British Invasion, Part 2: Shop (and Eat) 'Til We Drop

British Invasion, Part 2: Shop (and Eat) 'Til We Drop

It all began one day last March with an incredibly moving comment left on my blog by a young woman in England named Emma grieving the loss of her fiance to DMD. E-mails, instant messages, and webcam conversations ensued, and we quickly became the best of friends. Soon after, Emma met Gary and I became friends with him as well. Not long after, Emma and Gary began making plans to visit me here in Philadelphia. This is part 2 in a series chronicling their visit...



When I got up this morning, Emma and Gary had already been up for five hours! So they were more than ready for our first expedition -- to the King of Prussia Mall. To give you an idea of how much I love shopping malls, it took visitors from 4,000 miles away to get me to go to the largest mall on the east coast.

As I was a King of Prussia mall virgin, we met up with my friend Kimi, the "queen" of King of Prussia, who knows everything there is to know about that mall. We sent Kimi, Emma and Kimi's nurse on their merry way, and Gary, my nurse and I went shopping for manly stuff -- electronics, sporting goods stores, etc.

We all reconvened a few hours later at The Cheesecake Factory. This was also first visit for me, and I'm afraid it might not be the last! At least I won't have to cross an ocean to get there. Emma, a self-professed cheesecake lover, on the other hand, will! Let's just say that we all ate well. My English mates couldn't believe the portion size of our meals. The only negative part of the day was that the unfinished slice of chocolate cheesecake that I took with me melted on the ride. Thank you, Philadelphia in the summertime!

British Invasion, Part 1: The Big Day

British Invasion, Part 1: The Big Day

It all began one day last March with an incredibly moving comment left on my blog by a young woman in England named Emma grieving the loss of her fiance to DMD. E-mails, instant messages, and webcam conversations ensued, and we quickly became the best of friends. Soon after, Emma met Gary and I became friends with him as well. Not long after, Emma and Gary began making plans to visit me here in Philadelphia. This is part 1 in a series chronicling their visit...

I woke up this morning, excited that after 10 months of anticipation, I was finally going to the airport to pick up my friends. It was a good thing I got there early because the short-term parking lot closest to the international terminal could not accommodate my van's raised roof. We had to park two terminals down!

As I sat there in the international arrivals area, I started getting nervous. I had known Emma and Gary for many months and talked face-to-face with them via webcam, but would it be awkward when I actually met them in person? When they emerged through the sliding glass doors and Gary waved at me, I felt relief and excitement. My nurse and I went over to greet them and it wasn't awkward at all. We started talking and it was like we had picked up right where we had left off. As we headed for the van, they recounted being detained by customs over a box of strawberries!

We took the long way home to avoid traffic and to show off some of my favorite places in the city, like the boathouses along Kelly Drive. As we drove along, my friends munched on authentic Philly soft pretzels. I even remembered to bring mustard!

"These pretzels are fantastic!" Emma exclaimed. "We don't have anything like them in England." Indeed. Neither does the rest of the United States!

When we got back to my house, my friends were exhausted. It was 5 p.m. in Philadelphia, but 10 p.m. in England, after all. I was amazed that they were able to stay up at all, but they made it until about 8 p.m. I hope they sleep well because we have a busy day ahead of us!

Father's Day Feast

Father's Day Feast

Last year, my father and I began an annual tradition of spending Father's Day together. Instead of throwing our money away at the casinos in Atlantic City, as we did last year, we stayed closer to home and went out to lunch at a restaurant specializing in Russian cuisine. It was only fitting, in that my father has introduced me to all kinds of foods over the years.

We spent the rest of the afternoon at home in front of the TV, watching the Phillies -- something else that my father introduced me to many years ago. Unfortunately, they literally threw the game away, thanks to a fielding error by Tom Gordon and lost to the St. Louis Cardinals, 7-6. Just as Father's Day is an annual tradition, so too is losing in Philadelphia!

Like Old Times

Like Old Times

Not unlike many other people, the beginning of college was an awkward time for me. I wasn't sure what people would think of me. I found out on the first day of my first class (physics) as an undergraduate at Temple University (physics), when a pretty girl came right up to me and introduced herself. Not exactly something that happened to me every day! Her name was Krysta and it turned out that she was a student in the same department as I was. What impressed me most was that she didn't even seem to notice my wheelchair.

I don't remember a whole lot from that physics class, but I do remember all of the conversations I had with Krysta about the Philadelphia Flyers. We stayed friendly after that semester, but soon after graduation, we lost touch.

When I was writing my book, I was able to reconnect with Krysta, who had moved across the country, and interview her. We've stayed in touch since. Today, after nearly eight years, we met in person, and it was just like old times, only without any annoying professors interrupting us because it was time for class to start!

I know I had a wonderful time. I just hope it isn't another eight years before we meet again because I'll be seriously old by then!

In Memorium

In Memorium

My life would not be what it is if not for my family and friends, so it was with great sadness to learn a few weeks ago of the passing of my great-uncle, Francis Winheld. Tonight, I attended a memorial service commemorating his life. Gregarious and full of life, my uncle cared about the important things -- his family and friends, his faith and his community. He also knew how to cook a tasty pot of mussels, a fond childhood memory of mine from summers spent at the Jersey Shore.

Having dealt with various health issues, he gave back by visiting hospital patients going through similar ordeals, including yours truly. I guess you might even say that my uncle and I were cardiac buddies! When I had my defibrillator implanted three years ago, I didn't know anyone else with one -- except for my uncle. Not long after the surgery, he hopped a plane from California and was with me as I celebrated my 27th birthday.

Just a few months ago, he surprised me at my book signing. Above is a picture from that day of my uncle, my aunt, and me. That was the last time I ever saw my uncle. If he had not made the trip I would not have had the opportunity to see him. Amazing how life works.

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!

Come, and Bring a Friend

Come, and Bring a Friend

BOOK SIGNING AND DISCUSSION AT UNIVERSITY OF PENNSYLVANIA

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.

Stanley Cup, Baby!

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!

Back for More

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.,.

And Here's the Pitch...

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!

Face-to-Face

Face-to-Face

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!

On Broadway

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.

Signing Day

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!

The Professor Is In

The Professor Is In

Well, I sure felt like a professor today, as I was a guest speaker in not one, but two classes in Temple University's Therapeutic Recreation department. The subject of my talks was accessibility, which is near and dear to me, of course, as it is the focus of my own master's research on urban parks. I did talk about park access, but I also spoke about access in other aspects of city life -- cultural institutions, sports facilities, hospitals, education, transportation, etc. In addition, I talked about the assistive technology I use on a daily basis.

The students asked a number of interesting questions, but my favorite came from a girl who asked if I go to parties on the weekend.

"No, not typically...Why, do you know of any? I'll give you my number," I said.

My nurse (who was thinking the same thing) nearly hit the floor, shocked at my newly-discovered bravado. It all comes with maturity, my friends. I am 30 years old, after all -- a fact which was surprising to one young female student.

"You don't act like you're 30," she told me.

I'll take that as a compliment! And if you know of any parties, you know where to find me...

Fan Mail

Fan Mail

I typically try to avoid responding to comments left on this blog. The reason is that everyone gets to hear my opinions whenever they visit the blog. The comment area is your area, where you can tell me that you love me and want to marry me (sorry, females only) or that you think I am the dumbest person on the face of the earth (sorry, no members of my family -- I already know that you think that). Unless comments are obscene in some way, they appear on this blog uncensored.

But every now and then, some comments require a response on my part. One of the goals of this blog is, after all, to help people in similar situations to mine. As it turns out, I have received a few such comments over the past few days. I would like to share them with you in this entry in case there's any advice that you, my readers, might be able to offer. Feel free to post a comment below...

NOTE: If you would like a personal response to your comments, please don't forget to include your e-mail address -- or send me an e-mail with your address by clicking on the link under my picture on the top right of this blog. Also, if you write to me seeking advice, I will do my best to provide it, based on my own personal experiences and what I may have heard from others. However, I am not a medical professional nor do I claim to be, so please consult with your doctor on any medical matters that I may discuss on this blog.

---

Original Comment #1:

"I recently got my trach inserted, after 19 years of DMD. It was a bit too early if you ask me, but completely necessary. I've been finding it really hard to talk, because I'm used to talking in normal, long sentences without breaks. Do you have to do this too, or is it just me?"

My Response:

"Welcome to the wonderful world of trachs! Certainly not a club that anyone would choose to belong to, but hopefully you will find in time that it's not as big of a deal as you might have imagined.

It's hard for me to completely answer your question because you did not say if you are using a ventilator. When my ventilator is connected, I can speak better than I had before getting the trach. Off of the ventilator, I can only speak when I have a Passy-Muir valve attached to the end of my trach. Then, it is much harder for me to speak in complete sentences.

I do know, however, that some people take some time to get used to speaking with a trach. They need to work on timing things just right. So, don't give up hope just yet. Make sure you talk to your doctor and he or she may be able to direct you to other medical professionals who deal with speech issues such as yours. Good luck!"

Original Comment #2:

"I have a trach too, and when I'm out and about, people tend to stare at me a lot. Does this happen to you as well? How do you deal with it? I've only had my trach for a few months and am still getting used to it. I'm used to a few stares because I've been in a wheelchair for most of my life, but when I got the trach, more people stared...probably because it's not something you see everyday. My nurse says to ignore it, but she just doesn't understand. I'm only 18, and I feel like one of those really old people who live in nursing homes...do you have these feelings too? I try and put on a brave face, but it isn't hiding what I feel inside!"

My Response:

"To be honest, I don't notice as many stares as I thought I would. I think a part of it is that people may be staring, but I am oblivious to it. When I do notice people staring at me, I start talking more loudly to my nurse or whomever is with me, so the people staring at me will realize that I am a person just like they are.

I think that you are correct when you say that people look at you because they don't typically see people with trachs. Putting on a "brave face" as you say, is probably the best thing you can do in many cases. Then you can go and vent your frustration to people like me, who understand.

And don't forget, you have only had your trach for a short while. The longer you have it, the more confident you will grow and you will come up with your own way of dealing with the reaction of people who encounter you. Best of luck to you!"

Original Comment #3:

"I read your blog all the time. I'm a 14 year old girl with spinal muscular atrophy. I'm in a wheelchair and have a ventilator. When you were in high school, did people stare and make fun of you too? No one treats me as an equal. some girls think that because I have a hearing aid, I'm completely deaf, and they talk about me even when I'm around. I'm pretty good with getting around my school, but people treat me like I'm retarded. They talk really slowly and loudly because i can't say full sentences in one breath. does this happen to you? I'm really confused and lonely, because I don't know anyone in the same situation as me. I'm the only kid in a wheelchair at my school, and I live in a small town, so I don't see many other disabled kids at all. You seem like such a understanding guy, like you've been through so much. can you give me some advice? thanks for being a great inspiriation."

My Response:

"It's nice to have such a loyal reader. Although I did not have a trach or ventilator when I was in high school, it was not necessarily an easy time. While nobody made fun of me, I did feel socially isolated. Like you, I did not know anybody else in my school in the same situation.

I'm sorry to hear that you're having such a difficult time. Have you joined any online groups for people with your disability? I think that could be very helpful to you in light of the fact that you live in a small town and are not able to interact with other girls who are going through similar issues.

How are your grades in school? If you do well in school, you'll be able to show your able-bodied classmates that you are as smart, if not smarter, than they are. Plus, you will hopefully be able to get into college as a result, and you'll have a clean slate and can meet people who will respect you for who you are."

Author! Author!

Author! Author!

When I began writing my autobiography nearly 2 1/2 years ago, it was hard to imagine that the day when I would actually see it in print for the first time. That happened today at my inaugural book signing party, and as you can see in one of the slides below, it was an extremely happy moment for me. Unfortunately, the copy of my book that I received today was the only one in the building! Thanks to Mother Nature, 500 copies of Worth the Ride: My Journey with Duchenne Muscular Dystrophy were left without a ride due to a powerful snowstorm that closed the airport in Louisville, Kentucky, home to UPS's distribution hub.

But the show must go on, as they say, so we celebrated anyway. We had food -- highlighted by a delicious cake in the design of the cover of my book -- and drinks. A few nice speeches were delivered and I even read excerpts from my book. The event was well-attended, with an estimated 300 guests. The best news of the day was the 230 book orders! That was in addition to about 130 online orders, so we are well on the way to selling out the first print run.

So despite our little weather mishap, I was pretty happy by day's end. Sure, it's quite an accomplishment for me personally, but even greater is the potential that this book has to help countless other families dealing with Duchenne's and to create public awareness of the disease.

Party Time!

Party Time!

Every year, I talk about doing something exciting for my birthday and never follow through. This year was going to be different and indeed it was, as I celebrated tonight at a local restaurant with a group of friends, some of whom I have known since I was a young child and some of whom I've only gotten to know recently.

The weather conditions outside may have been awful, but that didn't stop anyone from being there with me. One friend even traveled all the way from New Hampshire for the occasion. And although I insisted on no gifts, four of my friends with whom I graduated high school got together and decided they all wanted to take me to a Phillies game this season, so I am looking forward to that. But I was truly touched by the kindness of all of my friends, who made my 30th birthday celebration a night to remember.

My New Wheels

My New Wheels

Last March, I told you with great excitement about the new wheelchair I had just ordered. Well, believe it or not, a year later, I can finally report that I am now in it! Why the delay, you may be wondering, when I had been told that it would take only an estimated three to four months?

It's quite a long story, so I'll spare the details. Suffice to say that it began with an insurance snafu. My favorite part was when I received a form letter asking why I couldn't use a walker or cane instead of a motorized wheelchair! A call to an insurance company nurse and all was well -- or so I thought.

You see, back when my physical therapist ordered the chair, a TDX 4 (which stands for "Total Driving Experience") by Invacare, he ordered a mini-joystick from a company called ASL. It was that joystick that I have on my old chair, which made driving a pleasure again after so many years of struggling to drive a chair. But as he and I both later learned, the joystick from ASL was incompatible with the electronics on the TDX.

As a result, the medical equipment vendor through which the chair was purchased, ordered an alternative type of joystick. However, I could not safely or reliably maneuver the chair because that joystick was not sensitive enough for me. Obviously, you can't have much of a "driving experience" when you can't drive your chair! However, the folks at ASL were able to come through for us big-time, modifying their mini-joystick to work with the electronics on the TDX (Thanks, James!)

Driving my chair today with the mini-joystick, I was pleased for the first time during this extremely long process. But as with any new wheelchair, it's going to take me some time to get used to it, especially because it is a center-wheel drive chair and all I've ever known is a rear-wheel drive chair. It's amazing how the new chair is able to turn practically on a dime. Maybe now I won't kill myself when I attempt to board a train, like I did this past summer!

For now, though, I'll settle for being able to steer straight (not easy) -- and for enjoying my new chair's recline feature. As a matter of fact, I think I'll do that right now -- I could use a little catnap! Talk to you soon...

Celebrating in Style

Celebrating in Style

What better way to celebrate turning the big 3-0 than with a TV appearance on the local Fox affiliate's morning program, "Good Day Philadelphia," to talk about my book?

Well, that's just what happened, and it was quite a thrill! The only thing that didn't thrill me was that I had to wake up at 6 a.m. to get there in time. I don't think I've seen 6 a.m. for at least a few years, except for waking up, seeing the clock, and going back to sleep! Everything happened so fast that I hardly had a chance to open my eyes -- well, except for the traffic on the Schuylkill Expressway. That didn't move too fast. But I arrived at the studio at exactly 8 a.m. I was whisked inside, where a Fox 29 staffer informed me that I was scheduled to appear live on the air at 8:23 a.m.

That's precisely what happened. You can see my interview with Sheinelle Jones above. Note the birthday cake that was given to me at the end of the interview. As it turned out, I was actually on the air for a full three minutes, which is spectacular by TV standards!

As it was so early, my nurse and I decided to go find some breakfast. Problem was that we couldn't find any place in the area that actually served breakfast and when we did, the establishments we came across in Philadelphia's Olde City neighborhood were inaccessible. So we settled for some fast food and called it a day, er morning.

I spent much of my 30th birthday fielding congratulatory phone calls and answering
e-mails, but mostly just trying to stay awake at the computer. I had a nice, low-key dinner with my family, followed by the cake I had received earlier in the day.

Turning 30 is a milestone for most people, but especially for me. I doubt that anyone would have predicted I'd still be around more than 25 years after being diagnosed with Duchenne's. Still, my feelings are mixed because it's hard to predict the future and there is so much more I want to accomplish.

There will be more celebratory activities this weekend, because how many times do you turn 30, after all? But for now, I'm going to bed -- it has been a long day!

Need a House?

Need a House?

Things have gone so well on my vacation over the past week that I'm ready to move out. And with me out of the house, I'm figuring that they can sell it because it's too big of a house for two people. So I thought I would give them a hand with putting it out on the market, as you can see from the photo above.

Okay, so I'm kidding! I put the sign up as a practical joke to welcome my parents home tonight. But the truth is that I would like to live independently someday. I'm not sure if I will actually be able to make it happen, but I will never abandon the idea as long as I live -- which might not be very long after my parents see that sign!

Down Periscope

Down Periscope

Kind of looks like another planet, doesn't it? Actually, it's a view of the inside of my trachea, taken during my tracheobronchoscopy today at the otolaryngologist, or ear nose and throat specialist (ENT). To do this, the doctor inserts a flexible laryngoscope through my trach (see picture below). It's thin, like a suction catheter, except that it has a tiny camera at the end.

The purpose is to check the bottom of the trachea for any abnormalities. By the way, the two holes that you see in the first picture are where the trachea attaches to my left and right lungs. It doesn't hurt, though it makes me cough a bit. It is a bit more irritating when the doctor slightly pulls out the trach to see that immediate area.

The doctor was pleased with what she saw, and complimented me on my healthy, pink airway. Always love receiving compliments on the look of the inside of my body! Well, at least the inside of that part of my body. After all, there's a reason this entry is titled "Down Periscope" instead of "Up Periscope!"

My Vacation

My Vacation

No, I'm not writing to you from a warm sunny beach. Actually, I haven't even left my house. But to quote after McCauley Culkin from his much cuter "Home Alone" days, I made my family disappear! And for me, this qualifies as a vacation.

I certainly love my parents, but I'm just about 30 years old and the thought of still living with them is, well, old. I have yet to abandon the thought of moving out, as difficult as it may be, but in the meantime, any opportunity to be independent for even a short period of time is a cause for celebration.

Sure, you may say that having to handle the day-to-day responsibilities of living alone (even though I am technically never alone because my nurses must still be around) can be a bit of a hassle at times, but I find it incredibly liberating. And in any case, who ever said that life was supposed to be easy? The point is that I should be entitled to the same life that everyone else has, both the good and bad.

Unfortunately, because insurance only covers 16 hours a day of nursing care, moving out presents a challenging proposition. The only reason I am able to have complete coverage while my parents are away is that my parents are able to pay out of pocket for the extra hours I require. It's as if they are paying for two vacations at the same time.

Then again, it really is two vacations -- theirs and mine. And let me tell you, I'm going to enjoy every last second of mine, even if the scenery outside isn't the least bit tropical like theirs!

Thanks for the Memories

Thanks for the Memories

It's awfully hard to believe that I graduated from Temple University nearly 8 years ago! But even though my undergraduate days have been over for so long, I remember them like they were just yesterday. I remember how hard I worked, how much fun I had, and how independent I was. It was, without a doubt, the greatest time in my life.

So it's always nice to return to the scene of the crime, so to speak. Today I attended an alumni brunch at Temple's School Communications and Theater, where I majored in journalism. It was an opportunity to catch up with a few familiar faces and meet some new ones, as well as to stuff my face with some good food. I did manage to stop eating long enough to pose for the camera with Hooter, the Temple Owls mascot.

As I write this entry, I'm chuckling at the memory of attending a basketball game in which Hooter was issued a technical foul for mistakenly entering the court because he/her/it thought that there was a timeout on the floor. Former head coach John Chaney was furious at the call and he ended up with a technical foul as well. Then the team lost the game, which made me livid!

While I can never re-create that time in my life, it sure does feel good to once again be a student at Temple, where I hope to complete my master's degree in urban studies by the end of the year, even though I don't physically spend much time on campus.

It's just too bad that the basketball team is not nearly as great as it once was. But maybe things will start to turn around because I'm back! GO OWLS!!!

Exciting Times

Exciting Times

Some things are truly worth the wait. Today, the New York Times story about DMD research and treatment for which I was interviewed several weeks ago finally ran. The article and video can be found here. I thought it was a great piece that highlighted the fact that without a cure for Duchenne's, doctors are now focusing on managing the disease, "making better use of available therapies to eke out longer lives for their patients." There is no doubt that it is this philosophy that has been responsible for keeping me around.

Naturally, I was most impressed with the video segment that ran with the story because it featured me! Just like the print article about me that ran in the Philadelphia Inquirer on Monday, the story was not overly dramatic, but offered an honest account of my life. Not only did it address the medical issues that I face, but it also focused on some of what I've been able to accomplish in spite of my disease.

Still, I would be remiss if I did not raise an objection to the part of the article that described how one boy, whose ability to walk appeared gone forever, regained that ability. While this is a wonderful thing, I think that parents often get too carried away with the fact that their son is going to be a wheelchair. Obviously, no one wants to be in a wheelchair. But the fact of the matter is that you can accomplish much in the wheelchair and I think it's important that parents of children with DMD, one of the audiences targeted by this blog, understand.

Today's world is becoming more and more accessible. And let me tell you, when I started using my wheelchair, it was a tremendous relief. Sure, I was able to walk before that point, but it certainly wasn't easy. I was terribly unsteady on my feet, constantly afraid of falling.

My point here is that, yes, we need to cure all aspects of this disease. But let's not forget that being unable to walk will not kill you, but the pulmonary, cardiac, and nutritional aspects of the disease will.

Perhaps with stories like the one that appeared in the New York Times today, hopefully one day soon, we won't have to talk about any such aspects of DMD because there will be an effective treatment for the disease.

Inquiring Minds

Inquiring Minds

When I responded to Philadelphia Inquirer columnist Daniel Rubin's request on his blog for comments from people with disabilities in the Philadelphia about accessibility, little did I know how that I would soon become the focus of one of Mr. Rubin's columns.

Last week, I received an e-mail from him expressing an interest interviewing me about my life and my soon-to-be released autobiography -- as soon as possible. The interview took place on Friday and today the story, fittingly titled "Aspirations Like Any Other" appeared in the paper.

Truth be told, I have always been an admirer of Mr. Rubin's work. His columns are always very thoughtful and heartfelt. His story about me did not disappoint. It was not one of those sappy, melodramatic, "Look at the poor boy in the wheelchair; he's going to die" pieces that, let's face it, we see all too often. No, this was anything but. It painted an accurate picture of my life, which has been challenging at times, but which has also been productive and enjoyable.

The story was poignant, making reference to my desire for independence and love, but humorous in detailing my recent cheesesteak expedition following my recent cardiology appointment.

Word has it that I will soon appear in another well-known newspaper. Seems I've become quite the media darling!

Heartening News

Heartening News

I can't say I'm a big fan of the holiday, but it turned out to be a pretty sweet Valentine's Day after all. Today, I had my annual echocardiogram at the cardiologist, which I always dread because it looks at the functioning of my heart, typically an issue in guys with DMD. But the news was good, folks. There was noticeable change since last year!

Not only that, but the very lovely Michelle, who performed the test, was able to find a perfect view of my heart on the first try, so my chest wasn't even that sore afterward from being pushed on with the probe of the ultrasound machine. You might say she saw into my heart -- hey, it is Valentine's Day, right?

So after leaving the doctor's office, I did what every good cardiac patient does to celebrate news like this: I ate a greasy, artery-clogging, but delicious Philly cheesesteak sandwich! My doctor wasn't especially thrilled when I told him where I was headed after seeing him. But I was on a mission -- in four months, I will be hosting friends from England (you know who you are). I want to take them to the best cheesesteak establishment in the city, so I've begun an expedition to find that place. Today marked the first stop: Dalessandro's, in the city's Roxborough section. Let's just say their sandwich warmed my heart, which was fitting on this day!

Then and Now

Then and Now

I can't say enough about how writing a book has allowed me to reconnect with old friends from way back. In 1991, meteorologist John Bolaris came to the summer camp I attended for kids with disabilities and I had the thrill of reading the weather forecast with him. Later that year, John took me to a Philadelphia Eagles game, returning later that evening for a holiday dinner with my family.

After several years in New York, John recently returned to Philadelphia, this time as chief meteorologist at Fox 29. Through my publisher, Little Treasure Books, I got in touch and had a chance to visit him at the studio today. Not only that, but John has written a very touching endorsement that will soon grace the back cover of my book. And thanks to a little bit of networking, another TV appearance is a distinct possibility. Stay tuned...

In the Blinq of an Eye

In the Blinq of an Eye

It seems I've become an overnight sensation out there in the so-called blogosphere. Alerted last week to a request by Philadelphia Inquirer columnist Daniel Rubin for insight into the accessibility situation in Philly, I contacted Mr. Rubin and began an e-mail dialogue on the subject. Today, one of my e-mails appeared in Mr. Rubin's blog, Blinq, along with a link to Winheld's World.

To be sure, the exposure is wonderful. But I'm even happier to know that Mr. Rubin has pledged to spend more time looking into accessibility here in the City That (Supposedly) Loves You Back. I mean, I'm about the biggest Philadelphia cheerleader around. Philly's a great place, with lots to see and do, much of which is readily accessible to those of us in wheelchairs. Still, there's plenty of room for improvement. Curb cuts and sidewalks can be treacherous; many shops and restaurants are out of reach. And don't even get me started on parking and mass transit!

Accessibility in cities is to be the focus of my master's thesis in urban studies, so I'll be learning more in the coming weeks and months. Meanwhile, if you have any observations that you'd like to share about accessibility in the city where you live, please consider posting a comment...

Genetically Speaking II

Genetically Speaking II

How many times can I show a picture of me talking to a class? I decided to change things up and have the genetic counseling students I spoke to today surround me in the above photo. I don't know if you noticed that they're all of the female persuasion. I did, though I didn't happen to get any phone numbers!

Still, they were nice enough to listen to me for an ENTIRE HOUR. Prior to my appearance, the students learned about Duchenne's from one of the doctors at The Children's Hospital of Philadelphia. My job was to share the more personal side of the disease. I used a PowerPoint presentation containing photographs at various points in my life.

But as this was a class on genetic counseling, I also shared my thoughts about genetic testing and pregnancy termination. I took some heat from a few readers for my comments on this to last year's class. I told the students that I would personally not want to bring a child into this world knowing he would have DMD. That doesn't mean I'm rejecting my life or the lives other guys with the disease. There was no genetic testing when many of us came along. Once you're here, I believe you must live your life to the fullest. But nobody wants to have Duchenne's. I would not knowingly want to subject my child to it.

That's just my opinion, though I would think there are others out there who feel the same way. So criticize me if you will, but please respect my opinion as I'll respect yours.

I'm Back!!!

I'm Back!!!

When I had my tracheotomy in 2002, I had every intention of completing my studies at Temple University, where I had been pursuing a master's degree in urban studies. However, I found it difficult both physically and emotionally and eventually left school the following year. I never thought I'd return because, quite honestly, I wasn't sure I'd even be around.

Four years later, I'm still here so I've decided to give it another shot. Had I not left in the first place, I likely never would have written my book or launched this blog. But I've always finished what I started, so it didn't sit well with me to leave school. Plus, my interest in cities and the field of urban studies has never died.

So today, with frigid weather conditions outside (see me above all bundled up), I headed to campus to meet with some of the professors in the department to explain why I had left so abruptly in 2003 and to talk a bit about the nature of my disability, something I had rarely discussed with them before, out of concern that it would change the way people saw me. We also discussed possible thesis topics.

I'm hoping to finish my degree by the end of the year. It's not going to be easy, as my energy is limited, but I figure that if I can write a book, I can write a thesis. Even if I do, though, it can't be the end. It has to lead to something. Maybe I won't have a long career but I'm doing this so I can work in the field I love.

Wish me luck. I'll be sure to keep you updated on my progress.

Adding Insult to Injury

Adding Insult to Injury

Last year, I wrote about an unpleasant phone conversation with a representative at Social Security. News flash: obnoxious people still work there. Take my conversation today with a woman named Betty, for example. The purpose of my call was to report income I had made from September to November, but for which I received a paycheck only a few days ago. From the start, she had a rude, condescending tone and interrupted every time I tried to explain my situation.

Betty: "How long have you been working?"
Me: "I'm no longer working, but the job began in September."
Betty: "No, listen to me! What DATE did you start?"
Me: I don't have an exact date.
Betty: "Well, you have to report when you start working."
Me: "I'm sorry, but I didn't have any specific information at the time because I'm a consultant."

When I asked Betty to repeat something I had not heard her say, the conversation quickly deteriorated.

Betty: "I'm speaking loud enough. You're the one that's quiet."
Me: "Ma'am, I'm on a ventilator, so--"
Betty: "Well, it doesn't say that here."

That's when I lost it.

Me: "WHY THE HELL DOES THAT MATTER!?! SINCE WHEN DO I HAVE TO REPORT THAT!?! NOW I'M YELLING, WHICH IS VERY DIFFICULT FOR ME!" I screamed at the top of my lungs, "You've been rude and you've talked down to me the whole time; I'm not stupid, just disabled!

Never had I felt so insulted in my life. My heart now racing and with tears in my eyes, I demanded to speak to a supervisor. However, the apology I received was somewhat half-hearted, saying she was sorry if that's what Betty had said to me.

Social Security has some work to do in the area of customer service. Need I say more?

Keeping Pace

Keeping Pace

Looks like my decision nearly three years ago to have a cardiac defibrillator implanted in my chest was a good one. At a routine electrophysiology appointment today, I learned that the device again took action to correct a dangerous heart rhythm. It was able to "pace" me out of it, so it did not have to deliver a shock.

I actually remember the incident, which occurred back in October. I was at the computer, chatting online with a friend and listening to the Flyers game. Suddenly, I felt my heart beating rapidly. I became dizzy and warm, and the light in my bedroom seemed to grow dim. And then just as quickly as it began, it ended. I immediately wondered if the device had helped me.

As the doctor reminded me today and at my previous appointment, when the device reported taking action, this is exactly the reason why I have it in the first place and thus no reason to be alarmed. Still, I can't help but find it alarming. More than that, though, it reminds me just how lucky I am that my cardiologist recommended implanting the defibrillator. I feel it is therefore my responsibility to live my life to the fullest because so many other guys with DMD haven't been as fortunate. It is a responsibility I take seriously and one that will motivate me as long as I live.

A Jazzy Night

A Jazzy Night

As much as I hate going out in the winter, I'm not about to put my life on hold until spring. Last night, I ventured out -- all the way to Atlantic City -- to a performance by Chris Botti (the YouTube clip above is of the song "Venice"). One of my nurses and I enjoy his music on the radio and when we heard he was going to be in the area, we decided to go check it out in person.

I didn't purchase tickets too far in advance because you just never know about the weather in the winter. When I called Ticketmaster for accessible seating, I got a very friendly -- but totally useless -- woman who couldn't find any tickets for me. So I decided to call the facility directly. A woman at the box office told me if I arrived three hours prior to the show, they'd sell me a ticket if any were left.

"Yeah, but I'm coming from a great distance. I'm in a wheelchair and on a ventilator and it's not that easy for me to just show up," I explained.

After being transferred to someone else, I learned I could purchase regular tickets and they would find me appropriate seating when I arrived.

That's just what I did, and I'm glad I was persistent because it was a great show. Botti himself is, of course, very talented with the trumpet. I couldn't imagine being able to hold my breath that long. Of course, I do have a trach and ventilator so I guess I wouldn't need to come up for air if I played a musical instrument!

Seriously, though, I was particularly impressed by guitarist Mark Whitfield and drummer Billy Kilson. I enjoyed nearly all of the music but especially their rendition of Miles Davis' Flamenco Sketches (the link is to the original version). It was as if the instruments were engaged in a conversation, each one responding in its own unique voice.

After a great night like that, I'm starting to think about venturing out a bit more this winter. Stayed tuned...

Wake Up

Wake Up

Happy New Year, everyone! Though I often have the radio on for some background music while I'm working at the computer, there are many songs I like whose lyrics I have never learned. With the the radio up loud today, I finally heard the words to "Wake Up Everybody" an old classic by Harold Melvin and the Blue Notes.

Not only is it a great song, but it has true meaning, especially in today's world. So I thought it would be appropriate to begin 2008 by sharing this song with you (gotta love YouTube). Have a great year and let's all do our part to change the world...

Steppin' Out on New Year's

Steppin' Out on New Year's

Year after year, I have spent New Year's Eve bored and depressed, watching the Flyers or 76ers on TV. But not this year. I actually went out on New Year's Eve for the first time in my life, spending a few hours at a Center City comedy club.

It took some extra effort to go out tonight. I had to alter my routine a bit and then go out in the cold. I had to pay expensive parking fees for my full-size van, as well as club admission for my nurse. This is an important consideration whenever I am out with my nurses -- do I pay for their admission because they are on the clock and it wasn't their decision to go somewhere? I have no set policy, but for more expensive tickets such as tonight's, I typically pay for my nurses.

While it all added up to be an expensive night out, I was grateful just to have a nurse willing to work on New Year's Eve. The show, which featured comedian Joe DeVito, was enjoyable and the club was very accommodating, even reserving a table for me so I didn't have to fight the crowds. All in all, it definitely beat staying home and being miserable.

Who knows what's in store for me in the coming year, but with complimentary tickets for a future show, one thing's certain: I will be making a return visit to the comedy club.

House Arrest

House Arrest

After years of speeding in my motorized wheelchair, the long arm of the law finally caught up with me today. Well, at least that's what I thought when I saw a uniformed police officer at the door. But it was just my friend and former attendant Maria -- now Officer Maria -- and instead of serving me with a search warrant, she served me and my family with a chocolate cake! She did slap a handcuff on my wheelchair, but only because my father insisted.

Though it's disappointing when I lose my best attendants, it's always good to hear when they're doing well. It was great to catch up on old times, but those stories weren't nearly as exciting as the ones about her time on the police force. After all, getting me out of bed and feeding me breakfast isn't half as exhilarating -- and dangerous -- as chasing the bad guys! Of course, Officer Maria might soon be chasing me if I don't stop speeding...

We Are Family

We Are Family

Back in the day (which wasn't actually all that long ago) the kids table was always full with cousins from both sides of the family for holiday dinners at our house. Now that everyone is away at school or working far away, we never all get together. As the oldest cousin, I decided to change that this year and organized a cousins' lunch. The stars must have been aligned because we were all able to agree to meet today. For me personally, it meant a great deal. I plan on sticking around for a while, but my health situation is what it is. So I don't want to miss any opportunities to get together with everyone. I'd say it was great having no adults around, but we are all adults now--no kids table for us anymore!

Sign of the Times

Sign of the Times

It seems I've become quite popular as of late. As I mentioned in my entry following my hospital appointments last week, yours truly was interviewed by The New York Times, which was gathering information for a wide-ranging story on DMD that should appear within the next few weeks, from what I've been told. The story will focus on the improved quantity and quality of life for those with the disease, which was why they observed my appointment. Just the simple fact that older guys like me are even around today is indicative of how things have improved.

Today, as you can see from the photo, the Times' videographer came to my home to take a more in-depth look at a day in my life for the newspaper's website. And you just know I used this opportunity to promote my soon-to-be released book!

Stay tuned to Winheld's World for news about when the article and/or video will appear...

Take a Deep Breath

Take a Deep Breath

I did a lot of that today at my visit to the pulmonologist today at The Children's Hospital of Philadelphia (CHOP). Pictured (from left) are Dr. Howard Panitch, my pulmonologist, and Dr. Jason Caboot, one of the pulmonary fellows. Though I was feeling less than energetic, the results of my pulmonary function tests (PFTs) were not as bad as I thought they would be, and were similar to my June results.

One thing I've been noticing in recent years is that with Duchenne's, we're all still learning. Doctors are now realizing that there are no hard and fast rules for treating this disease, as my pulmonologist explained. While some doctors feel that guys with DMD should eventually have tracheostomies, others believe that no one with DMD should have them and should instead receive non-invasive ventilation. Not necessarily so, Dr. Panitch said. Patient preference, among other factors, is now an important consideration. He went on to tell me about a guy in his mid-20s with DMD who opted to have his trach removed, and began using his ventilator through a sip attachment during the day and a mask at night.

Could I do that? Again, it's an individual thing. I believe that I was in such poor shape that I needed the trach when I got it. Even today, though, my cardiac status might make the trach a better option because I could exert myself less. Without a trach, on the other hand, I could be more independent, able to stay by myself for periods of time. Still, I do need assistance, and I would not qualify for enough help if I didn't have a trach, which entitles me to 16 hours of nursing care a day. I also wouldn't be able to talk as well without my trach because I'd need to take breaths from the vent through my mouth and wouldn't be able to directly suction secretions from my trachea if I had a cold.

It was a busy day, as I also had an appointment in CHOP's neuromuscular clinic, where I saw my neurologist as well as a nutritionist, geneticist, physical therapist, and social worker -- all while being observed and interviewed by a reporter and a videographer for The New York Times for a piece on DMD (Stay tuned). Camera or not, though, I was my usual funny self. When the nutritionist talked about the "textbook" way of doing something, I told her that I had "lost the textbook" and was not "planning on finding it anytime soon!" After all, just because it was a long day didn't mean I was about to lose my sense of humor.

Renaissance Man

Renaissance Man

Though I love my sports as much as the next guy, I enjoy some culture every now and then. So I decided to take a break from last-minute revisions to my book manuscript to check out the new Perelman Building (special thanks to Brad at phillyskyline.com, one of my favorite sites, for the photo) of the Philadelphia Museum of Art. Its collection, which includes may costumes and furniture, may be best descibed as eclectic. Very interesting, though I was able to better appreciate what I saw because I went with a friend who is an artist! For more photos, please click here

The building itself was impressive. Built in the 1920s, the Art Deco style building was originally home to Fidelity Mutual Insurance Company. However, getting into the place was interesting. At a wheelchair-accessible side doorway, we had to push an intercom button so a guard could bring down a lift. There was barely enough room for me and the guard. At least it was accessible. Because that wasn't the case when we tried to find a place to eat. But hey thats life in the big city, especially an older one like Philly. We did find a good pizza shop, though.

Now, back to editing my book...