Fan Mail

Fan Mail

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

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

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

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Original Comment #1:

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

My Response:

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

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

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

Original Comment #2:

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

My Response:

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

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

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

Original Comment #3:

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

My Response:

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

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

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

Author! Author!

Author! Author!

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

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

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

Party Time!

Party Time!

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

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

My New Wheels

My New Wheels

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

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

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

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

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

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

Celebrating in Style

Celebrating in Style

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

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

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

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

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

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

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

Need a House?

Need a House?

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

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

Down Periscope

Down Periscope

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

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

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

My Vacation

My Vacation

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

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

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

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

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

Thanks for the Memories

Thanks for the Memories

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

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

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

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

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

Exciting Times

Exciting Times

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

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

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

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

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

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

Inquiring Minds

Inquiring Minds

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

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

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

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

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

Heartening News

Heartening News

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

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

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

Then and Now

Then and Now

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

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

In the Blinq of an Eye

In the Blinq of an Eye

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

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

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

Genetically Speaking II

Genetically Speaking II

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

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

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

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

I'm Back!!!

I'm Back!!!

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

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

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

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

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

Adding Insult to Injury

Adding Insult to Injury

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

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

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

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

That's when I lost it.

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

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

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

Keeping Pace

Keeping Pace

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

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

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

A Jazzy Night

A Jazzy Night

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

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

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

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

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

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

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

Wake Up

Wake Up

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

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

Steppin' Out on New Year's

Steppin' Out on New Year's

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

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

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

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

House Arrest

House Arrest

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

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

We Are Family

We Are Family

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

Sign of the Times

Sign of the Times

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

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

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

Take a Deep Breath

Take a Deep Breath

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

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

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

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

Renaissance Man

Renaissance Man

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

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

Now, back to editing my book...

Welcome Back

Welcome Back

In what has become an annual tradition, I joined several pulmonologists from Children's Hospital of Philadelphia in addressing the second year students at the University of Pennsylvania School of Medicine, where I have seemingly become a regular speaker. In fact, some of today's students remembered me from my spring presentation, when they were in their first year of school. I might just have to change my material next year -- maybe I'll an outrageous foreign accent or something!

As usual, my favorite part of speaking to the students was answering their questions. As the work that I do involves assistive technology, I enjoyed answering the question I was asked about how I use my computer (voice recognition software and an infrared camera mouse). But I thought that the most interesting question I received was when someone asked me when I knew I would attend college and how that decision came about. That was easy. I always planned on going to college. My parents expected me to do so. Where I attended high school, it was practically unheard of not go to college. I saw myself as no different from anyone else. Plus, while I was in a motorized wheelchair, and I missed some time to have spinal fusion surgery, I was relatively healthy.

I would love to be as healthy and energetic as I was back then. Even so, I felt fortunate just to be here, doing what I do best: talk. Whether anything useful actually came out of my mouth, well, I'll let the students be the judge of that!

Darius Goes... to Your Home

Darius Goes... to Your Home

Several months ago, I wrote about "Darius Goes West," an uplifting documentary film (see trailer, at left) that follows the cross-country journey of Darius Weems, a then 15-year-old with Duchenne's, with the assistance of a group of loyal friends. You can ready my previous entry here.


Now, after screenings across the country, the film is coming to DVD, just in time for the holidays. To order a copy, please click here.

We all have a part to play in the fight against Duchenne muscular dystrophy, whether it's Darius with this film or me, with my book about my life with the disease. So, just as I will soon be asking you to purchase my book, I encourage you to purchase a copy of "Darius Goes West." Proceeds from its sales go to Charley's Fund, an organization started by the parents of young boy with DMD that is dedicated solely to funding a cure or treatment for the disease.

Gobble, Gobble, Gobble!

Gobble, Gobble, Gobble!

Happy Thanksgiving, folks! For those in our worldwide audience who are unfamiliar with this holiday, you can read about its origins here, but Thanksgiving is essentially a time to give thanks for all that one has in life. As you can see from the picture above, Thanksgiving is also a time to celebrate with family and friends -- and to eat lots of turkey, stuffing, and mashed potatoes!

My life is hardly perfect (whose is?), but I have plenty to be thankful for this year. My health has remained stable. I have been fortunate enough to find a publisher for my book. I have a wonderful circle of friends, which has grown to include friends across the world, thanks to this blog. I have a loving family and a dedicated group of nurses and attendants to care for me.

And tonight, of course, I was thankful for a delicious Thanksgiving dinner. For more about the food that I ate, click here or here to visit Food Network Musings, where Sue (that's Aunt Sue to me) has posted photos of the dinner she prepared. By the end of the meal, I was also pretty thankful for my ventilator as I had eaten so much that I wouldn't have been able to breathe without it!

From Winheld's World to your world, wherever that may be, Happy Thanksgiving!

Yo, Adrian!

PUBLISHER FOUND!!!

Yo, Adrian!

Sly Stallone I ain't, but like Rocky before me, there I was today at the top of the steps of the Philadelphia Museum of Art, arms raised (someone's arms, anyway) in triumph at the fact that two years after beginning the project of a lifetime, I officially signed an agreement with Little Treasure Books to publish my memoir, Worth the Ride: My Journey with Duchenne Muscular Dystrophy.

It has been a long road, with long hours, moments of self-doubt, and several bouts of writer's block, but with a tentative publication date of February, 2008, we're nearly there.

There are so many people who deserve credit for making this moment possible that I could practically write another book. To my friends, family, nurses, doctors, advisers, and to Winheld's World readers near and far, thank you for your support. I could not have done this without you. And to everyone out there who has ever been touched by DMD, our experiences may not be exactly the same, but this is your book, too. Together, we will create awareness of this disease, so that someday soon, a cure will be found and no family will ever have face it again.

Please continue to visit Winheld's World for all the latest updates...

Proceeds from book sales will go to Parent Project Muscular Dystrophy, which works "to improve the treatment, quality of life and long-term outlook for all individuals affected by Duchenne muscular dystrophy (DMD) through research, advocacy, education and compassion."

Trick or Treat!

Trick or Treat!

Happy Halloween, everyone! Check out the picture of me and my sister, Amy, from Halloween way back in 1985, when I was seven years old. That year, our mother decided that we would not wear store-bought costumes and ordered the pattern for the Crayola Crayon costumes. I'd say they turned out pretty well!

Obviously, the photo is from my pre-wheelchair days. Unless you saw me walking, there wasn't a whole lot separating me from other children that age. It saddens me to know that today, there are still 7-year-old boys with missing teeth, who will eventually need motorized wheelchairs and all of the other things (tracheostomies, ventilators, feeding tubes, etc.) that I need to live. Fortunately, such technology exists. But wouldn't it be great if all of those little boys could grow up and never need any of that stuff? For their sake, I hope that day arrives soon.

A Pat on the Back

A Pat on the Back

Congratulations go out to loyal Winheld's World reader and my friend Pat Moeschen, who was recently named Wal-Mart's 2007 New Hampshire Teacher of the Year.

I first met Pat, who has Becker muscular dystrophy (which is closely related to Duchenne's), at the Parent Project Muscular Dystrophy conference a few months ago and was impressed with his positive energy and can-do attitude. No doubt these qualities are what make Pat so successful as a band teacher at the Woodbury School in Salem, New Hampshire, where he teaches sixth through eighth grades. For most of us, those years are often very difficult. I'm sure his students, past and present, will attest to the fact that a teacher like Pat can make all the difference. As someone with a disability, I know that every day presents its challenges. My hat goes off to Pat for facing those challenges head on and with great success.

Congratulations, my friend!

In Case of Fire

In Case of Fire

Under normal circumstances, today's world is pretty accessible for those of us with disabilities. But in a natural disaster or even just a really bad storm, all bets are off.

As I was watching coverage of the California wildfires yesterday, I saw an interview with a sign-language interpreter talking about the difficulty in making the deaf community aware of evacuations in the area. I got to thinking about what would happen to someone like me in the event of an emergency like that. It's similar to my feelings when I watched on TV, as the Hurricane Katrina disaster unfolded. In all honesty, it was clear to me that there's a good chance that I probably would not have survived.

I shudder with fear every time a huge snowstorm is predicted. In the event of a power failure, I cannot power my ventilator and I can't charge its back-up batteries. We do have a gas-powered generator, but in a prolonged power outage, what would happen when we ran out of fuel? The obvious answer is to throw all of my supplies in my van and drive to the nearest medical center. But what if roads are impassable? Or what if I couldn't even get out of my house, as in the case of a big snowstorm? You can try calling 911, but are they going to be able to rescue you when there's three feet of snow on the ground? Take me out of my wheelchair and I'm bedridden. And consider this -- I live with my family. What if I lived alone and depended on people to get me out of bed in the morning? Firefighters could knock on my door all day, but I wouldn't be able to get to the front door to alert them of my situation.

Natural disasters like the fires raging in California are difficult enough for people without disabilities. Having a disability is just an added challenge. However, in every tragedy, it seems that you can almost always count on the kindness of strangers. You read about it all the time when things like this happen. Without such assistance, people with disabilities, who might ordinarily be quite independent, may be less likely than other people to get through such a tragedy.

If anyone out there with a disability has survived a natural disaster, please feel free to share your story...

A Captive Audience

A Captive Audience

Oddly enough, when I talk, people actually listen to me. Well, unless I'm at the dinner table with my family! Today, I addressed a group of pulmonary nurses at Children's Hospital of Philadelphia (CHOP). Drawing upon my experiences as both a teenager and an adult, I talked about what it's like for someone like me to be hospitalized.

For example, at home, my environment has been adapted to my needs. In the hospital, there's not much that I can do for myself. I can't change the channel on the TV. I can't read anything because I can't hold a book or turn its pages. I can't feed myself. I feel bad asking the nurses for help with these things because I'm not their only patient and they have more important things to do than to find me something interesting to watch on TV.

Help using the bathroom isn't something I have a problem asking for, but there's nothing like having a full bladder and you have to wait for the nurse to arrive. As a result, I would drink as little as possible. However, eight hours later, they would want to catherize me because I had not urinated!

Even calling the nurse is an issue because I cannot physically push the nurse call button. At CHOP, they now have sip-and-puff devices that allow you to trigger the nurse call systems with your breath, so that does help -- unless, of course, the device slips out of the range of your mouth.

One of the nurses brought up the issue of positioning. For many of us, it can take a lot of time to get comfortable in bed. I know that I often need my head moved several times. The pillows supporting my legs need to be placed in exact position. It can be very frustrating for caregivers.

"But trust me," I told them, "We find it just as frustrating as you do!"

On the subject of positioning, I also talked about the fear that people like I have of being moved by nurses because many of us have contracted arms and legs. It's not just that my legs are locked in place; it hurts when they are moved too much. One wrong move and I could be injured.

But I think that the biggest message that I tried to get across was that when you are in the hospital, you tend to act differently than you would at home. I explained how I became a lot more emotional when I was in the hospital for two months. Things that ordinarily would not have bothered me did just that. I only wished the nurses and doctors could have known me outside of the hospital because they would have liked me!

During that hospitalization, I was an adult. So if it was bad for me then, just imagine what it's like for a child. One of my most vivid memories from my hospitalization at age 15, following spinal fusion surgery (other than being in pain), was one of the nurses wanting to give me a bath. I felt awful and the last thing I wanted to do was get washed. All I wanted was to be left alone and I was less than pleasant to deal with. At that moment, whether I smelled badly was hardly the first thing on my mind.

Not a fun experience, to say the least. Let's just say that I was much more pleasant today -- and I smelled a whole lot better, too!

All Flyered Up

All Flyered Up

With the Phillies' brief playoff run over and the Eagles' season seemingly in disarray, it's time for some Flyers hockey! After a dismal season last year, the team made some major upgrades and they figure to make the playoffs this year and hopefully do some real damage. Tonight, I had a chance to check them out in person, as they took on the Atlanta Thrashers at the Wachovia Center. See me all dressed for the occasion in my authentic Flyers jersey (which makes me look huge, by the way).

As you can see from the view in the picture here, my father and I had great seats. The players looked huge and the puck was easy enough to follow. The only problem I had was the frigid temperature inside the arena (it is home to an ice hockey team after all). My driving hand got so cold that by the end of the game, I could barely control my wheelchair -- even after putting my driving hand in a wool sock for most of the game.

The Wachovia Center is very wheelchair-friendly, though it wasn't always that way. Eleven years ago, when the building opened, wheelchair users like myself loved the view -- until we realized we could not see ANYTHING when people in front of us stood up at exciting points of the game. Simply amazing how such an error could be made in the construction of a facility costing hundreds of millions of dollars! A class action lawsuit followed, resulting in the installation of elevated platforms, accessible with use of lifts like the one pictured above.

I suppose all is well that ends well, as the sightlines for those of us in wheelchairs are now pretty spectacular. Good thing, too, because last night's game was definitely worth seeing, as the Orange and Black easily dispatched the winless Thrashers, 4-0.

LET'S GO FLYERS!!!

This Won't Hurt A Bit

This Won't Hurt A Bit

Unless you were the one getting stuck in the arm with a needle! That's right, folks, roll up your sleeves and say ouch: it's flu shot time! My doctor (in the photo) was kind enough to make a housecall today, as getting in and out of my van for something so quick is a bit of a hassle.

For those of us with Duchenne's, getting an annual influenza vaccine is a must. Getting the flu could lead to life-threatening pneumonia because the muscles we use to breathe are too weak to cough up secretions (mucus). I have never developed pneumonia (knock on wood), thanks in part to the flu shot and also because my doctor is quick to prescribe antibiotics when I get a cold. Antibiotics won't cure a cold, but can prevent a secondary infection that could lead to pneumonia.

The shot didn't really hurt today (thanks, doc), but I know I'll get the usual aches later from the vaccine. Certainly better than getting the flu, though. The only thing I had to remember was to get the shot in my right arm. I used to be concerned that would impact my ability to drive my wheelchair (it doesn't). However, getting the shot in the left arm is worse because I get rolled onto my left side when I'm in bed.

Anyway, get your flu shots, people. And don't even think of poking me in the arm, or you'll get a sore foot, too!

The Few. The Proud. Me?

The Few. The Proud. Me?

From the department of they said I'd never do it...

After receiving a brochure in the mail yesterday from the U.S. Marines Corps, I figured what the hell and headed for a local recruitment office this afternoon, nurse in tow.

Though the office was not wheelchair accessible, a staff sergeant was kind enough to come outside and chat with me. Turns out that I won't be a marine anytime soon, as you can't be older than 28 to enlist. Well, that and the fact that there's no way I'd ever pass the required physical examination!

As I was talking to the sergeant, who had been wounded in combat in Iraq, an officer fully clad in marine attire walked outside. My nurse pointed at me and joked, "He's going to sign up!"

My face turned a shade of crimson.

"Great," he said with a wide smile, "There's a bus leaving in an hour!"

All joking aside, I thought it would be a perfect opportunity to find out what someone like myself can do to support the troops. Say what you want about the war in Iraq, but you have to respect the courage and determination of the men and women serving in that country. Unfortunately, some of them are returning home with serious injuries. I have always felt that those who suddenly become disabled have it a lot more difficult than those of us who have grown up with disabilities.

Still, I have been able to live a productive life despite a serious disability and I hope to be able to share that message with soldiers who are recovering from serious injuries and may be wondering what sort of opportunities exist. To that end, I offered my assistance and provided the sergeant with my contact information. We'll see what happens, so stay tuned.

I didn't get on that bus today and might not be able to serve my country in the way described in the brochure, but I can't think of a better way to serve than to help those who have risked their lives.

If anyone reading this wants to offer his or her assistance as well, please let me know and I will be happy to share any information that I learn.

Breaking Bread, Burmese Style

Breaking Bread, Burmese Style

Winheld's World has become exotic lately -- well, at least when it comes to trying different foods. Tonight, I had dinner at a Burmese restaurant in Philadelphia's Chinatown district. Rather fitting in light of the current situation in Myanmar (Burma's official name). What better way to show solidarity with the Burmese people than to sample their cuisine.

I liked this restaurant from the second I rolled up the perfectly accessible ramp leading to its entrance. Inside, the hostess seated us at a table that was easy for me to get to, without my having to ask other people to move so I could get by. Even better, she pulled the chair away from the left side of the table -- as if she knew that I like the person feeding me to sit to my right!

The food certainly didn't disappoint, either. My favorite was the Banana Leaf Fish (pictured above). I figured that instead of another photo of yours truly, I would show the food I ate. Sorry if this makes you hungry!

The Northern Burma Fried Noodles (left) and the Jungle Chicken (below) were very tasty, too. We also had the Thousand Layer Bread with Curry Chicken Dip, as well as the Calamari Ala Burma Salad, but my dining companions and I were so hungry that we forgot to take a picture of those items beforehand!

A great time was had by all, which made it a bit easier to digest the Phillies' playoff elimination. As we like to say in Philly, there's always next year...

Lifesaver

Lifesaver

If it weren't for my defibrillator, I might not be talking to you now -- or for much of the past month. At a routine check today of the device that has been implanted in my chest for 2 1/2 years, I learned that it may very well have saved my life a few weeks ago when my heart rhythm apparently became dangerously irregular.

I felt neither the irregular heartbeat nor the action that the defibrillator took to correct the problem. The defibrillator did not need to shock me, as it was fortunately able to "pace" me out of the dangerous rhythm. Without the device, the irregular rhythm could have been fatal.

Obviously, this is good news because it means that the device worked and that having it implanted was the right decision. On the other hand, it doesn't make me feel so good that that I had a problem that required the device to work. But my electrophysiologist and nurse practitioner assured me that having one episode like this does not necessarily mean that my condition is getting worse. Let's hope they're right!

In a previous entry, I wrote about what happens at my electrophysiology appointments. There is a picture of a device similar to the one in my chest, as well as the wand that is used to download information from it. What I didn't show was the machine to which the wand is connected. At left is a photo of said machine.

You can see the computer screen more closely in the picture below. Be sure to click on it for an enlarged version (nice editing job by one Winheld's World reader). At the top of the screen is an EKG reading at the time that the photo was taken. Below are some of the settings. At a heart rate of 165 bpm (beats per minute), the device is set to monitor or pace; at 185 bpm, it will pace; and at 200 bpm, it will shock me. If you look in the white box, "Last V-Tachy episode on 09-SEP-2007" which was when the device took action. ("V-Tachy" is an abbreviation for ventricular tachycardia, a fast arrhythmia)

The machine also prints out a report with more detailed information. As I have said many times before, it's really cool technology. I just wish my life didn't depend upon it. However, I'm feeling very thankful today that I have it!

NL East Champs!

NL East Champs!

The last time I was able to say that about the Phillies, it was 1993 and I was a sophomore in high school. But Winheld's World is full of excitement this evening as the Fightin' Phils have won the 2007 National League East division title!

I'll admit that I had my doubts on more than one occasion this season, but Phillies shortshop and MVP candidate Jimmy Rollins never did. His preseason declaration that the Phillies were "the team to beat" angered the New York Mets and their fans, but it turns out that he was right after all.

It sure has been a wild ride. Let's hope it continues...

Summer's Last Hurrah?

Summer's Last Hurrah?

With today's weather more befitting of summer than fall, it was the perfect opportunity to get out on the Schuylkill River Trail once again. Pictured at left is Philadelphia's famed Boathouse Row (photo courtesy of Frank, my nurse/photographer). This time, I played tour guide for my friend Kimi (pictured below). With two wheelchairs, it required some extra coordination to avoid bicyclists. "You go first," we took turns saying to each other as they approached, full speed ahead. We also had to make sure we drove slowly enough for the ambulatory members of our party (a.k.a our nurses)!

All in all, it was a perfect day. Gorgeous weather, nice scenery, and great company. Of course, the day was even better because those Fightin' Phils defeated the Atlanta Braves tonight. With the New York Mets' loss, that means the Phillies are now tied for first place in their division!

A Visit to the Kingdom

A Visit to the Kingdom

Every now and then, I need to escape from my world, and tonight I certainly did that, as I attended a sneak preview "The Kingdom," starring Jamie Foxx, Chris Cooper, and the very lovely Jennifer Garner. The film follows an FBI team that travels to Saudi Arabia to investigate a brutal terrorist attack on a U.S. housing compound.

It's a truly gripping story, but what I found most interesting was the beginning of the film, which offers a video timeline of U.S. involvement in the Middle East. I didn't realize that oil wasn't discovered in Saudi Arabia until 1938. It emphasizes the sad fact that other than protecting Israel, our ONLY reason for caring about the Middle East is oil.

Though I usually go to the movies quite a bit, this was my first in a while. It was well worth it, although this theater had "stadium seating," which I despise. For wheelchair users, the seating areas are entirely too close to the screen. Some theaters, such as the one I was at tonight, have an elevator to go to the top, but you could practically get a nose bleed at that height!

Anyway, back to the movie. I highly recommend it because it truly makes you think. The last two lines of dialogue alone truly captured the essence of the fight against Islamic extremism. By the film's end, I was ready to return to my own, much safer, world. But with such extremism out there, how safe is it?

Stuck With Me

Stuck With Me

Well, for the next year or so, anyway, Caroline and Jin, first year students at the University of Pennsylvania School of Medicine, will be. Lucky them!

As participants in the LEAPP (Longitudinal Experience to Appreciated Patient Perspectives) Program, a required part of their curriculum, the students will keep in regular contact with me. They will visit with me at home at least once, go to some of my doctor appointments (I have plenty of those), and even see me in the hospital if I spend any time there, though I certainly hope I won't.

Course Director Dr. Paul Lanken, who addressed volunteers today, acknowledged that some doctors are obviously better from the technical side of things than they are at interacting with patients. But at Penn, he explained, the goal is for aspiring doctors to learn to truly empathize with patients.

So what do I get in return? Aside from knowing that I'm helping future doctors and patients, I get a captive audience that actually wants to listen to my inane wisdom and pathetic humor. Hey, I couldn't even PAY my own sisters to do that!

Welcome to Winheld's World, Caroline and Jin, and good luck with your studies...

A Fundamental Right

A Fundamental Right

I was dismayed by news today of President Bush's planned veto of legislation to expand a health insurance program for children whose families cannot afford private insurance.

Bush contends that expanding the Children's Health Insurance Program (CHIP) would be too costly and would extend government-covered insurance to children in families who can afford private coverage. Proponents, including a bipartisan majority in Congress say all they're doing is expanding coverage to more children who would not have been covered. Bush also argues that it sounds like a push for completely federalized health care.

Even if that were true, would that be such a bad thing? Certainly, all children deserve health insurance. It should have nothing to do with whether their parents can afford it; no child chooses his or her parents. But what about universal coverage for adults, too? I believe healthcare is a fundamental human right. Healthcare should have nothing to do with your income. Some people don't agree. To them, I say this: wait until you have a serious health issue and you'll understand.

Though it's not perfect in other countries that have it, I would like to see a single-payer system that eliminates insurance companies, but let's be practical -- the insurance industry would never allow it. If we need to include them in the solution, fine. However, the point is that everyone should be covered; I don't care how we go about it.

My medical situation may not be the norm, but if the federal government guaranteed health insurance, I'd like to think I'd be more likely to receive 24-hour nursing coverage, which would allow me to live on my own. I currently get 16 hours a day through my family's costly private insurance. A state waiver plan exists, but it doesn't reimburse nursing agencies as well. Do you think private insurance companies want to pay for eight more hours of care each day? No, and I can't blame them. My care is expensive. I feel that's where my government should step in.

Bottom line for me: until every American has health insurance I cannot say the United States is greatest country in the world.

No News Is Good News (I Guess)

No News Is Good News (I Guess)

Today I had a routine check-up with my cardiologist. Not unexpectedly, the doctor was pleased with how I'm doing. But somehow, that never makes me feel a whole lot better. The problem is that with Duchenne's, there seems to be no way to predict when things will take a turn for the worse. I want to be able to recognize the signs so we can at least try to do something before it's too late.

I communicated these thoughts to my doctor. While he can't give me the kind of answer I want -- such answers simply don't exist -- he offered some useful perspective. The two threats I face from a cardiac standpoint are fatal arrhythmias and heart failure. My pacemaker/defibrillator offers protection from the former and he has me on the right medications for the latter, which reduce workload on the heart, thus slowing down the rate at which heart muscle breaks down. We can look at things like energy level whether I wake up feeling short of breath as a signs of my condition. So far, so good. As the doctor reminded me, "You're not even supposed to be here."

And he's right -- things didn't look so good five years ago this month, when I first arrived at his office. But I'm still here. So, maybe the best answer is to get out there and live my life. It's what I've always tried to do. Why change that now? After all, I might be sticking around for a while. I'll certainly need to if I want to ever see a sports championship in Philadelphia!

Next appointment, I will have my annual echocardiogram, which will tell if there has been any change in my heart function. The date of that appointment? February 14th -- Valentine's Day. How appropriate!

Dream On

Dream On

For the better part of 15 years, Winheld's World (not the blog) has been passionate about sports, especially when it comes to the four major professional franchises that call Philadelphia home. For our international readers, that would be the Phillies (MLB), Eagles (NFL), 76ers (NBA), and Flyers (NHL). No matter what difficulties I have faced in life, I have always been able to turn to sports to not only to distract me, but to entertain, captivate -- and, yes, aggravate me! After all, a championship hasn't been won by a team from Philly in 24 years!

My passion is probably not what it once was. (How much heartbreak can one endure?) But yesterday, I stumbled across the above video clip on YouTube, a montage of the highs and (mostly) lows of Philly sports in recent decades, set to Aerosmith's "Dream On." I can't get enough of it, as it serves as a powerful reminder of how much I still love my sports, and how much I still want to see one of my teams win a championship.

Well, despite an exciting three-game sweep by the Phillies over the hated Mets in New York, that doesn't appear likely to happen anytime soon. But until then, I'll continue to watch -- and dream on...