Waiting Game

Waiting Game

When I heard a strange sound and the lift on my van began operating erratically this weekend -- with me on it -- I knew what that meant: a trip to the repair shop. Fortunately, I was able to get an appointment today. That was a good thing, as the lift completely stopped working after I got inside the van. But that was okay because I figured that as long as I got in the van, it would be the repair shop's problem to get me out!

In these days of instant gratification, I hate to wait for things as much as the next person, but I have to say that I always meet someone interesting in the waiting room whenever I go to get the lift repaired. The truth of the matter is that no one wants to be there, sitting around waiting as time wastes away, for what figures to be an expensive bill. But aside from looking around the showroom at the equipment and vehicles you only wish you could afford, watching whatever the person who got there before you put on TV, or staring aimlessly at the wall, there's only so much you can do you. So you end up talking to other people, asking the inevitable "So, why are you here?" or "How long have you been waiting?"

But you never know where a conversation will lead or what you might learn. On one occasion, I met an engineer who taught me about some of the specifications of my wheelchair. We have actually become friends since our initial meeting. On another occasion, I met a retired law enforcement agent, and together we watched a news broadcast of the funeral of a fallen police officer.

Today, I met two Vietnam veterans. The two men did not know each other, but it was interesting to listen to their conversation. I'm not sure that I would have supported the Vietnam War had I been alive at that time, but you can't help but be amazed by the strength and encourage of the men who serve in the military during times of war. People often tell me that they couldn't imagine living my life, but let me tell you, I cannot begin to imagine the horrors that face soldiers on a daily basis, even today.

After meeting the two veterans today, even my $300 bill didn't seem like such a horror!

31 Flavors

31 Flavors

Yes, it's birthday time again! I don't how I got to be 31 years old, but even though I feel old today, I'm glad to have beaten the odds for yet another year. It will be hard to top Year Number 30, in which my book was published, I returned to school, spoke at conferences near and far, and spent time with special friends. However, I'm hoping this will be a pretty special year, so stay tuned...

After last year's birthday celebration, it was going to be a tall order to even come close this year. Fortunately, the Philadelphia 76ers are pretty tall guys themselves. As it turned out, the team was hosting a meet-and-greet for season ticketholders tonight. Below are some photos from the event.

Writing Feverishly

Writing Feverishly

There's nothing like a fever and a touch of a stomach virus to get the creative, uh, juices flowing. So I thought I'd take this opportunity to update my loyal readers (if any of you are still out there) on my life over the past three months...

1. I finally completed my thesis proposal. Yes, at 2 a.m. last Friday, I e-mailed it to my advisor. Essentially, I'll be conducting a series of interviews with housing developers in Philadelphia to describe their attitudes toward accessibility regulations as well as toward people with disabilities. Ordinarily, writing a proposal would not be earth-shattering news. However, six years ago, when I left school, I not only thought I would never return, but I wasn't sure how much longer I'd live. But thanks to the support of some wonderful friends (Art, Lauren, Emma, Caroline, Pat, Kathie and Julie to name just a few), I decided to go back and finish what I started (gulp) nine years ago. I'm almost there!

2. I switched nursing agencies. I cannot function without the care of nurses. So when the nursing agency I had been with for six years since my tracheotomy could no longer consistently cover my shifts, it was time to make a move. However, my nurses all came with me to the new agency, which saved me the time and stress of having to train an entire new staff of nurses.

3. I had a cardiac scare. After a couple of sleepless nights in December, with my heart pounding through my chest, I saw my cardiologist. He ordered a Holter monitor, the results of which indicated repeated episodes of ventricular tachycardia ("v-tach"), he increased my beta-blocker. As a result, I have felt colder and more tired. But no v-tach. It's a trade-off I'm willing to live with, the operative word being "live"!

4. I hired a self-publisher. My book has proven to be a big hit. Keeping it in a print is therefore a priority. About a month ago, I submitted my book to a self-publisher. The new edition should look almost the same, including the cover. The nice thing is that sales will be on an on-demand basis, meaning I won't have to manage any inventory. When everything is set up, I'll be sure to post an announcement.

So that's it in a nutshell. I'm so glad March is here already, which means that warmer weather and Phillies baseball are just around the corner...

Frost/Nixon

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!

Cousins, Part Deux

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...

Success!

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!

Dream Team

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!

To the Summit

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.

You Want a Piece of Me?

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!

Phinally!

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!

We Are the Champions

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!

Center of Attention

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!

Breathe Easy

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.

Coming Attraction

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!

I'm Back

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.

Fly Like an Eagle

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!!!

Catch Me On Sirius Satellite Radio!!!

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 in the Park

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!

Happy 30th, Part 2

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...

Fancy Footwork

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!