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)

Tuesday, April 29, 2008

Come, and Bring a Friend


Hear me read excerpts from my autobiography, Worth the Ride: My Journey with Duchenne Muscular Dystrophy. I'll take questions and sign books.***

Thursday, May 1, 2008
12 p.m. - 1 p.m. (I will likely be there longer)
University of Pennsylvania Bookstore
3601 Walnut St. - University Sq.
Philadelphia, PA 19104
(215) 898-7595

Hope to see you there...

***All proceeds from book sales are being donated to Parent Project Muscular Dystrophy, a not for profit organization founded in 1994 by parents of children with Duchenne and Becker muscular dystrophy. This organization is dedicated to helping improve the treatment, quality of life, and outlook for the individuals affected by this disease.

Saturday, April 26, 2008

Stanley Cup, Baby!

Well, not quite -- there's still a long way to go, but it's hard to hide my excitement over the Philadelphia Flyers' current playoff run, especially after tonight's thrilling 4-2 victory over the Montréal Canadiens.

Instead of watching the game at home, I decided to catch all of the action at a local sports restaurant, accompanied by my nurse and by my sister, Amy, and her boyfriend, Craig. As you can see from the picture above, I wasn't crazy enough to put an orange cardboard helmet on my head, unlike my companions.

We were able to get a table because there was only one section that was wheelchair accessible. The table we got happened to be almost directly in front of the TV! (Hey, who says that being in a wheelchair doesn't come with a few perks?)

It was a lot of fun cheering on the Orange and Black with my fellow Philly faithful. It was certainly more fun than hearing my own voice when I cheer when the Flyers score. Plus, I got to see a few things I don't usually see -- like the little girl at the next table, who probably wasn't more than six years old, grabbing her daddy's beer bottle, taking a swig, and seemingly enjoying it! "Startin' her young!" Her old man said to me when he saw me laughing.

After my dining companions departed, I remained to watch the final period of the game, though I had to move into an indoor tent area, where I parked myself in front of the bar. Sure, the noise was deafening and other patrons sometimes blocked my view of the TV, but all that mattered to me at that point was whether my team would win. When the Flyers scored their final goal, the place erupted with joy. That made it all worth it.

If I go there to watch another game, however, I might not wear my #88 Eric Lindros jersey, as I took quite a bit of good-natured ribbing from a few patrons. Hey, can I help it that the guy is persona non grata in Philly? It's a nice jersey and I'm not getting rid of it any time soon!

Tuesday, April 22, 2008

Back for More

I was such a hit last April when I addressed two classes of first-year medical students as part of their Doctoring course at the University of Pennsylvania that I was invited back this year.

As was the case last year, the topic of discussion was my experiences and feelings as a person with a disability, particularly when interacting with the medical world. My favorite question was what people do wrong when meeting people in wheelchairs. In my opinion, people get carried away worrying what to say or how to act. If you mean well, I'll give you the benefit of the doubt.

But I implored the students, "Unless you have a death wish, never grab someone's hand when it is resting on the controller of a motorized wheelchair!"

It was also great fielding questions about my book, now that I am a published author. I guess I'll have to come up with something even better for next year.,.

Thursday, April 17, 2008

And Here's the Pitch...

How do you like my nurse's picture of Phillies' pitcher Brett Myers after delivering a pitch to home plate?

As I have said before, the baseball season doesn't officially get underway until I make my first appearance at a Phillies game. With temperatures in the low 80s and a clear blue sky here in Philadelphia today, I couldn't think of a better day for baseball. It turned out to be an even better day, as the Fightin' Phils belted four homeruns and crushed the visiting Houston Astros, 10-2.

The first game I attend each year is always a bit emotional for me, as I never know if it will be the last season for me. Six years ago, when I began seeing my current cardiologist, I told him that I was hopeful to be able to attend a game at the Phillies' new ballpark, then under construction. Well, not only was I able to be there in 2004, the first season that they played at Citizens Bank Park, I have been around for four more seasons, now that this one has begun. I'm sure glad that I got to see last season, when the Phillies reached the playoffs for the first time since 1993.

Since it has been open, I have been pleased with the accessibility at Citizens Bank Park and have found the staff extremely helpful. Having been given tickets to today's game as a gift in a non-accessible seating area, I needed to trade them in for accessible seating (well, parking in my case). All I had to do was go to the guest services desk and with no problem at all, they moved me to some great accessible seats behind home plate but up a couple of levels.

I had a nice time today. It's great to be 1-0 in games I have attended so far this year. I'm going to enjoy it while it lasts, because I have become the kiss of death for my local teams in recent years!

Thursday, April 10, 2008


When I started this blog, I had no idea how many new friends I would make in far away places. I certainly never imagined I'd ever meet any of them in person. Today, I had the opportunity to meet one such friend. Here I am with Kathie in the picture above. A loyal Winheld's World reader who hails from Ohio, she was in Philadelphia today with her family to visit all of the historic sites in town.

There was no way that I was going to miss the opportunity to meet one of my biggest fans. We decided to meet for cheesesteaks at Campo's in Olde City. (For those keeping track, that makes stop number two on my cheesesteak expedition.) Then we headed for the historic area, with a quick stop for that other Philly delicacy, the soft pretzel!

It seems that many of my readers have a personal connection to Duchenne muscular dystrophy. A number of years ago, Kathie lost a dear friend to DMD. But like so many others who have lost someone to this disease, Kathie has chosen to stay involved. In her case, she leads an MDA support group for adults with muscular dystrophy.

I can't think of a more qualified person to lead such a group. And if anyone reading this blog is looking for a qualified tour guide for your next visit to Philadelphia, give me a shout -- I'd be more than happy to eat an authentic Philly cheesesteak with you!

Saturday, April 05, 2008

On Broadway

After nursing a balky back and leg for the past couple of weeks, it was time for a laugh. So it was a good thing I had tickets today to see the Broadway production of Mel Brooks' Young Frankenstein along with my parents and sister, Amy.

Although nothing can top the 1974 cinematic version starring Gene Wilder, Terri Garr, Peter Boyle, and others, today's show was thoroughly entertaining, with plenty of laughs. As in film, the scene where the monster performs a tap routine to "Puttin' on the Ritz" was priceless.

Accessibility at the Hilton Theatre was excellent -- from the elevator to the seating Parking for my full-size conversion van didn't come cheap, but at least we were able to convince the initially resistant parking lot operator to let us park in his lot.

Getting in and out of New York City left a lot to be desired, however. Traffic on the New Jersey Turnpike near the exit from hell (that would be 7A) was terrible and the physical condition of the turnpike itself was dreadful, particularly immediately outside New York, hardly good for my aching body. As a student and lover of cities, I wonder why the federal government couldn't kick in a few extra dollars to improve the roadways around the financial capital of not just the nation, but the world
Apparently, that only happensafter they collapse and people end up drowning in the river.

That's not funny. "Young Frankenstein," on the other hand, was. I would say that it was "worth the ride," but that would be a cheap marketing ploy, considering it's the title of my book. Suffice to say, I'm glad I made the trip -- pain-free, I might add.

Tuesday, April 01, 2008

Signing Day

After a few unexpected printing delays, my books have finally arrived!*** My task for today was to personalize and autograph them before they were mailed out. Assisting me were Little Treasure Books marketing director, Paula Lizzi, and her son, Joe. As I can no longer physically write, I had a stamp made with my old signature. But this was no "rubber-stamping" operation. I agonized over many of the messages I wrote (well, not physically) above my signature. It made me wonder how I had ever managed to write a 352 page book in the first place. I must have agonized a lot faster!

***NOTE: Those of you who have ordered books, they should be in your mailboxes within the next 3-5 days. If you haven't already ordered a copy, please click here to do so now. Remember, all proceeds from book sales go to Parent Project Muscular Dystrophy. Thanks for your support!