in celebrating with my friend, I couldn't help but feel more hopeful for my own prospects.

Now, if only I felt as good about the prospects of my beloved Phillies!

The (Virtual) Check is in the Mail

The (Virtual) Check is in the Mail

Several years ago, I wrote a column in a local newspaper praising online shopping as a convenient alternative for people with physical disabilities. Last week, I became a new fan of another internet innovation -- paying bills online. A few minutes after registering on my bank's website, I paid my very first bill online (to the telephone company, in case anyone is curious).

Paying bills online is convenient in general, but especially for someone like me. Unable to physically sign a check, I have a joint account with a relative, so that someone else can sign my checks. Trusting that person isn't an issue, but at 28, it's about time that I take full responsibility for my own money. By paying my bills online (thanks to my computer's accessibility features) , I can do just that.

Just another way the internet has made my life more accessible.

A New Attendant in Town

A New Attendant in Town

I recently hired a new attendant -- to get me out of bed in the morning, brush my teeth, shave my face, and get me set up for the day. It is usually hard to find someone who is reliable, pleasant, motivated, and not too heavy-handed (I could tell you some stories, but you'll have to buy my book!), but I seem to have lucked out this time.

That doesn't mean that training a new attendant -- even a good one -- is a walk in the park. Trust me when I say it's not very easy to direct someone where to move a toothbrush in your mouth with a mouthful of toothpaste. Or that it is scary teaching someone how to operate the Hoyer lift that moves me from my bed to my wheelchair because I could be crushed, dropped or whacked with a metal bar. Or that I get nervous the first few times someone moves my legs to attach the legrests to my wheelchair, as my knees cannot be extended more than 90 degrees without hurting them.

Mistakes can always happen, but if I find an attendant who is willing to listen and really seems to care, I'll take my chances. So far, so good...

Feeling Invincble

Feeling Invincble

In the midst of learning how to use Blogger, I forgot to write that on Friday, I saw "Invincible", the story of former Philadelphia Eagle Vince Papale (played by Mark Wahlberg), a 30-year-old teacher and bartender who made the team when coach Dick Vermeil held an open tryout.

With the NFL season looming, I was so inspired by the film that I wanted to get out of my wheelchair and tackle someone! Actually, it made me want to hurry up and finish writing my book. I really identified with Papale's drive to make something of his life. In a way, I suppose that's why I'm writing a book. Having muscular dystrophy doesn't make it easy, but it doesn't mean I can't do something positive with my life. I truly believe my book has the potential to help people dealing with medical challenges like mine.

Is It Safe?

Is It Safe?

I spent yesterday morning at the dentist -- no cavities to report! When you have a disability like mine, finding a dentist can be a challenge. Many offices are not wheelchair accessible. Once inside, many dentists won't work on patients unless they transfer out of their wheelchairs. I cannot sit in a chair other than my wheelchair, which is designed to support me. Fortunately, my childhood dentist, whose practice is normally limited to children, still sees me. I position my wheelchair near the dental equipment and use its tilt mode to make it possible for the dentist to reach me.

(By the way, if "Is it safe?" doesn't mean anything to you, get yourself to the video store and rent "Marathon Man", starring Dustin Hoffman and Laurence Olivier. Well, maybe wait until after your next dental visit!)

The Maiden Voyage

The Maiden Voyage

Welcome to Winheld's World!

I never saw myself writing a blog (blogging seemed like reality TV, which I despise), but here I am. Someone suggested a blog would be a good forum to talk about the book I'm writing (see my profile) and that's how the idea was hatched.

Similar to my book, this blog serves a dual purpose: helping people/families going through diseases like Duchenne's (again, see my profile) and educating the medical community and other professionals who interact with us on a daily basis.

I hope you will find Winheld's World informative, insightful, and perhaps even humorous at times. So welcome aboard! And please check back often...