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Thursday, December 25, 2008

Frost/Nixon



What began as a frustrating afternoon at the movies -- no accessible parking spaces, long lines, and an automated ticket kiosk that didn't work -- proved extremely worthwhile, as "Frost/Nixon" did not disappoint. The film, which portrayed the extensive 1977 television interviews by British journalist Sir David Frost of disgraced former U.S. president Richard M. Nixon.

Not having lived through the Nixon presidency and Watergate scandal, my opinions are formed mostly from textbooks. While "Frost/Nixon" reinforced a number of my beliefs, it also challenged some of them. I could relate to Frost's situation, as depicted in the movie. I'm no famous TV personality, but whether I'm arranging nursing care, handling medical issues or coordinating publication of my book, I know what it's like to put your time, your money, or your reputation on the line and assuring those around you that everything's going to be okay, all the while having serious doubts yourself.

All in all, it was a thought-provoking, entertaining film. It was definitely worth all of the aggravation of getting into the theater!

Monday, December 22, 2008

Cousins, Part Deux


Frigid temperatures and guys with DMD whose hands can't drive their wheelchairs when it's cold outside are a bit like oil and water: they don't mix. So normally you wouldn't find me out in 17 degree weather. But when it's to break bread, or in this case, rice and noodles, with rarely seen family members, I'll happily freeze my seated ass off.

That's right, tonight marked the second annual cousins' gathering. Instead of Italian, we went for Chinese this year. Regardless of the change of venue, a good time was had by all (we were missing one cousin, who is in Australia, where it's summer). Then before I knew it, it was time to say goodbye and head out into the cold. Until next year...

Monday, December 08, 2008

Success!


As I've mentioned before, changing my feeding tube is something that could ordinarily be done at home, but due to some issues (see here and here) with the tube going into the wrong place, I've been having it done at the hospital, where proper placement can be confirmed by x-ray.

Today, for the first time in almost five years, I had my nurse change the tube at home in my own bed and it was a success! Sure, I had my doubts until we flushed the new tube with some water. When that didn't hurt and I felt the water enter my stomach, I knew we were in good shape. I felt some tenderness in the area near the tube, no doubt because the old tube didn't come out easily.

But I was relieved the tube change was successful. I had my nurse roll me on my side and I went back to sleep. It may have been early, but I already knew it was going to be a good day!

Wednesday, December 03, 2008

Dream Team


For the fifth time in six years, I addressed second-year medical students at the University of Pennsylvania today. Here I am with some of the usual suspects, part of the "dream team" from the pulmonary department at the Children's Hospital of Philadelphia. In back (from left) are Dr. Jason Caboot, who is making his second appearance on Winheld's World, and Dr. Hank Mayer, who took care of me when I was hospitalized for my tracheotomy in 2002. Next to me is my friend Pat Hilferty, a fellow DMD'er who also addressed the students.

As always, it was something of a whirlwind tour, as I spoke to four classes in the course of an hour, but I thoroughly enjoyed the experience. It helped that, despite staying up late last night, my voice was very strong today. But what helped even more was that the students asked excellent questions, both medical and social. As a speaker, this showed me that they were interested, but as a patient, it showed me that these future doctors will soon join the ranks of medical professionals who "get it." After all, any good doctor, in my opinion, must ask good questions.

Of course, as those who know me will attest, even if you don't ask me questions, chances are I'll think of something to say. My legs may not work, but my mouth does!

Saturday, November 22, 2008

To the Summit


We all want to see a cure for muscular dystrophy, but it's important that those of us affected by the disease, patients and families alike, don't lose sight of the fact that cure or no cure, there is still a lot of life to be lived.

That's why I decided to participate on a panel of college students and graduates during a session today at a "Muscle Summit" convened by the local chapter of the Muscular Dystrophy Association (MDA). The goal was to show parents that higher education -- and employment -- are possible even with muscular dystrophy. My message was that the university setting offers a microcosm of the world, allowing many students with disabilities their first chance to experience things like independent living, employment, and social activities. I know I wouldn't be the same person had I not gone to college.

Admittedly, I haven't been involved with MDA much since I was a child, when I served as a poster child for the local chapter of the organization, attended summer camp, and volunteered at the annual Jerry Lewis MDA Telethon. As I grew older, I (and my friends with DMD) concluded that MDA was not focusing enough on the needs of the young adult/adult population.

But a few years ago, I returned to the MDA-sponsored clinic at the hospital. Meanwhile, the local chapter has made an effort to reach out to adults like me. I've been receptive because I believe that if you're not willing to be part of the solution, you may be part of the problem.

So today was a first step for me. I think it went well. If asked to participate in next year's Muscle Summit, I will gladly do so.

Tuesday, November 18, 2008

You Want a Piece of Me?


The University of Utah said they did -- want a piece of me, that is. A piece of skin from my upper arm to be specific. You see, I am part of a genetic registry of people with DMD, maintained by the university (I gave them some of my blood a while back). Apparently, I am part a relatively small subset of the DMD population. Researchers are studying a possible intervention (in the very, very early stages) for that subset and required skin cells for said study.

So today, I paid a visit to my dermatologist, who performed a skin biopsy known as a skin "punch". The procedure took less than five minutes. First, a nurse injected my arm with a local anesthetic. Then the doctor, using a cookie cutter-like instrument removed a piece of skin the size of a pencil eraser. Finally, he closed the small wound with a dissolvable stitch. Now, I've often heard doctors say, "This won't hurt at all." But let me tell you, other than the needle, I didn't feel a thing. In fact, if I hadn't watched the doctor, I never would have known he had just removed a piece of my skin!

When I was initially contacted by the university, I agreed without hesitation, even though it meant giving a part of myself to something that almost certainly will never directly benefit me. Naturally, I was asking myself what I had gotten into when the nurse rolled up my sleeve and prepared that syringe! But it felt like the right thing to do. I would never say that my existence is a miserable one, but if I could help someone avoid the challenges I have faced and continue to face in my life, I'd do it every time. Even if I have to give up some of my precious skin!

Friday, October 31, 2008

Phinally!




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 Phillyskyline.com), 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.

Sunday, September 07, 2008

Fly Like an Eagle




With the way they played in their season opener today, maybe I should start attending Philadelphia Eagles games more often. Thanks to quarterback Donovan McNabb, dynamic rookie receiver DeSean Jackson, and a host of others, the Birds launched an aerial assault against the St. Louis Rams, defeating the visitors, 38-3.

Great weather, great seats, great game -- what more could you ask for? I only hope this is the start of a great football season here in Philly. Time will tell.

GO EAGLES!!!

Monday, September 01, 2008

Catch Me On Sirius Satellite Radio!!!


Catch me this Wednesday, September 3rd from 8 am – 9 am EDT on “Doctor Radio” on Sirius Satellite Radio, channel 114, where I'll be talking about my book and about living with Duchenne muscular dystrophy.

If you don’t have Sirius, don’t worry. Listen online by signing up for a free 3 day trial .

Saturday, August 23, 2008

Saturday in the Park




What a beautiful day! Very un-Philadelphia-like for August. No way was I going to stay at home on a day like this, so with a family friend, who was visiting us from out of town, and my nurse du jour, I decided to catch the train and head downtown. Yes, that's right. Even after last year's harrowing encounter with a SEPTA train, I thought I would give it another shot, what with the cost of gas and parking. I'm glad that I did, as things were a lot easier with my new wheelchair.

When we arrived safely in Center City, we made our way to Rittenhouse Square, one of my favorite spots in Philly, where we ate pizza and girl -- I mean people -- watched. What more could a guy want? Beautiful weather, delicious pizza, and gorgeous girls. Hope you enjoy the pictures of the scenery -- and I actually mean the scenery this time. Come on, I'm not a total dog!

Friday, August 22, 2008

Happy 30th, Part 2


Back in March, when I celebrated my 30th birthday, a group of my high school friends got together and decided that they would take me to a Phillies game this season. Well, it took until August until we could all find a date that would work for all of us, and tonight was the night.


We couldn't have picked a better night. The weather was perfect, with a gentle breeze and clear skies. The Phillies, despite a sluggish start, easily handled the Los Angeles Dodgers in an 8-1 victory 70s retro night (hence the picture below of me with some drunk folks dressed appropriately for the occasion). Even better, though, was the company. I'm so glad to be close with my friends from way back when. I did want to strangle them, though, for ordering the Phillies birthday package. Putting my name on the scoreboard (above) was one thing, but having some dude come over and lead the group in singing "Happy Birthday" and showering me with confetti that I couldn't get out of my hair was another thing. I suppose if it had been a cute girl singing, I could have handled that!

"Well," said one of my friends, "you only turn 30 once, right?"

After tonight, I beg to differ!

Thanks for a wonderful time, guys! Let's do it again next year...

Saturday, August 09, 2008

Fancy Footwork


After trying on pair after pair of new shoes in recent weeks, I finally found what I was looking for (at left). Getting new shoes is no big deal for most people, it is a bit of a challenging for many of us with DMD, whose feet have turned inward as a result of the disease. My old pair had grown molded to the shape of my feet over the years, but they were at least 15 years old and falling apart at the seams, as you can clearly see below.

I was pretty pessimistic that I would ever find anything as comfortable as my old shoes. While being unable to wear shoes isn't the end of the world, it would have been one more thing this disease has taken from me. Why let that happen if I could help it? With my nurse's assistance, I found a pair of wide-width shoes a couple sizes larger than my actual size (it's not as if I'm going to walk in them) and voila, my feet slid right inside. It was love at first, um, feel. I bought them and wore them out of store.

With any luck, my new shoes and I will both make it another 15 years!

Wednesday, August 06, 2008

Winning Combination


With the way the Phillies played tonight, defeating the Florida Marlins, 5-0, my friends Jim (standing) and Pat (to my left) and Jim need to make the trip from New Hampshire more often. Or maybe it was our attractive female company, Sarah (standing) and Jen (seated, next to me). Whatever the reason, it was one of those perfect summer nights meant for baseball.

Although Pat and Jim loved their innaugural visit to Citizens Bank Park and look forward to returning next year, I couldn't get the longtime Boston Red Sox lovers to adopt the Fightin' Phils as their favorite team. Not that I can blame them, when their team won the World Series last year and the Phillies have not accomplished that feat in nearly 30 years!

Tuesday, August 05, 2008

Graduation Day


No, I haven't finished my master's degree. For that, check back next spring. Today was hopefully the last time I had my feeding tube changed at the hospital. Normally, a g-tube "button" such as the one in my stomach could be changed at home by a nurse. However, about a year or so after I had the surgery to place the tube, I developed what is known as a "false tract" and when we tried to replace the tube, it ended up going somewhere in the abdominal wall instead of in my stomach. Obviously not a good thing and let me tell you, when we flushed the tube, it hurt like hell!

On a couple of occasions, we all thought that the false tract had closed, only to find out that it had not. Then I would have to get to the Interventional Radiology (IR) department at The Children's Hospital of Philadelphia (CHOP) as quickly as possible so that the hole in my stomach would not close up.

Eventually it was decided that I would just go to IR on a regularly scheduled basis (every three months), where they would change the tube over a guide wire and then introduce a contrast solution so that they could check placement. However, it is always a bit of an ordeal. I have to get out of my chair and lay on a table. As I don't get picked up, I bring my Hoyer lift (my lucky nurse has to lift in and out of my van). Then it takes a while to position me on the table. When I first started doing this, it caused me a great deal of anxiety, as I was worried about hurting my legs, which are extremely contracted. Now, I don't worry at all. I know that my nurse isn't going to hurt my legs and the IR staff is always helpful in positioning me. They take their time and now know exactly what I need -- towels, pillows, straps, etc. -- to be comfortable.

But after three years of doing this, the doctor is confident that I should be able to change the tube at home again. So today, I had my nurse try to change it while I was on the table in IR. Everything went well, so it looks like we're good to go. To celebrate my "graduation," I decided to get a group shot of me with some of the IR staff. Here I am with (clockwise, from bottom left) Dr. Anne Marie Cahill, Corinne Leitheiser, Karla DiTomasso, and Jayme Whitaker. You'll have to excuse my open mouth -- it is such a great photo of everyone else that I had to use it.

Although they are a nice looking bunch (the female staff, anyway), I would still rather be able to have my g-tube changed at home. Come November, it looks like that's going to be possible. Wish me luck!

Friday, August 01, 2008

Not Just a Voice Anymore


You can only get to know people so well when your only interaction with them is over the phone. For example, I have spoken to many people over the years at the Jewish Employment and Vocational Services (JEVS), which provides my attendant care services. But until today, when I addressed JEVS staff at their monthly meeting, I never had the opportunity to meet many of them.

With me are (from left) Director of Operations and Marketing Dina Sanz; Administrative Assistant Yakelin Cornejo; Service Coordinator Bridget Grabill; and Attendant Care Program Director Jim Boyar.

In my talk, I described my experience with attendant care services, which has been positive overall, but I have my share of attendants who were unreliable, unpleasant, or both. I briefly discussed my disability and its impact on my life and explained how I have always strived to live as normally as possible. Of course, I mentioned my book and was asked several questions about it.

Now that the entire JEVS staff knows who I am, there's no way for me to remain anonymous. I can only imagine what it will be like the next time I call: "Winheld? Oh, aren't you that famous writer who spoke at our meeting?"

More like infamous. But yeah, I'm that guy!

Tuesday, July 22, 2008

Visitors!


I always hoped my book would help a lot of people. I never expected that I would meet any of those people. Last week, I met several at the PPMD conference. Today, I actually had a few of my adoring fans pay a visit to my home. Here I am with Lori (back, center) and her children (from left) Ben, Lydia (holding my dog, Zoe), and Sam, who came all the way from New Hampshire to meet me and have their copy of Worth the Ride: My Journey with Duchenne Muscular Dystrophy personally autographed.

Ben and Sam both have DMD, so my book has been helpful to their family in showing them what is ahead on their own "journey." From the sound of things, it seems that they will be quite successful. At the very least, they will be taking that journey on some very cool wheels! Back when I was growing up (and yes, it was a long time ago), they didn't make wheelchairs like the ones in which Ben and Sam were cruising around the house.

It was a nice visit. I got to impart some words of wisdom (imagine that) and I even learned a few things myself. It's always good to be able to compare notes when you're facing something like DMD because there is never enough you can learn.

I've learned that I have fans across the country and around the world. So, if you're ever going to be in in the Philadelphia area, drop me a line. I'd love to meet you, too!

Sunday, July 20, 2008

PPMD Day 4: See You Next Year!


Part 4 of Winheld's World coverage of Parent Project Muscular Dystrophy’s (PPMD) 2008 Annual Conference, July 17-20, in Philadelphia.

This year's conference sure did go by quickly! It seems like only yesterday that I was attending the first day of last year's conference! Somehow, I managed to wake up early after a late night out. Maybe the alcohol helped me sleep better (To any of my doctors reading this, perhaps you can write an order). More likely, I just wanted to get down to the hotel in time to bid farewell to my friends. Good thing I got there when I did, as the hotel staff was practically taking the food away. At least I was able see a number of friends and to meet a few more people.

Riding home, I felt glad to have gotten involved with PPMD. The work they do is helping so many people, and to me, that's what it's all about. As I said in yesterday's entry, attending next year's conference may be more challenging, but there's no way I'm going to miss it. I just hope it doesn't go by as quickly as this year's.

Saturday, July 19, 2008

PPMD Day 3: The Main Room!


Part 3 of Winheld's World coverage of Parent Project Muscular Dystrophy’s (PPMD) 2008 Annual Conference, July 17-20, in Philadelphia.

If you haven't seen Mel Brooks' "History of the World, Part I" then you probably won't understand the title of today's entry. But the basic idea is that Comicus, played by Brooks, uttered said line upon being informed by his agent that he was to play at Caesar's Palace (this is in ancient Roman times, mind you) in the main room. But I digress.

Today I played the main room at the PPMD conference, along with four other adults with DMD. Led by our ringleader, Pat Moeschen, we addressed a room full of parents of younger children with the disease, talking about our lives and accomplishments, often bringing down the house in the process.

The main theme of our talk was that life does not end with a wheelchair. We have all been able to accomplish much in our lives, despite being in chairs. (From left) Jason Abramowitz spoke about traveling and playing competitive wheelchair sports; Pat Moeschen spoke about his work as a middle school music teacher; Conrad Reynoldson, who is double-majoring in history and political science, talked about his internship last summer on Capitol Hill; Jacob Gapko spoke about his PhD work in library and information sciences and the annotated biography he has compiled on books written by and about those with muscular dystrophy; and I talked about my book and my master's research. No topic was overlooked in our talk, as we addressed education, family dynamics, independence, and yes, even sex and relationships. "Don't ask a question if you don't want the answer," our moderator forewarned the audience at the beginning of the session.

As I rolled off the platform following our talk, I was greeted by PPMD President Pat Furlong, who thanked me and asked me to be there at next year's conference. I have to admit that I got a little choked up. Next year's conference will be in another city, which presents a number of challenges, chief among them transportation. I know I will overcome these challenges, but an even bigger challenge is my health. It's very hard to think in terms of an entire year, but I will do everything in my power to be there.

That is, unless I become a raging alcoholic, which may happen if I keep hanging out with Pat Moeschen! Following tonight's delicious banquet at which we celebrated Executive Vice President Kimberly Galberaith's 10 years on the job (from left are Jason, Jacob, Kimberly, Conrad, Pat Furlong, me, and Pat Moeschen), he had me out into the wee hours of the night drinking! Of course, "drinking" for me entailed the consumption of half a glass of some sort of vodka concoction. I'll tell you, though, it was enough to ensure that I am now absolutely exhausted. Time for bed. Early wake-up time tomorrow, as I need to get down to the hotel in time to say goodbye to my friends.

Friday, July 18, 2008

PPMD Day 2: Meet and Eat


Part 2 of Winheld's World coverage of Parent Project Muscular Dystrophy’s (PPMD) 2008 Annual Conference, July 17-20, in Philadelphia.

One thing I have found about attending conferences is that you do a lot of eating! I certainly did plenty of that today. In between, I met many people (here I with Donna, of Austin, Texas, a big fan of my book) and participated in some very important panels.

First, I was part of a group of medical professionals and patients that discussed issues relevant to the adult population with DMD. Respiratory and cardiac considerations were the focus of the discussion -- I told the group that "I have had pretty much every intervention that exists" -- although we also talked about social issues. The discussion went so well that the hour-long session nearly stretched another full hour.

Personally, I was amazed at how far treatment of the disease has come. Now, some doctors are putting their patients with DMD on the same cardiac drugs that I credit with keeping me alive -- much earlier. Non-invasive ventilation (NIV) has also become much more commonplace. Do I wish that I had such interventions in the years prior to my entering adulthood? Perhaps. But there is so much that medical professionals have learned in recent years that was not known when I was coming along. Even so, I have been able to live as long as I have lived because the doctors treating me did what they knew how to do at the time to save my life -- and it worked.

A few hours later, I participated in a panel of adults with DMD that met with a doctor from the U.S. Food and Drug Administration (FDA) to discuss our views of risks/benefits and desired outcomes of potential clinical trials for DMD interventions. For those of us in the later stages of the disease, being able to keep walking is obviously not the desired outcome, as we have been non-ambulatory for years. So our views are different from those of the parents of younger children with DMD.

The fact that someone from the FDA wanted to meet with adults with the disease is a significant development. For far too long, it seemed that the adult population with DMD was being all but ignored. I found it to be a very emotional meeting because we had a chance to say what has been on our minds for years. I concluded my remarks by telling the doctor the story of how I listened to a father of a young child with DMD at last year's conference plead for help so that his child would not end up in a wheelchair as if that was the worst thing in the world. "Well, what about us? If there's anyone who should be desperate, it would be us. We are much closer to the end of the line and just want to live our lives."

By the end of the meeting, I was completely spent -- and hungry. But first, I met with the other adults on the panel on which I will be speaking tomorrow afternoon to prepare our remarks. The truth of the matter was that we did not need a whole lot of prep time. We have some sharp minds in the group (except for me!) and we're going to do a great job tomorrow.

My long day came to its conclusion with a nice relaxing meal at a nearby Italian
establishment with my wicked funny pal from New Hampshire, Pat Moeschen; (from left) his girlfriend, Ashley; my nurse, Frank; and Pat's mother, Helen . I don't know where the guy gets it from, but even after a long day, Pat still had his usual sick sense of humor!

Thursday, July 17, 2008

PPMD Day 1: Together Again


Part 1 of Winheld's World coverage of Parent Project Muscular Dystrophy’s (PPMD) 2008 Annual Conference, July 17-20, in Philadelphia.

It was a family reunion of sorts today, as Parent Project Muscular Dystrophy kicked off its annual conference.It was an opportunity to reconnect with a number of parents and medical professionals I had met at last year's conference. Here I am with Dr. Steve Wilton, of the Australian Neuromuscular Research Institute, one of the world's leading Duchenne researchers. I also met a bunch of new faces, some of whom already knew me from this blog and/or my book. It seems I have become quite a celebrity. But don't worry, I won't let it get to my head...well, not too much, anyway!

On a more serious note, as I watched a video about PPMD at the beginning of today's proceedings, I was in awe of what this organization has been able to accomplish in only 14 years. They're at the forefront in developing care considerations for DMD and are investing heavily in research to find a treatment for the disease. Many people are responsible for PPMD's development, but without the vision and energy of PPMD President Pat Furlong, I doubt that any of this would happened. I salute you, Pat, and promise to do my part for as long as I live.

Wednesday, July 16, 2008

The Payback



Last month, I made a friendly wager with my good friend, Pat Moeschen, over the Red Sox-Phillies series. The loser would buy a Philly cheesesteak for the winner. Naturally, I was the loser. After all, teams from Boston win with regularity. Teams from Philadelphia? Not so much.

Still, it was really a win-win situation. Either way, I was going to end up with a delicious, artery-clogging cheesesteak. Just one way, I would have to pay out of my own wallet for that privilege.

With Pat in town early for the upcoming Parent Project Muscular Dystrophy conference, today was the day to settle our bet. First, we took a driving tour of the city. Then we headed for the Reading Terminal Market, where we hunkered down at a table and stuffed our faces with cheesesteaks from Spataro's. I didn't even need dinner tonight, I was so full. And the best part (aside from the sandwich)? Pat wouldn't even let me pay for his. Maybe I should start making wagers with the guy more often!

Wednesday, June 25, 2008

British Invasion, Part 7: Gotta go to Mo's!


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 7 in a series chronicling their visit...

What would a trip to America be like without a visit to...Walmart! Yes, my friends insisted that they would not leave the country until they had been to Walmart, so that was our destination today. They found a few bargains there, but they seemed to enjoy Modell's Sporting Goods even more. Now, when they return home, they'll be able to start a sports fashion trend with their Phillies gear. That, and they'll be singing that catchy "Gotta go to Mo's!" jingle in an English accent!

Our final stop was for lunch at Wendy's. In America, we have the fast-food holy trinity of McDonald's, Burger King, and Wendy's. Apparently not so in the U.K., where there are no Wendy's. Let's just say my English mates enjoyed their BIG meals!

Then, it was time for my friends to pack their bags. I couldn't let them leave without sampling one more Philadelphia delicacy: the Italian hoagie, so I ordered a couple for the road.

Saying goodbye was not easy. The past week was the greatest week of my life. Although I was home, it felt like a vacation. Now, it's time for life to return to normal. But there's always next year, right Emma and Gary?

Tuesday, June 24, 2008

British Invasion, Part 6: Tuesday in the Park


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 6 in a series chronicling their visit...



Few places offer better views of the Philadelphia skyline than Fairmount Park's Belmont Plateau, so today's tour began there. We then got back in the van and crossed the Schuylkill River and headed to one of my favorite spots in the entire city, the picturesque Fairmount Waterworks, which was the first municipal waterworks in the country when it opened in the early 19th century. For lunch, we ate at the posh Waterworks Restaurant and Lounge.

We were all stuffed after lunch, but there's always room for, uh, well Dunkin' Donuts. Looks like I've created a monster, as my friends wanted more iced coffee! The food fest continued later, as Emma and Gary treated us to Chinese food for dinner.

Is it possible to be exhausted from eating? If so, I am!

Monday, June 23, 2008

British Invasion, Part 5: It's Comcastic!


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 5 in a series chronicling their visit...



Can you believe that's a giant high-definition video wall in the lobby of the newly-opened Comcast Center? That was the first stop on our tour of Center City Philadelphia today. Called the "Comcast Experience," the wall measures 83 feet wide by 25 feet high.

After experiencing that, we made our way down John F. Kennedy Blvd. to LOVE Park, where Emma and Gary got a photo with Bender from "Futurama". Crossing the street, we went through the courtyard at City Hall, the largest masonry building in the world, which took 30 years to build!

Next we made a quick detour at Dunkin' Donuts. There's one on pratically every block in America, but apparently none in the U.K., so my friends just had to try one of DD's iced coffee concoctions.

Then we went to the Loew's Hotel, formerly the PSFS bank headquarters. and took an elevator up to the 33rd floor, where we caught a breathtaking view of the city.

Our final destination on this day was the historic Reading Terminal Market, where I introduced Emma and Gary to that famous Philadelphia delicacy, the cheesesteak, at Spataro's It was love at first bite. Even I, cheesesteak connosieur that I am, have to admit it was one of the finest sandwiches I have ever consumed.

Before signing off for the night, I'd like to give a shout goes out to Brad over at PhillySkyline.com for his assistance in putting together today's itinerary.

Sunday, June 22, 2008

British Invasion, Part 4: Meet, Greet...and Eat


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 4 in a series chronicling their visit...

My friends were only away for one day, but I truly missed them. So I was more than happy to take a ride to central New Jersey to pick up Emma and Gary at the train station after their New York expedition.

For the rest of the day, we, uh, ate! First, we stopped at my aunt and uncle's, where we had drinks and ate some delicious appetizers -- and I autographed their copies of my book, with the assistance of my lovely English secretary! When we got home, the food fest was on, as friends and family came to meet my English friends and to have a hamburger and hot dog in their honor.

This visit is going fast. It will be over before I know it. But I'm having a great time and I'm going to enjoy it while it lasts...

Friday, June 20, 2008

British Invasion, Part 3: Take Me Out to the Ballgame


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 3 in a series chronicling their visit...



When I first began exchanging e-mails with Emma and I told her about my love of sports, she expressed a desire to see a "proper" baseball "match" one day -- and to eat a hot dog while doing so. I promised her that if she ever made her way to Philadelphia, I would take her to a game and get her that hot dog. Well, she did, and tonight, I did!

With a clear sky, pleasant breeze, low humidity and temperature near 80 degrees, you couldn't ask for a better night for baseball -- except for a Phillies win! On the Sound of Philadelphia Celebration night, the game began on a sour note when old Phils' nemesis Vladimir Guerrero stepped to the plate in the top of the first and impaled the hometown team with a two-run homerun. It didn't get much better, as the Phillies offense could not muster much against Angels' pitcher Ervin Santana and the Angels hammered the Phillies' pitchers all night. It wasn't pretty.

The final score was 7-2. Normally, I would have been less than pleased about that. But my English mates had a great time and that was really all I cared about. "Hey, at least you got to see how the game is played," I told them.

"Yeah, the Angels showed how the game is played!" said my nurse.

All in all, though, it was a fun evening. And, of course, Emma got her hot dog!

With my friends headed to New York City tomorrow, Winheld's World will take a break. See you Sunday...

Thursday, June 19, 2008

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!

Wednesday, June 18, 2008

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!

Sunday, June 15, 2008

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!

Monday, June 09, 2008

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!

Saturday, June 07, 2008

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.

Saturday, May 31, 2008

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!

Saturday, May 24, 2008

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...

Wednesday, May 21, 2008

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...

Saturday, May 17, 2008

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...

Friday, May 16, 2008

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...

Thursday, May 15, 2008

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...

Friday, May 09, 2008

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!

Wednesday, May 07, 2008

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!

Thursday, May 01, 2008

"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!

Tuesday, April 29, 2008

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.

Saturday, April 26, 2008

Stanley Cup, Baby!


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

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

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

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

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

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

Tuesday, April 22, 2008

Back for More


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

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

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

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

Thursday, April 17, 2008

And Here's the Pitch...


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

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

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

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

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

Thursday, April 10, 2008

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!

Saturday, April 05, 2008

On Broadway


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

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

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

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

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