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)

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.


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


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!