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...

The Tradition Continues

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!

GI Josh

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!

Not So Super Market

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!

Guys' (and Girl's) Night Out

Guys' (and Girl's) Night Out

It was probably the hottest night of the year, but that didn't stop a family tradition.

Every year, in honor of my grandfather's birthday, the men in the family attend a Phillies game. The tradition started when he turned 70; this year, he turned 81 (his actual birthday was a couple of months ago). Normally, I bring a nurse, but this year, I decided just to have my father help me. Nothing against my nurses, but it was nice to be with just my family for a change. The extra ticket went to my now baseball-adoring sister, Amy.

Pictured above (from left) are my father; cousin, Benny; grandfather; me; Amy; and uncle, Steve. (Yes, I know there's some guy's head behind Uncle Steve, but he's not part of our family. At least not that I am aware!)

Of course, in typical Philadelphia fashion, the Phillies failed to cooperate on this
night. But my father and I deserve some of the blame for that.

With the Phillies leading 2-0 halfway through the game, my father turned to me and said, "This guy's pitching great. He hasn't given up anything."

"Dad, stop it," I warned him, "They'll hear you."

Naturally, the next pitch ended up sailing over the fence for a homerun. Still 2-1, Phils, though.

My sin was worse.

"Don't walk people," I said out loud as Phillies relief pitcher Tom "Flash" Gordon ran a deep count to the first batter he faced in the eighth inning, "Make the guy hit the ball. Worst he'll do is tie the game."

And in a flash, that was exactly what happened: a game-tying homerun! My father just looked at me. It all spiraled downhill from there. Final score: 4-3, San Diego Padres.

But, hey, at least I was with my family, having fun. It's a good thing, too, because otherwise I may have jumped off the Walt Whitman Bridge, wheelchair and all, the way the Phillies played tonight!

Takin' the Trail to Town

Takin' the Trail to Town

With the sun shining after what seemed like an eternity of rain and unseasonably cold temperatures, it was time to get out of the house. Today's destination was the Schuylkill River Park, an extension of the trail on Kelly Drive (see my entry from 7/21), which runs along the Schuylkill River, starting at the Fairmount Waterworks and ending up alongside the western edge of Center City. Accompanied by my friend, Lauren (pictured to my right) and my nurse, Frank (he's quite a photographer), I took the trail into the city, ending up in Rittenhouse Square.

It's the pefect combination of nature and urban life. As I learned when I was a graduate student in urban studies a few years, parks like this have become increasingly popular in cities across the country, especially among young professionals.

While I miss my urban studies days, it is great to actually live what I learned. Of course, I'm not exactly a "young" professional anymore, but don't tell anyone!

What makes the trail so great is its easy access to Center City via the ramp that connects with both the Market and Chestnut Street bridges. (In the above picture, my friend and I are returning to the trail from Chestnut Street) Built in accordance with the standards of the Americans With Disabilities Act (ADA), the ramp is long (as you can see in the picture to the right), but therefore not too steep for wheelchair users. Being able to get into town, free of any transportation other than my wheelchair, is extremely liberating and makes the big city feel smaller and more approachable.

Now, if only the prices in the shops and restaurants were more approachable!

Chowing Down in Chinatown

Chowing Down in Chinatown

The last time I was in Philadelphia's Chinatown, I was a college freshman -- 11 years ago! Tonight seemed like a good time for me to return, along with friends Bekezela and Mike (pictured above) and my nurse du jour (taking the picture.

As usual, parking my high-top van in Center City proved a royal pain in the ass. We picked out a perfectly good handicap space, only to be told by the attendant to go to other side of the lot -- the equivalent of half a block away, where the pavement was broken up -- because there was "more room over there."

Fortunately, dinner proved worth the trip. I even got a bit adventurous in my old age, trying Lamb Hunan Style and Pineapple and Lychee Duck. I enjoyed both and had no trouble chewing either, always a concern when straying from my predominantly chicken and fish diet.

We decided to walk around after dinner, as I wanted to get a picture at the well-known Friendship Gate. Halfway up the block, a restaurant worker carted out a trash can full of foul-smelling water and dumped it all over the sidewalk. So we backtracked half a block and crossed at the corner (jaywalking isn't possible when you're in a wheelchair with curb cuts only at corners), proceeded up the block, only to be confronted with, you guessed it, another pool of fishy water! With no choice, I drove through it quickly. It's always an adventure, isn't it?

Fortunately, the only smell emanating from my wheelchair when I got home was that of the leftover egg rolls and sesame chicken. My father was only too happy to give me a hand with that!

Saturday Stroll

Saturday Stroll

It was one of those rare summer days in Philadelphia when it isn't oppressively hot and humid, so I took full advantage of the beautiful weather and went for a walk (roll) on the trail along Kelly Drive, one of my favorite places in Philly.

What's great about the drive is that you feel removed from the city, while the Center City skyline reminds you that you're still there. Note the nearly-completed Comcast Center, which will be the tallest building in in the city. I also enjoy the other "scenery" if you catch my drift! Hey, a guy can dream, right?

I try to get out on the Kelly Drive trail, as well as the nearby Schuylkill River Trail as often as I can during the warm weather months, provided I have a nurse who is willing to walk with me. I do have to be careful when out in the sun. Some of my medications make me more susceptible to the effects of the sun, so I try to keep as much of my body covered as possible and wear sunscreen. At the same time, I must stay hydrated in order avoid potential heart complications.

But as long as I'm careful, I enjoy the opportunity to get some fresh air, a little sun, and did I mention that other "scenery?"

PPMD Day 4: That's a Wrap

PPMD Day 4: That's a Wrap

Part 4 of Winheld's World coverage of Parent Project Muscular Dystrophy’s (PPMD) 2007 Annual Conference, July 12-15, in Philadelphia.

I couldn't wait to get back to the hotel for brunch this morning. Maybe it was because I wanted one last chance to trade war stories with my new friends. Maybe it's that Pat Furlong, PPMD founding president is a superb motivator (as has been noted by at least one other person). Or maybe I was just really hungry. Whatever the reason, I managed to drag myself out of bed at 7:30 a.m. -- practically unheard of for me! My father, who accompanied me today, said that now that I have demonstrated that I can get up so early, I have no excuse for usually getting up so late. So I might never live this one down.

But that's okay because today -- and the last three days, for that matter -- were well worth the early wake-up call. All I've ever wanted to do in my life is to make a difference and that's what PPMD and each and every one of the 480-some people from 14 countries who attended this year's conference are all about: making a difference. It's exciting to be a part of something like that.

Whether we are parents, patients, doctors, researchers, nurses, researchers, etc., we're not about to stand idly by and wait for something to happen. As my father said to me afterward, everyone involved in PPMD seem to have adopted the 1960s philosophy of "power to the people."

With such resolve, it's only a matter of time until the goal is achieved...

PPMD Day 3: My Turn

PPMD Day 3: My Turn

Part 3 of Winheld's World coverage of Parent Project Muscular Dystrophy’s (PPMD) 2007 Annual Conference, July 12-15, in Philadelphia.

When your child receives a diagnosis of Duchenne's, you feel desperate and want a solution to the problem NOW, not five, 10 years down the road. I know that's how my parents felt nearly 25 years ago. Nevertheless, I was a bit disturbed when one parent raised the question of why, if a drug shows promise very early on (say after as little as 28 days), parents shouldn't be able to give that drug to their children.

"Why should our children have to wait 10 years, when they're already in wheelchairs, to start a treatment when we could have already had them on it and prevented that from happening? What kind of life are we giving them?" was his basic argument.

I understand where the guy was coming from. Everyone wants a cure, but taking dangerous shortcuts is not the answer. As one doctor said in response, "I don't want to give your 6-year-old a drug that's going to kill him."

Now, it's also true that when/if a treatment becomes available, there are going to be risks and parents are going to have to make decisions, but at least there will have been years of study so such risks can be minimized.

I'm 29 and we all know the life expectancy of someone with DMD, but you don't see me jumping up and down (well, I wouldn't be able to anyway!) desperate for a cure. The reality is that it's probably not coming for me. Even so, I've been fortunate to live in this day and age. The previous generation of kids with the disease didn't get spinal fusion, they didn't get trachs or g-tubes, they didn't get ventilators or defibrillators.

If the next generation is 15 or 16 years old and in wheelchairs when a cure is found that will stop the respiratory and cardiac aspects of the disease, but does not reverse the damage that's already been done, that would be great. If all you have to deal with in life is being in a wheelchair, it's hardly the end of the world. We live in a world that is growing more accessible every day.

In a breakout session in the afternoon, Mary-Lou Weisman, author of Intensive Care: A Family Love Story, about her son Peter, who had Duchenne's, spoke about ways of dealing with social isolation that those with the disease often face. She spoke of various organizations/activities in which parents can involve their boys. I certainly agreed with that, but for me, it wasn't so much the organized activities, but rather the impromptu gatherings at friends' houses during my teenage years that I really missed. I suggested that parents consider purchasing portable ramps so that their children can get into their friends' homes.

The next breakout session featured yours truly, as part of an expert panel on adults with Duchenne/Becker, moderated by Pat Moeschen (right). Also on the panel were (from left), Jared Aronson, Jason Abramowitz, me; and Evan Stutman (back, right). We spoke about our various occupations and took questions. Someone asked how we learned about our diagnosis and whether we were scared about it. Someone else asked about how we reacted to the transition to a wheelchair. And then, so as not to embarrass anyone in the room, we had a question about sex! Unfortunately, time was up, so we dodged a bullet on that one. My only regret is that we didn't have more time for questions. Maybe next year.

Later in the evening, I returned to the hotel for the lavish Conference Dinner. Some nice speeches were given and some video clips were shown. But what was most interesting to me was the people at each table and their dedication. Just look the distance many in attendance traveled to be there. At my table alone, we had a researcher from Australia and a couple with sons with DMD from the Yukon Territory.

I was about to leave -- until I saw the incredible dessert that was being served. Let me see -- chocolate or traffic? Traffic or chocolate? Yeah, I think I made the right call!

PPMD Day 2: Getting to Know You

PPMD Day 2: Getting to Know You

Part 2 of Winheld's World coverage of Parent Project Muscular Dystrophy’s (PPMD) 2007 Annual Conference, July 12-15, in Philadelphia.

A conference like this serves as a wonderful networking opportunity within the Duchenne's "community" -- doctors, researchers, nurses, physical and occupational therapists, respiratory therapists, genetic counselors, government officials, parents, patients; the list goes on and on. I met so many people today just outside of the conference today that I barely had five minutes to listen to any of the presentations inside!

Among those that I met today were: a 34-year-old middle school music teacher with Becker muscular dystrophy from New Hampshire and his mother; the parents of a young son with Duchenne's from Massachusetts who started a research foundation called Charley's Fund; a doctor from Pittsburgh; the coordinators of a project on Duchenne interventions from the Centers for Disease Control (CDC) in Atlanta, and a researcher from as far away as the University of Western Australia. I even met two people from Columbia University who already knew me from my TV appearance back in February!

I got to hear about everyone's various Duchenne-related activities. I, on the other hand, charmed everyone with my sparkling personality and smashing good looks (well, at least the first part was true) and regaled them the story of my near-death experience on the train yesterday.

It made for a hilarious story today. Let me assure you that I didn't find it so funny yesterday. I had no problems today, but tomorrow is a new day, so cross your fingers for me...

PPMD Day 1: Part of the Family

PPMD Day 1: Part of the Family

Part 1 of Winheld's World coverage of Parent Project Muscular Dystrophy’s (PPMD) 2007 Annual Conference, July 12-15, in Philadelphia.

It's a family that no one chooses to join, but when your child is diagnosed with Duchenne or Becker (considered a less severe form of Duchenne) muscular dystrophy, you automatically become a part of it. That was one of PPMD Founding President Pat Furlong's key messages in her opening address on this, the first day of the conference. Pictured (at left) are me and Frank, my nurse.

It was a message that certainly resonated with me. For years, I tried to ignore that "family." I didn't want to be a part of it at all; I just wanted to live my life. But you can't leave this family (just like the mafia). Sooner or later, it pulls you back in! For me, it was all of the medical stuff I've been through in the past five years that brought me back. It made me realize just how fortunate I am to be here and that I should use my good fortune to make life better for others with my disease.

Honestly, a lot of what was covered today was over my head, but I'm supposed to be an intelligent person (though that is debatable), so I gave it my best effort to follow the proceedings. One thing I did understand was the excellent analogy offered by Dr. Steve Wilton of the University of Western Australia (gotta love that Aussie accent) presented an analogy, likening the lack or shortage of the dystrophin protein in the muscles of someone with Duchenne's or Becker, to a tractor with a faulty shock absorber. As the doctor explained, the tractor might work for a little while with the bad shock absorber, but eventually it will break down. But how do you do remedy the problem? Do you try, for example, to repair the shock absorber? Do you try to replace it with something else? This is the dilemma that scientists face in their quest for a cure.

Dr. Richard Finkel of Children's Hospital of Philadelphia (who also happens to be my neurologist) spoke about how doctors prove the benefit of a potential treatment. For example, walking 30 feet in a given amount of time may not mean much in one's daily life. But if a treatment improves a child's ability to accomplish that task, that may be one way of measuring that treatment's effectiveness.

One important point I took away from today is that researchers are not looking for a single treatment, as many people might think. That's because the genetic mutation in those with Duchenne's isn't the same from one person to the next. In some people, material is missing, whereas in others, the order is wrong. So there may be a need for four or five treatments, each tailored to certain portions of the Duchenne's population.

Last but not least on this day, I nearly killed myself (and my nurse) boarding the train on the way home! You see, getting into the passenger car requires me to make a sharp turn, while at the same time trying to get over the threshold. Well, as I made that turn, I must have turned too widely because I got stuck, dislodging my arm rest. Frank put down my bag and helped me get across the threshold. He then turned around to pick up the bag. At the same time, I inadvertently knocked the left arm rest into my right hand, throwing the wheelchair into reverse at full speed -- right out of the passenger car and into Frank! Then, as we tried to get me back in, the train started moving. It was quite embarrassing, to say the least. Better luck tomorrow...

On the Right Track

On the Right Track

Against the backdrop of the Pennsylvania legislature's current debate over funding for mass transit systems across the commonwealth, I took the train into Center City Philadelphia today for the first time since I was a toddler. A proponent of mass transit since my days as a graduate student in urban studies, I was never really able to put my mouth where my money was due to the fact that the train station nearest to my house was heretofore inaccessible. When I picked up a friend at the same station earlier this week, I saw that it had been made completely accessible. With a conference to attend downtown next week, I thought I would go on a trial run today. I'm glad I did.

The savings in cost alone made it well worth it, as parking my full-size van in town costs at least $20. Roundtrip tickets for me and my nurse on SEPTA's Regional Rail service were $6 a piece for travel during off-peak hours* (of course, fares increase on Monday). And don't forget the cost of gas these days -- which should make funding for mass transit a slam dunk, but the way. Aside from cost, my van has a raised roof, so I can't park in most garages.

Riding the train itself very simple and convenient. The train conductors were friendly and helpful. With the long base of my wheelchair, it was a bit difficult to make the turn into the passenger car, but I wasn't about to let that stop me. While riding, the swaying motion of the train had me slightly on edge, as I don't have much balance, but tightening my wheelchair's chest strap resolved the problem for the most part.

Once in town, there was no way I was going to pass up the opportunity to grab a bite to eat at historic Reading Terminal Market. Hey, I might be skinny, but I'm not stupid -- I never pass up a good meal if I can help it!

*SEPTA riders with disabilities can qualify for reduced fares by filling out an application. I plan to do that ASAP!

State of the Art, But Accessible?

State of the Art, But Accessible?

As I read about and watched all of the hoopla surrounding the release of the Apple iPhone (the mayor of Philadelphia was so excited that he camped out on the street to get one), I started to wonder, how would someone like myself be able to use the device independently? By the time many people with Duchenne's reach adulthood, they have no use of their hands.

A quick check of Apple's accessibility page shows that they have not ignored accessibility -- even with the iPhone. A TTY adapter is available for hearing impaired users and the device itself has a zoom feature for users who are visually impaired.

But how would you make such a device accessible for someone like me? I see the iPhone is capable of voice dialing, but can a call be initiated without first pushing a button (which I can't do)? Can a version of Dragon NaturallySpeaking or IBM ViaVoice be installed on the iPhone to allow menus to be navigated or e-mails and text messages to be written by voice?

I bring up the iPhone because it is in the news, but these same issues exist for other cell phones, PDAs, and the ever-popular BlackBerry. It's why a technology-savvy guy like yours truly has never sent a text message. Let's hope someone out there has a solution. Sure, it would be great for work, but what if I find that special someone? How would I text her? It's how romance works these days. Priorities, people!

Like Father, Like Son

Like Father, Like Son

My father and I were both losers today, as neither the slot machines nor the blackjack tables were kind to us as we spent Father's Day in Atlantic City. But we enjoyed a nice lunch and took a brief stroll on the boardwalk (photo of me taken by Dad). On the ride home, we even had the pleasure (or should I say, displeasure) of listening to the Phillies self-implode. Nevertheless, it was a fitting way to celebrate Father's Day.

It was the first time in quite a while that just my father and I took a roadtrip. In fact, since my tracheotomy five years ago, I have only been out a few times with just one of my parents. I go out plenty with my nurses and it has gotten to the point that I almost feel as if I can't go anywhere without a nurse. But the truth of the matter is that I should do this sort of thing more often. I need to get out there and live my life -- even when there's no nurse with me.

Just maybe next time Dad and I will keep our money in our pockets and go somewhere else. At least until next Father's Day...

"Dr. Death" Out of Jail

"Dr. Death" Out of Jail

I watched "60 Minutes" tonight and caught Mike Wallace's interview with Jack Kevorkian a.k.a. "Dr. Death," the retired pathologist and physician-assisted suicide advocate who had been just released from prison after serving part of a sentence for helping a 52-year-old man with ALS, Tom Youk, commit suicide.

I'm glad that Dr. Kevorkian has been released, as I see nothing wrong with what he did. A man with a terminal illness and of sound mind wanted to die and couldn't do it by himself.

I don't feel as if I'm suffering -- Duchenne's isn't a painful disease and I'm still able to be productive, so I would not want to end my life. But if I did, I feel that I should have that right -- even though I would physically be unable to do it myself.

Like Dr. Kevorkian, I would like to see physician-assisted suicide legalized for consenting adults. Safeguards should be in place so that someone who is depressed does not his/her a life. Doctors should be consulted because, as Dr. Kevorkian says in the interview, only they would know if a person is depressed.

One point raised by Wallace is that some other people with ALS have equated Dr. Kevorkian's helping Mr. Youk take his life to implying that they, too, should kill themselves. I couldn't disagree more. No one is saying their lives should be ended; one man with the disease said he'd prefer not to continue with his life. It was one man's decision and should be respected even by those who disagree.

Incidentally, a great film -- and true story -- on this issue is "The Sea Inside," about a paralyzed man who wants help to die. I didn't personally agree with his reasons for wanting to die, but I respected his right to do so. Who am I to decide whether his life was worth continuing?

Back to Dr. Kevorkian, The only thing I had a problem with was when he said in the interview that he admires those with ALS "who go on suffering without complaining and want to..." I doubt that everyone with ALS thinks he or she is suffering.

Still, even though Dr. Kevorkian, as a condition of his parole is not allowed to help people die, I sincerely hope he continues to advocate for physician-assisted suicide, as I suspect that a great many Americans support it, even if they're uncomfortable admitting it.

*(click here instead for text version)

Go West, Young Man!

Go West, Young Man!

Traveling cross-country in an RV is no small feat for most people, let alone a young man with Duchenne's.

But that's exactly what Darius Weems, a 15-year-old with DMD did two summers ago. Mr. Weems, who lost an older brother to the same disease, had never been away from his hometown of Athens, Georgia. With a group of college-age friends, he set out on for Los Angeles, hoping to raise awareness of Duchenne's and that MTV's "Pimp My Ride" show would customize his wheelchair.

His adventure is the subject of a documentary, "Darius Goes West: The Roll of His Life" (see trailer above), which has won wide acclaim at various film festivals across the country. As far as I am aware, the film has not been shown in the Philadelphia area yet, so I haven't seen it. If anyone reading this in another part of the country has seen it, please feel free to post your thoughts.

Darius Weems' journey just goes to show some of the great things that are possible to do even with Duchenne's, as long you are determined and have dedicated people around you who are willing to lend a helping hand. Those of us with DMD must make the most of a limited amount of time, and that's why his trip is so important. At the same time -- and I sometimes make this mistake myself -- there's really no way to predict how long any of us with this disease will be around, so I hope that this isn't the end of the great things that Darius Weems accomplishes in his life.

Good luck, Darius! May your life be filled with many more journeys...

In Enemy Territory

In Enemy Territory

To put it mildly, I dislike the New York Yankees. Maybe it's because they have an arrogant owner with such deep pockets that he can buy a championship (although they haven't actually won one since 2000). Maybe it's because I'm jealous of the fact that they've won 26 championships while my Philadelphia Phillies have won exactly one. Or maybe it's that I'm from Philadelphia and we hate all New York teams!

Nevertheless, I found myself at, of all places, Yankee Stadium today with my parents, my uncle, and my cousin (photo courtesy of Cousin Benny, by the way). With the stadium set to be torn down in a couple of years, I wanted to make my pilgrimage to the mecca of baseball -- home to legends like Ruth, Gehrig, DiMaggio, and Mantle. Getting there was a nightmare, with traffic on the George Washington Bridge so insane that it took an hour just to get across. Fortunately, New York's finest were very helpful in finding us a place to park my van. Still, we didn't get to our seats until the third inning.

Once I was settled in, though, I was glad that I had made the trek to the Bronx. To realize that I was at the same place where all of those great players and teams once competed, the place where all of those championships were won, was quite amazing. Despite the fact that the Yankees are actually in last place (not that I'm upset about that), the stadium was packed and the fans were loud. I sat there, imagining how much louder it must be there during the playoffs, how intimidating it must be for the opposition. No wonder there have been so many miraculous comebacks for the hometown team.

I had fun at the game, but I just couldn't bring myself to actually cheer for the Yankees. They're the enemy; you can't root for the enemy -- even in their own ballpark! Go Phillies!!!