Please click here to order your copy of Worth the Ride: My Journey with Duchenne Muscular Dystrophy. All proceeds go to Parent Project Muscular Dystrophy (PPMD)

Sunday, September 30, 2007

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...

Thursday, September 27, 2007

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!

Tuesday, September 25, 2007

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?

Monday, September 24, 2007

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...

Saturday, September 22, 2007

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.

Thursday, September 20, 2007

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!

Sunday, September 16, 2007

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...

Sunday, September 09, 2007

The Tradition Continues

Football is back! That means Sunday afternoons watching the Philadelphia Eagles with my father. As you can see, we were in mid-season form today for the Birds' season opener against the Green Bay Packers, clad in Eagles jerseys, Coronas in hand (as if actually drink beer), cheering for McNabb, Westbrook, Dawkins and the gang. Dad can't catch a break. Every time he buys a jersey with a player's name on the back, that player ends up being cut from the team (that would be Trotter this year)!

Growing up, I was never a sports fan, probably because I couldn't play. That was until I started watching Eagles games with my father 15 years ago. Soon, football became an addiction. Over the years, I've seen the lows -- losing to the hated Dallas Cownoys on game-ending botched field goal attempt -- and the highs -- winning the NFC championship game against the Atlanta Falcons.

Despite today's heartbreaking 16-13 loss to the Packers (we're used to this in Philly), this season looks to be a promising one for the Eagles. Could this be the year they win that elusive Super Bowl? It should be another wild ride. Let's just hope it doesn't test my defibrillator along the way!

Thursday, September 06, 2007

GI Josh

The less I need to see my gastroenterologist, the better (hey, those are his words), but every now and then, a follow-up is a good idea, and today was the day.
While Duchenne's primarily affects skeletal and cardiac muscles, it also involves smooth muscles such as those in the GI tract. I should know. Several years ago, it resulted in a serious constipation problem that caused me to stop eating and lose over 30 pounds. A few years ago, I developed acid reflux disease. But with medications, both issues are under control (knock on wood). The doctor was pleased and said he'd see me in nine months -- don't worry, I'm not pregnant!

With that, I decided to subject the ol' system to some spicy Mexican food at a nearby restaurant on the campus of the University of Pennsylvania (see picture of me across from the Quadrangle). Well, I sure felt old today, knowing that I'm nearly too old for most of the women I saw! And while the spicy food sat well with my stomach, that certainly did not!

Sunday, September 02, 2007

Not So Super Market

When it comes to food, they say that cooking is an art, baking a science, and shopping a pain in the ass! Actually, I added that last one, but if you're in a wheelchair, you probably know what I mean.

In remembrance of the two year anniversary of the Hurricane Katrina disaster, I thought I would prepare one of my favorite New Orleans-inspired dishes: chicken and sausage gumbo. For inquiring minds, the recipe I use comes from the Food Network's Rachael Ray. I know of at least one loyal Winheld's World reader who will disagree, but Ms. Ray can cook for me any day. Not only does she know her way around the kitchen, she's also very easy on the eyes! But I digress.

The particular supermarket where I shop is somewhat pricey, but it's usually not too crowded and the aisles are relatively wide. So much for all of that. When we got there, all of the accessible parking spaces, which have room for me to put down my lift, were taken. Because it was beautiful outside, we parked at the far end of the parking lot.

"No one's going to park next to us," I reasoned, "There are plenty of other spaces."

Naturally, when we came out of the store, some idiot had parked right next to us! As a result, we had to back out of the space and then load me into the van.

Inside the store, it wasn't a whole lot better. Driving through aisles was like playing dodgeball. People get in my way no matter what I do. And it's okay for people to stand in the middle of the aisle to look for items, but if I do that, I get the evil eye.

"Sorry," I say, moving aside, but I'm really not. I have every right to take my time, too.

Things got a little dicey over in the seafood department when a store employee pulling a hand-truck nearly walked backward into me! Most upsetting was that in avoiding hitting him, I missed the free samples being given out nearby!

But even if it was a pain at the store, it will all be worth it when I taste that gumbo. I'm already hungry!