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Friday, October 31, 2008


After 25 years, a parade down Broad Street to celebrate a championship by a Philadelphia sports team -- and I was there, along with 2 million of my closest friends!

No way was I going to miss this opportunity, even if I couldn't catch a train due to the sheer volume of riders heading to the parade. I wasn't about to give up. After all, did the Phillies ever give up when they looked to be down for the count this season? I think not.

We got on an empty Schuylkill Expressway and cruised into Center City, where we found parking just a couple of blocks from the parade route. But that was only the beginning of my good fortune. As I made my way through a huge crowd outside City Hall, I came across a city employee, who got me inside the building and found a property manager, who took me to several offices until I found a good vantage point.

I ended up viewing the parade from a second-floor window of the Prothonotary Department, where the employees couldn't have been any nicer.

What a great day to be a sports fan in Philadelphia!

Wednesday, October 29, 2008

We Are the Champions

Since becoming a sports fan 15 years ago, I've been waiting to be able to be play that song after watching one of Philadelphia's four major professional teams win a championship. Tonight, with the Philadelphia Phillies winning the World Series, I finally had that opportunity.

I honestly cannot believe it actually happened -- after all, there had been no championships in Philly since 1983. Like most fans here, I had grown up with the expectation that somehow, some way, we would lose. There were some tense moments in the Fightin' Phils' 4-3 victory over the Tampa Bay Ray in game 5 of the Series, but when it was all over, I felt a sense of satisfaction I had never felt as a sports fan.

Friday, I'll be celebrating with more than 1 million of my closest friends, as the city hosts a parade for its baseball heroes. It should be a wild party!

Monday, October 20, 2008

Center of Attention

No, I didn't get any phone numbers from the Philadelphia 76ers Dancers surrounding me in the picture above, but it sure was nice to have so much female attention even if only for a few seconds.

If their dance squad is any indication, this is going to be a great season for the Sixers!

Speaking of Philadelphia's NBA team, tonight I had the opportunity to meet players and other members of the organization, such as General Manager Ed Stefanski, Assistant Coach Jim Lynam, and rookie Marreese Speights (at right), at a taping of the "Meet the Sixers" program that will soon air locally on Comcast SportsNet.

Sitting in the mostly empty Wachovia (perhaps soon-to-be Wells Fargo) Center, it was great watching the highlight reels, especially of the 1983 championship team, with Dr. J, Moses Malone, and current Sixers Head Coach Maurice Cheeks. Maybe someday soon, we'll see the streets of Philly packed like they were to celebrate the Sixers victory over the Lakers.

Until then, I'll just revel in the glory of my moment with the Sixers Dancers!

Saturday, October 18, 2008

Breathe Easy

I remember some of the misconceptions I had about tracheostomies before I got one six years ago -- that I would be more prone to infection, unable to speak or eat easily (if at all), that the trach would be painful, that it would drastically alter my way of life.

So as I addressed a group of parents whose children have trachs, today at a conference sponsored by the Pediatric Airway Program at the Children's Hospital of Philadelphia (CHOP), I did my best to allay their concerns as much as possible, although every situation is obviously different from mine. I must admit that, despite the fact that I am still a patient at CHOP (pictured above with me is my otolaryngologist, Dr. Karen Zur), I was worried that my experiences might not translate very well to the experiences of parents with infants or young children with trachs. However, it isn't always possible for such parents to know how things like suctioning or changing a trach feel from their children, who cannot communicate on an adult level. No parent wants to subject her child to pain, so hearing from me that say, changing my trach doesn't hurt, is important.

Look, no one would choose to have a trach if it wasn't necessary. It was never something I really wanted and if there were a realistic option, I would have it taken out. However, I doubt that I would be here today had I never gotten a trach. With it, though, I am able to enjoy a pretty decent quality of life. At the end of the day, that's really all that matters.

Tuesday, October 14, 2008

Coming Attraction

Thanks to the tighter turning radius of my (relatively) new wheelchair, I've been able to avoid harrowing episodes boarding Southeastern Pennsylvania Transportation Authority's (SEPTA) regional rail trains like I experienced last summer. Still, it isn't that easy to board the 40-some-year-old trains, which must be entered at either end, requiring me to make a sharp turn to enter the seating area. The doorways are barely wide enough and the thresholds difficult for a wheelchair to climb.

But that's all about to change. Today, I had the opportunity to board a mock-up of one of SEPTA's fleet of 120 new Silverliner V cars (pictured above, courtesy of Steve Ives, contributing writer at, and I was impressed, to say the least. Boarding the side-entry car was a snap. A SEPTA employee had to put down a ramp to bridge the gap between the platform and the car, but this apparently won't be necessary when the new fleet is phased into service late next year. But the doorways were nice and wide. Once inside, there was a dedicated wheelchair seating area, with a fold-away bench seat. I was told that there will also be tie-downs as well.

While SEPTA's current train cars may claim to be wheelchair-accessible, the new cars truly will be. Then, if I run my nurse over while boarding the train, it can be concluded that I am simply a lousy driver!

Monday, October 06, 2008

I'm Back

You may have noticed that I have not posted anything for quite some time. I'd like to assure everyone out there that I am fine. Over the past few weeks, I've had every intention of posting something, but life got in the way, so to speak.

First, there were some scheduling changes with regard to my nursing care. It goes along with the territory when you live this life, but without a stable nursing situation, it can be quite challenging. In the course of training a new nurse, I discovered that using the toilet can be risky proposition, as I was dropped not once but twice while being lowered onto the throne with my Hoyer lift. My tailbone and hip aching, I promptly dropped her -- from my schedule. I am supposed to meet another recruit this week, so we'll see how that goes...

Second, the change of season is wreaking havoc on my body. I haven't adjusted yet to the cooler autumn weather, so I've been extremely cold and tired. This happens to me every year, so I know that I will feel better soon.

Finally, although it isn't easy to get a whole lot done at less than full strength, I have been trying to make some headway with my master's thesis, in the hope that I might actually finish the thing this century!

So that, in a nutshell, is why you haven't heard from me in a while. If my research starts to pick up, my posts may be less frequent, but I will continue to share my life and to offer hope and advice to those dealing with Duchenne's, so please, keep up the comments and e-mails.

Before I conclude this post, I'd like to give a shout out to my beloved Philadelphia Phillies for making it to the National League Championship Series for the first time since 1993, and to my good friend Art, who just relocated to Southern California from Philly to take an exciting position. I wish him the best of luck and thank him for proving that DMD is no match for someone with courage and determination.