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!!!

Take Me Out to the Ballgame

Take Me Out to the Ballgame

The baseball season's been underway for a month and a half, but I don't consider it official until I actually get out to the ballpark to see the Phillies for the first time.

Tonight was the night, and why not? With a game-time temperature of 80 degrees, low humidity, a comfortable breeze, and the first place Milwaukee Brewers in town, it was the perfect occasion for my season debut. Apparently, 41,000 other people had the same idea, too, perhaps because it was also Dollar Dog Night (hot dogs for $1) and College Night (lots of rowdy, drunk students).

I always enjoy a night (or day) at the ballpark. Citizens Bank Park, which opened in 2004, is extremely accessible. There are plenty of great places for fans in wheelchairs and their companions to sit, and when fans in front of such seating areas stand up to cheer, they don't block the view of those in wheelchairs. The stadium also has several family (unisex) restrooms, which makes it more convenient when I have a female nurse with me.

With accessibility concerns out of the way, it means less aggravation and more time eating, criticizing manager Charlie Manuel's moves, yelling at umpires, and oh yes, cheering for the Fightin' Phils!

Getting out to games at night is not the easiest thing for me. I must arrange for my nurse to come in later and leave later, which affects my mother's schedule. And then there is a big rush to get ready. I need to remember things like preparing my evening medications to take with me and changing my ventilator battery so that it doesn't die before I get home (Yes, it's always nice to be able to breathe; it really adds to the experience!)

In the end, though, it's always well worth it, especially when the Phillies win. I couldn't have scripted the ending any better tonight: two outs in the bottom of ninth, tie score, when catcher Carlos Ruiz hits a dramatic home run. Game over. Phils win!!!

Feeling Blue

Feeling Blue

Comedian Josh Blue (see video clip) shows that there's nothing wrong with laughing at yourself -- even if you have a disability. Blue, who won NBC's "Last Comic Standing" in 2006, has cerebral palsy, which he incorporates into his brand of humor. One of my nurses told me about him last year after he won the competition, so I checked out a few video clips and found them funny. When I saw in the newspaper that he was to perform nearby, I decided to find out if he was as funny in person.

Although I was exhausted from a busy day yesterday and hardly felt like getting ready to go out in the rainy weather, I was glad I did because Blue certainly didn't disappoint. The two other comics who preceded Blue on stage, Kristin Key and Michele Balan, were very funny as well. But Blue's act was high-energy from the start; the guy must have walked three miles with all the pacing he did back and forth, across the stage. His disability was a key component of his act, whether poking fun at his out-of-control right arm and its effect on everything from voting to hailing a cab or taking on condescending people with his signature phrase, "Hey, buddddy!"

I couldn't help but admire him for being able to laugh about his disability. I try my best to do the same and have incorporated bits of humor into my autobiography (unfortunately, no news to report about that), but it's not always easy.

It was definitely an enjoyable evening. My only concern was that my seat was so close to the speakers that I worried about my defibrillator, as being in close proximity to magnetic fields such as those produced by speakers can potentially render defibrillators temporarily inactive.* The last thing I needed was to have a problem in the middle of the show -- it would have been a real shocker! Okay, I guess I don't have a future in stand-up (or sit-down, for that matter) comedy, but I had to at least try to say something funny in this entry.

*A call to the nurse practitioner on Monday morning assured me that I was most likely sitting far enough away from the speakers, though she suggested that in the future, I might want to consider sitting a bit further away.

The Weakest Link

The Weakest Link

"If you look close enough, you'll find everyone has a weak spot."

That's a great line from "Fracture," starring Anthony Hopkins (excellent movie, by the way), but I think one could say the same thing about the wheelchair lift in my van. Its weak spot is the trip wire attached from van door to the lift, without which the lift will not operate (see picture). And to think that the ability of a piece of equipment strong enough to pick up a heavy motorized wheelchair all hinges upon one measly wire.

Well, the chickens came home to roost yesterday. Ready to grab some lunch after watching the aforementioned film -- no, Sir Anthony did not eat anyone, in case you were wondering -- my nurse and I were less than pleased to hear a loud "snap" when he opened the van door. Gulp!

"That's not good," we said at the same time.

Though I had several hours of power left on my ventilator battery as well as a cable to hook the ventilator to the van's cigarette lighter adapter, the goal was now to get me home. A few phone calls later and we learned how to use the lift's manual override. As we discovered, it has one speed: FAST! Let me tell you, I've never been happier to hit the ground. By the time we got home, I was so tired and hungry that I could have eaten someone!

For a relatively small sum, the folks at Accessible Vans and Mobility were able to fix the problem -- today (what a relief). They reattached the wire and added a spring that should have been there in the first place to relieve some of the tension on the wire.

But come to think of it, there are plenty of other weak spots in my life. You see, an existence such as mine is heavily dependent upon technology. The equipment that I use to move around, to get in my van, to operate my computer -- and even to breathe -- is so reliable that I sometimes take it for granted. But if any of these things fails, all that goes out the window -- and this life that I live becomes ever more complicated.

Of course, when that wire snapped yesterday, about the last thing that I was saying was how reliable the lift is. No, I think there were a few other words coming out of my mouth at that particular moment!

Back by Popular Demand

Back by Popular Demand

Seems I'm becoming quite the public speaker. Today and yesterday, I spoke to first-year medical students at the University of Pennsylvania School of Medicine, as part of their "Doctoring" course. The picture to the right is of me outside my house, just before leaving for one of the classes. The goal of the sessions was to help the students learn about treating patients with disabilities.

Though I would have been happy to answer any medical questions, I was glad that the discussion focused on what my day-to-day life is like instead of on the specifics of my disease because, as I told the students, people like me don't exist in a vacuum. I talked about some of my bad experiences with doctors, and also my positive experiences, which far outweigh the negative ones. And fittingly enough, the topic of people being uncomfortable around those with disabilities came up, which I had just addressed in my previous blog entry. I told the students not to worry so much about saying the right thing. Certainly, it is important to make one's best effort to address patients with disabilities properly, but at the end of the day, I can forgive mistakes like that if the doctor demonstrates to me that he or she really cares.

It was with a heavy heart that I spoke to students today, having first attended the funeral of my friend Eric, who had Duchenne's. Although we had not been close for many years, he was my first friend with the disease. We were the same age and first met almost 20 years ago, when we were both just becoming wheelchair-dependent. I thought it was so cool to know someone else going through the same things that I was.

I used to be able to tell myself that it wasn't going to happen to me (even though I knew the reality), but after losing four people I have known to this disease, it's not so easy to convince myself of that any more. Even so, I'm still here and I owe it to the guys who aren't to do something constructive with whatever time I do have. My book is not just for me, but for them as well. And every time I shout obscenities at the TV when the Phillies are losing for a change, it's for them, too!

A Word About Political Correctness

A Word About Political Correctness

In the aftermath of Don Imus' firing over offensive comments made regarding the Rutgers University women's basketball team, I have heard a number of people decry the radio host's dismissal as an example of the overly heightened atmosphere of political correctness that exists in our society. While it has become fashionable to criticize the concept of political correctness, I think that's a bit extreme.

People should always consider how the way they describe others affects them. If you're one of those people who asks, "How am I supposed to know what is offensive?" use some common sense.

That said, when it comes to disability (a topic on which I am obviously qualified to speak), I must say that some of the conventions of political correctness are a bit overdone. Even I don't follow some of them, so I really don't care much if others don't follow them.

For example, you're not supposed to call someone a "disabled person," but a "person with a disability." The logic, which is certainly understandable, is that you should focus on the person first, not his or her disability. Trust me, people will adopt such language, but they will still have no idea how to act around a person like me. I'd much rather have people treat me well than merely use the right language when they refer to me. It is well known that people are uncomfortable interacting with people like me to begin with. If I sit there and get so particular about what words people use to describe me, how is that going to make them feel any more comfortable?

At the same time, it's understandable why it's not nice to refer to someone as "wheelchair-bound" ("in a wheelchair" is appropriate). It has recently come to my attention that I should be referring to my muscular dystrophy as a "disorder," not a "disease." I'm not sure how I feel about that one. The idea behind it is that muscular dystrophy is definitely not a "virus" that makes a person "sick," which is what the word, "disease" implies. But I don't particularly like the word, "disorder" either. In my own writing, when I use the word "disease," it has no meaning to me. I'm simply using it as a point of reference in conveying my thoughts. That argument obviously doesn't fly when it comes to describing a person's race, religion, etc., but I'm only talking about political correctness as it pertains to disability.

I'm sure that there is no shortage of opinions out there on this subject, so let's hear them...

Genetically Speaking

Genetically Speaking

I had another speaking opportunity today, this time at Children's Hospital of Philadelphia, where I addressed graduate students in genetic counseling. The students had the, dare I say, "pleasure" of listening to me for a full hour!

My talk was complete with a sharp PowerPoint presentation (put together by one Winheld's World reader -- you know who you are) that illustrated me at various points in my life. There were cute pictures of me and my sisters in our younger days, graduation pictures from high school and college, and some scary looking pictures from when I had lost tons of weight prior to my tracheotomy. My favorite picture (at right) was the one of me at Halloween the first year I was in a wheelchair, when I dressed as a military tank!

As this was a class of genetic counseling students, I also touched on the issues of prenatal testing for Duchenne's and of pregnancy termination when a fetus is determined to have the disease. I told the students that while my life has been good and that I have been able to achieve plenty, if it is possible to prevent a child from being born with Duchenne's, I believe that should be done.

Certainly, I like the person I have become. However, I would trade it in a heartbeat for a "normal" life. And there is a huge physical, emotional, and financial burden placed on families raising a child with the disease. People can obviously deal with such concerns, but why go through all of this if you can avoid it in the first place?

The discussion lightened considerably when someone asked me what I didn't like about going to summer camp (the subject of one of the photos in my presentation). Yeah, something about group showers and using the toilet while your fellow camper is attempting the same feat on the adjacent throne didn't really do it for me.

But, hey, maybe that's just my personal preference!

Kickin' Around the Tires

Kickin' Around the Tires

About the only thing missing today was the new car smell, as I was fitted for a new motorized wheelchair. The price tag was certainly there, but fortunately it will be covered by insurance (not that that is cheap, either, but it certainly helps when paying for equipment as expensive as a luxury vehicle).

After looking at three particular models from various manufacturers and consulting with the physical therapist and medical equipment salesman, I decided to go with a mid-wheel drive chair by Invacare (pictured above), from its TDX series (Total Driving Experience -- being in a wheelchair is apparently now an "experience").

Though the measurements of my new chair will not change, the new chair should be a major improvement over the current one. With a battery for my ventilator incorporated into the design of the chair, the chair should not tip back when going over inclines.

It will definitely be a bit different to drive at first, as the fact that it is mid-wheel drive means it has six tires instead of the four to which I have been accustomed for nearly 20 years (I can't believe I've been in a wheelchair that long). When going up an incline, the chair uses the back four wheels; when going downhill, it will use the front four.

As the physical therapist told me, "You'll probably hate [the mid-wheel drive] for the first week, but then you'll really like it."

Apparently, the turning radius is not nearly as wide, so I should be able to navigate turns more easily. However, I'm sure that it will run over toes just as easily, so people better be nice to me -- or else!

The new chair will also be able to recline. Hopefully, that will make it possible for me to take a nap during the day when I get tired. I never do this now because it would mean getting out of my chair, into bed, and then back into my chair.

The most important component of this wheelchair, as with my current one, is the mini-joystick, which allows me to control the chair with the tip of my thumb. As I told the physical therapist and the salesman, I would be unable to drive my chair without such an innovation. I explained how, when I got my current chair with a mini joystick, driving became so effortless for me once again that I could not sit still, so to speak. When people ask me now why I'm constantly moving around, I tell them that I am "pacing!"

I was my usual humorous self throughout the process today. I got a good laugh when the salesman asked me if I were sure that I didn't want a color other than black.

"No sparkles or anything like that?" he asked.

Sparkles? I don't think so. Look, this is coming from a guy who once had a teal wheelchair frame when that color was popular and from the same guy who once had a fire engine red seat cushion. It's a wheelchair, for god sake! Trust me, having a really cool color isn't going to make being in a wheelchair any better. Being able to recline and drive really fast, well, that's a different story!

What's up Doc?

What's up Doc?

I had a housecall today from my childhood doctor (standing next to me), affectionately known as "Dr. Shep." Nearly 25 years ago, when my parents realized that my physical development seemed too slow, they took me to several doctors, none of whom recognized what was wrong.

That was until they took me to see Dr. Shep. A bell went off in his head and he was able to immediately diagnose me with muscular dystrophy.

Over the years, as I progressed from preschool to college, Dr. Shep provided a calming influence for my parents and me, never panicking, but also being proactive when necessary. A computer enthusiast, he also taught me all that there was to know about the Apple computer I owned back in the day.

Retired for several years now, Dr. Shep spends his time working at his computer and on his golf game. Like a fine wine, his stroke has improved with age, or so I've been told!

Winheld's World Rant of the Week

Winheld's World Rant of the Week

We interrupt our regularly scheduled programming to bring you the following Rant of the Week...

One of my doctors recently relocated to another location, and when I went there this week, I arrived to find a cramped parking lot that did not have any handicapped spaces. Now, my doctor was wonderful about everything and promised to have things straightened out by the next time I come for a checkup, but that's not the point.

The reason I bring this up is that it highlights a lack of accessibility, in of all places, the medical world. A few weeks ago, I visited another doctor's office about a week and a half after a snowstorm, to find that the curb cuts from the parking lot to the sidewalk had still not been shoveled. I had not dressed very warmly, so I was freezing by the time I went halfway around the block in my wheelchair in order to reach the sidewalk!

But many of the problems I have encountered occur once inside medical offices, where hallways are so narrow that I have to drive perfectly just to get inside an examining room. Fitting the doctor, my nurse, and me in the same room and being able to close the door requires all sorts of coordination. Kind of reminds me of the old "How many people can you fit inside a telephone booth?" experiment. (Anyone remember telephone booths?)

To be fair, the costs involved in renovating doctors offices are probably too high for individual doctors. But shouldn't there be a funding source for such projects? Maybe there is and I just don't know about it. Perhaps someone out there can shed some light on the subject.

Many times, hospitals aren't any better, unless you are in newly-constructed areas. Getting into the bathroom with your wheelchair is often impossible, and getting through doorways can be difficult. And then, if you try to get into bed using a Hoyer lift, as I do, the bottom of the bed is often too low to accommodate the lift.

I mean, come on people, if the places where people like me come for medical treatment are not accessible, how can we expect other kinds of places to be accessible? Medical care is a necessity; eating at a restaurant is not, but I've encountered far more accessible restaurants that I have medical facilities. What's wrong with this picture?

29 and Counting...

29 and Counting...

It's hard to believe it, but I turned 29 today! Yep, that means the end of my 20s is fast approaching. It seems like only yesterday that I turned 20.

My life has certainly changed since then. I am lucky to be alive, in light of some of the medical situations I have been through in recent years. On the other hand, it saddens me that my 20s are over and I haven't had the opportunity to do the kinds of things that most people get to do in their 20s, like moving out of my parents' house (although my father has offered me the supply shed out back, rent free!) or being in a relationship. It's not that these things can't happen in one's 30s, but the 20s to me represent vitality, youth, and the freedom to try new and exciting things and I cannot help but feel a bit cheated. And yet, I feel guilty for feeling this way because there are so many others with my disease who have not been as fortunate as I have to even be here.

Nevertheless, I celebrated my birthday with family, which took my mind off of things for a while. And I started thinking about what I want to accomplish in my 29th year. Maybe I don't have many years left, but I'm determined to make this one count. Hopefully, I'll find a publisher for my book. I'll go girl-watching -- I mean on long walks in Center City (I can't believe I just said that!) -- spend time with friends, and attend lots of baseball games. Hey, maybe I'll even see the Phillies win the World Series (I won't hold my breath on that one even if my ventilator would let me!)

And hopefully, next year at this time, I'll be writing about a 30th birthday bash the likes of which have never been seen!

He's Baaack!

He's Baaack!

Fame and fortune may come calling, but there's no place quite like Winheld's World! So when my nurse, Frank, (pictured with me outside the Philadelphia Museum of Art last fall) left for another job, it was only a matter of time before he returned. I mean, where else does the opportunity exist for a nurse to work for such a cool guy? (That would be me, by the way!)

Today was Frank's first day back, and while he will only be working for me on a limited basis, Winheld's World will be all the better for it. And, as it turns out, the day of the week that Frank will be with me happens to be the day of most of the Phillies Businesspersons' Specials. It's going to be a terrific summer, indeed!

Welcome back, my friend!

Home Alone (Sort Of)

Home Alone (Sort Of)

With my parents out of town this week, I've had the house to myself. Well, not completely. With nurses coming and going at seemingly all hours and our loud-mouthed dachshund, Zoe (pictured at right) on the prowl, it is rather impossible to ever be alone!

Because insurance only pays for 16 hours of nursing care per day, it is an expensive proposition whenever my parents go on vacation, as they must pay out-of-pocket for eight hours of nursing care for me each day. Although respite care hours are available to the parents of children with serious disabilities in Pennsylvania, there is no program of which I am aware when it comes to adults like me. But parents like mine deserve a break, too. (And trust me, while my parents are great, I also need a break from them every now and then!)

So far, I have enjoyed my "vacation." It has given me the opportunity to entertain friends and family -- and to see every possible photograph from my aunt's recent trip to Cambodia! And with the assistance of my nurses, I've had a chance to dabble in the kitchen. We haven't burned down the house yet, which is always a plus!

But all the fun comes to an end late tomorrow night, when my parents return. After they're done calming Zoe, maybe they'll say hello to me...

Heart of the Matter

Heart of the Matter

Winter is a difficult time of year for me. My body doesn't seem to respond well to the cold temperatures and I spend weeks at a time inside the house. (You know something's not quite right when I look forward to outings to the doctor) The way I feel physically, I spend more time thinking about my mortality.

But I got some encouraging news today from my cardiologist: my annual echocardiogram indicated that my heart function had not declined over the past year and may have even improved a tiny bit. I was surprised to hear that this is the case, but I'm not about to argue with good news.

The reality remains that I still have a weak heart and something fatal could always occur suddenly -- the doctor has told me more than once, "You'll be okay until you're not okay" And while my heart function may be better, my heart will inevitably continue to weaken. Still, the doctor also reminded me that I'm no longer in heart failure. He couldn't say that 4 1/2 years ago when I first rolled into his office with a heart function of nine percent.

With excellent medical care and lots of luck, we've managed to turn things around. I'll turn 29 soon. And that's all the evidence I need.

A Star is Born

A Star is Born

In case you missed my TV interviews today, here they are for your viewing pleasure, the first of which took place today in-studio, LIVE!

When TV calls, you had better be ready to answer the bell. Well, it did and I was!

My big plans for today included going to a copy center to order bound copies of my book manuscript and watching the my recently-taped interview air on TV.

That all changed a couple of hours before the interview was to air, when my mother received a phone call from the TV station, asking if I could get down to the studio in two hours for a LIVE interview! After my mother frantically tracked me down, she and my nurse rushed to get me ready. In record time, they got me in and out of the bathroom, dressed and shaved, washed my hair, and gave me my medicines. My father sped us to the studio. The traffic even seemed to cooperate!

With the excitement, there was no time to be nervous. Before I knew it, I was on stage being interviewed. Everything seemed to slow down and the words just came to me as I answered each question as if on cue.

It was a great experience and hopefully, it will generate some interest in my book. But it wouldn't have happened without some great people behind me. Thanks, guys!

SEE ME ON TV!!!

SEE ME ON TV!!!

CATCH MY INTERVIEW W/ NBC-10 MEDICAL REPORTER CHERIE BANK

TUESDAY (2/20) BETWEEN 4 & 5 PM, NBC-10 (Philadelphia)

For more details, please see entry from 2/13

(TV news is not an exact science, so this could change, but I have been told that this should happen...)

Blast From the Past

Blast From the Past

When researchers identified the gene responsible for Duchenne's in 1985, NBC 10 medical reporter Cherie Bank interviewed yours truly, then 7 1/2 years old and with missing teeth! I was filmed walking (with difficulty) down the stairs and playing the piano with delight, as Ms. Bank looked on.

Fast-forward more than 20 years and guess who came to interview me about my life -- and my book? None other than Cherie Bank (pictured above)!

With my piano-playing days long over (trust me, I was no virtuoso), I instead showed off my voice-activated computer and read aloud a segment of my book. Though not nearly as cute as I was back in '85, I still have the same smile and I'm just as talkative!

I'm not sure when the interview will air, but as soon as I know, I will post an announcement here. So please, stay tuned to Winheld's World...

Still Tickin'

Still Tickin'

Two years ago today, I had my pacemaker implanted. It was a time of great uncertainty in my life. Although the way my heart felt was scary, I was unsure whether I wanted to go forward with the procedure. I was not doing anything productive then, unless you count watching TV as productive! What was the point of going on?

But I decided to take a chance and I'm sure glad that I did. I started my job handling communications for an IT accessbility consulting firm and later that year, I began writing my autobiography. I've been busy ever since.

Who knows what the future holds? All I know is that I probably would not be here today without that tiny device in my chest.

Now it's time to find a publisher!!!

Social Insecurity, Part II

Social Insecurity, Part II

Winheld's World was not a very happy place this morning. The other day, I sent in the money I owed to Uncle Sam (see my post from 1/10/07) So I was less than pleased this morning to open my mail and find a letter from the Social Security Administration, telling me that my disability payments were being reduced because I had not paid them back.

But when I was first was notified that I owed money to the government, I was told that I had 60 days to respond before they cut my payments. When I called to find out why I had received this letter so soon, I had a riveting conversation with a Social Security representative -- we'll call him Pencil-Pushing Bureaucrat (PPB)-- the highlights of which follows:

Me: I've just sent my attorney the check to pay back what I owe to Social Security and he's going to send it in along with the form--
PPB: What form? Do you mean the appeal form?
Me: I'm not sure. I guess so.
PPB: If you're paying back the money, then why are you appealing?
Me: I'm not appealing, but I still have to fill out the form and send it with the check.
PPB: No you don't.
Me: Um, I'm looking at it right now. It has option to check to pay back the money.
PPB: You don't have to send in the form unless you're appealing. Who told you that?
Me: My attorney. Look, it's not like I would lie about something like this.
PPB: (with heavy sarcasm) Oh, then I'm the one that's lying! (hangs up)
Me: What the hell -- You #$%@&&!

Fortunately, I reached another representative on a subsequent phone call. She told me that it would probably take three to four weeks to process my check, so it would not be in time to stop them from temporarily reducing my payments. So much for 60 days!

And that, my friends, is your tax dollars at work. If you live outside of the U.S. and are reading this, I can only hope you don't have to deal with such ridiculous bureaucracy.

Rejected...Not Dejected

Rejected...Not Dejected

Well, it was bound to happen sooner or later. I received the first rejection of my still untitled (a little help here please, folks?) book from a local publisher. They did not even want to look at my manuscript. It was surprising only in the sense that this particular publisher has put out several books on topics very similar to mine.

But I was actually somewhat happy! The first rejection is out of the way. And you know what? It wasn't so bad. As one of my friends put it, "Now you are a true author!"

There are plenty of other fish in the ocean, although the ocean seems to be controlled by three or four major conglomerates. I just need to find the right fish, er, publisher. It won't be easy, and it may take a while, but I'm confident that my book is at least worthy of a look by potential publishers.

I'll just need to have my nurse cross my fingers for me. Still, it's hard for me to wait, considering the life expectancy issue staring me in the face. So I'm pulling out all the stops, trying every possible contact. I have at least one promising lead so far.

In the meantime, please keep your fingers crossed, too. And if you have any contacts in the publishing world -- even if it's the friend of a friend of a friend's second cousin one removed's daughter -- please let me know. Title suggestions would also be great...

Meeting of the Minds

Meeting of the Minds

After years of receiving invitations and being unable to attend due to scheduling conflicts, the stars finally aligned and I was able to make it to the quarterly advisory luncheon held by my attendant care services provider, the Jewish Employment Vocational Services (JEVS).

Pictured next to me are (from left) Ann Doloff, of the Pennsylvania Initiative for Assistive Technology (PIAT); Barbara Cohen, Attendant Care Advisory Committee Chairperson; and my attendant, Monica.

In addition to brief presentations by various program administrators, Ms. Doloff, the invited guest speaker, spoke to us about PIAT's lending library, which provides people with disabilities the opportunity to borrow and evaluate assistive technology items -- special telephones, mouse devices for the computer, page-turners, adaptive software, etc.

I have been a "consumer" of attendant care services for over 10 years now (I have written about the joys and horrors of attendant care in my autobiography). These services are a vital part of my daily life. Although I require skilled nursing care, insurance only pays for 16 hours of nursing per day. My attendants help to fill the gaps in my nursing coverage so I don't have to depend on my parents as much.

They help me with very important tasks such as getting in and out of bed, bathing, and toileting. Many of my attendants have been certified nursing assistants (CNAs), but friends, neighbors, relatives, or students can be paid as attendants. The particular program in which I'm enrolled through JEVS is free of charge, funded by the Commonwealth of Pennsylvania.

The luncheon was informative and gave me the opportunity to meet some other consumers and attendants, as well as administrators whose names I recognized from attendant care program correspondence over the years, but whom I had never met before. It was a lot more pleasant of an experience than the 20° weather outside. The grilled salmon and roasted potatoes also helped!

If the calendar gods cooperate, I plan to attend future luncheons. Hopefully, they won't fall on the coldest day of the year, like today.

An Intimate Decision

An Intimate Decision

When I launched my blog in September, my goal was to talk about life with the disease, leaving no topic untouched, regardless of how uncomfortable it might be. So there was no way that I could ignore an article I found describing how Nick Wallis (left), a 22-year-old with Duchenne's living in the UK, hired a prostitute so that he could experience sexual intercourse before he dies.

An interesting note to the story is the fact that the encounter was arranged with the support of Sister Frances Dominica, a nun who runs Helen and Douglas House, a hospice facility for young adults, where Mr. Wallis often spends time.

Mr. Wallis, who wrote, in his own words, that he had always hoped that sex "would be just one part of a close relationship," had come to the conclusion that it was unlikely to happen. While he described the experience as "satisfactory," and was glad to have had the "tenacity" to go through with it, he also characterized it as "emotionally unfulfilling."

And that is why I would not consider something like this. I already know that I would feel the same way because I know how I am wired. Sex, in and of itself, has little meaning to me. Like Mr. Wallis, I have always wanted to be in a true relationship. It is highly unlikely that will ever happen for me, but that's how life goes. You don't always get to achieve all of your goals.

But sex is not going to fulfill this desire. With the slim probability that I will be in a relationship, I have chosen to pour my energy into my work, into writing my book and making a difference for those whose lives are affected by Duchenne's.

That said, I have great respect for Mr. Wallis' decision. This was something he wanted to do -- something he had every right to do -- and he did it. I don't see any reason why paying for sex is illegal; it harms no one (unless we're talking about sexual slavery). All parties involved do so of their own volition. Furthermore, it is commendable that he has publicly discussed his decision because it raises the subject of sexuality and disability, which is not addressed nearly enough.

Bloggers, such as The English Courtesan, have expressed their support for Mr. Wallis, while others, such as Pastor Tom have been critical. While the pastor may have a point about the "idolatry" of sex in our society, why should Mr. Wallis, by virtue of his disease, be denied the opportunity to do something that everyone else can do? What Sister Frances did to support Mr. Wallis (read her explanation here) demonstrates that she has a true understanding of her role as a clergy member.

Nick Wallis' decision is not the same as mine. But time and time again, I would defend his right to make that decision.

In Search of a Title

In Search of a Title

Wow! I can't believe it has been almost a month since my last post. Over the last few weeks, I've been busy revising my autobiography. Late last Wednesday night, I finally finished! The only thing missing is a title. You would think that if I was creative enough to write a 200+ page book, I could think of a few lousy words to stick on the cover. No such luck.

Nevertheless, things are getting pretty exciting. Right now, the goal is to generate some publicity for my book in order to interest publishers in taking on my project. A television appearance is in the works. I will post an announcement to Winheld's World when that happens.

Writing this book has been such a long journey. People have told me that 14 months is actually pretty good, but I thought I would have been done six months ago! Still, I'm very satisfied that I set out to undertake a project of this magnitude and I finished it. Whether it's worthy of publication, I have no way of knowing. I just hope that if a company decides to publish it, I'll be here to see that day. There's a much better chance that I will see that day before I will ever see a Philadelphia sports team win the championship!

But the book is not about me. Sure, I wrote it and I will take the credit for it. I'll enjoy all the attention it brings me. At the end of day, however, I hope that it makes a difference for other people with Duchenne's. I want to tell "our" story because it is a story that needs to be told. Life with the disease is hardly ideal -- no one would choose to live like this -- but it can still be good.

I have had my doubts about that from time to time. But here I am, about to do something very special. So while it is absolutely freezing outside, the local sports franchises stink, and my body sometimes feels like it's falling apart, life is good.

Any title suggestions? Bring 'em on...

Social Insecurity

Social Insecurity

Happy New Year, folks! This is my first post of the year, a year in which I hope to build a following for Winheld's World. So please, spread the word...

A rather innocuous looking letter arrived recently from the Social Security Administration, informing me that I owe a bundle of cash to Uncle Sam. Every three years, my case is reviewed to make sure I still qualify (Yeah, I still have muscular dystrophy and yeah, there's still no cure) for disability benefits (SSI). Because I receive SSI, I qualify for medical assistance, which pays for attendant care as well as for the boatload of medications I take. As you might imagine, there's absolutely no way I could pay for these things on my own.

But in order to receive benefits, I am not allowed to have more than $2,000 in resources, such as bank accounts or stocks. As it turned out, I exceeded that limit for many of the past 36 months. After signing up to receive my SSI checks by direct deposit, I neglected to keep an eye on the amount of money in the account at any one time. I cannot hold a checkbook in my hands, so I really could not keep up with things. Now that I bank online (see my entry from 9/12/06), the situation is a bit different.

I'm obviously going to have to accept the consequences of my actions. I broke the rules and now I have to pay. But that doesn't make the rules fair. Why should people receiving SSI be limited to just $2,000 in resources? What if I want to save for a rainy day? I thought that saving was supposed to be a good thing. I like to keep some money around in case the wheelchair lift in my van breaks down or the van itself needs to be repaired. I also like to have the funds available in case I need to buy some adaptive equipment that isn't covered by insurance.

It's not as though the extra money in my account is the government's money. It's my own personal savings, accumulated before I started receiving SSI. The SSI checks that I receive each month are spent by the end of the month, used to pay my bills. Although I live with my parents, I still contribute to household expenses. It's the least I can do.

This is certainly not the way I hoped to start off the new year, but I'm not about to let it get me down. I've got better things to do, like getting my book published...

A Family Affair

A Family Affair

When my nurse suddenly called out sick last night, the nursing agency had no one to send instead. It was extremely last minute. Plus, it was Christmas Eve and few nurses were available to work in the first place.

That meant that my mother had to stay up while I slept, in case my ventilator malfunctioned or its tubes came loose. Because a humidifier is connected to ventilator tubing, water droplets collect in the tubing. So the water must be emptied every hour. I also need medications at the end of the shift. They need to be mixed up and put into my feeding tube.

The most difficult part for anyone taking care of me overnight is obviously staying awake. Fortunately, my two sisters volunteered to keep my mother company throughout the night. I've never wanted my disease to affect my sisters any more than it had to, but I was really touched by their willingness to help.

I obviously prefer to have my nurses take care of me. They're more familiar with my routine, from medications to how I like to be positioned in my bed. But I appreciated how my family pulled together at a time like this.

Out with the Old, In with the New (Part II)

Out with the Old, In with the New (Part II)

I had my trach (tracheostomy) tube changed last night. Unlike my g-tube changes (see post from 10/5/06), trach changes can be done at home, as I lay in bed. Typically, I have it changed every other week. It is easiest to do with two people, usually my mother and a nurse. One person pulls out the old trach and the other person inserts the new one. I have had my tracheostomy (hole in my trachea) for four years, so there is less of a rush to get the new tube in before the hole starts to close, but the tube should be inserted quickly.

Once the new tube is in, the velcro ties are attached and a gauze pad is placed around the trach. (above, right). An adapter (the blue piece seen in the picture) is also connected; my ventilator tubing is hooked to the bottom, while the top (clear part)can be opened for suctioning.

The curved tube (above, left)is 6.5 mm in diameter and about 9 cm long and has a "cuff" or balloon that can be inflated with water by connecting a syringe to the piece with the thin tube attached to the trach, to ensure the maximum amount of air reaches my lungs without escaping through my nose and mouth.

However, I never fully inflate the cuff because if I do, air cannot reach my vocal cords and I am unable to speak. (Imagine me speechless!)

During the day, I keep the cuff fully deflated. At night, I inflate it partially so I am still able to call my nurse when I need assistance.

Changing the trach doesn't hurt as long as the new tube has enough lubricant on it (a little K-Y jelly does the trick). However, changing it tends to stimulate the trachea to produce more secretions (mucus), so I usually need more suctioning afterward.

The Interrogation

The Interrogation

Don't worry, I'm not suspected of a federal crime or anything like that. But I did have my pacemaker "interrogated" at a routine visit today to the electrophysiologist (cardiologist specializing in heart rhythm problems), meaning that information was downloaded from the memory of the device implanted in my chest.

My pacemaker, made by Guidant, is similar to the one pictured to the right and is about 1 centimeter thick and about the size of a doorknob, so it's really quite small. However, the left side of my chest, where it is implanted, does look bigger than the right side (in case any of you ladies out there were wondering why I only have half of a studly chest!)

Actually called an ICD (implantable cardioverter defibrillator), the device is not only capable of "pacing" my heart back into a normal rhythm, but can deliver a shock if pacing doesn't work. Pacing doesn't hurt, but I've been told a shock feels like a swift kick in the chest (hasn't happened to me so far). The ICD also constantly monitors my heart and records any unusual rhythms, even if it takes no action.

To download that information, a magnetic "wand" (left) is placed on my chest, directly over the device. The wand is connected to a laptop computer-like machine that prints a lengthy report. The process is completely painless, although I hate one of the tests that the machine performs because it briefly increases my heart rate. It feels like being in an elevator that is going down.

The report downloaded today was a good one. Over the previous three months, the ICD recorded one dangerous rhythm that lasted about a second, but it resolved on its own.

While people with Duchenne's are susceptible to fatal arrhythmias (irregular heart rhythms), I don't know anyone else with an ICD. It's a relatively new phenomenon. My ICD cannot stop the breakdown of cardiac muscle due to my disease, but it gives me a shot at surviving a sudden dangerous abnormal rhythm.

It's a chance I'll take, and that should come as no "shock" to anyone who knows me.