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Tuesday, July 22, 2008


I always hoped my book would help a lot of people. I never expected that I would meet any of those people. Last week, I met several at the PPMD conference. Today, I actually had a few of my adoring fans pay a visit to my home. Here I am with Lori (back, center) and her children (from left) Ben, Lydia (holding my dog, Zoe), and Sam, who came all the way from New Hampshire to meet me and have their copy of Worth the Ride: My Journey with Duchenne Muscular Dystrophy personally autographed.

Ben and Sam both have DMD, so my book has been helpful to their family in showing them what is ahead on their own "journey." From the sound of things, it seems that they will be quite successful. At the very least, they will be taking that journey on some very cool wheels! Back when I was growing up (and yes, it was a long time ago), they didn't make wheelchairs like the ones in which Ben and Sam were cruising around the house.

It was a nice visit. I got to impart some words of wisdom (imagine that) and I even learned a few things myself. It's always good to be able to compare notes when you're facing something like DMD because there is never enough you can learn.

I've learned that I have fans across the country and around the world. So, if you're ever going to be in in the Philadelphia area, drop me a line. I'd love to meet you, too!

Sunday, July 20, 2008

PPMD Day 4: See You Next Year!

Part 4 of Winheld's World coverage of Parent Project Muscular Dystrophy’s (PPMD) 2008 Annual Conference, July 17-20, in Philadelphia.

This year's conference sure did go by quickly! It seems like only yesterday that I was attending the first day of last year's conference! Somehow, I managed to wake up early after a late night out. Maybe the alcohol helped me sleep better (To any of my doctors reading this, perhaps you can write an order). More likely, I just wanted to get down to the hotel in time to bid farewell to my friends. Good thing I got there when I did, as the hotel staff was practically taking the food away. At least I was able see a number of friends and to meet a few more people.

Riding home, I felt glad to have gotten involved with PPMD. The work they do is helping so many people, and to me, that's what it's all about. As I said in yesterday's entry, attending next year's conference may be more challenging, but there's no way I'm going to miss it. I just hope it doesn't go by as quickly as this year's.

Saturday, July 19, 2008

PPMD Day 3: The Main Room!

Part 3 of Winheld's World coverage of Parent Project Muscular Dystrophy’s (PPMD) 2008 Annual Conference, July 17-20, in Philadelphia.

If you haven't seen Mel Brooks' "History of the World, Part I" then you probably won't understand the title of today's entry. But the basic idea is that Comicus, played by Brooks, uttered said line upon being informed by his agent that he was to play at Caesar's Palace (this is in ancient Roman times, mind you) in the main room. But I digress.

Today I played the main room at the PPMD conference, along with four other adults with DMD. Led by our ringleader, Pat Moeschen, we addressed a room full of parents of younger children with the disease, talking about our lives and accomplishments, often bringing down the house in the process.

The main theme of our talk was that life does not end with a wheelchair. We have all been able to accomplish much in our lives, despite being in chairs. (From left) Jason Abramowitz spoke about traveling and playing competitive wheelchair sports; Pat Moeschen spoke about his work as a middle school music teacher; Conrad Reynoldson, who is double-majoring in history and political science, talked about his internship last summer on Capitol Hill; Jacob Gapko spoke about his PhD work in library and information sciences and the annotated biography he has compiled on books written by and about those with muscular dystrophy; and I talked about my book and my master's research. No topic was overlooked in our talk, as we addressed education, family dynamics, independence, and yes, even sex and relationships. "Don't ask a question if you don't want the answer," our moderator forewarned the audience at the beginning of the session.

As I rolled off the platform following our talk, I was greeted by PPMD President Pat Furlong, who thanked me and asked me to be there at next year's conference. I have to admit that I got a little choked up. Next year's conference will be in another city, which presents a number of challenges, chief among them transportation. I know I will overcome these challenges, but an even bigger challenge is my health. It's very hard to think in terms of an entire year, but I will do everything in my power to be there.

That is, unless I become a raging alcoholic, which may happen if I keep hanging out with Pat Moeschen! Following tonight's delicious banquet at which we celebrated Executive Vice President Kimberly Galberaith's 10 years on the job (from left are Jason, Jacob, Kimberly, Conrad, Pat Furlong, me, and Pat Moeschen), he had me out into the wee hours of the night drinking! Of course, "drinking" for me entailed the consumption of half a glass of some sort of vodka concoction. I'll tell you, though, it was enough to ensure that I am now absolutely exhausted. Time for bed. Early wake-up time tomorrow, as I need to get down to the hotel in time to say goodbye to my friends.

Friday, July 18, 2008

PPMD Day 2: Meet and Eat

Part 2 of Winheld's World coverage of Parent Project Muscular Dystrophy’s (PPMD) 2008 Annual Conference, July 17-20, in Philadelphia.

One thing I have found about attending conferences is that you do a lot of eating! I certainly did plenty of that today. In between, I met many people (here I with Donna, of Austin, Texas, a big fan of my book) and participated in some very important panels.

First, I was part of a group of medical professionals and patients that discussed issues relevant to the adult population with DMD. Respiratory and cardiac considerations were the focus of the discussion -- I told the group that "I have had pretty much every intervention that exists" -- although we also talked about social issues. The discussion went so well that the hour-long session nearly stretched another full hour.

Personally, I was amazed at how far treatment of the disease has come. Now, some doctors are putting their patients with DMD on the same cardiac drugs that I credit with keeping me alive -- much earlier. Non-invasive ventilation (NIV) has also become much more commonplace. Do I wish that I had such interventions in the years prior to my entering adulthood? Perhaps. But there is so much that medical professionals have learned in recent years that was not known when I was coming along. Even so, I have been able to live as long as I have lived because the doctors treating me did what they knew how to do at the time to save my life -- and it worked.

A few hours later, I participated in a panel of adults with DMD that met with a doctor from the U.S. Food and Drug Administration (FDA) to discuss our views of risks/benefits and desired outcomes of potential clinical trials for DMD interventions. For those of us in the later stages of the disease, being able to keep walking is obviously not the desired outcome, as we have been non-ambulatory for years. So our views are different from those of the parents of younger children with DMD.

The fact that someone from the FDA wanted to meet with adults with the disease is a significant development. For far too long, it seemed that the adult population with DMD was being all but ignored. I found it to be a very emotional meeting because we had a chance to say what has been on our minds for years. I concluded my remarks by telling the doctor the story of how I listened to a father of a young child with DMD at last year's conference plead for help so that his child would not end up in a wheelchair as if that was the worst thing in the world. "Well, what about us? If there's anyone who should be desperate, it would be us. We are much closer to the end of the line and just want to live our lives."

By the end of the meeting, I was completely spent -- and hungry. But first, I met with the other adults on the panel on which I will be speaking tomorrow afternoon to prepare our remarks. The truth of the matter was that we did not need a whole lot of prep time. We have some sharp minds in the group (except for me!) and we're going to do a great job tomorrow.

My long day came to its conclusion with a nice relaxing meal at a nearby Italian
establishment with my wicked funny pal from New Hampshire, Pat Moeschen; (from left) his girlfriend, Ashley; my nurse, Frank; and Pat's mother, Helen . I don't know where the guy gets it from, but even after a long day, Pat still had his usual sick sense of humor!

Thursday, July 17, 2008

PPMD Day 1: Together Again

Part 1 of Winheld's World coverage of Parent Project Muscular Dystrophy’s (PPMD) 2008 Annual Conference, July 17-20, in Philadelphia.

It was a family reunion of sorts today, as Parent Project Muscular Dystrophy kicked off its annual conference.It was an opportunity to reconnect with a number of parents and medical professionals I had met at last year's conference. Here I am with Dr. Steve Wilton, of the Australian Neuromuscular Research Institute, one of the world's leading Duchenne researchers. I also met a bunch of new faces, some of whom already knew me from this blog and/or my book. It seems I have become quite a celebrity. But don't worry, I won't let it get to my head...well, not too much, anyway!

On a more serious note, as I watched a video about PPMD at the beginning of today's proceedings, I was in awe of what this organization has been able to accomplish in only 14 years. They're at the forefront in developing care considerations for DMD and are investing heavily in research to find a treatment for the disease. Many people are responsible for PPMD's development, but without the vision and energy of PPMD President Pat Furlong, I doubt that any of this would happened. I salute you, Pat, and promise to do my part for as long as I live.

Wednesday, July 16, 2008

The Payback

Last month, I made a friendly wager with my good friend, Pat Moeschen, over the Red Sox-Phillies series. The loser would buy a Philly cheesesteak for the winner. Naturally, I was the loser. After all, teams from Boston win with regularity. Teams from Philadelphia? Not so much.

Still, it was really a win-win situation. Either way, I was going to end up with a delicious, artery-clogging cheesesteak. Just one way, I would have to pay out of my own wallet for that privilege.

With Pat in town early for the upcoming Parent Project Muscular Dystrophy conference, today was the day to settle our bet. First, we took a driving tour of the city. Then we headed for the Reading Terminal Market, where we hunkered down at a table and stuffed our faces with cheesesteaks from Spataro's. I didn't even need dinner tonight, I was so full. And the best part (aside from the sandwich)? Pat wouldn't even let me pay for his. Maybe I should start making wagers with the guy more often!