Independence Day?

Independence Day?

It's Fourth of July, Independence Day, America's birthday today. Should be a joyous day -- parades, fireworks, hot dogs, hamburgers, family and friends, and Phillies baseball. But forgive me if I'm not quite feeling it.

America is one of the better, if not best, places to live in the world. I wouldn't be here without its first-rate medical care. I received an excellent education here. And I am grateful for the freedom to express myself as I am right now. But for people with disabilities, the promise of this great nation is not quite within in reach. As I write this entry, I am reminded of the great Frederick Douglass' Fourth of July speech, in which he praised the ideals upon which the nation was founded, while explaining that on this day, he could not celebrate while his fellow African-Americans were enslaved. I do not seek to compare having a disability to the cruelty of slavery, but I understand Douglass' sentiment.

In America today, people with disabilities are restricted in their ability to live independently due to lack of funding for care and inexpensive or subsidized accessible housing. Some of my compatriots are forced to live in nursing homes. Americans don't believe in handouts. Yet if people with severe disabilities like mine work, they are limited in what they can earn in order to keep from losing the nursing care that no private insurer would provide unless I were a multi-millionaire. Americans are taught as children the value of saving. And yet people with disabilities are allowed to save a pittance before they lose their benefits.

Don't get me wrong. There are much worse places I could be. I also have great hope for the future of people with disabilities in America. Just don't get bent out of shape if I'm feeling less than enthusiastic today.

Ready for Some Football?

Ready for Some Football?

While living with DMD isn't the end of the world, I hope that one day, there will be a cure for young boys diagnosed with DMD so their muscles work and they can walk -- or even play football with their friends.

Making that happen was the goal of today's Inaugural Tournament to Tackle Duchenne Muscular Dystrophy. Under blue skies in Philadelphia's Fairmount Park, seven co-ed teams competed in two-hand touch football. A portion of their egistration fees as well as money raised from food and raffle ticket sales will go to Parent Project Muscular Dystrophy. So far, it looks like we raised about $1,200! If you would like to add to that amount, please click here.

None of this would have been possible without the hard work of my childhood friends Sarah and Ken. We would like to thank the folks at Philadelphia Sport and Social Club for coordinating the tournament, all of our sponsors, and everyone who participated, volunteered, or attended.

See you next year!

Smokin' Hot!

Smokin' Hot!

Man, is it smokin' outside! With temperatures pushing 90 degrees here in Philadelphia over the past couple days, you'd never know it's only April. I'm not complaining, though. Due to some of my medications, I am always freezing. But not the past few days. Taking full advantage of this opportunity, I used some soon-to-be expired train tickets to head into Center City and sit in Rittenhouse Square, girl-watching and eating pizza. The next day, I decided to cruise in my chair along Kelly Drive, girl-watching again. Are you noticing a common theme here?

As for the cigarette, relax, it's only a tasteless joke -- my body is messed up enough from DMD that the last thing I'd ever do is smoke! Anyone who knows me knows I'm the most neurotic, overly cautious person who would never do anything remotely dangerous. But you have to admit, that photo would scare every teenager away from ever picking up a cigarette!

Okay, I'm going back outside -- not to poison myself, but to enjoy the sun's heat while it lasts...

In a Fog

In a Fog

It's a beautiful day, sunny and warm, but I feel like I'm in a fog. Ever since my cardiologist increased my beta-blocker a few weeks ago to further reduce the irregular heart rhythms I had been experiencing (despite an increase in the same medication only a few months ago), I have been exhausted. And by exhausted, I don't mean very tired; I mean practically unable to function. I wake up tired and it takes me all day until I feel like myself.

The good news is that my doctor believes that I will adjust to the medication increase and be less tired. I know I adjusted the last time we increased it. And that would be a good thing, as I'm going to need all the energy I can muster over the next few months, while I complete my master's thesis and do some traveling, among other activities.

The bad news is, of course, that my heart may be getting weaker and you need a heart to, well, live! Inevitably, the heart will weaken when you have DMD. Whether that's what is happening now, even my doctor can't know for sure. Yeah, that's scary and unsettling, but I have no choice except to live to the best of my ability. After all, I could be around for a while and it would be a shame to waste even a second. To quote that noted philosopher, Ferris Bueller, "Life moves pretty fast. You don't stop and look around once in a while, you could miss it."

Waiting Game

Waiting Game

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

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

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

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

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

31 Flavors

31 Flavors

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

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

Writing Feverishly

Writing Feverishly

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

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

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

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

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

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

Frost/Nixon

Frost/Nixon

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

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

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

Cousins, Part Deux

Cousins, Part Deux

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

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

Success!

Success!

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

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

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

Dream Team

Dream Team

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

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

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

To the Summit

To the Summit

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

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

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

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

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