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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!