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

Monday, December 31, 2007

Steppin' Out on New Year's


Year after year, I have spent New Year's Eve bored and depressed, watching the Flyers or 76ers on TV. But not this year. I actually went out on New Year's Eve for the first time in my life, spending a few hours at a Center City comedy club.

It took some extra effort to go out tonight. I had to alter my routine a bit and then go out in the cold. I had to pay expensive parking fees for my full-size van, as well as club admission for my nurse. This is an important consideration whenever I am out with my nurses -- do I pay for their admission because they are on the clock and it wasn't their decision to go somewhere? I have no set policy, but for more expensive tickets such as tonight's, I typically pay for my nurses.

While it all added up to be an expensive night out, I was grateful just to have a nurse willing to work on New Year's Eve. The show, which featured comedian Joe DeVito, was enjoyable and the club was very accommodating, even reserving a table for me so I didn't have to fight the crowds. All in all, it definitely beat staying home and being miserable.

Who knows what's in store for me in the coming year, but with complimentary tickets for a future show, one thing's certain: I will be making a return visit to the comedy club.

Monday, December 24, 2007

House Arrest


After years of speeding in my motorized wheelchair, the long arm of the law finally caught up with me today. Well, at least that's what I thought when I saw a uniformed police officer at the door. But it was just my friend and former attendant Maria -- now Officer Maria -- and instead of serving me with a search warrant, she served me and my family with a chocolate cake! She did slap a handcuff on my wheelchair, but only because my father insisted.

Though it's disappointing when I lose my best attendants, it's always good to hear when they're doing well. It was great to catch up on old times, but those stories weren't nearly as exciting as the ones about her time on the police force. After all, getting me out of bed and feeding me breakfast isn't half as exhilarating -- and dangerous -- as chasing the bad guys! Of course, Officer Maria might soon be chasing me if I don't stop speeding...

Saturday, December 22, 2007

We Are Family


Back in the day (which wasn't actually all that long ago) the kids table was always full with cousins from both sides of the family for holiday dinners at our house. Now that everyone is away at school or working far away, we never all get together. As the oldest cousin, I decided to change that this year and organized a cousins' lunch. The stars must have been aligned because we were all able to agree to meet today. For me personally, it meant a great deal. I plan on sticking around for a while, but my health situation is what it is. So I don't want to miss any opportunities to get together with everyone. I'd say it was great having no adults around, but we are all adults now--no kids table for us anymore!

Wednesday, December 19, 2007

Sign of the Times


It seems I've become quite popular as of late. As I mentioned in my entry following my hospital appointments last week, yours truly was interviewed by The New York Times, which was gathering information for a wide-ranging story on DMD that should appear within the next few weeks, from what I've been told. The story will focus on the improved quantity and quality of life for those with the disease, which was why they observed my appointment. Just the simple fact that older guys like me are even around today is indicative of how things have improved.

Today, as you can see from the photo, the Times' videographer came to my home to take a more in-depth look at a day in my life for the newspaper's website. And you just know I used this opportunity to promote my soon-to-be released book!

Stay tuned to Winheld's World for news about when the article and/or video will appear...

Thursday, December 13, 2007

Take a Deep Breath


I did a lot of that today at my visit to the pulmonologist today at The Children's Hospital of Philadelphia (CHOP). Pictured (from left) are Dr. Howard Panitch, my pulmonologist, and Dr. Jason Caboot, one of the pulmonary fellows. Though I was feeling less than energetic, the results of my pulmonary function tests (PFTs) were not as bad as I thought they would be, and were similar to my June results.

One thing I've been noticing in recent years is that with Duchenne's, we're all still learning. Doctors are now realizing that there are no hard and fast rules for treating this disease, as my pulmonologist explained. While some doctors feel that guys with DMD should eventually have tracheostomies, others believe that no one with DMD should have them and should instead receive non-invasive ventilation. Not necessarily so, Dr. Panitch said. Patient preference, among other factors, is now an important consideration. He went on to tell me about a guy in his mid-20s with DMD who opted to have his trach removed, and began using his ventilator through a sip attachment during the day and a mask at night.

Could I do that? Again, it's an individual thing. I believe that I was in such poor shape that I needed the trach when I got it. Even today, though, my cardiac status might make the trach a better option because I could exert myself less. Without a trach, on the other hand, I could be more independent, able to stay by myself for periods of time. Still, I do need assistance, and I would not qualify for enough help if I didn't have a trach, which entitles me to 16 hours of nursing care a day. I also wouldn't be able to talk as well without my trach because I'd need to take breaths from the vent through my mouth and wouldn't be able to directly suction secretions from my trachea if I had a cold.

It was a busy day, as I also had an appointment in CHOP's neuromuscular clinic, where I saw my neurologist as well as a nutritionist, geneticist, physical therapist, and social worker -- all while being observed and interviewed by a reporter and a videographer for The New York Times for a piece on DMD (Stay tuned). Camera or not, though, I was my usual funny self. When the nutritionist talked about the "textbook" way of doing something, I told her that I had "lost the textbook" and was not "planning on finding it anytime soon!" After all, just because it was a long day didn't mean I was about to lose my sense of humor.

Tuesday, December 11, 2007

Renaissance Man

Though I love my sports as much as the next guy, I enjoy some culture every now and then. So I decided to take a break from last-minute revisions to my book manuscript to check out the new Perelman Building (special thanks to Brad at phillyskyline.com, one of my favorite sites, for the photo) of the Philadelphia Museum of Art. Its collection, which includes may costumes and furniture, may be best descibed as eclectic. Very interesting, though I was able to better appreciate what I saw because I went with a friend who is an artist! For more photos, please click here

The building itself was impressive. Built in the 1920s, the Art Deco style building was originally home to Fidelity Mutual Insurance Company. However, getting into the place was interesting. At a wheelchair-accessible side doorway, we had to push an intercom button so a guard could bring down a lift. There was barely enough room for me and the guard. At least it was accessible. Because that wasn't the case when we tried to find a place to eat. But hey thats life in the big city, especially an older one like Philly. We did find a good pizza shop, though.

Now, back to editing my book...

Wednesday, November 28, 2007

Welcome Back




In what has become an annual tradition, I joined several pulmonologists from Children's Hospital of Philadelphia in addressing the second year students at the University of Pennsylvania School of Medicine, where I have seemingly become a regular speaker. In fact, some of today's students remembered me from my spring presentation, when they were in their first year of school. I might just have to change my material next year -- maybe I'll an outrageous foreign accent or something!

As usual, my favorite part of speaking to the students was answering their questions. As the work that I do involves assistive technology, I enjoyed answering the question I was asked about how I use my computer (voice recognition software and an infrared camera mouse). But I thought that the most interesting question I received was when someone asked me when I knew I would attend college and how that decision came about. That was easy. I always planned on going to college. My parents expected me to do so. Where I attended high school, it was practically unheard of not go to college. I saw myself as no different from anyone else. Plus, while I was in a motorized wheelchair, and I missed some time to have spinal fusion surgery, I was relatively healthy.

I would love to be as healthy and energetic as I was back then. Even so, I felt fortunate just to be here, doing what I do best: talk. Whether anything useful actually came out of my mouth, well, I'll let the students be the judge of that!

Sunday, November 25, 2007

Darius Goes... to Your Home


Several months ago, I wrote about "Darius Goes West," an uplifting documentary film (see trailer, at left) that follows the cross-country journey of Darius Weems, a then 15-year-old with Duchenne's, with the assistance of a group of loyal friends. You can ready my previous entry here.


Now, after screenings across the country, the film is coming to DVD, just in time for the holidays. To order a copy, please click here.

We all have a part to play in the fight against Duchenne muscular dystrophy, whether it's Darius with this film or me, with my book about my life with the disease. So, just as I will soon be asking you to purchase my book, I encourage you to purchase a copy of "Darius Goes West." Proceeds from its sales go to Charley's Fund, an organization started by the parents of young boy with DMD that is dedicated solely to funding a cure or treatment for the disease.

Thursday, November 22, 2007

Gobble, Gobble, Gobble!



Happy Thanksgiving, folks! For those in our worldwide audience who are unfamiliar with this holiday, you can read about its origins here, but Thanksgiving is essentially a time to give thanks for all that one has in life. As you can see from the picture above, Thanksgiving is also a time to celebrate with family and friends -- and to eat lots of turkey, stuffing, and mashed potatoes!

My life is hardly perfect (whose is?), but I have plenty to be thankful for this year. My health has remained stable. I have been fortunate enough to find a publisher for my book. I have a wonderful circle of friends, which has grown to include friends across the world, thanks to this blog. I have a loving family and a dedicated group of nurses and attendants to care for me.

And tonight, of course, I was thankful for a delicious Thanksgiving dinner. For more about the food that I ate, click here or here to visit Food Network Musings, where Sue (that's Aunt Sue to me) has posted photos of the dinner she prepared. By the end of the meal, I was also pretty thankful for my ventilator as I had eaten so much that I wouldn't have been able to breathe without it!

From Winheld's World to your world, wherever that may be, Happy Thanksgiving!

Thursday, November 08, 2007

PUBLISHER FOUND!!!

Yo, Adrian!




Sly Stallone I ain't, but like Rocky before me, there I was today at the top of the steps of the Philadelphia Museum of Art, arms raised (someone's arms, anyway) in triumph at the fact that two years after beginning the project of a lifetime, I officially signed an agreement with Little Treasure Books to publish my memoir, Worth the Ride: My Journey with Duchenne Muscular Dystrophy.

It has been a long road, with long hours, moments of self-doubt, and several bouts of writer's block, but with a tentative publication date of February, 2008, we're nearly there.

There are so many people who deserve credit for making this moment possible that I could practically write another book. To my friends, family, nurses, doctors, advisers, and to Winheld's World readers near and far, thank you for your support. I could not have done this without you. And to everyone out there who has ever been touched by DMD, our experiences may not be exactly the same, but this is your book, too. Together, we will create awareness of this disease, so that someday soon, a cure will be found and no family will ever have face it again.

Please continue to visit Winheld's World for all the latest updates...

Proceeds from book sales will go to Parent Project Muscular Dystrophy, which works "to improve the treatment, quality of life and long-term outlook for all individuals affected by Duchenne muscular dystrophy (DMD) through research, advocacy, education and compassion."

Wednesday, October 31, 2007

Trick or Treat!


Happy Halloween, everyone! Check out the picture of me and my sister, Amy, from Halloween way back in 1985, when I was seven years old. That year, our mother decided that we would not wear store-bought costumes and ordered the pattern for the Crayola Crayon costumes. I'd say they turned out pretty well!

Obviously, the photo is from my pre-wheelchair days. Unless you saw me walking, there wasn't a whole lot separating me from other children that age. It saddens me to know that today, there are still 7-year-old boys with missing teeth, who will eventually need motorized wheelchairs and all of the other things (tracheostomies, ventilators, feeding tubes, etc.) that I need to live. Fortunately, such technology exists. But wouldn't it be great if all of those little boys could grow up and never need any of that stuff? For their sake, I hope that day arrives soon.

Tuesday, October 30, 2007

A Pat on the Back


Congratulations go out to loyal Winheld's World reader and my friend Pat Moeschen, who was recently named Wal-Mart's 2007 New Hampshire Teacher of the Year.

I first met Pat, who has Becker muscular dystrophy (which is closely related to Duchenne's), at the Parent Project Muscular Dystrophy conference a few months ago and was impressed with his positive energy and can-do attitude. No doubt these qualities are what make Pat so successful as a band teacher at the Woodbury School in Salem, New Hampshire, where he teaches sixth through eighth grades. For most of us, those years are often very difficult. I'm sure his students, past and present, will attest to the fact that a teacher like Pat can make all the difference. As someone with a disability, I know that every day presents its challenges. My hat goes off to Pat for facing those challenges head on and with great success.

Congratulations, my friend!

Thursday, October 25, 2007

In Case of Fire


Under normal circumstances, today's world is pretty accessible for those of us with disabilities. But in a natural disaster or even just a really bad storm, all bets are off.

As I was watching coverage of the California wildfires yesterday, I saw an interview with a sign-language interpreter talking about the difficulty in making the deaf community aware of evacuations in the area. I got to thinking about what would happen to someone like me in the event of an emergency like that. It's similar to my feelings when I watched on TV, as the Hurricane Katrina disaster unfolded. In all honesty, it was clear to me that there's a good chance that I probably would not have survived.

I shudder with fear every time a huge snowstorm is predicted. In the event of a power failure, I cannot power my ventilator and I can't charge its back-up batteries. We do have a gas-powered generator, but in a prolonged power outage, what would happen when we ran out of fuel? The obvious answer is to throw all of my supplies in my van and drive to the nearest medical center. But what if roads are impassable? Or what if I couldn't even get out of my house, as in the case of a big snowstorm? You can try calling 911, but are they going to be able to rescue you when there's three feet of snow on the ground? Take me out of my wheelchair and I'm bedridden. And consider this -- I live with my family. What if I lived alone and depended on people to get me out of bed in the morning? Firefighters could knock on my door all day, but I wouldn't be able to get to the front door to alert them of my situation.

Natural disasters like the fires raging in California are difficult enough for people without disabilities. Having a disability is just an added challenge. However, in every tragedy, it seems that you can almost always count on the kindness of strangers. You read about it all the time when things like this happen. Without such assistance, people with disabilities, who might ordinarily be quite independent, may be less likely than other people to get through such a tragedy.

If anyone out there with a disability has survived a natural disaster, please feel free to share your story...

Wednesday, October 24, 2007

A Captive Audience


Oddly enough, when I talk, people actually listen to me. Well, unless I'm at the dinner table with my family! Today, I addressed a group of pulmonary nurses at Children's Hospital of Philadelphia (CHOP). Drawing upon my experiences as both a teenager and an adult, I talked about what it's like for someone like me to be hospitalized.

For example, at home, my environment has been adapted to my needs. In the hospital, there's not much that I can do for myself. I can't change the channel on the TV. I can't read anything because I can't hold a book or turn its pages. I can't feed myself. I feel bad asking the nurses for help with these things because I'm not their only patient and they have more important things to do than to find me something interesting to watch on TV.

Help using the bathroom isn't something I have a problem asking for, but there's nothing like having a full bladder and you have to wait for the nurse to arrive. As a result, I would drink as little as possible. However, eight hours later, they would want to catherize me because I had not urinated!

Even calling the nurse is an issue because I cannot physically push the nurse call button. At CHOP, they now have sip-and-puff devices that allow you to trigger the nurse call systems with your breath, so that does help -- unless, of course, the device slips out of the range of your mouth.

One of the nurses brought up the issue of positioning. For many of us, it can take a lot of time to get comfortable in bed. I know that I often need my head moved several times. The pillows supporting my legs need to be placed in exact position. It can be very frustrating for caregivers.

"But trust me," I told them, "We find it just as frustrating as you do!"

On the subject of positioning, I also talked about the fear that people like I have of being moved by nurses because many of us have contracted arms and legs. It's not just that my legs are locked in place; it hurts when they are moved too much. One wrong move and I could be injured.

But I think that the biggest message that I tried to get across was that when you are in the hospital, you tend to act differently than you would at home. I explained how I became a lot more emotional when I was in the hospital for two months. Things that ordinarily would not have bothered me did just that. I only wished the nurses and doctors could have known me outside of the hospital because they would have liked me!

During that hospitalization, I was an adult. So if it was bad for me then, just imagine what it's like for a child. One of my most vivid memories from my hospitalization at age 15, following spinal fusion surgery (other than being in pain), was one of the nurses wanting to give me a bath. I felt awful and the last thing I wanted to do was get washed. All I wanted was to be left alone and I was less than pleasant to deal with. At that moment, whether I smelled badly was hardly the first thing on my mind.

Not a fun experience, to say the least. Let's just say that I was much more pleasant today -- and I smelled a whole lot better, too!

Tuesday, October 16, 2007

All Flyered Up


With the Phillies' brief playoff run over and the Eagles' season seemingly in disarray, it's time for some Flyers hockey! After a dismal season last year, the team made some major upgrades and they figure to make the playoffs this year and hopefully do some real damage. Tonight, I had a chance to check them out in person, as they took on the Atlanta Thrashers at the Wachovia Center. See me all dressed for the occasion in my authentic Flyers jersey (which makes me look huge, by the way).

As you can see from the view in the picture here, my father and I had great seats. The players looked huge and the puck was easy enough to follow. The only problem I had was the frigid temperature inside the arena (it is home to an ice hockey team after all). My driving hand got so cold that by the end of the game, I could barely control my wheelchair -- even after putting my driving hand in a wool sock for most of the game.

The Wachovia Center is very wheelchair-friendly, though it wasn't always that way. Eleven years ago, when the building opened, wheelchair users like myself loved the view -- until we realized we could not see ANYTHING when people in front of us stood up at exciting points of the game. Simply amazing how such an error could be made in the construction of a facility costing hundreds of millions of dollars! A class action lawsuit followed, resulting in the installation of elevated platforms, accessible with use of lifts like the one pictured above.

I suppose all is well that ends well, as the sightlines for those of us in wheelchairs are now pretty spectacular. Good thing, too, because last night's game was definitely worth seeing, as the Orange and Black easily dispatched the winless Thrashers, 4-0.

LET'S GO FLYERS!!!

Friday, October 12, 2007

This Won't Hurt A Bit


Unless you were the one getting stuck in the arm with a needle! That's right, folks, roll up your sleeves and say ouch: it's flu shot time! My doctor (in the photo) was kind enough to make a housecall today, as getting in and out of my van for something so quick is a bit of a hassle.

For those of us with Duchenne's, getting an annual influenza vaccine is a must. Getting the flu could lead to life-threatening pneumonia because the muscles we use to breathe are too weak to cough up secretions (mucus). I have never developed pneumonia (knock on wood), thanks in part to the flu shot and also because my doctor is quick to prescribe antibiotics when I get a cold. Antibiotics won't cure a cold, but can prevent a secondary infection that could lead to pneumonia.

The shot didn't really hurt today (thanks, doc), but I know I'll get the usual aches later from the vaccine. Certainly better than getting the flu, though. The only thing I had to remember was to get the shot in my right arm. I used to be concerned that would impact my ability to drive my wheelchair (it doesn't). However, getting the shot in the left arm is worse because I get rolled onto my left side when I'm in bed.

Anyway, get your flu shots, people. And don't even think of poking me in the arm, or you'll get a sore foot, too!

Thursday, October 11, 2007

The Few. The Proud. Me?

From the department of they said I'd never do it...

After receiving a brochure in the mail yesterday from the U.S. Marines Corps, I figured what the hell and headed for a local recruitment office this afternoon, nurse in tow.

Though the office was not wheelchair accessible, a staff sergeant was kind enough to come outside and chat with me. Turns out that I won't be a marine anytime soon, as you can't be older than 28 to enlist. Well, that and the fact that there's no way I'd ever pass the required physical examination!

As I was talking to the sergeant, who had been wounded in combat in Iraq, an officer fully clad in marine attire walked outside. My nurse pointed at me and joked, "He's going to sign up!"

My face turned a shade of crimson.

"Great," he said with a wide smile, "There's a bus leaving in an hour!"

All joking aside, I thought it would be a perfect opportunity to find out what someone like myself can do to support the troops. Say what you want about the war in Iraq, but you have to respect the courage and determination of the men and women serving in that country. Unfortunately, some of them are returning home with serious injuries. I have always felt that those who suddenly become disabled have it a lot more difficult than those of us who have grown up with disabilities.

Still, I have been able to live a productive life despite a serious disability and I hope to be able to share that message with soldiers who are recovering from serious injuries and may be wondering what sort of opportunities exist. To that end, I offered my assistance and provided the sergeant with my contact information. We'll see what happens, so stay tuned.

I didn't get on that bus today and might not be able to serve my country in the way described in the brochure, but I can't think of a better way to serve than to help those who have risked their lives.

If anyone reading this wants to offer his or her assistance as well, please let me know and I will be happy to share any information that I learn.

Saturday, October 06, 2007

Breaking Bread, Burmese Style


Winheld's World has become exotic lately -- well, at least when it comes to trying different foods. Tonight, I had dinner at a Burmese restaurant in Philadelphia's Chinatown district. Rather fitting in light of the current situation in Myanmar (Burma's official name). What better way to show solidarity with the Burmese people than to sample their cuisine.

I liked this restaurant from the second I rolled up the perfectly accessible ramp leading to its entrance. Inside, the hostess seated us at a table that was easy for me to get to, without my having to ask other people to move so I could get by. Even better, she pulled the chair away from the left side of the table -- as if she knew that I like the person feeding me to sit to my right!

The food certainly didn't disappoint, either. My favorite was the Banana Leaf Fish (pictured above). I figured that instead of another photo of yours truly, I would show the food I ate. Sorry if this makes you hungry!

The Northern Burma Fried Noodles (left) and the Jungle Chicken (below) were very tasty, too. We also had the Thousand Layer Bread with Curry Chicken Dip, as well as the Calamari Ala Burma Salad, but my dining companions and I were so hungry that we forgot to take a picture of those items beforehand!

A great time was had by all, which made it a bit easier to digest the Phillies' playoff elimination. As we like to say in Philly, there's always next year...

Monday, October 01, 2007

Lifesaver


If it weren't for my defibrillator, I might not be talking to you now -- or for much of the past month. At a routine check today of the device that has been implanted in my chest for 2 1/2 years, I learned that it may very well have saved my life a few weeks ago when my heart rhythm apparently became dangerously irregular.

I felt neither the irregular heartbeat nor the action that the defibrillator took to correct the problem. The defibrillator did not need to shock me, as it was fortunately able to "pace" me out of the dangerous rhythm. Without the device, the irregular rhythm could have been fatal.

Obviously, this is good news because it means that the device worked and that having it implanted was the right decision. On the other hand, it doesn't make me feel so good that that I had a problem that required the device to work. But my electrophysiologist and nurse practitioner assured me that having one episode like this does not necessarily mean that my condition is getting worse. Let's hope they're right!

In a previous entry, I wrote about what happens at my electrophysiology appointments. There is a picture of a device similar to the one in my chest, as well as the wand that is used to download information from it. What I didn't show was the machine to which the wand is connected. At left is a photo of said machine.

You can see the computer screen more closely in the picture below. Be sure to click on it for an enlarged version (nice editing job by one Winheld's World reader). At the top of the screen is an EKG reading at the time that the photo was taken. Below are some of the settings. At a heart rate of 165 bpm (beats per minute), the device is set to monitor or pace; at 185 bpm, it will pace; and at 200 bpm, it will shock me. If you look in the white box, "Last V-Tachy episode on 09-SEP-2007" which was when the device took action. ("V-Tachy" is an abbreviation for ventricular tachycardia, a fast arrhythmia)

The machine also prints out a report with more detailed information. As I have said many times before, it's really cool technology. I just wish my life didn't depend upon it. However, I'm feeling very thankful today that I have it!

Sunday, September 30, 2007

NL East Champs!


The last time I was able to say that about the Phillies, it was 1993 and I was a sophomore in high school. But Winheld's World is full of excitement this evening as the Fightin' Phils have won the 2007 National League East division title!

I'll admit that I had my doubts on more than one occasion this season, but Phillies shortshop and MVP candidate Jimmy Rollins never did. His preseason declaration that the Phillies were "the team to beat" angered the New York Mets and their fans, but it turns out that he was right after all.

It sure has been a wild ride. Let's hope it continues...

Thursday, September 27, 2007

Summer's Last Hurrah?


With today's weather more befitting of summer than fall, it was the perfect opportunity to get out on the Schuylkill River Trail once again. Pictured at left is Philadelphia's famed Boathouse Row (photo courtesy of Frank, my nurse/photographer). This time, I played tour guide for my friend Kimi (pictured below). With two wheelchairs, it required some extra coordination to avoid bicyclists. "You go first," we took turns saying to each other as they approached, full speed ahead. We also had to make sure we drove slowly enough for the ambulatory members of our party (a.k.a our nurses)!

All in all, it was a perfect day. Gorgeous weather, nice scenery, and great company. Of course, the day was even better because those Fightin' Phils defeated the Atlanta Braves tonight. With the New York Mets' loss, that means the Phillies are now tied for first place in their division!

Tuesday, September 25, 2007

A Visit to the Kingdom


Every now and then, I need to escape from my world, and tonight I certainly did that, as I attended a sneak preview "The Kingdom," starring Jamie Foxx, Chris Cooper, and the very lovely Jennifer Garner. The film follows an FBI team that travels to Saudi Arabia to investigate a brutal terrorist attack on a U.S. housing compound.

It's a truly gripping story, but what I found most interesting was the beginning of the film, which offers a video timeline of U.S. involvement in the Middle East. I didn't realize that oil wasn't discovered in Saudi Arabia until 1938. It emphasizes the sad fact that other than protecting Israel, our ONLY reason for caring about the Middle East is oil.

Though I usually go to the movies quite a bit, this was my first in a while. It was well worth it, although this theater had "stadium seating," which I despise. For wheelchair users, the seating areas are entirely too close to the screen. Some theaters, such as the one I was at tonight, have an elevator to go to the top, but you could practically get a nose bleed at that height!

Anyway, back to the movie. I highly recommend it because it truly makes you think. The last two lines of dialogue alone truly captured the essence of the fight against Islamic extremism. By the film's end, I was ready to return to my own, much safer, world. But with such extremism out there, how safe is it?

Monday, September 24, 2007

Stuck With Me


Well, for the next year or so, anyway, Caroline and Jin, first year students at the University of Pennsylvania School of Medicine, will be. Lucky them!

As participants in the LEAPP (Longitudinal Experience to Appreciated Patient Perspectives) Program, a required part of their curriculum, the students will keep in regular contact with me. They will visit with me at home at least once, go to some of my doctor appointments (I have plenty of those), and even see me in the hospital if I spend any time there, though I certainly hope I won't.

Course Director Dr. Paul Lanken, who addressed volunteers today, acknowledged that some doctors are obviously better from the technical side of things than they are at interacting with patients. But at Penn, he explained, the goal is for aspiring doctors to learn to truly empathize with patients.

So what do I get in return? Aside from knowing that I'm helping future doctors and patients, I get a captive audience that actually wants to listen to my inane wisdom and pathetic humor. Hey, I couldn't even PAY my own sisters to do that!

Welcome to Winheld's World, Caroline and Jin, and good luck with your studies...

Saturday, September 22, 2007

A Fundamental Right


I was dismayed by news today of President Bush's planned veto of legislation to expand a health insurance program for children whose families cannot afford private insurance.

Bush contends that expanding the Children's Health Insurance Program (CHIP) would be too costly and would extend government-covered insurance to children in families who can afford private coverage. Proponents, including a bipartisan majority in Congress say all they're doing is expanding coverage to more children who would not have been covered. Bush also argues that it sounds like a push for completely federalized health care.

Even if that were true, would that be such a bad thing? Certainly, all children deserve health insurance. It should have nothing to do with whether their parents can afford it; no child chooses his or her parents. But what about universal coverage for adults, too? I believe healthcare is a fundamental human right. Healthcare should have nothing to do with your income. Some people don't agree. To them, I say this: wait until you have a serious health issue and you'll understand.

Though it's not perfect in other countries that have it, I would like to see a single-payer system that eliminates insurance companies, but let's be practical -- the insurance industry would never allow it. If we need to include them in the solution, fine. However, the point is that everyone should be covered; I don't care how we go about it.

My medical situation may not be the norm, but if the federal government guaranteed health insurance, I'd like to think I'd be more likely to receive 24-hour nursing coverage, which would allow me to live on my own. I currently get 16 hours a day through my family's costly private insurance. A state waiver plan exists, but it doesn't reimburse nursing agencies as well. Do you think private insurance companies want to pay for eight more hours of care each day? No, and I can't blame them. My care is expensive. I feel that's where my government should step in.

Bottom line for me: until every American has health insurance I cannot say the United States is greatest country in the world.

Thursday, September 20, 2007

No News Is Good News (I Guess)


Today I had a routine check-up with my cardiologist. Not unexpectedly, the doctor was pleased with how I'm doing. But somehow, that never makes me feel a whole lot better. The problem is that with Duchenne's, there seems to be no way to predict when things will take a turn for the worse. I want to be able to recognize the signs so we can at least try to do something before it's too late.

I communicated these thoughts to my doctor. While he can't give me the kind of answer I want -- such answers simply don't exist -- he offered some useful perspective. The two threats I face from a cardiac standpoint are fatal arrhythmias and heart failure. My pacemaker/defibrillator offers protection from the former and he has me on the right medications for the latter, which reduce workload on the heart, thus slowing down the rate at which heart muscle breaks down. We can look at things like energy level whether I wake up feeling short of breath as a signs of my condition. So far, so good. As the doctor reminded me, "You're not even supposed to be here."

And he's right -- things didn't look so good five years ago this month, when I first arrived at his office. But I'm still here. So, maybe the best answer is to get out there and live my life. It's what I've always tried to do. Why change that now? After all, I might be sticking around for a while. I'll certainly need to if I want to ever see a sports championship in Philadelphia!

Next appointment, I will have my annual echocardiogram, which will tell if there has been any change in my heart function. The date of that appointment? February 14th -- Valentine's Day. How appropriate!

Sunday, September 16, 2007

Dream On


For the better part of 15 years, Winheld's World (not the blog) has been passionate about sports, especially when it comes to the four major professional franchises that call Philadelphia home. For our international readers, that would be the Phillies (MLB), Eagles (NFL), 76ers (NBA), and Flyers (NHL). No matter what difficulties I have faced in life, I have always been able to turn to sports to not only to distract me, but to entertain, captivate -- and, yes, aggravate me! After all, a championship hasn't been won by a team from Philly in 24 years!

My passion is probably not what it once was. (How much heartbreak can one endure?) But yesterday, I stumbled across the above video clip on YouTube, a montage of the highs and (mostly) lows of Philly sports in recent decades, set to Aerosmith's "Dream On." I can't get enough of it, as it serves as a powerful reminder of how much I still love my sports, and how much I still want to see one of my teams win a championship.

Well, despite an exciting three-game sweep by the Phillies over the hated Mets in New York, that doesn't appear likely to happen anytime soon. But until then, I'll continue to watch -- and dream on...

Sunday, September 09, 2007

The Tradition Continues




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

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

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

Thursday, September 06, 2007

GI Josh


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

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

Sunday, September 02, 2007

Not So Super Market


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

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

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

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

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

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

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

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

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

Sunday, August 26, 2007

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!

Thursday, August 23, 2007

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!

Sunday, August 12, 2007

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, July 21, 2007

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?"

Sunday, July 15, 2007

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


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!

Friday, July 13, 2007

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...

Thursday, July 12, 2007

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...

Friday, July 06, 2007

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!

Saturday, June 30, 2007

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!

Monday, June 18, 2007

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...

Monday, June 04, 2007

"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)

Thursday, May 31, 2007

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...

Saturday, May 26, 2007

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!!!

Tuesday, May 15, 2007

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!!!

Sunday, May 13, 2007

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.

Friday, May 04, 2007

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!