Wedding Bells

Wedding Bells

When my friend Rob, whom I have known since I was three years old, told me he was engaged a year ago, he made me promise I would be there for the wedding. Although it meant a 2 1/2 ride each way to and from Annapolis, Maryland (picture below), I made good on that promise tonight.

It was well worth the trip. I'm not much of a wedding person (I am a guy, after all) but it was pretty cool to see my oldest friend get married. I don't think I have ever seen him so happy. And who wouldn't be with a wife as sweet as Trish? I've only met her a few times, but I already consider her a friend, especially after tonight. The way I figure, if the wife of friend wipes food from your face so you don't look foolish in a photo (the one above), then she is your friend too!

The happy couple are now headed to Greece, where they will hopefully get a chance to relax after all of the wedding excitement.

Congratulations, Rob and Trish!

Sky's the Limit

Sky's the Limit

People with Duchenne's are living longer and doing amazing things. My friend Art is a perfect example. Art just received his PhD in astrophysics. Quite an accomplishment for anyone, let alone someone with DMD and a visual impairment. Incredibly disciplined, nothing would deter him. After getting his trach he went right back to his studies, even living on his own.

Though I've known Art for probably 20 years -- we went to camp and college together -- it wasn't until we both got trachs that we became close friends. While it was certainly nice to be able to trade medical war stories, we found that we had a lot in common. Since then, we have gone to baseball games, orchestra concerts, "walks" in the park, restaurants, and we have talked on the phone regularly.

Things are going to change, though, as Art will be moving to California for work. It will be a challenge for him, but if there's anyone who can do it, Art would be the one. I wish him the best of luck...

Back in Town

Back in Town

No rest for the weary! Fresh off my Canadian adventure, I was at Children's Hospital of Philadelphia today, addressing pulmonary nurses at a continuing education session, just as I did back in October. What can I say? I'm just a popular guy!

After my talk, I had a chance to visit the hospital floor where the nurses to whom I spoke work. It was close to the one on which I stayed in the days immediately prior to my tracheotomy in 2002. As far as hospital floors go, it was nice, but I'm hoping I never have to stay there! When a group of doctors on rounds walked by me, I said to the leader of the group, "I'm not staying!"

No, after all of the excitement of my trip over the weekend, I'm not planning on staying anywhere other than home for a while...

Oh Canada! Part 3

Oh Canada! Part 3

It was a good thing that I arrived a few minutes early for my talk today at the American Thoracic Society conference because as I was sitting there outside of the room with my parents, one of the doctors suddenly burst through the doors and told me, "You're on!" Apparently, he was having some technical issues with his presentation, so the stage was now mine.

As I drove up the aisle toward the front of the room, all eyes were on me. I hoped I was driving straight, as I am still learning how to drive this new chair of mine! At the podium was my pulmonologist, who was introducing me. As I got closer to the front of the room, I saw my neurologist sitting in the audience. And when I got to the front of the room, I saw my former pulmonologist, who had saved my life by ordering my trach almost six years ago. I had not seen him in a few years, as he had moved to another city.

Then it was showtime. As my doctor held the microphone for me, I took the audience through a PowerPoint presentation containing pictures of me at various points in my life. Time was limited, so I had to be to the point, which actually helped me get into a rhythm. At the end of my presentation, I wanted to make a few medical points. After all, this particular course was about respiratory considerations in neuromuscular disorders (and I certainly have one). This was my opportunity to deliver a message to the doctors, respiratory therapists, and others in the audience.

I told them that it is important to never forget that patients are unique. Before I got my trach, I was under the assumption that at some point, in order to keep living, everyone with DMD got a trach. I have now learned that this is far from the case. There are men with DMD much older than I am who use non-invasive ventilation and have for years. On the other hand, there are doctors who will tell you that no one with DMD should have a trach. This is the wrong approach, in my opinion.

I also got into some of the social issues that may dictate treatment plans. When I got my trach, one of the benefits was that I qualified for nursing care for 16 hours a day. At that point, I was pretty much unable to physically do anything for myself. If I had my trach removed now, I would only qualify for attendant care. There's nothing wrong with that, but I could not get more than a few hours a day.

Then I took some interesting questions from the audience. It was pretty cool that people had to step up to microphone to ask me questions! I brought down the house when a doctor asked me for any advice I would give him about caring for patients like me. "Well, first, buy my book..." I told him.

I was also asked about my ability to speak so well and I told the story about how it only took me 10 minutes to start talking after my trach surgery. There's no shutting me up!

After a quick lunch with my doctors, I decided to do a little more sightseeing, visiting the Hockey Hall of Fame, only a few blocks from my hotel. I was happy to see plenty of Philadelphia Flyers memorabilia. My parents and I posed for a picture with the Stanley Cup. Hey, the Flyers may not get to take a picture with the Cup any time soon, but at least I did!

Later in the evening, my parents, nurse, and I got together with my former pulmonologist and his family. I presented him with a personally autographed copy of my book, which was an emotional moment for me. I had been through so much with this doctor. He had never given up on me even when I was in bad shape, and thanks to him, I was able to write my book.

Then, it was time for dinner. We had, of all things, Tex-Mex! In Canada? Well, it certainly didn't stop me! I figured, I'm going home tomorrow, so I might as well pack it in because I probably won't have time for any big meals tomorrow while we're on the road.

Enjoy the slideshow. Talk to you when I get back to Philly...

Oh Canada! Part 2

Oh Canada! Part 2

Despite forecasts of rain, the sun was peeking through the clouds when I woke up this morning. That made it easier to motivate myself to get out of bed (or rather, to have my nurse get me out of bed) and ready myself for a day of sightseeing. It didn't matter that my back and legs were aching after yesterday's long ride; I wasn't about to sit inside my hotel room.

Although the temperature outside eventually reached the upper 60s, (that's in Fahrenheit, by the way; I did a double-take last night when the meteorologist on TV said that today's high would be 19 -- Canada uses Celsius, of course) it was a bit chilly for me when we left the hotel, and I had trouble controlling my chair because my driving hand was cold.

Our first stop was the 1,800-some ft. CN Tower, Canada's "most recognizable and celebrated icon." Though my mother and my nurse chickened out, there was no stopping my father and me, and we took an elevator over 1,400 ft. to the observation deck. It was a little hairy for us when the elevator began its ascent into the sky, but after a few seconds, it was better. Halfway up, I wondered to myself, "Gee, I wonder if being up this high is a good thing for my ventilator?" Then I thought about people living on ventilators in places at high altitudes such as Denver, and the fact that ventilator technology was originally designed for astronauts. So I figured I'd be fine.

When we got to the top, the last thing I was thinking about was breathing. I was too busy taking in the spectacular views of this city of five million people. From inside, the views were great. But I wanted to get outside to check out that view and feel the wind in my face.

After descending from the heavens, we decided to take a tour of the scene of the crime, a.k.a. Rogers Centre, formerly known as the SkyDome, home to Major League Baseball's Toronto Blue Jays. If you're not from Philadelphia, I call the stadium "the scene of the crime" because it is where the 1993 Phillies' magical season came to a crashing halt following Joe Carter's World Series-ending homerun off of Mitch "Wild Thing" Williams.

Still, the 20-year-old Rogers Centre is something of a wonder, as the first stadium with a fully-retractable roof, so I figured it was worth a visit, and indeed it was. Although I just had to give our tour guide a hard time when we passed by a portrait on the wall of Carter after his infamous shot, I found the tour extremely informative. We got to see the media center and one of the stadium's luxury boxes, but the best part of the tour was when we got to go onto the field. This was only possible because the Blue Jays were out of town (in, of all places, Philadelphia) and because a concert there tonight had been canceled. Pretty cool!

After resting my back and legs for a couple of hours back at the hotel, it was time to do something I have been doing very well lately: eat. For that, we took a drive over to the city's Greektown section, where we had, well, Greek food! After some chicken souvlaki action, I'm so stuffed that tonight, I'm going to have to cut back my tube feeding.

My talk at the ATS conference is tomorrow morning, so I'm going to get some rest. Hope you enjoy today's slideshow...

Oh Canada! Part 1

Oh Canada! Part 1

Nearly a year ago, my pulmonologist asked me if I would be willing to accompany him and give a talk at the 2008 American Thoracic Society (ATS) International Conference that was to be held in Toronto. I said that sounded great, but at that point, it seemed like an eternity until May. But time flies when you're having fun -- or if you are busy getting a book published -- and today, my parents, nurse, and I embarked on our journey into Canada.

As we pulled out of the driveway, I had the typical sinking feeling you get when you're worried about forgetting something. Between my nurse and I, though, I don't think we forgot anything. I've probably had about a thousand nightmares about driving all that way, getting to the border, and finding that we had forgotten our passports. But they were practically the first things in the van -- that and my CDs and CD player and some snacks for the road -- I mean, hey, who cares if you forget your backup ventilator? As long as you have music and snacks, you're good to go! Of course, if you saw what the inside of the van looked like after everything was packed, you would know I was kidding. Pretty much everything from my bedroom was in that van by the time all was said and done.

We hit the road shortly after 8 a.m. The TripTik my mother had ordered from AAA said the trip would take 7 1/2 hours. It lied! Over nine hours and 490 miles later, we pulled up in front of our hotel. Admittedly, we did stop briefly a couple of times, and we did run into some traffic outside of Toronto, but I am still a bit skeptical of AAA's calculations.

Exhausted and stressed out from the ride, however, I was delighted to find out that the hotel accommodations were exactly as I had requested. The hospital bed that I had ordered was perfect and the accessible bathroom was large enough to accommodate my Hoyer lift. Satisfied with the hotel, my parents and I decided to grab a somewhat late dinner at a nearby Italian restaurant. The food was very good and the place reminded us of home because not only was one of the TVs at the bar set to the Flyers playoff game, but the other TV was tuned to the Phillies game!

I'm looking forward to getting out tomorrow and seeing some more of this city. For now, though, I leave you with a slideshow of the view outside my hotel window...

Flyered Up

Flyered Up

One of the great things about sports is their ability to bring people together. When I was a teenager, I didn't have much of a social life, but I could always talk with friends and classmates about all that was going on in the sports world. When there was a major sporting event on TV -- Super Bowl, NCAA Tournament, etc. -- my friends came to my house.

I'm a lot more socially active these days, but watching sports continues to be a social event for me. Tonight, I met some friends at a sports bar to watch the Philadelphia Flyers take on the Pittsburgh Penguins in the NHL's Eastern Conference Finals. Above, I am with (from left) Susan, Marc, and Rob. We had fun, but the game left a lot to be desired -- unless you were a Penguins fan.

Some things never change -- Philly teams still let me down!

Down by the River

Down by the River

As I have said on more than one occasion on this blog, one of my favorite places in Philadelphia is the trail along Kelly Drive (and the Schuylkill River). Well, with the beautiful weather today, I decided to take my first walk (drive) of the season there.

Turns out that I had company today, as preparation was underway for the upcoming Dad Vail Regatta this weekend. That meant workers setting up tents and rowers getting in some last-minute training, as you can see in the picture above.

I didn't spend a whole lot of time out on the trail today, as I'm still not used to being in some much after spending most of the cold-weather months indoors. That, and I was really hungry. So my nurse and I stopped by an Italian restaurant on the way home and chowed down!

"Penn"ing My Name

"Penn"ing My Name

One of the reasons I wrote my autobiography was to help the medical professionals and students who take care of those of us with DMD better understand what it is like to have this disease. So I was extremely excited about my book signing today at the University of Pennsylvania bookstore, located near Children's Hospital of Philadelphia, and the Hospital of the University of Pennsylvania.

With many familiar faces in the audience -- doctors, nurses, physical therapists, social workers, medical students -- I read excerpts from my book. Afterward, I signed books (with assistance, of course). It was an extremely successful event -- one person even bought 10 books!