Saturday in the Park

Saturday in the Park

What a beautiful day! Very un-Philadelphia-like for August. No way was I going to stay at home on a day like this, so with a family friend, who was visiting us from out of town, and my nurse du jour, I decided to catch the train and head downtown. Yes, that's right. Even after last year's harrowing encounter with a SEPTA train, I thought I would give it another shot, what with the cost of gas and parking. I'm glad that I did, as things were a lot easier with my new wheelchair.

When we arrived safely in Center City, we made our way to Rittenhouse Square, one of my favorite spots in Philly, where we ate pizza and girl -- I mean people -- watched. What more could a guy want? Beautiful weather, delicious pizza, and gorgeous girls. Hope you enjoy the pictures of the scenery -- and I actually mean the scenery this time. Come on, I'm not a total dog!

Happy 30th, Part 2

Happy 30th, Part 2

Back in March, when I celebrated my 30th birthday, a group of my high school friends got together and decided that they would take me to a Phillies game this season. Well, it took until August until we could all find a date that would work for all of us, and tonight was the night.


We couldn't have picked a better night. The weather was perfect, with a gentle breeze and clear skies. The Phillies, despite a sluggish start, easily handled the Los Angeles Dodgers in an 8-1 victory 70s retro night (hence the picture below of me with some drunk folks dressed appropriately for the occasion). Even better, though, was the company. I'm so glad to be close with my friends from way back when. I did want to strangle them, though, for ordering the Phillies birthday package. Putting my name on the scoreboard (above) was one thing, but having some dude come over and lead the group in singing "Happy Birthday" and showering me with confetti that I couldn't get out of my hair was another thing. I suppose if it had been a cute girl singing, I could have handled that!

"Well," said one of my friends, "you only turn 30 once, right?"

After tonight, I beg to differ!

Thanks for a wonderful time, guys! Let's do it again next year...

Fancy Footwork

Fancy Footwork

After trying on pair after pair of new shoes in recent weeks, I finally found what I was looking for (at left). Getting new shoes is no big deal for most people, it is a bit of a challenging for many of us with DMD, whose feet have turned inward as a result of the disease. My old pair had grown molded to the shape of my feet over the years, but they were at least 15 years old and falling apart at the seams, as you can clearly see below.

I was pretty pessimistic that I would ever find anything as comfortable as my old shoes. While being unable to wear shoes isn't the end of the world, it would have been one more thing this disease has taken from me. Why let that happen if I could help it? With my nurse's assistance, I found a pair of wide-width shoes a couple sizes larger than my actual size (it's not as if I'm going to walk in them) and voila, my feet slid right inside. It was love at first, um, feel. I bought them and wore them out of store.

With any luck, my new shoes and I will both make it another 15 years!

Winning Combination

Winning Combination

With the way the Phillies played tonight, defeating the Florida Marlins, 5-0, my friends Jim (standing) and Pat (to my left) and Jim need to make the trip from New Hampshire more often. Or maybe it was our attractive female company, Sarah (standing) and Jen (seated, next to me). Whatever the reason, it was one of those perfect summer nights meant for baseball.

Although Pat and Jim loved their innaugural visit to Citizens Bank Park and look forward to returning next year, I couldn't get the longtime Boston Red Sox lovers to adopt the Fightin' Phils as their favorite team. Not that I can blame them, when their team won the World Series last year and the Phillies have not accomplished that feat in nearly 30 years!

Graduation Day

Graduation Day

No, I haven't finished my master's degree. For that, check back next spring. Today was hopefully the last time I had my feeding tube changed at the hospital. Normally, a g-tube "button" such as the one in my stomach could be changed at home by a nurse. However, about a year or so after I had the surgery to place the tube, I developed what is known as a "false tract" and when we tried to replace the tube, it ended up going somewhere in the abdominal wall instead of in my stomach. Obviously not a good thing and let me tell you, when we flushed the tube, it hurt like hell!

On a couple of occasions, we all thought that the false tract had closed, only to find out that it had not. Then I would have to get to the Interventional Radiology (IR) department at The Children's Hospital of Philadelphia (CHOP) as quickly as possible so that the hole in my stomach would not close up.

Eventually it was decided that I would just go to IR on a regularly scheduled basis (every three months), where they would change the tube over a guide wire and then introduce a contrast solution so that they could check placement. However, it is always a bit of an ordeal. I have to get out of my chair and lay on a table. As I don't get picked up, I bring my Hoyer lift (my lucky nurse has to lift in and out of my van). Then it takes a while to position me on the table. When I first started doing this, it caused me a great deal of anxiety, as I was worried about hurting my legs, which are extremely contracted. Now, I don't worry at all. I know that my nurse isn't going to hurt my legs and the IR staff is always helpful in positioning me. They take their time and now know exactly what I need -- towels, pillows, straps, etc. -- to be comfortable.

But after three years of doing this, the doctor is confident that I should be able to change the tube at home again. So today, I had my nurse try to change it while I was on the table in IR. Everything went well, so it looks like we're good to go. To celebrate my "graduation," I decided to get a group shot of me with some of the IR staff. Here I am with (clockwise, from bottom left) Dr. Anne Marie Cahill, Corinne Leitheiser, Karla DiTomasso, and Jayme Whitaker. You'll have to excuse my open mouth -- it is such a great photo of everyone else that I had to use it.

Although they are a nice looking bunch (the female staff, anyway), I would still rather be able to have my g-tube changed at home. Come November, it looks like that's going to be possible. Wish me luck!

Not Just a Voice Anymore

Not Just a Voice Anymore

You can only get to know people so well when your only interaction with them is over the phone. For example, I have spoken to many people over the years at the Jewish Employment and Vocational Services (JEVS), which provides my attendant care services. But until today, when I addressed JEVS staff at their monthly meeting, I never had the opportunity to meet many of them.

With me are (from left) Director of Operations and Marketing Dina Sanz; Administrative Assistant Yakelin Cornejo; Service Coordinator Bridget Grabill; and Attendant Care Program Director Jim Boyar.

In my talk, I described my experience with attendant care services, which has been positive overall, but I have my share of attendants who were unreliable, unpleasant, or both. I briefly discussed my disability and its impact on my life and explained how I have always strived to live as normally as possible. Of course, I mentioned my book and was asked several questions about it.

Now that the entire JEVS staff knows who I am, there's no way for me to remain anonymous. I can only imagine what it will be like the next time I call: "Winheld? Oh, aren't you that famous writer who spoke at our meeting?"

More like infamous. But yeah, I'm that guy!