Steppin' Out on New Year's

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.

House Arrest

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...

We Are Family

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!

Sign of the Times

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...

Take a Deep Breath

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.

Renaissance Man

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...