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...