Winheld's World

2010-03-04T10:39:00.002-05:00

I have been trying to get the word out to national news sources about Josh and all that he did, including writing this blog, and his book. So far I have had no success doing this, despite sending the letter I wrote out twice. My new idea is to have people who knew Josh send in letters about him and all the good he did, as well as any personal stories where Josh helped you, to these same sources. The more letters/e-mails regarding Josh, the more likely someone may stand up and take notice. I am asking that those of you out there who would like to help please send your letters to:

CNN --> http://www.cnn.com/feedback/forms/form11b.html?2
Nightly News with Brian Williams --> Nightly@NBC.com
TODAY --> Please send story ideas to Noah Kotch, Senior Producer, 379E-1, 30 Rockefeller Plaza, New York, NY 10112 OR e-mail --> TODAY@nbcuni.com
Ellen Degeneres --> http://ellen.warnerbros.com/show/respond/?PlugID=10
Oprah Winfrey (specifically for her book club) --> https://www.oprah.com/ownshow/plug_form.html?plug_id=220

Like I said, anything you could do to help would be greatly appreciated. And as it is March 4th, happy birthday Josh, we all love and miss you.

Thanks!

Stephanie (the younger of the two sisters)

2010-01-31T18:58:00.005-05:00

The East Cheltenham Library (Josh's local library) is currently displaying Josh's book -- front and center, along with information about muscular dystrophy. Josh's family appreciates the outpouring of support from the Cheltenham community.

2009-12-31T14:50:00.005-05:00

This December, we held our annual Cousins Dinner in memory of Josh. (As you may have read on this blog before, Josh was the true initiator, planner, and general mastermind behind the Cousins Dinner.) For the Cousins Dinner, Josh always saw to it that our five first cousins (who were in the general Philadelphia area) attended. This year, we all made sure that the get together took place. In the past, Josh selected a Philadelphia eatery, but this year, we held the Cousins Dinner at my recently purchased home. With Mandy in Australia (where she is continuing her studies) and Brett ill with a nasty stomach bug, we were left with five hungry participants. Everyone contributed a food/beverage and we ended up with a quality home-cooked meal. I believe that everyone involved will assist in continuing this tradition in memory of Josh.

Amy (the older of Josh's two younger sisters)

2009-12-25T18:59:00.003-05:00

JOSH WINHELD, z”l

Family and Friends of Josh:

On Friday night, Jews around the world will light their menorahs and inaugurate the holiday of Hanukkah. It is the story of a miracle, of a little vial of oil which should have burned briefly and then gone out but instead burned for 8 full days. We call Hanukkah our ‘festival of lights’.

Josh Winheld was a modern miracle. His light of life burned well beyond any of the medical predictions at the beginning of his journey with muscular dystrophy. His light of life burned brighter and warmer than anyone could have imagined. His courage, his strength, his compassion, his intelligence, his decency…..lit the light of hope for countless families of people in wheelchairs ……and all along, like in the story of Hanukkah, his light of hope did not diminish, but grew stronger and stronger everyday.

In the Talmud, the rabbis asked the question: why don’t we begin Hanukkah with all 8candles lit and take one away everyday to symbolize the diminishing supply of oil? Their answer: with respect to sacred matters and matters of hope and faith, we only increase and never decrease.

Josh Winheld labored to increase hope, light, love and courage his entire life. He never diminished hope or strength in anyone. He was a “nes gadol,” (a “great miracle” in our midst) who quietly and persistently worked and lived the best way he could for himself, his family and humanity. What Josh accomplished in his 31 years was nothing short of miraculous and as with the miracle of Hanukkah, we will forever remember, preserve and amplify the light Josh brought into our lives and our world.

Josh was born on March 4, 1978 on a snowy day in Elkins Park Hospital, the first of the three children born to Linda and Michael Winheld. The Winhelds are an exceptionally close family who had an exceptionally big challenge to meet in life and met it with exceptional courage, grace and love.

When Josh’s sister Amy was born, Josh was brought to see her in the hospital nursery and promptly asked if he could bring a different baby home. The reality is, nobody in the Winheld family ever wanted to trade places with anybody else.
When Josh’s sister Stephanie entered elementary school, and looked around at the other kids and their families, it dawned her for the first time that everyone didn’t have a brother in a wheelchair.

The reality is that very few of us have a brother like Josh, not because he was in a chair, but because he knew how to navigate life with grace and with a smile. And, sadly, not everyone in a wheelchair has a family like the Winhelds who can instill the inner confidence all of us need to travel through life whether in a chair or on two feet.

Josh was diagnosed with Duchenne Muscular Dystrophy at age 4 and by age 10 needed a wheelchair to get around or as Josh put, “I became the first person in my class to drive.” He went to public school here in Cheltenham, gently challenging the school system to learn to better accommodate the handicapped as he went his way. He also attended religious school here at KI where he became a Bar Mitzvah in April, 1991 and was later confirmed. He went on to graduate from the Isaac Mayer Wise Program at Gratz College. He was determined to do everything kids do, and at the same time become expert in his medical condition, and ultimately an advocate for people in chairs.

Josh could do a lot of things. He watched the cooking channel and then directed his helpers in the kitchen. He made a mean pickle. He convened an annual “cousins dinner”. He not only followed sports from the comfort of his parents’ den but went to the great stadiums of this country and Canada - Chicago, Toronto, New York, Pittsburgh, Baltimore , Atlanta, Boston and beyond. He even went to spring training. When the Phillies won the world series, not only did he go to the parade, he managed to talk a stranger into getting him into a second floor office in City Hall so he could see his heroes on Broad Street.

Josh attended Temple University where he earned a BA in journalism and then started his Masters Program there in Urban Planning. It was at about this time that I personally met Josh. When I accepted the position of senior rabbi here at KI, a number of people came to me and told me about Josh and said that I needed to be ready to provide pastoral support to Josh and his family. Josh’s dad, Michael, was actually the only person at KI I knew at the time. Michael and I played softball together on a travel team at Camp Harlam for several summers almost 40 years ago. Michael was on third and I was on first. It was a good time.

What I wasn’t prepared for was to meet a really “nice guy,” Mr. Josh Winheld, who seemed to know everything there was to know about sports, history, politics and a few other things to boot. I wasn’t prepared to meet a young man in a wheel chair who was always pleasant, polite and ready to greet and speak with me, whenever I happened to see him. Nor was I prepared for a guy in a chair who could do a really quick 270 degree turn and speed back to his keyboard in his room when our discussion was done, so he could get back to his work.

Josh became a personal source of inspiration to me on more than one occasion and I’m sure many of you have your own versions of Josh stories of this nature. When my youngest child was admitted to Children's Hospital into a unit he had been in, Josh made it his business to get in his van and be brought directly to Chana’s floor and offer his services to be her pathfinder there. “I know everybody here,” he told her, “if you have any questions or need anything, ask me!”

On several occasions, Josh not only attended family funerals, including one here at KI, for his grandfather, Bob Rosen, but established himself as a great eulogizer…a young man in a chair with a sense of humor, even at funerals, who delighted in sharing risqué stories with his congregation with perfect timing and a self-effacing laugh.

Because of his condition, Josh thought a great deal about death. His conclusion was to live as fully, as happily, and as productively as possible. Josh and I had numerous discussions and email exchanges about whether he should write a book or finish his masters first. I’m sure he consulted many people. When he made his decision to write his book, he plunged into his work, shielding the contents of his manuscript from just about everyone and produced a magnificent manuscript of 75,000 words with a hands-free computer using only head motions to write his text.

The results: a powerful memoir, Worth the Ride, published by Little Treasure Books. The “book launch”, held in the Rothschild Auditorium at the other end of this building was one of the most powerful events I ever attended. Josh was no ordinary person. His power to help others was manifest in every word he shared that day, and every word he wrote down for posterity in his moving autobiography.

The book was just the beginning. He then initiated an online blog, “Winheld’s World,” lectured at medical schools and talked to conventions of physicians. It was always the same message: respect everybody’s essential humanity, respect them for who they are and respect them for their dreams. Most of all, he wanted to help patients and their families know what to expect about life in a wheelchair. Strangers from London to San Fransisco, responded to him, trusted him, confided in him, cried to him and depended on him; and he was always there for them.

The Hanukkah menorah has eight regular candles and one helper candle. Josh’s helper candle was lit and held by many people. Josh had many doctors, nurses and aides who cared for him, loved him and respected him. It took many hands to help Josh. He held everyone of those hands with his heart.

Above all, Josh’s family were his helpers: Linda, Michael, Amy and Stephanie provided Josh with everything they could, every day, in every way, without hesitation or qualification. The miracle of love, like the miracle of Hanukkah, is self-replenishing. The well of true devotion never runs dry and is never sealed or unwilling to give of its nurturing water.

The Winheld family will insist, if you ask them, that who Josh was and what he accomplished, all was a function of his spirit. But that spirit was not alone in this world.

His family didn’t do what they had to do; they did much more, by empowering Josh with a unique sense of normalcy and mission in life. Anyone who ever visited the Winheld house on Rowland Avenue saw how Linda cared for her son - selflessly, perfectly, every day, often all night. Anyone who ever sat in their den, saw how Michael held his family together and gave the sense of security they needed to be a regular family with an incredible mission. Anyone who ever saw Josh, Amy and Stephanie together, saw a weave of sibling love as natural and warm as the light of a new summer day.

The other night I had the privilege of talking about Josh with his extended family in the Winheld family room. Here’s what they said about their Josh. He was courageous, generous, inspiring, spiritual, caring, accepting, lovable, intelligent, approachable, and independent. Above all, we agreed, he was a “really nice guy.”
Josh Winheld died peacefully this Saturday, December 5, 2009 on a snowy afternoon in Elkins Park Hospital, 31 years after he had been born in the same place on a snowy day. Snow flakes, like little angels, accompanying him into and from this world.

Now, the light of Josh’s life is extinguished; but the light of his spirit shines on and on in every good deed you do, in every kind word you share, in every tear you will ever dry, in every memory of him you hold in your heart.

Zichrono L’vracha……Josh’s memory is a blessing.

Amen.

-- Rabbi Lance Sussman, Ph.D. (Josh's rabbi)

2009-12-24T13:15:00.003-05:00

When I told my Mother Josh had passed away, part of her reaction was that “Josh had COURAGE.” When she said that, I paused because – to me – COURAGE – implied action in the face of fear. But that was not Josh. Nothing he did or accomplished was motivated by fear. But to be fair to Mom, I Googled the word and found these definitions:

·Courage: derived from the 14th Century French word for Heart
·Mental or moral strength to venture, persevere, and withstand danger, fear, or difficulty.
·“That quality of mind which enables one to encounter danger and difficulties with firmness, or without fear, or fainting of heart; valor; boldness; resolution.”
This sounds very much like the Josh we all knew and loved.

I would also add the words from the gift made of Scrabble letters he hung proudly on his bedroom wall: Humor, Scholar, Journalist, Kind, Reader, Clever, Historian, and most important of all: Philly Fan.

From his early days to the end of his life, Josh knew he had no control over the physical aspects of his disease, but he understood the power he had to keep the disease from defining the person he would be.

When Josh was 8 or 9, he decided to start reading the World Book Encyclopedia. When Michael told me, I looked up Muscular Dystrophy, which was essentially defined as a “degenerative muscular disease typically resulting in death by adolescence or early teen years.”

I was devastated to think how horrible it must have been for Josh to read something like this. But, as he explained in his book, things “like this” only happened to “sick” people, and he was not sick. He just had trouble walking.

When he went from crutches to a wheelchair, he viewed this not as a progression of his disease, but as a moment of “liberation.” Finally, he could effortlessly move about without the fear of falling, the risk of injury, and physical exhaustion.
Throughout his academic career, he curried no favors and sought no special treatment. He wanted to be where he was because of who he was.

As an adult, Josh wrote in his book about the adjustments he had to make after his surgery for the ventilator and G-tube: “There was no way that a nurse was going to stand outside the bathroom door….After five minutes, she could knock … to ask if I was finished. I didn’t care if I stopped breathing or had a heart attack on the toilet. There was a limit to which I would allow my disease to dictate how I lived.”

Josh’s positive self-image and sense of worth gave him the COURAGE, CONFIDENCE, HUMILITY, AND EMPATHY to bare his deepest feelings so that others who followed behind him would know they were not alone.

Josh was 9 years old when he drew this card for me after I broke my leg in a skiing accident. What struck me most was how someone in a wheelchair was feeling sorry for someone who could get better. This simple card from a child lifted my spirits and helped me through my recovery. This ability to connect with people was one of Josh’s special gifts that only got better through the years.

I leave to the Rabbis the imponderables of Judaism. But suffice it to say, I believe in what I call “Cosmic Coincidences.” Josh died in the hospital where he was born. It was cold and snowy when he was born; it was cold and snowy when he died.

My Bar Mitzvah torah portion dealt with God’s blessing and Abraham getting his new name. The torah portion this week talks about Abraham’s grandson, Jacob, and Jacob’s dream the night before he faces his brother Esau. At the end of the dream, as dawn breaks, Jacob gets his blessing and a new name: Israel.
For almost 32 years, more than twice as long as those of us who loved him had hoped for, Josh wrestled his Angel on Earth and did a hell of a job. I believe he accomplished what God sent him to do and then blessed him and brought him home.

Amy and Steph, your parents put Josh’s name in yours for good reason. Although we lay to rest the vessel, his soul and spirit lives on as his name intertwined with yours takes on new meaning. He will always be with you. He will always be your
Big Brother. He will always tell you the right thing to do, even if you don’t want his advice.

I can imagine Josh wheeling up to the Guard House at the Pearly Gates being asked, “Well Josh, was it worth the ride to get here?” Besides trying to sell another copy of his book, he answers in his own words:

“It is truly the quality of my life, not its duration that makes me most fortunate…

I have had the opportunity to spend more time with my family, including the time to watch my little sister grow up. I am surrounded by caring, dedicated nurses and attendants… I have the respect and admiration of my friends, who have not forgotten me. And, if anything, I believe … my experiences haven given me a greater appreciation for life. My life may not be perfect, but it has definitely been worth the ride.”
How many of us will be as blessed at our life’s end to feel the same?

Josh will be sorely missed. But he will never be forgotten. He leaves us all his legacy of the power of the human spirit and the challenge to do good and accomplish great things.

-- Howard Markman (Josh's "Uncle" Howie)

2009-12-23T21:09:00.001-05:00

I remember when Josh was a little boy we used to play Josh’s own special brand of hide and seek. “Uncle Steve, Uncle Steve!..come find me, come find me.”

Yes, Josh, I found you. We all found you. Because like your special game of hide and seek, you made it so easy to find you and to get to know you. With so many obstacles in your way and yet you made it comfortable for all of us. The conversation was rarely about you - - you were always more interested in everyone else.

Josh touched our lives. He was a unique individual – as a boy, as a young man and as an adult. Not because he had muscular dystrophy or because he lived in a wheel chair, but because he made us know that he had his own mission to get on with his life despite the many obstacles. And boy did he get on with his life!
- A normal public school education in Cheltenham instead of special schools;
- An undergraduate college education at Temple;
- A graduate education at Temple with a Master’s thesis.
- Cooking, blogging and writing a book that opened our eyes to the reality of Josh’s day to day life.
- And so much more…

As someone said to me recently: “he lived his life to his full potential and not many people can say that”.

But that’s not what I’ll miss about Josh. I think some of Josh’s favorite moments were when he felt independent - - when you could get him alone. And just talk. Josh could talk about anything. He was spirited and he was interesting. He had a point of view and he was fun.

To Linda and Michael, we all know, Josh had an unbelievable support system and you were at the center of it. You helped make Josh the incredible person he became. Linda, my big sister, you amazed me with your selfless performance day in and day out. You were Super Mom, not just to Josh, but to Amy and Stephie as well. And you were much more than a mother to Josh - - you were his nurse, his friend, his cheerleader and his constant companion and you never made it seem hard because it was a labor of love.

We all learned from Josh. I know I did. He had passion for what he was doing (and not just for the Phillies and Eagles). He had courage. But most of all, he gave us so much. Josh, for me, it was most definitely “Worth the Ride”.

-- Steve Goldstein (Josh's uncle)

2009-12-22T17:49:00.001-05:00

Josh truly was an unbelievable person. He accomplished more in his 31 years than most people do in a lifetime. I can list the things we all know about, like writing a book, getting his Masters, and organizing an awesome football tournament to raise money for DMD. But I think that Josh’s greatest accomplishment was just being him. He brought joy and love to so many people. He taught us how to see the good in every one, even if you have to look extra hard. He showed us how to fight against something that seemed unbeatable, which is apparent when listening to his favorite song, “The Boxer” by Simon & Garfunkel. Josh wrote in his blog “The lyrics seem to speak to the inner boxer in all of us, still fighting the good fight when everyone else thinks you're down for the count.” And what a fight he put up…he was with us for 31 years! That’s amazing!! That is a true accomplishment!

Josh was always worried about everyone else, despite his own problems. One comment that Josh made to me just last week will always stay with me. We were talking about my upcoming wedding in July and he said “I don’t know Sar, July seems like a long ways away.” He then told me, “I hope you’re not upset with me if I can’t make it.” It amazed me that his first thought would be of my feelings, but that’s just how Josh was. And that’s why we all loved him so much!
There’s no easy way to say goodbye to someone you love so much, but I don’t think we have to. I know that Josh is always going to be with us, he just may have a different view.

There’s a quote in a song that I feel truly puts into words how I feel about Josh and it goes like this: "It well may be that we will never meet again in this lifetime so let me say before we part: So much of me is made of what I learned from you. You'll be with me like a handprint on my heart. And now whatever way our stories end, I know you have rewritten mine by being my friend."
I know that all of our stories have been rewritten because of Josh. I miss you, love you, and will never forget you…

-- Sarah Redelheim (Josh's long time friend)

2009-12-22T17:45:00.002-05:00

As you may or may not know, well over 400 people attended Josh's funeral. So many people were impressed by the words spoken in tribute of Josh that we thought those of you who could not be in attendance might find these eulogies of some consolation. The following are four of the five eulogies.

2009-12-06T12:54:00.001-05:00

Josh Winheld's funeral will be held this Tuesday, December 8th at Reform Congregation Keneseth Israel (8339 Old York Rd., Elkins Park, PA 19027) at 11AM. Josh's family appreciates your continued support at this extremely difficult time.

2009-12-05T18:25:00.002-05:00

Today, my courageous and inspiring brother, writer of this blog, lost his battle with Duchenne muscular dystrophy, despite his strong will and great determination to keep fighting. We will keep the blogosphere posted regarding funeral arrangements. Josh's family and friends greatly appreciate your support at this difficult time.

2009-11-20T12:40:00.016-05:00

This and That

It has been a long few months for me, between working on my master's thesis and dealing with some serious cardiac issues. As a result, I never wrote some of the entries I had intended to write never. So I'd like to take this opportunity to update my readers on some of the goings-on in Winheld's World.

I visited with my friend and former neighbor, Branden, in mid-August. Despite his physical disability, he has now lived independently for more than two years, and I wanted to check out his place. Though he is several years younger than I am, we got to know each other when we used to share paratransit rides.

After being on a long waiting list, he was able to move out of his parents' home into an affordable, fully accessible apartment (see photos) in a housing development for people with physical disabilities in Philadelphia. Living on my own is something I have always hoped to do. But beside the fact that there is such a shortage of affordable accessible housing in general, it would be a bit more challenging for me because I require nursing care and cannot be left on my own. Still, I was encouraged to see that there are options out there. Meanwhile, I plan on visiting Branden again -- the guy has a fully stocked refrigerator!

In early October, I attended an engagement party for my friends Sarah and Vinny. Sarah and I have known each other since 7th grade. Sarah was the new girl in school that year and practically every guy, including yours truly, had a crush on her! I was pretty shy around girls in those day, but because she lived around the corner, I always made sure to pass by her house in case she was around. Over the years, we have remained good friends. Not only did she come up with the title for my book, but she is also the subject of a humorous anecdote in the book. So it was really wonderful to be in attendance at her engagement party. I've gotten to know Vinny over the past few years and we always seem to hit it off well. July seems like a long time away, but I hope with all of my heart that I will be there to watch them walk down the aisle together.

Finally, in recent weeks, there has been a changing of the guard with my caregivers. First, I lost my long-time evening attendant, who moved out of the area. Then, one of my nurses, who was not only a good nurse but was also available on Saturday evenings so I could get out and socialize with friends, quit in a squabble with my nursing agency.

The details really don't matter. But the point is that in the course of two weeks, I lost two really good caregivers to whom I had grown close. I'm not one to hold a grudge. I appreciate all that my nurses and aides do for me and when it is time for them to move on, I always wish them luck and hope they stay in touch.

The good news is that where one road ends another one begins. My other aide who works in the morning recommended a friend to fill my evening hours and she turned out to be extremely pleasant and dedicated. As for Saturday evenings, a new nurse that had recently come aboard offered to take those hours. I immediately agreed in light of the fact that she is an excellent nurse and we get along well. It helps that we are fairly close in age and she is also a rabid Phillies fan like I am.

Of course, training new staff requires some energy and patience on my part and unfortunately, as I have grown weaker in recent years, it has become a little more difficult. In the end, however, it's always good to see some fresh faces, especially if they are good caregivers.

2009-11-19T15:54:00.001-05:00

For Your Listening Pleasure

I borrowed my nurse's Simon and Garfunkel CD this week and I haven't been able to stop playing it! The music is like an old friend you haven't seen in many years but whose company you always enjoy.

"Mrs. Robinson" used to be my favorite Simon and Garfunkel song, but "The Boxer," seen above, has replaced it as my favorite. The lyrics seem to speak to the inner boxer in all of us, still fighting the good fight when everyone else thinks you're down for the count. My inner boxer is alive and well. Is yours?

2009-11-15T22:19:00.003-05:00

Biggest Losers

Every year, my friend Rob and I get together to watch an Eagles game -- and every year, the Eagles manage to lose, whether it be on an incredible 63-yard field goal with two seconds left or simply with an uninspired loss. Since Rob and I are such a lousy combination, we decided to get together this year with our mutual friend Marc. Turns out that we are all losers together, as the Eagles fell behind the San Diego Chargers early and were never able to recover.

But it wasn't all bad. After all, you can never beat chicken wings and cheesesteaks! Seems that in my old age, I have become quite the eater. And it was a lot of fun spending some time with my old buddies. Whenever we get together and talk sports, it's as if we are teenagers all over again, as we recount the games and players of our youth. We also had the opportunity to do something all Philadelphia fans are very good at: complain when our team stinks. But when we were growing up, the thought of seeing the Phillies win the World Series, let alone the Eagles playing in multiple NFC Championship games, was pie in the sky. Things have certainly changed on the local sports scene since then, but true friendship is always a constant. However, if you want the Eagles to win, don't let the three of us watch together!

2009-11-13T11:32:00.019-05:00

Defibrillator Dude

Since starting this blogging thing three years ago, I have met some very interesting people. Scott Sands certainly qualifies as one. Some of you reading this already know Scott, who is 43 and also blogs about living with Duchenne muscular dystrophy at Scott Sands Alive. I have learned a lot from him, from fighting for the care I need to learning how to look fashionable with a tracheostomy. Plus, it gives me hope to know that you can live into your 40s with DMD at a time when, sadly, guys with DMD are typically only living into their mid-20s at most. Scott has helped me through some tough times, usually by giving me a (virtual) kick in the ass! He also wrote a very nice review of my book.

If you haven't paid a visit, Scott Sands Alive is a must read. People think I'm funny, but Scott is hilarious. He also pulls no punches about this life that he and I and countless others live. It is a life that was in jeopardy for Scott this week, when he experienced some frightening cardiac symptoms.

As I can tell you first-hand, you can be the toughest S.O.B. in the world (and Scott is) but when it's your heart, it's a scary thing! The good news is that Scott is now an official Defibrillator Dude, having undergone successful surgery this morning to implant a defibrillator in his chest. Sounds like he will be back to blogging very soon.

Welcome to the club, my friend. May your heartbeat be regular and your shocks be few!

2009-11-10T11:09:00.004-05:00

Just a Little Bit Further

After submitting the first draft of my master's thesis a little more than a week ago, I received feedback from my advisor that was positive, but nonetheless indicated that I had some work to do. With a week to make the necessary revisions, I thought it would be no big deal.

But as last week wore on, it began to sink in just how much things had changed for me since I began my master's program in urban studies back in September of 2000. Gone was the strength and energy that had once allowed me to push everything else aside and complete my work, no matter how long it took to get things just right. Now, I have to be more vigilant about my health, which takes away from the time that I have to work. Even when I have the time, my energy often betrays me, thanks to my weak DMD heart and the medications I take to sustain it. And after getting shocked 18 times by my internal defibrillator on one very scary night in July, I had to make sure that I did not allow myself to get too stressed out! So I tried to work at a slower pace, taking frequent breaks. It was highly frustrating, but I knew that (like Red in the clip above from my all-time favorite movie, "The Shawshank Redemption") if I had come this far, I could come just a little bit further.

By yesterday, with a deadline looming and on the verge of exhaustion, nothing was going to stop me. And, if only for a moment, I was able recapture some of my old magic, pushing myself every time I wanted to take a break. Just after midnight, I submitted my paper. We'll see what happens, but it sure was nice to visit with my old self and to know he is still within me and I can channel him from time to time!

UPDATE: My advisor was impressed...my paper now goes to the rest of my thesis committee for review...

2009-10-30T11:42:00.004-04:00

Mission Accomplished

For those who have not heard, I finally finished writing my master's thesis in urban studies late last Friday night. While it is only a first draft and must go through several approvals until it is officially accepted by the university, I consider this to be a pretty momentous occasion, in light of the fact that six years ago, I had abandoned all hopes of earning my master's degree and withdrew from school. At that time, I was adjusting to life with a tracheostomy and a ventilator, along with the nursing care that accompanied it. In addition, I had begun taking a bunch of cardiac medications, which made me feel exhausted and unmotivated. In fact, I was so resigned to the fact that I would never earn my master's degree in the field that I love, I referred to my autobiography as "the thesis I never wrote."

Today, I am taking even more medications and battling fatigue -- and anxiety (caused by my cardiac scare over the summer). However, after my autobiography was published last year and I was still alive and kicking, I had decided to revisit completing my degree. Thankfully, the Department of Geography and Urban Studies at Temple University welcomed me back with open arms and gave me the chance to do so. I also had many people motivating me, particularly my friends, Art and Emma, who each, in their own way, helped me to realize that finishing my degree would be a worthwhile endeavor.

In case you were wondering, my thesis is about housing accessibility for those with disabilities in Philadelphia. My research entailed interviewing several housing developers working in the city to find out their opinions on housing accessibility requirements under the law, as well as to learn about their attitudes toward and knowledge of people with disabilities. My hope is that by talking to these developers, advocates for those with disabilities will be better able to understand the development process and can bring about a better housing situation for people with disabilities in Philadelphia, more than a quarter of whom live in poverty and many of whom are aging.

I will post further news about my thesis as soon as I hear more about it, but I will most likely be graduating in January!

2009-09-28T23:22:00.002-04:00

Breathing Easy

When you have Duchenne's, you can never be sure when your condition will worsen and in what ways. For me, I have noticed a decline approximately every 5-7 years, whether it be nutritional, cardiac, skeletal, or respiratory. When I began using a ventilator following my tracheostomy in 2002, I was able to spend at least a few hours each day breathing on my own or "sprinting". It was very helpful for transfers, bathing, and using the bathroom. I knew there was a possiblity that at some point I would be become completely ventilator-dependent.

Well, a little more than 7 years later, I am quickly nearing that point. After as little as 20 minutes, I am noticeably working harder to breathe, and my CO2 level creeps over 50 (the normal range is between 35-45). This results in headache and fatigue. My heartrate and blood pressure also increase. Fortunately, once I return to the ventilator, everything improves within as little as 10 minutes.

Though I have always been against accepting more medicine or treatment unless it is absolutely warranted, sometimes it is necessary to lose the small battles in order to have a chance to win the big war. In the end, of course, you can never defeat DMD, but I want to muster all the force that I can. So if that means being dependent on a machine 24/7, then so be it. I still have things to do and places to go!

2009-09-26T16:42:00.004-04:00

When the Saints Come Marching In...

On the eve of another NFL Sunday, I would be remiss if I did not post pictures from the Philadelphia Eagles' home opener last Sunday, which I attended thanks to a friend of a friend in a high place. On a picture-perfect day for football, my dad and I took our seats (I brought my seat) near the 30-yard line and proceeded to watch our beloved Birds go down in flames, 48-22, to the surprising New Orleans Saints.

Despite the disastrous results, it was still a great day with all the pomp and circumstance of a NFL home opener, not to mention the chance to catch up with friends old and new. Maybe without me and my dad (maybe just my dad) in the crowd, tomorrow's result will be a lot better!

2009-09-19T21:32:00.007-04:00

Catching Up

Back when I was a student at Temple University, I hired several student helpers to assist me on campus. Due varying class schedules (mine and theirs), most helped me for only a semester or two and then pretty much disappeared from my life.

So you can imagine my surprise when, a few months after writing a guest column for Temple's alumni magazine, I received an e-mail from Nicole (in the picture above). I instantly recalled how she had been one of my favorite helpers. We had lost touch shortly before graduation.

After e-mailing back and forth a few times over the past year, Nicole, who hails from New York, stopped by today to see me and to catch up on old times. Though we graduated college nearly 10 years ago, Nicole hasn't aged one bit and has the same engaging personality that made look forward to seeing her every day. We talked and talked and talked some more today (certainly no stretch for me). We took some photos and then I presented her with the very last first-edition copy of my book. Hopefully, that made her trip Worth the Ride . My only regret is that Nicole doesn't live near Philadelphia.

Have a safe trip home, Nicole. Come back to visit soon!

2009-08-16T15:14:00.002-04:00

A Small Scare

I thought I had enough of the hospital a few weeks ago when I was hospitalized for atrial fibrillation and had received 18 shocks from my internal defibrillator (ICD). But, sitting in bed on Thursday night talking to my dad, I felt my heart beating faster than it had been lately and felt certain that I was about to receive a shock from my ICD. That never happened, but my heart continued to beat at an unusually rapid rate and so I made a decision to take a trip to the hospital emergency room and get things checked out. Instead of calling an ambulance, I relied on my dad's fast, but safe driving.

Upon arrival to the emergency room no one seemed in a particular rush as they filled out the necessary paperwork. Me, on the other hand, well, I was very anxious to see what was going on with my heart. Once I was hooked up to a heart monitor, it indicated that my heart rate was higher than it had been recently but not dangerously so. Next, the nurse put an IV into the back of my hand -- on the first try! Miraculous! Blood was taken and it showed a high white blood cell count and a higher than normal level of a particular heart enzyme that is typically elevated when your heart has suffered a trauma. Based on these findings I was admitted to the hospital, where I stayed until yesterday.

During my hospitalization there was nothing unusal about my heart and doctors were never able to explain the findings in the blood work. As my blood was retested the numbers seemed to come down and no signs of any infection were detected in me. At first there was some concern that I had already become toxic with the amiodarone that I had been taking since my last cardiac scare. Usually side effects take a while to appear, which is why it was surprising that I was starting to show some side effects. In the end, though, it was determined that my symptoms were most likely not due to the medication and I was put back on it.

By 11 am yesterday I was home again. I still think it was a good idea that I went to the hospital even though it seems that everything is fine. After my last scare I'm not taking any chances of getting shocked by my ICD, so if something doesn't feel right I'm heading to the nearest emergency room. I hope this doesn't happen for quite some time!

Special thanks to Lauren for typing this entry.

2009-08-06T22:01:00.002-04:00

Back on the Horse

Nearly two weeks later, I'm still getting over my big cardiac scare. It has been difficult both physically and emotionally. But the way I figure, I'm still here and it's about time to get back to doing the things I love. Like going to Phillies games. Tickets to see the World Champions are hard to come by these days, but I was able to score a pair to today's game, featuring the debut of newly-acquired ace pitcher Cliff Lee.

The only thing hanging in the balance was the weather. But with Fox 29 chief meteorologist and my good friend John Bolaris in the house, I figured we were in good shape. And with Cliff Lee on the mound, the Phillies were in good shape, cruising to a 3-1 win over the visiting Colorado Rockies. It was the first time in five tries this season I witnessed a Phillies victory. I truly enjoyed myself and it was big step for me as I try to get back to normal.

2009-08-01T13:28:00.005-04:00

A Real Shocker!

"He said...he said it wasn't such a good day to die."

Kevin Bacon in "Flatliners" (1990)

Early last Saturday morning, I thought there was a distinct possibility that I would be blogging no more. In fact, as they say, I thought I had "bought the farm". You see, after spending Friday afternoon trying to control what I thought was a simple case of dehydration causing my heart to beat irregularly, the defibrillator in my chest decided to take action.

As I lay in bed late Friday night contemplating whether I should seek medical attention, I heard what sounded like a light bulb popping and saw a blue streak in front of my eyes. It took me a second to realize that "Oh my god, it went off!" I told my nurse to wake my parents up, and as he was exiting my room, the device shocked me again. It felt like being punched in the chest.

911 was called and within 5 minutes (although it seemed like an eternity), EMS arrived to transport me to the emergency room. Though I was really anxious of having my contracted legs injured while being transferred from my bed to the stretcher, the EMS personnel and my nurse were extremely careful. Throughout the 15-minute ride to the hospital, the defibrillator shocked me at least a dozen times. I was wondering why the device wasn't able to regulate my heart and was continuing to fire at will. I looked up at the white lights in the ambulance roof, hoping that wouldn't be the last thing I ever saw.

Upon arrival at the hospital, the first goal was to insert an IV so that medications could be given to me to bring my heart rate under control. Easier said than done with my hard-to-find veins. Meanwhile, my defibrillator was shocking me seemingly every few seconds. Just before a shock was delivered, I would feel a weird crawling sensation near my heart, which I figured was the device charging up to fire again, and the heart monitor above me would show a rate as high as 200 beats per minute. The only thing that seemed to help prevent a shock was when the nurse massaged my carotid artery.

Once an IV was finally inserted, doctors began a drip of a medication called amiodarone, an anti-arrhythmic, which began to regulate my heart. The shocks grew less and less until finally stopping. At this point, I was transferred to the ICU, where I began a weekend-long stay for observation. Later that morning, a technician from the manufacturer of my defibrillator arrived. He interrogated my defibrillator and determined that the device had been shocking me for atrial fibrillation, a serious condition typically treated by medication alone, but not nearly as life-threatening as ventricular tachycardia or ventricular fibrillation. Although devices such as mine are smart, once the heart rate reaches a certain speed, it is unable to distinguish between atrial fibrillation and ventricular tachycardia, and therefore delivers a shock. The technician adjusted the parameters of my device so that it will attempt to better distinguish between the two kinds of rhythms. A cardiologist at the hospital visited with me and my mother and explained the situation to us. They would start me on an oral version of amiodarone, see how I tolerated it, and if there were no problems I would be discharged within a day or so.

Staying in the hospital, of course, is no easy task when you have Duchenne's. To their credit, the nurses, nursing students, and respiratory therapists were extremely caring and kind. Even still, things like turning me are not the everyday situation for nurses who have never cared for someone with DMD. Although I ended up with a few aches and pains, there wasn't a whole lot that anyone could have done to prevent this. I wasn't completely comfortable with the hospital ventilator the respiratory therapists switched me to -- it was also overly sensitive and would alarm constantly -- but I made the best of the situation. Without my own air mattress I was unable to get extremely comfortable in bed, although the bed in which I lay was actually pretty state-of-the-art. Because I had no way of using a nurse's call bell (or a call bell into which I could blow), my mother spent the weekend with me, sleeping in a chair at my bedside at night. It was a good idea that she stayed with me to make sure that my complicated list of medicines was followed, and also to assist with transfers and positioning. I couldn't have gotten through this ordeal without her, as well as the other family members and friends who gave me their support at such a trying time.

By Sunday night, the anti-anxiety medication I had been taking round the clock had sufficiently constipated me. And really, no stay at the hospital would be complete without a delicious milk-and-molasses enema! Very effective, I'll tell you, but I could find a better way to spend a Sunday night.

Early Monday morning, I got the news that I was to be discharged within a few hours. After a sleepless night, I couldn't wait to get home in my own bed and sleep away my nightmarish weekend. The good news is that the medicine seems to be working and I am still here. The anxiety remains and it may take a while until I am not afraid. My life may never be the same, but like the quote above, "it wasn't such a good day to die." So I guess I'll stick around for a while!

Special thanks to Julie for helping me type out such a long entry!

2009-07-04T12:53:00.004-04:00

Independence Day?

It's Fourth of July, Independence Day, America's birthday today. Should be a joyous day -- parades, fireworks, hot dogs, hamburgers, family and friends, and Phillies baseball. But forgive me if I'm not quite feeling it.

America is one of the better, if not best, places to live in the world. I wouldn't be here without its first-rate medical care. I received an excellent education here. And I am grateful for the freedom to express myself as I am right now. But for people with disabilities, the promise of this great nation is not quite within in reach. As I write this entry, I am reminded of the great Frederick Douglass' Fourth of July speech, in which he praised the ideals upon which the nation was founded, while explaining that on this day, he could not celebrate while his fellow African-Americans were enslaved. I do not seek to compare having a disability to the cruelty of slavery, but I understand Douglass' sentiment.

In America today, people with disabilities are restricted in their ability to live independently due to lack of funding for care and inexpensive or subsidized accessible housing. Some of my compatriots are forced to live in nursing homes. Americans don't believe in handouts. Yet if people with severe disabilities like mine work, they are limited in what they can earn in order to keep from losing the nursing care that no private insurer would provide unless I were a multi-millionaire. Americans are taught as children the value of saving. And yet people with disabilities are allowed to save a pittance before they lose their benefits.

Don't get me wrong. There are much worse places I could be. I also have great hope for the future of people with disabilities in America. Just don't get bent out of shape if I'm feeling less than enthusiastic today.

2009-05-31T21:04:00.009-04:00

Ready for Some Football?

While living with DMD isn't the end of the world, I hope that one day, there will be a cure for young boys diagnosed with DMD so their muscles work and they can walk -- or even play football with their friends.

Making that happen was the goal of today's Inaugural Tournament to Tackle Duchenne Muscular Dystrophy. Under blue skies in Philadelphia's Fairmount Park, seven co-ed teams competed in two-hand touch football. A portion of their egistration fees as well as money raised from food and raffle ticket sales will go to Parent Project Muscular Dystrophy. So far, it looks like we raised about $1,200! If you would like to add to that amount, please click here.

None of this would have been possible without the hard work of my childhood friends Sarah and Ken. We would like to thank the folks at Philadelphia Sport and Social Club for coordinating the tournament, all of our sponsors, and everyone who participated, volunteered, or attended.

See you next year!

2009-04-27T14:07:00.007-04:00

Smokin' Hot!

Man, is it smokin' outside! With temperatures pushing 90 degrees here in Philadelphia over the past couple days, you'd never know it's only April. I'm not complaining, though. Due to some of my medications, I am always freezing. But not the past few days. Taking full advantage of this opportunity, I used some soon-to-be expired train tickets to head into Center City and sit in Rittenhouse Square, girl-watching and eating pizza. The next day, I decided to cruise in my chair along Kelly Drive, girl-watching again. Are you noticing a common theme here?

As for the cigarette, relax, it's only a tasteless joke -- my body is messed up enough from DMD that the last thing I'd ever do is smoke! Anyone who knows me knows I'm the most neurotic, overly cautious person who would never do anything remotely dangerous. But you have to admit, that photo would scare every teenager away from ever picking up a cigarette!

Okay, I'm going back outside -- not to poison myself, but to enjoy the sun's heat while it lasts...

2009-04-18T17:55:00.004-04:00

In a Fog

It's a beautiful day, sunny and warm, but I feel like I'm in a fog. Ever since my cardiologist increased my beta-blocker a few weeks ago to further reduce the irregular heart rhythms I had been experiencing (despite an increase in the same medication only a few months ago), I have been exhausted. And by exhausted, I don't mean very tired; I mean practically unable to function. I wake up tired and it takes me all day until I feel like myself.

The good news is that my doctor believes that I will adjust to the medication increase and be less tired. I know I adjusted the last time we increased it. And that would be a good thing, as I'm going to need all the energy I can muster over the next few months, while I complete my master's thesis and do some traveling, among other activities.

The bad news is, of course, that my heart may be getting weaker and you need a heart to, well, live! Inevitably, the heart will weaken when you have DMD. Whether that's what is happening now, even my doctor can't know for sure. Yeah, that's scary and unsettling, but I have no choice except to live to the best of my ability. After all, I could be around for a while and it would be a shame to waste even a second. To quote that noted philosopher, Ferris Bueller, "Life moves pretty fast. You don't stop and look around once in a while, you could miss it."

2009-03-17T20:03:00.002-04:00

Waiting Game

When I heard a strange sound and the lift on my van began operating erratically this weekend -- with me on it -- I knew what that meant: a trip to the repair shop. Fortunately, I was able to get an appointment today. That was a good thing, as the lift completely stopped working after I got inside the van. But that was okay because I figured that as long as I got in the van, it would be the repair shop's problem to get me out!

In these days of instant gratification, I hate to wait for things as much as the next person, but I have to say that I always meet someone interesting in the waiting room whenever I go to get the lift repaired. The truth of the matter is that no one wants to be there, sitting around waiting as time wastes away, for what figures to be an expensive bill. But aside from looking around the showroom at the equipment and vehicles you only wish you could afford, watching whatever the person who got there before you put on TV, or staring aimlessly at the wall, there's only so much you can do you. So you end up talking to other people, asking the inevitable "So, why are you here?" or "How long have you been waiting?"

But you never know where a conversation will lead or what you might learn. On one occasion, I met an engineer who taught me about some of the specifications of my wheelchair. We have actually become friends since our initial meeting. On another occasion, I met a retired law enforcement agent, and together we watched a news broadcast of the funeral of a fallen police officer.

Today, I met two Vietnam veterans. The two men did not know each other, but it was interesting to listen to their conversation. I'm not sure that I would have supported the Vietnam War had I been alive at that time, but you can't help but be amazed by the strength and encourage of the men who serve in the military during times of war. People often tell me that they couldn't imagine living my life, but let me tell you, I cannot begin to imagine the horrors that face soldiers on a daily basis, even today.

After meeting the two veterans today, even my $300 bill didn't seem like such a horror!

2009-03-04T22:37:00.006-05:00

31 Flavors

Yes, it's birthday time again! I don't how I got to be 31 years old, but even though I feel old today, I'm glad to have beaten the odds for yet another year. It will be hard to top Year Number 30, in which my book was published, I returned to school, spoke at conferences near and far, and spent time with special friends. However, I'm hoping this will be a pretty special year, so stay tuned...

After last year's birthday celebration, it was going to be a tall order to even come close this year. Fortunately, the Philadelphia 76ers are pretty tall guys themselves. As it turned out, the team was hosting a meet-and-greet for season ticketholders tonight. Below are some photos from the event.

2009-03-02T17:11:00.007-05:00

Writing Feverishly

There's nothing like a fever and a touch of a stomach virus to get the creative, uh, juices flowing. So I thought I'd take this opportunity to update my loyal readers (if any of you are still out there) on my life over the past three months...

1. I finally completed my thesis proposal. Yes, at 2 a.m. last Friday, I e-mailed it to my advisor. Essentially, I'll be conducting a series of interviews with housing developers in Philadelphia to describe their attitudes toward accessibility regulations as well as toward people with disabilities. Ordinarily, writing a proposal would not be earth-shattering news. However, six years ago, when I left school, I not only thought I would never return, but I wasn't sure how much longer I'd live. But thanks to the support of some wonderful friends (Art, Lauren, Emma, Caroline, Pat, Kathie and Julie to name just a few), I decided to go back and finish what I started (gulp) nine years ago. I'm almost there!

2. I switched nursing agencies. I cannot function without the care of nurses. So when the nursing agency I had been with for six years since my tracheotomy could no longer consistently cover my shifts, it was time to make a move. However, my nurses all came with me to the new agency, which saved me the time and stress of having to train an entire new staff of nurses.

3. I had a cardiac scare. After a couple of sleepless nights in December, with my heart pounding through my chest, I saw my cardiologist. He ordered a Holter monitor, the results of which indicated repeated episodes of ventricular tachycardia ("v-tach"), he increased my beta-blocker. As a result, I have felt colder and more tired. But no v-tach. It's a trade-off I'm willing to live with, the operative word being "live"!

4. I hired a self-publisher. My book has proven to be a big hit. Keeping it in a print is therefore a priority. About a month ago, I submitted my book to a self-publisher. The new edition should look almost the same, including the cover. The nice thing is that sales will be on an on-demand basis, meaning I won't have to manage any inventory. When everything is set up, I'll be sure to post an announcement.

So that's it in a nutshell. I'm so glad March is here already, which means that warmer weather and Phillies baseball are just around the corner...

2008-12-25T22:45:00.009-05:00

Frost/Nixon

What began as a frustrating afternoon at the movies -- no accessible parking spaces, long lines, and an automated ticket kiosk that didn't work -- proved extremely worthwhile, as "Frost/Nixon" did not disappoint. The film, which portrayed the extensive 1977 television interviews by British journalist Sir David Frost of disgraced former U.S. president Richard M. Nixon.

Not having lived through the Nixon presidency and Watergate scandal, my opinions are formed mostly from textbooks. While "Frost/Nixon" reinforced a number of my beliefs, it also challenged some of them. I could relate to Frost's situation, as depicted in the movie. I'm no famous TV personality, but whether I'm arranging nursing care, handling medical issues or coordinating publication of my book, I know what it's like to put your time, your money, or your reputation on the line and assuring those around you that everything's going to be okay, all the while having serious doubts yourself.

All in all, it was a thought-provoking, entertaining film. It was definitely worth all of the aggravation of getting into the theater!

2008-12-22T22:59:00.005-05:00

Cousins, Part Deux

Frigid temperatures and guys with DMD whose hands can't drive their wheelchairs when it's cold outside are a bit like oil and water: they don't mix. So normally you wouldn't find me out in 17 degree weather. But when it's to break bread, or in this case, rice and noodles, with rarely seen family members, I'll happily freeze my seated ass off.

That's right, tonight marked the second annual cousins' gathering. Instead of Italian, we went for Chinese this year. Regardless of the change of venue, a good time was had by all (we were missing one cousin, who is in Australia, where it's summer). Then before I knew it, it was time to say goodbye and head out into the cold. Until next year...

2008-12-08T22:52:00.004-05:00

Success!

As I've mentioned before, changing my feeding tube is something that could ordinarily be done at home, but due to some issues (see here and here) with the tube going into the wrong place, I've been having it done at the hospital, where proper placement can be confirmed by x-ray.

Today, for the first time in almost five years, I had my nurse change the tube at home in my own bed and it was a success! Sure, I had my doubts until we flushed the new tube with some water. When that didn't hurt and I felt the water enter my stomach, I knew we were in good shape. I felt some tenderness in the area near the tube, no doubt because the old tube didn't come out easily.

But I was relieved the tube change was successful. I had my nurse roll me on my side and I went back to sleep. It may have been early, but I already knew it was going to be a good day!

2008-12-03T23:42:00.001-05:00

Dream Team

For the fifth time in six years, I addressed second-year medical students at the University of Pennsylvania today. Here I am with some of the usual suspects, part of the "dream team" from the pulmonary department at the Children's Hospital of Philadelphia. In back (from left) are Dr. Jason Caboot, who is making his second appearance on Winheld's World, and Dr. Hank Mayer, who took care of me when I was hospitalized for my tracheotomy in 2002. Next to me is my friend Pat Hilferty, a fellow DMD'er who also addressed the students.

As always, it was something of a whirlwind tour, as I spoke to four classes in the course of an hour, but I thoroughly enjoyed the experience. It helped that, despite staying up late last night, my voice was very strong today. But what helped even more was that the students asked excellent questions, both medical and social. As a speaker, this showed me that they were interested, but as a patient, it showed me that these future doctors will soon join the ranks of medical professionals who "get it." After all, any good doctor, in my opinion, must ask good questions.

Of course, as those who know me will attest, even if you don't ask me questions, chances are I'll think of something to say. My legs may not work, but my mouth does!

2008-11-22T21:18:00.012-05:00

To the Summit

We all want to see a cure for muscular dystrophy, but it's important that those of us affected by the disease, patients and families alike, don't lose sight of the fact that cure or no cure, there is still a lot of life to be lived.

That's why I decided to participate on a panel of college students and graduates during a session today at a "Muscle Summit" convened by the local chapter of the Muscular Dystrophy Association (MDA). The goal was to show parents that higher education -- and employment -- are possible even with muscular dystrophy. My message was that the university setting offers a microcosm of the world, allowing many students with disabilities their first chance to experience things like independent living, employment, and social activities. I know I wouldn't be the same person had I not gone to college.

Admittedly, I haven't been involved with MDA much since I was a child, when I served as a poster child for the local chapter of the organization, attended summer camp, and volunteered at the annual Jerry Lewis MDA Telethon. As I grew older, I (and my friends with DMD) concluded that MDA was not focusing enough on the needs of the young adult/adult population.

But a few years ago, I returned to the MDA-sponsored clinic at the hospital. Meanwhile, the local chapter has made an effort to reach out to adults like me. I've been receptive because I believe that if you're not willing to be part of the solution, you may be part of the problem.

So today was a first step for me. I think it went well. If asked to participate in next year's Muscle Summit, I will gladly do so.

2008-11-18T19:19:00.004-05:00

You Want a Piece of Me?

The University of Utah said they did -- want a piece of me, that is. A piece of skin from my upper arm to be specific. You see, I am part of a genetic registry of people with DMD, maintained by the university (I gave them some of my blood a while back). Apparently, I am part a relatively small subset of the DMD population. Researchers are studying a possible intervention (in the very, very early stages) for that subset and required skin cells for said study.

So today, I paid a visit to my dermatologist, who performed a skin biopsy known as a skin "punch". The procedure took less than five minutes. First, a nurse injected my arm with a local anesthetic. Then the doctor, using a cookie cutter-like instrument removed a piece of skin the size of a pencil eraser. Finally, he closed the small wound with a dissolvable stitch. Now, I've often heard doctors say, "This won't hurt at all." But let me tell you, other than the needle, I didn't feel a thing. In fact, if I hadn't watched the doctor, I never would have known he had just removed a piece of my skin!

When I was initially contacted by the university, I agreed without hesitation, even though it meant giving a part of myself to something that almost certainly will never directly benefit me. Naturally, I was asking myself what I had gotten into when the nurse rolled up my sleeve and prepared that syringe! But it felt like the right thing to do. I would never say that my existence is a miserable one, but if I could help someone avoid the challenges I have faced and continue to face in my life, I'd do it every time. Even if I have to give up some of my precious skin!

2008-10-31T22:15:00.003-04:00

Phinally!

After 25 years, a parade down Broad Street to celebrate a championship by a Philadelphia sports team -- and I was there, along with 2 million of my closest friends!

No way was I going to miss this opportunity, even if I couldn't catch a train due to the sheer volume of riders heading to the parade. I wasn't about to give up. After all, did the Phillies ever give up when they looked to be down for the count this season? I think not.

We got on an empty Schuylkill Expressway and cruised into Center City, where we found parking just a couple of blocks from the parade route. But that was only the beginning of my good fortune. As I made my way through a huge crowd outside City Hall, I came across a city employee, who got me inside the building and found a property manager, who took me to several offices until I found a good vantage point.

I ended up viewing the parade from a second-floor window of the Prothonotary Department, where the employees couldn't have been any nicer.

What a great day to be a sports fan in Philadelphia!

2008-10-29T22:56:00.002-04:00

We Are the Champions

Since becoming a sports fan 15 years ago, I've been waiting to be able to be play that song after watching one of Philadelphia's four major professional teams win a championship. Tonight, with the Philadelphia Phillies winning the World Series, I finally had that opportunity.

I honestly cannot believe it actually happened -- after all, there had been no championships in Philly since 1983. Like most fans here, I had grown up with the expectation that somehow, some way, we would lose. There were some tense moments in the Fightin' Phils' 4-3 victory over the Tampa Bay Ray in game 5 of the Series, but when it was all over, I felt a sense of satisfaction I had never felt as a sports fan.

Friday, I'll be celebrating with more than 1 million of my closest friends, as the city hosts a parade for its baseball heroes. It should be a wild party!

2008-10-20T22:55:00.012-04:00

Center of Attention

No, I didn't get any phone numbers from the Philadelphia 76ers Dancers surrounding me in the picture above, but it sure was nice to have so much female attention even if only for a few seconds.

If their dance squad is any indication, this is going to be a great season for the Sixers!

Speaking of Philadelphia's NBA team, tonight I had the opportunity to meet players and other members of the organization, such as General Manager Ed Stefanski, Assistant Coach Jim Lynam, and rookie Marreese Speights (at right), at a taping of the "Meet the Sixers" program that will soon air locally on Comcast SportsNet.

Sitting in the mostly empty Wachovia (perhaps soon-to-be Wells Fargo) Center, it was great watching the highlight reels, especially of the 1983 championship team, with Dr. J, Moses Malone, and current Sixers Head Coach Maurice Cheeks. Maybe someday soon, we'll see the streets of Philly packed like they were to celebrate the Sixers victory over the Lakers.

Until then, I'll just revel in the glory of my moment with the Sixers Dancers!

2008-10-18T23:52:00.008-04:00

Breathe Easy

I remember some of the misconceptions I had about tracheostomies before I got one six years ago -- that I would be more prone to infection, unable to speak or eat easily (if at all), that the trach would be painful, that it would drastically alter my way of life.

So as I addressed a group of parents whose children have trachs, today at a conference sponsored by the Pediatric Airway Program at the Children's Hospital of Philadelphia (CHOP), I did my best to allay their concerns as much as possible, although every situation is obviously different from mine. I must admit that, despite the fact that I am still a patient at CHOP (pictured above with me is my otolaryngologist, Dr. Karen Zur), I was worried that my experiences might not translate very well to the experiences of parents with infants or young children with trachs. However, it isn't always possible for such parents to know how things like suctioning or changing a trach feel from their children, who cannot communicate on an adult level. No parent wants to subject her child to pain, so hearing from me that say, changing my trach doesn't hurt, is important.

Look, no one would choose to have a trach if it wasn't necessary. It was never something I really wanted and if there were a realistic option, I would have it taken out. However, I doubt that I would be here today had I never gotten a trach. With it, though, I am able to enjoy a pretty decent quality of life. At the end of the day, that's really all that matters.

2008-10-14T20:27:00.009-04:00

Coming Attraction

Thanks to the tighter turning radius of my (relatively) new wheelchair, I've been able to avoid harrowing episodes boarding Southeastern Pennsylvania Transportation Authority's (SEPTA) regional rail trains like I experienced last summer. Still, it isn't that easy to board the 40-some-year-old trains, which must be entered at either end, requiring me to make a sharp turn to enter the seating area. The doorways are barely wide enough and the thresholds difficult for a wheelchair to climb.

But that's all about to change. Today, I had the opportunity to board a mock-up of one of SEPTA's fleet of 120 new Silverliner V cars (pictured above, courtesy of Steve Ives, contributing writer at Phillyskyline.com), and I was impressed, to say the least. Boarding the side-entry car was a snap. A SEPTA employee had to put down a ramp to bridge the gap between the platform and the car, but this apparently won't be necessary when the new fleet is phased into service late next year. But the doorways were nice and wide. Once inside, there was a dedicated wheelchair seating area, with a fold-away bench seat. I was told that there will also be tie-downs as well.

While SEPTA's current train cars may claim to be wheelchair-accessible, the new cars truly will be. Then, if I run my nurse over while boarding the train, it can be concluded that I am simply a lousy driver!

2008-10-06T16:12:00.002-04:00

I'm Back

You may have noticed that I have not posted anything for quite some time. I'd like to assure everyone out there that I am fine. Over the past few weeks, I've had every intention of posting something, but life got in the way, so to speak.

First, there were some scheduling changes with regard to my nursing care. It goes along with the territory when you live this life, but without a stable nursing situation, it can be quite challenging. In the course of training a new nurse, I discovered that using the toilet can be risky proposition, as I was dropped not once but twice while being lowered onto the throne with my Hoyer lift. My tailbone and hip aching, I promptly dropped her -- from my schedule. I am supposed to meet another recruit this week, so we'll see how that goes...

Second, the change of season is wreaking havoc on my body. I haven't adjusted yet to the cooler autumn weather, so I've been extremely cold and tired. This happens to me every year, so I know that I will feel better soon.

Finally, although it isn't easy to get a whole lot done at less than full strength, I have been trying to make some headway with my master's thesis, in the hope that I might actually finish the thing this century!

So that, in a nutshell, is why you haven't heard from me in a while. If my research starts to pick up, my posts may be less frequent, but I will continue to share my life and to offer hope and advice to those dealing with Duchenne's, so please, keep up the comments and e-mails.

Before I conclude this post, I'd like to give a shout out to my beloved Philadelphia Phillies for making it to the National League Championship Series for the first time since 1993, and to my good friend Art, who just relocated to Southern California from Philly to take an exciting position. I wish him the best of luck and thank him for proving that DMD is no match for someone with courage and determination.

2008-09-07T19:39:00.004-04:00

Fly Like an Eagle

With the way they played in their season opener today, maybe I should start attending Philadelphia Eagles games more often. Thanks to quarterback Donovan McNabb, dynamic rookie receiver DeSean Jackson, and a host of others, the Birds launched an aerial assault against the St. Louis Rams, defeating the visitors, 38-3.

Great weather, great seats, great game -- what more could you ask for? I only hope this is the start of a great football season here in Philly. Time will tell.

GO EAGLES!!!

2008-09-01T23:45:00.003-04:00

Catch Me On Sirius Satellite Radio!!!

Catch me this Wednesday, September 3rd from 8 am – 9 am EDT on “Doctor Radio” on Sirius Satellite Radio, channel 114, where I'll be talking about my book and about living with Duchenne muscular dystrophy.

If you don’t have Sirius, don’t worry. Listen online by signing up for a free 3 day trial .

2008-08-23T21:01:00.006-04:00

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!

2008-08-22T23:57:00.007-04:00

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...

2008-08-09T21:30:00.005-04:00

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!

2008-08-06T23:59:00.004-04:00

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!

2008-08-05T22:25:00.005-04:00

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!

2008-08-01T20:47:00.006-04:00

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!

2008-07-22T20:45:00.005-04:00

Visitors!

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!

2008-07-20T15:34:00.000-04:00

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.

2008-07-19T23:59:00.014-04:00

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.

2008-07-18T23:52:00.012-04:00

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!

2008-07-17T22:41:00.009-04:00

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.

2008-07-16T20:23:00.001-04:00

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!

2008-06-25T20:54:00.007-04:00

British Invasion, Part 7: Gotta go to Mo's!

It all began one day last March with an incredibly moving comment left on my blog by a young woman in England named Emma grieving the loss of her fiance to DMD. E-mails, instant messages, and webcam conversations ensued, and we quickly became the best of friends. Soon after, Emma met Gary and I became friends with him as well. Not long after, Emma and Gary began making plans to visit me here in Philadelphia. This is part 7 in a series chronicling their visit...

What would a trip to America be like without a visit to...Walmart! Yes, my friends insisted that they would not leave the country until they had been to Walmart, so that was our destination today. They found a few bargains there, but they seemed to enjoy Modell's Sporting Goods even more. Now, when they return home, they'll be able to start a sports fashion trend with their Phillies gear. That, and they'll be singing that catchy "Gotta go to Mo's!" jingle in an English accent!

Our final stop was for lunch at Wendy's. In America, we have the fast-food holy trinity of McDonald's, Burger King, and Wendy's. Apparently not so in the U.K., where there are no Wendy's. Let's just say my English mates enjoyed their BIG meals!

Then, it was time for my friends to pack their bags. I couldn't let them leave without sampling one more Philadelphia delicacy: the Italian hoagie, so I ordered a couple for the road.

Saying goodbye was not easy. The past week was the greatest week of my life. Although I was home, it felt like a vacation. Now, it's time for life to return to normal. But there's always next year, right Emma and Gary?

2008-06-24T22:48:00.006-04:00

British Invasion, Part 6: Tuesday in the Park

2008-06-23T22:46:00.006-04:00

British Invasion, Part 5: It's Comcastic!

It all began one day last March with an incredibly moving comment left on my blog by a young woman in England named Emma grieving the loss of her fiance to DMD. E-mails, instant messages, and webcam conversations ensued, and we quickly became the best of friends. Soon after, Emma met Gary and I became friends with him as well. Not long after, Emma and Gary began making plans to visit me here in Philadelphia. This is part 5 in a series chronicling their visit...

Can you believe that's a giant high-definition video wall in the lobby of the newly-opened Comcast Center? That was the first stop on our tour of Center City Philadelphia today. Called the "Comcast Experience," the wall measures 83 feet wide by 25 feet high.

After experiencing that, we made our way down John F. Kennedy Blvd. to LOVE Park, where Emma and Gary got a photo with Bender from "Futurama". Crossing the street, we went through the courtyard at City Hall, the largest masonry building in the world, which took 30 years to build!

Next we made a quick detour at Dunkin' Donuts. There's one on pratically every block in America, but apparently none in the U.K., so my friends just had to try one of DD's iced coffee concoctions.

Then we went to the Loew's Hotel, formerly the PSFS bank headquarters. and took an elevator up to the 33rd floor, where we caught a breathtaking view of the city.

Our final destination on this day was the historic Reading Terminal Market, where I introduced Emma and Gary to that famous Philadelphia delicacy, the cheesesteak, at Spataro's It was love at first bite. Even I, cheesesteak connosieur that I am, have to admit it was one of the finest sandwiches I have ever consumed.

Before signing off for the night, I'd like to give a shout goes out to Brad over at PhillySkyline.com for his assistance in putting together today's itinerary.

2008-06-22T22:43:00.005-04:00

British Invasion, Part 4: Meet, Greet...and Eat

2008-06-20T23:59:00.006-04:00

British Invasion, Part 3: Take Me Out to the Ballgame

It all began one day last March with an incredibly moving comment left on my blog by a young woman in England named Emma grieving the loss of her fiance to DMD. E-mails, instant messages, and webcam conversations ensued, and we quickly became the best of friends. Soon after, Emma met Gary and I became friends with him as well. Not long after, Emma and Gary began making plans to visit me here in Philadelphia. This is part 3 in a series chronicling their visit...

When I first began exchanging e-mails with Emma and I told her about my love of sports, she expressed a desire to see a "proper" baseball "match" one day -- and to eat a hot dog while doing so. I promised her that if she ever made her way to Philadelphia, I would take her to a game and get her that hot dog. Well, she did, and tonight, I did!

With a clear sky, pleasant breeze, low humidity and temperature near 80 degrees, you couldn't ask for a better night for baseball -- except for a Phillies win! On the Sound of Philadelphia Celebration night, the game began on a sour note when old Phils' nemesis Vladimir Guerrero stepped to the plate in the top of the first and impaled the hometown team with a two-run homerun. It didn't get much better, as the Phillies offense could not muster much against Angels' pitcher Ervin Santana and the Angels hammered the Phillies' pitchers all night. It wasn't pretty.

The final score was 7-2. Normally, I would have been less than pleased about that. But my English mates had a great time and that was really all I cared about. "Hey, at least you got to see how the game is played," I told them.

"Yeah, the Angels showed how the game is played!" said my nurse.

All in all, though, it was a fun evening. And, of course, Emma got her hot dog!

With my friends headed to New York City tomorrow, Winheld's World will take a break. See you Sunday...

2008-06-19T23:39:00.006-04:00

British Invasion, Part 2: Shop (and Eat) 'Til We Drop

It all began one day last March with an incredibly moving comment left on my blog by a young woman in England named Emma grieving the loss of her fiance to DMD. E-mails, instant messages, and webcam conversations ensued, and we quickly became the best of friends. Soon after, Emma met Gary and I became friends with him as well. Not long after, Emma and Gary began making plans to visit me here in Philadelphia. This is part 2 in a series chronicling their visit...

When I got up this morning, Emma and Gary had already been up for five hours! So they were more than ready for our first expedition -- to the King of Prussia Mall. To give you an idea of how much I love shopping malls, it took visitors from 4,000 miles away to get me to go to the largest mall on the east coast.

As I was a King of Prussia mall virgin, we met up with my friend Kimi, the "queen" of King of Prussia, who knows everything there is to know about that mall. We sent Kimi, Emma and Kimi's nurse on their merry way, and Gary, my nurse and I went shopping for manly stuff -- electronics, sporting goods stores, etc.

We all reconvened a few hours later at The Cheesecake Factory. This was also first visit for me, and I'm afraid it might not be the last! At least I won't have to cross an ocean to get there. Emma, a self-professed cheesecake lover, on the other hand, will! Let's just say that we all ate well. My English mates couldn't believe the portion size of our meals. The only negative part of the day was that the unfinished slice of chocolate cheesecake that I took with me melted on the ride. Thank you, Philadelphia in the summertime!

2008-06-18T22:26:00.005-04:00

British Invasion, Part 1: The Big Day

It all began one day last March with an incredibly moving comment left on my blog by a young woman in England named Emma grieving the loss of her fiance to DMD. E-mails, instant messages, and webcam conversations ensued, and we quickly became the best of friends. Soon after, Emma met Gary and I became friends with him as well. Not long after, Emma and Gary began making plans to visit me here in Philadelphia. This is part 1 in a series chronicling their visit...

I woke up this morning, excited that after 10 months of anticipation, I was finally going to the airport to pick up my friends. It was a good thing I got there early because the short-term parking lot closest to the international terminal could not accommodate my van's raised roof. We had to park two terminals down!

As I sat there in the international arrivals area, I started getting nervous. I had known Emma and Gary for many months and talked face-to-face with them via webcam, but would it be awkward when I actually met them in person? When they emerged through the sliding glass doors and Gary waved at me, I felt relief and excitement. My nurse and I went over to greet them and it wasn't awkward at all. We started talking and it was like we had picked up right where we had left off. As we headed for the van, they recounted being detained by customs over a box of strawberries!

We took the long way home to avoid traffic and to show off some of my favorite places in the city, like the boathouses along Kelly Drive. As we drove along, my friends munched on authentic Philly soft pretzels. I even remembered to bring mustard!

"These pretzels are fantastic!" Emma exclaimed. "We don't have anything like them in England." Indeed. Neither does the rest of the United States!

When we got back to my house, my friends were exhausted. It was 5 p.m. in Philadelphia, but 10 p.m. in England, after all. I was amazed that they were able to stay up at all, but they made it until about 8 p.m. I hope they sleep well because we have a busy day ahead of us!

2008-06-15T22:49:00.008-04:00

Father's Day Feast

Last year, my father and I began an annual tradition of spending Father's Day together. Instead of throwing our money away at the casinos in Atlantic City, as we did last year, we stayed closer to home and went out to lunch at a restaurant specializing in Russian cuisine. It was only fitting, in that my father has introduced me to all kinds of foods over the years.

We spent the rest of the afternoon at home in front of the TV, watching the Phillies -- something else that my father introduced me to many years ago. Unfortunately, they literally threw the game away, thanks to a fielding error by Tom Gordon and lost to the St. Louis Cardinals, 7-6. Just as Father's Day is an annual tradition, so too is losing in Philadelphia!

2008-06-09T17:56:00.002-04:00

Like Old Times

Not unlike many other people, the beginning of college was an awkward time for me. I wasn't sure what people would think of me. I found out on the first day of my first class (physics) as an undergraduate at Temple University (physics), when a pretty girl came right up to me and introduced herself. Not exactly something that happened to me every day! Her name was Krysta and it turned out that she was a student in the same department as I was. What impressed me most was that she didn't even seem to notice my wheelchair.

I don't remember a whole lot from that physics class, but I do remember all of the conversations I had with Krysta about the Philadelphia Flyers. We stayed friendly after that semester, but soon after graduation, we lost touch.

When I was writing my book, I was able to reconnect with Krysta, who had moved across the country, and interview her. We've stayed in touch since. Today, after nearly eight years, we met in person, and it was just like old times, only without any annoying professors interrupting us because it was time for class to start!

I know I had a wonderful time. I just hope it isn't another eight years before we meet again because I'll be seriously old by then!

2008-06-07T23:46:00.003-04:00

In Memorium

My life would not be what it is if not for my family and friends, so it was with great sadness to learn a few weeks ago of the passing of my great-uncle, Francis Winheld. Tonight, I attended a memorial service commemorating his life. Gregarious and full of life, my uncle cared about the important things -- his family and friends, his faith and his community. He also knew how to cook a tasty pot of mussels, a fond childhood memory of mine from summers spent at the Jersey Shore.

Having dealt with various health issues, he gave back by visiting hospital patients going through similar ordeals, including yours truly. I guess you might even say that my uncle and I were cardiac buddies! When I had my defibrillator implanted three years ago, I didn't know anyone else with one -- except for my uncle. Not long after the surgery, he hopped a plane from California and was with me as I celebrated my 27th birthday.

Just a few months ago, he surprised me at my book signing. Above is a picture from that day of my uncle, my aunt, and me. That was the last time I ever saw my uncle. If he had not made the trip I would not have had the opportunity to see him. Amazing how life works.

2008-05-31T23:59:00.021-04:00

Wedding Bells

When my friend Rob, whom I have known since I was three years old, told me he was engaged a year ago, he made me promise I would be there for the wedding. Although it meant a 2 1/2 ride each way to and from Annapolis, Maryland (picture below), I made good on that promise tonight.

It was well worth the trip. I'm not much of a wedding person (I am a guy, after all) but it was pretty cool to see my oldest friend get married. I don't think I have ever seen him so happy. And who wouldn't be with a wife as sweet as Trish? I've only met her a few times, but I already consider her a friend, especially after tonight. The way I figure, if the wife of friend wipes food from your face so you don't look foolish in a photo (the one above), then she is your friend too!

The happy couple are now headed to Greece, where they will hopefully get a chance to relax after all of the wedding excitement.

Congratulations, Rob and Trish!

2008-05-24T22:05:00.005-04:00

Sky's the Limit

People with Duchenne's are living longer and doing amazing things. My friend Art is a perfect example. Art just received his PhD in astrophysics. Quite an accomplishment for anyone, let alone someone with DMD and a visual impairment. Incredibly disciplined, nothing would deter him. After getting his trach he went right back to his studies, even living on his own.

Though I've known Art for probably 20 years -- we went to camp and college together -- it wasn't until we both got trachs that we became close friends. While it was certainly nice to be able to trade medical war stories, we found that we had a lot in common. Since then, we have gone to baseball games, orchestra concerts, "walks" in the park, restaurants, and we have talked on the phone regularly.

Things are going to change, though, as Art will be moving to California for work. It will be a challenge for him, but if there's anyone who can do it, Art would be the one. I wish him the best of luck...

2008-05-21T21:34:00.007-04:00

Back in Town

No rest for the weary! Fresh off my Canadian adventure, I was at Children's Hospital of Philadelphia today, addressing pulmonary nurses at a continuing education session, just as I did back in October. What can I say? I'm just a popular guy!

After my talk, I had a chance to visit the hospital floor where the nurses to whom I spoke work. It was close to the one on which I stayed in the days immediately prior to my tracheotomy in 2002. As far as hospital floors go, it was nice, but I'm hoping I never have to stay there! When a group of doctors on rounds walked by me, I said to the leader of the group, "I'm not staying!"

No, after all of the excitement of my trip over the weekend, I'm not planning on staying anywhere other than home for a while...

2008-05-17T23:19:00.003-04:00

Oh Canada! Part 3

It was a good thing that I arrived a few minutes early for my talk today at the American Thoracic Society conference because as I was sitting there outside of the room with my parents, one of the doctors suddenly burst through the doors and told me, "You're on!" Apparently, he was having some technical issues with his presentation, so the stage was now mine.

As I drove up the aisle toward the front of the room, all eyes were on me. I hoped I was driving straight, as I am still learning how to drive this new chair of mine! At the podium was my pulmonologist, who was introducing me. As I got closer to the front of the room, I saw my neurologist sitting in the audience. And when I got to the front of the room, I saw my former pulmonologist, who had saved my life by ordering my trach almost six years ago. I had not seen him in a few years, as he had moved to another city.

Then it was showtime. As my doctor held the microphone for me, I took the audience through a PowerPoint presentation containing pictures of me at various points in my life. Time was limited, so I had to be to the point, which actually helped me get into a rhythm. At the end of my presentation, I wanted to make a few medical points. After all, this particular course was about respiratory considerations in neuromuscular disorders (and I certainly have one). This was my opportunity to deliver a message to the doctors, respiratory therapists, and others in the audience.

I told them that it is important to never forget that patients are unique. Before I got my trach, I was under the assumption that at some point, in order to keep living, everyone with DMD got a trach. I have now learned that this is far from the case. There are men with DMD much older than I am who use non-invasive ventilation and have for years. On the other hand, there are doctors who will tell you that no one with DMD should have a trach. This is the wrong approach, in my opinion.

I also got into some of the social issues that may dictate treatment plans. When I got my trach, one of the benefits was that I qualified for nursing care for 16 hours a day. At that point, I was pretty much unable to physically do anything for myself. If I had my trach removed now, I would only qualify for attendant care. There's nothing wrong with that, but I could not get more than a few hours a day.

Then I took some interesting questions from the audience. It was pretty cool that people had to step up to microphone to ask me questions! I brought down the house when a doctor asked me for any advice I would give him about caring for patients like me. "Well, first, buy my book..." I told him.

I was also asked about my ability to speak so well and I told the story about how it only took me 10 minutes to start talking after my trach surgery. There's no shutting me up!

After a quick lunch with my doctors, I decided to do a little more sightseeing, visiting the Hockey Hall of Fame, only a few blocks from my hotel. I was happy to see plenty of Philadelphia Flyers memorabilia. My parents and I posed for a picture with the Stanley Cup. Hey, the Flyers may not get to take a picture with the Cup any time soon, but at least I did!

Later in the evening, my parents, nurse, and I got together with my former pulmonologist and his family. I presented him with a personally autographed copy of my book, which was an emotional moment for me. I had been through so much with this doctor. He had never given up on me even when I was in bad shape, and thanks to him, I was able to write my book.

Then, it was time for dinner. We had, of all things, Tex-Mex! In Canada? Well, it certainly didn't stop me! I figured, I'm going home tomorrow, so I might as well pack it in because I probably won't have time for any big meals tomorrow while we're on the road.

Enjoy the slideshow. Talk to you when I get back to Philly...

2008-05-16T23:04:00.006-04:00

Oh Canada! Part 2

Despite forecasts of rain, the sun was peeking through the clouds when I woke up this morning. That made it easier to motivate myself to get out of bed (or rather, to have my nurse get me out of bed) and ready myself for a day of sightseeing. It didn't matter that my back and legs were aching after yesterday's long ride; I wasn't about to sit inside my hotel room.

Although the temperature outside eventually reached the upper 60s, (that's in Fahrenheit, by the way; I did a double-take last night when the meteorologist on TV said that today's high would be 19 -- Canada uses Celsius, of course) it was a bit chilly for me when we left the hotel, and I had trouble controlling my chair because my driving hand was cold.

Our first stop was the 1,800-some ft. CN Tower, Canada's "most recognizable and celebrated icon." Though my mother and my nurse chickened out, there was no stopping my father and me, and we took an elevator over 1,400 ft. to the observation deck. It was a little hairy for us when the elevator began its ascent into the sky, but after a few seconds, it was better. Halfway up, I wondered to myself, "Gee, I wonder if being up this high is a good thing for my ventilator?" Then I thought about people living on ventilators in places at high altitudes such as Denver, and the fact that ventilator technology was originally designed for astronauts. So I figured I'd be fine.

When we got to the top, the last thing I was thinking about was breathing. I was too busy taking in the spectacular views of this city of five million people. From inside, the views were great. But I wanted to get outside to check out that view and feel the wind in my face.

After descending from the heavens, we decided to take a tour of the scene of the crime, a.k.a. Rogers Centre, formerly known as the SkyDome, home to Major League Baseball's Toronto Blue Jays. If you're not from Philadelphia, I call the stadium "the scene of the crime" because it is where the 1993 Phillies' magical season came to a crashing halt following Joe Carter's World Series-ending homerun off of Mitch "Wild Thing" Williams.

Still, the 20-year-old Rogers Centre is something of a wonder, as the first stadium with a fully-retractable roof, so I figured it was worth a visit, and indeed it was. Although I just had to give our tour guide a hard time when we passed by a portrait on the wall of Carter after his infamous shot, I found the tour extremely informative. We got to see the media center and one of the stadium's luxury boxes, but the best part of the tour was when we got to go onto the field. This was only possible because the Blue Jays were out of town (in, of all places, Philadelphia) and because a concert there tonight had been canceled. Pretty cool!

After resting my back and legs for a couple of hours back at the hotel, it was time to do something I have been doing very well lately: eat. For that, we took a drive over to the city's Greektown section, where we had, well, Greek food! After some chicken souvlaki action, I'm so stuffed that tonight, I'm going to have to cut back my tube feeding.

My talk at the ATS conference is tomorrow morning, so I'm going to get some rest. Hope you enjoy today's slideshow...

2008-05-15T23:53:00.005-04:00

Oh Canada! Part 1

Nearly a year ago, my pulmonologist asked me if I would be willing to accompany him and give a talk at the 2008 American Thoracic Society (ATS) International Conference that was to be held in Toronto. I said that sounded great, but at that point, it seemed like an eternity until May. But time flies when you're having fun -- or if you are busy getting a book published -- and today, my parents, nurse, and I embarked on our journey into Canada.

As we pulled out of the driveway, I had the typical sinking feeling you get when you're worried about forgetting something. Between my nurse and I, though, I don't think we forgot anything. I've probably had about a thousand nightmares about driving all that way, getting to the border, and finding that we had forgotten our passports. But they were practically the first things in the van -- that and my CDs and CD player and some snacks for the road -- I mean, hey, who cares if you forget your backup ventilator? As long as you have music and snacks, you're good to go! Of course, if you saw what the inside of the van looked like after everything was packed, you would know I was kidding. Pretty much everything from my bedroom was in that van by the time all was said and done.

We hit the road shortly after 8 a.m. The TripTik my mother had ordered from AAA said the trip would take 7 1/2 hours. It lied! Over nine hours and 490 miles later, we pulled up in front of our hotel. Admittedly, we did stop briefly a couple of times, and we did run into some traffic outside of Toronto, but I am still a bit skeptical of AAA's calculations.

Exhausted and stressed out from the ride, however, I was delighted to find out that the hotel accommodations were exactly as I had requested. The hospital bed that I had ordered was perfect and the accessible bathroom was large enough to accommodate my Hoyer lift. Satisfied with the hotel, my parents and I decided to grab a somewhat late dinner at a nearby Italian restaurant. The food was very good and the place reminded us of home because not only was one of the TVs at the bar set to the Flyers playoff game, but the other TV was tuned to the Phillies game!

I'm looking forward to getting out tomorrow and seeing some more of this city. For now, though, I leave you with a slideshow of the view outside my hotel window...

2008-05-09T23:58:00.001-04:00

Flyered Up

One of the great things about sports is their ability to bring people together. When I was a teenager, I didn't have much of a social life, but I could always talk with friends and classmates about all that was going on in the sports world. When there was a major sporting event on TV -- Super Bowl, NCAA Tournament, etc. -- my friends came to my house.

I'm a lot more socially active these days, but watching sports continues to be a social event for me. Tonight, I met some friends at a sports bar to watch the Philadelphia Flyers take on the Pittsburgh Penguins in the NHL's Eastern Conference Finals. Above, I am with (from left) Susan, Marc, and Rob. We had fun, but the game left a lot to be desired -- unless you were a Penguins fan.

Some things never change -- Philly teams still let me down!

2008-05-07T19:38:00.000-04:00

Down by the River

As I have said on more than one occasion on this blog, one of my favorite places in Philadelphia is the trail along Kelly Drive (and the Schuylkill River). Well, with the beautiful weather today, I decided to take my first walk (drive) of the season there.

Turns out that I had company today, as preparation was underway for the upcoming Dad Vail Regatta this weekend. That meant workers setting up tents and rowers getting in some last-minute training, as you can see in the picture above.

I didn't spend a whole lot of time out on the trail today, as I'm still not used to being in some much after spending most of the cold-weather months indoors. That, and I was really hungry. So my nurse and I stopped by an Italian restaurant on the way home and chowed down!

2008-05-01T17:04:00.003-04:00

"Penn"ing My Name

One of the reasons I wrote my autobiography was to help the medical professionals and students who take care of those of us with DMD better understand what it is like to have this disease. So I was extremely excited about my book signing today at the University of Pennsylvania bookstore, located near Children's Hospital of Philadelphia, and the Hospital of the University of Pennsylvania.

With many familiar faces in the audience -- doctors, nurses, physical therapists, social workers, medical students -- I read excerpts from my book. Afterward, I signed books (with assistance, of course). It was an extremely successful event -- one person even bought 10 books!

2008-04-29T23:06:00.002-04:00

Come, and Bring a Friend

BOOK SIGNING AND DISCUSSION AT UNIVERSITY OF PENNSYLVANIA

Hear me read excerpts from my autobiography, Worth the Ride: My Journey with Duchenne Muscular Dystrophy. I'll take questions and sign books.***

Thursday, May 1, 2008
12 p.m. - 1 p.m. (I will likely be there longer)
University of Pennsylvania Bookstore
3601 Walnut St. - University Sq.
Philadelphia, PA 19104
(215) 898-7595

Hope to see you there...

***All proceeds from book sales are being donated to Parent Project Muscular Dystrophy, a not for profit organization founded in 1994 by parents of children with Duchenne and Becker muscular dystrophy. This organization is dedicated to helping improve the treatment, quality of life, and outlook for the individuals affected by this disease.

2008-04-26T23:56:00.002-04:00

Stanley Cup, Baby!

Well, not quite -- there's still a long way to go, but it's hard to hide my excitement over the Philadelphia Flyers' current playoff run, especially after tonight's thrilling 4-2 victory over the Montréal Canadiens.

Instead of watching the game at home, I decided to catch all of the action at a local sports restaurant, accompanied by my nurse and by my sister, Amy, and her boyfriend, Craig. As you can see from the picture above, I wasn't crazy enough to put an orange cardboard helmet on my head, unlike my companions.

We were able to get a table because there was only one section that was wheelchair accessible. The table we got happened to be almost directly in front of the TV! (Hey, who says that being in a wheelchair doesn't come with a few perks?)

It was a lot of fun cheering on the Orange and Black with my fellow Philly faithful. It was certainly more fun than hearing my own voice when I cheer when the Flyers score. Plus, I got to see a few things I don't usually see -- like the little girl at the next table, who probably wasn't more than six years old, grabbing her daddy's beer bottle, taking a swig, and seemingly enjoying it! "Startin' her young!" Her old man said to me when he saw me laughing.

After my dining companions departed, I remained to watch the final period of the game, though I had to move into an indoor tent area, where I parked myself in front of the bar. Sure, the noise was deafening and other patrons sometimes blocked my view of the TV, but all that mattered to me at that point was whether my team would win. When the Flyers scored their final goal, the place erupted with joy. That made it all worth it.

If I go there to watch another game, however, I might not wear my #88 Eric Lindros jersey, as I took quite a bit of good-natured ribbing from a few patrons. Hey, can I help it that the guy is persona non grata in Philly? It's a nice jersey and I'm not getting rid of it any time soon!

2008-04-22T22:52:00.002-04:00

Back for More

I was such a hit last April when I addressed two classes of first-year medical students as part of their Doctoring course at the University of Pennsylvania that I was invited back this year.

As was the case last year, the topic of discussion was my experiences and feelings as a person with a disability, particularly when interacting with the medical world. My favorite question was what people do wrong when meeting people in wheelchairs. In my opinion, people get carried away worrying what to say or how to act. If you mean well, I'll give you the benefit of the doubt.

But I implored the students, "Unless you have a death wish, never grab someone's hand when it is resting on the controller of a motorized wheelchair!"

It was also great fielding questions about my book, now that I am a published author. I guess I'll have to come up with something even better for next year.,.

2008-04-17T22:20:00.000-04:00

And Here's the Pitch...

How do you like my nurse's picture of Phillies' pitcher Brett Myers after delivering a pitch to home plate?

As I have said before, the baseball season doesn't officially get underway until I make my first appearance at a Phillies game. With temperatures in the low 80s and a clear blue sky here in Philadelphia today, I couldn't think of a better day for baseball. It turned out to be an even better day, as the Fightin' Phils belted four homeruns and crushed the visiting Houston Astros, 10-2.

The first game I attend each year is always a bit emotional for me, as I never know if it will be the last season for me. Six years ago, when I began seeing my current cardiologist, I told him that I was hopeful to be able to attend a game at the Phillies' new ballpark, then under construction. Well, not only was I able to be there in 2004, the first season that they played at Citizens Bank Park, I have been around for four more seasons, now that this one has begun. I'm sure glad that I got to see last season, when the Phillies reached the playoffs for the first time since 1993.

Since it has been open, I have been pleased with the accessibility at Citizens Bank Park and have found the staff extremely helpful. Having been given tickets to today's game as a gift in a non-accessible seating area, I needed to trade them in for accessible seating (well, parking in my case). All I had to do was go to the guest services desk and with no problem at all, they moved me to some great accessible seats behind home plate but up a couple of levels.

I had a nice time today. It's great to be 1-0 in games I have attended so far this year. I'm going to enjoy it while it lasts, because I have become the kiss of death for my local teams in recent years!

2008-04-10T21:37:00.009-04:00

Face-to-Face

When I started this blog, I had no idea how many new friends I would make in far away places. I certainly never imagined I'd ever meet any of them in person. Today, I had the opportunity to meet one such friend. Here I am with Kathie in the picture above. A loyal Winheld's World reader who hails from Ohio, she was in Philadelphia today with her family to visit all of the historic sites in town.

There was no way that I was going to miss the opportunity to meet one of my biggest fans. We decided to meet for cheesesteaks at Campo's in Olde City. (For those keeping track, that makes stop number two on my cheesesteak expedition.) Then we headed for the historic area, with a quick stop for that other Philly delicacy, the soft pretzel!

It seems that many of my readers have a personal connection to Duchenne muscular dystrophy. A number of years ago, Kathie lost a dear friend to DMD. But like so many others who have lost someone to this disease, Kathie has chosen to stay involved. In her case, she leads an MDA support group for adults with muscular dystrophy.

I can't think of a more qualified person to lead such a group. And if anyone reading this blog is looking for a qualified tour guide for your next visit to Philadelphia, give me a shout -- I'd be more than happy to eat an authentic Philly cheesesteak with you!

2008-04-05T22:02:00.016-04:00

On Broadway

After nursing a balky back and leg for the past couple of weeks, it was time for a laugh. So it was a good thing I had tickets today to see the Broadway production of Mel Brooks' Young Frankenstein along with my parents and sister, Amy.

Although nothing can top the 1974 cinematic version starring Gene Wilder, Terri Garr, Peter Boyle, and others, today's show was thoroughly entertaining, with plenty of laughs. As in film, the scene where the monster performs a tap routine to "Puttin' on the Ritz" was priceless.

Accessibility at the Hilton Theatre was excellent -- from the elevator to the seating Parking for my full-size conversion van didn't come cheap, but at least we were able to convince the initially resistant parking lot operator to let us park in his lot.

Getting in and out of New York City left a lot to be desired, however. Traffic on the New Jersey Turnpike near the exit from hell (that would be 7A) was terrible and the physical condition of the turnpike itself was dreadful, particularly immediately outside New York, hardly good for my aching body. As a student and lover of cities, I wonder why the federal government couldn't kick in a few extra dollars to improve the roadways around the financial capital of not just the nation, but the world
Apparently, that only happensafter they collapse and people end up drowning in the river.

That's not funny. "Young Frankenstein," on the other hand, was. I would say that it was "worth the ride," but that would be a cheap marketing ploy, considering it's the title of my book. Suffice to say, I'm glad I made the trip -- pain-free, I might add.

2008-04-01T17:37:00.007-04:00

Signing Day

After a few unexpected printing delays, my books have finally arrived!*** My task for today was to personalize and autograph them before they were mailed out. Assisting me were Little Treasure Books marketing director, Paula Lizzi, and her son, Joe. As I can no longer physically write, I had a stamp made with my old signature. But this was no "rubber-stamping" operation. I agonized over many of the messages I wrote (well, not physically) above my signature. It made me wonder how I had ever managed to write a 352 page book in the first place. I must have agonized a lot faster!

***NOTE: Those of you who have ordered books, they should be in your mailboxes within the next 3-5 days. If you haven't already ordered a copy, please click here to do so now. Remember, all proceeds from book sales go to Parent Project Muscular Dystrophy. Thanks for your support!

2008-03-27T22:58:00.007-04:00

The Professor Is In

Well, I sure felt like a professor today, as I was a guest speaker in not one, but two classes in Temple University's Therapeutic Recreation department. The subject of my talks was accessibility, which is near and dear to me, of course, as it is the focus of my own master's research on urban parks. I did talk about park access, but I also spoke about access in other aspects of city life -- cultural institutions, sports facilities, hospitals, education, transportation, etc. In addition, I talked about the assistive technology I use on a daily basis.

The students asked a number of interesting questions, but my favorite came from a girl who asked if I go to parties on the weekend.

"No, not typically...Why, do you know of any? I'll give you my number," I said.

My nurse (who was thinking the same thing) nearly hit the floor, shocked at my newly-discovered bravado. It all comes with maturity, my friends. I am 30 years old, after all -- a fact which was surprising to one young female student.

"You don't act like you're 30," she told me.

I'll take that as a compliment! And if you know of any parties, you know where to find me...

2008-03-26T16:32:00.004-04:00

Fan Mail

I typically try to avoid responding to comments left on this blog. The reason is that everyone gets to hear my opinions whenever they visit the blog. The comment area is your area, where you can tell me that you love me and want to marry me (sorry, females only) or that you think I am the dumbest person on the face of the earth (sorry, no members of my family -- I already know that you think that). Unless comments are obscene in some way, they appear on this blog uncensored.

But every now and then, some comments require a response on my part. One of the goals of this blog is, after all, to help people in similar situations to mine. As it turns out, I have received a few such comments over the past few days. I would like to share them with you in this entry in case there's any advice that you, my readers, might be able to offer. Feel free to post a comment below...

NOTE: If you would like a personal response to your comments, please don't forget to include your e-mail address -- or send me an e-mail with your address by clicking on the link under my picture on the top right of this blog. Also, if you write to me seeking advice, I will do my best to provide it, based on my own personal experiences and what I may have heard from others. However, I am not a medical professional nor do I claim to be, so please consult with your doctor on any medical matters that I may discuss on this blog.

---

Original Comment #1:

"I recently got my trach inserted, after 19 years of DMD. It was a bit too early if you ask me, but completely necessary. I've been finding it really hard to talk, because I'm used to talking in normal, long sentences without breaks. Do you have to do this too, or is it just me?"

My Response:

"Welcome to the wonderful world of trachs! Certainly not a club that anyone would choose to belong to, but hopefully you will find in time that it's not as big of a deal as you might have imagined.

It's hard for me to completely answer your question because you did not say if you are using a ventilator. When my ventilator is connected, I can speak better than I had before getting the trach. Off of the ventilator, I can only speak when I have a Passy-Muir valve attached to the end of my trach. Then, it is much harder for me to speak in complete sentences.

I do know, however, that some people take some time to get used to speaking with a trach. They need to work on timing things just right. So, don't give up hope just yet. Make sure you talk to your doctor and he or she may be able to direct you to other medical professionals who deal with speech issues such as yours. Good luck!"

Original Comment #2:

"I have a trach too, and when I'm out and about, people tend to stare at me a lot. Does this happen to you as well? How do you deal with it? I've only had my trach for a few months and am still getting used to it. I'm used to a few stares because I've been in a wheelchair for most of my life, but when I got the trach, more people stared...probably because it's not something you see everyday. My nurse says to ignore it, but she just doesn't understand. I'm only 18, and I feel like one of those really old people who live in nursing homes...do you have these feelings too? I try and put on a brave face, but it isn't hiding what I feel inside!"

My Response:

"To be honest, I don't notice as many stares as I thought I would. I think a part of it is that people may be staring, but I am oblivious to it. When I do notice people staring at me, I start talking more loudly to my nurse or whomever is with me, so the people staring at me will realize that I am a person just like they are.

I think that you are correct when you say that people look at you because they don't typically see people with trachs. Putting on a "brave face" as you say, is probably the best thing you can do in many cases. Then you can go and vent your frustration to people like me, who understand.

And don't forget, you have only had your trach for a short while. The longer you have it, the more confident you will grow and you will come up with your own way of dealing with the reaction of people who encounter you. Best of luck to you!"

Original Comment #3:

"I read your blog all the time. I'm a 14 year old girl with spinal muscular atrophy. I'm in a wheelchair and have a ventilator. When you were in high school, did people stare and make fun of you too? No one treats me as an equal. some girls think that because I have a hearing aid, I'm completely deaf, and they talk about me even when I'm around. I'm pretty good with getting around my school, but people treat me like I'm retarded. They talk really slowly and loudly because i can't say full sentences in one breath. does this happen to you? I'm really confused and lonely, because I don't know anyone in the same situation as me. I'm the only kid in a wheelchair at my school, and I live in a small town, so I don't see many other disabled kids at all. You seem like such a understanding guy, like you've been through so much. can you give me some advice? thanks for being a great inspiriation."

My Response:

"It's nice to have such a loyal reader. Although I did not have a trach or ventilator when I was in high school, it was not necessarily an easy time. While nobody made fun of me, I did feel socially isolated. Like you, I did not know anybody else in my school in the same situation.

I'm sorry to hear that you're having such a difficult time. Have you joined any online groups for people with your disability? I think that could be very helpful to you in light of the fact that you live in a small town and are not able to interact with other girls who are going through similar issues.

How are your grades in school? If you do well in school, you'll be able to show your able-bodied classmates that you are as smart, if not smarter, than they are. Plus, you will hopefully be able to get into college as a result, and you'll have a clean slate and can meet people who will respect you for who you are."

2008-03-09T22:49:00.005-04:00

Author! Author!

When I began writing my autobiography nearly 2 1/2 years ago, it was hard to imagine that the day when I would actually see it in print for the first time. That happened today at my inaugural book signing party, and as you can see in one of the slides below, it was an extremely happy moment for me. Unfortunately, the copy of my book that I received today was the only one in the building! Thanks to Mother Nature, 500 copies of Worth the Ride: My Journey with Duchenne Muscular Dystrophy were left without a ride due to a powerful snowstorm that closed the airport in Louisville, Kentucky, home to UPS's distribution hub.

But the show must go on, as they say, so we celebrated anyway. We had food -- highlighted by a delicious cake in the design of the cover of my book -- and drinks. A few nice speeches were delivered and I even read excerpts from my book. The event was well-attended, with an estimated 300 guests. The best news of the day was the 230 book orders! That was in addition to about 130 online orders, so we are well on the way to selling out the first print run.

So despite our little weather mishap, I was pretty happy by day's end. Sure, it's quite an accomplishment for me personally, but even greater is the potential that this book has to help countless other families dealing with Duchenne's and to create public awareness of the disease.

2008-03-08T23:57:00.006-05:00

Party Time!

Every year, I talk about doing something exciting for my birthday and never follow through. This year was going to be different and indeed it was, as I celebrated tonight at a local restaurant with a group of friends, some of whom I have known since I was a young child and some of whom I've only gotten to know recently.

The weather conditions outside may have been awful, but that didn't stop anyone from being there with me. One friend even traveled all the way from New Hampshire for the occasion. And although I insisted on no gifts, four of my friends with whom I graduated high school got together and decided they all wanted to take me to a Phillies game this season, so I am looking forward to that. But I was truly touched by the kindness of all of my friends, who made my 30th birthday celebration a night to remember.

2008-03-05T22:19:00.000-05:00

My New Wheels

Last March, I told you with great excitement about the new wheelchair I had just ordered. Well, believe it or not, a year later, I can finally report that I am now in it! Why the delay, you may be wondering, when I had been told that it would take only an estimated three to four months?

It's quite a long story, so I'll spare the details. Suffice to say that it began with an insurance snafu. My favorite part was when I received a form letter asking why I couldn't use a walker or cane instead of a motorized wheelchair! A call to an insurance company nurse and all was well -- or so I thought.

You see, back when my physical therapist ordered the chair, a TDX 4 (which stands for "Total Driving Experience") by Invacare, he ordered a mini-joystick from a company called ASL. It was that joystick that I have on my old chair, which made driving a pleasure again after so many years of struggling to drive a chair. But as he and I both later learned, the joystick from ASL was incompatible with the electronics on the TDX.

As a result, the medical equipment vendor through which the chair was purchased, ordered an alternative type of joystick. However, I could not safely or reliably maneuver the chair because that joystick was not sensitive enough for me. Obviously, you can't have much of a "driving experience" when you can't drive your chair! However, the folks at ASL were able to come through for us big-time, modifying their mini-joystick to work with the electronics on the TDX (Thanks, James!)

Driving my chair today with the mini-joystick, I was pleased for the first time during this extremely long process. But as with any new wheelchair, it's going to take me some time to get used to it, especially because it is a center-wheel drive chair and all I've ever known is a rear-wheel drive chair. It's amazing how the new chair is able to turn practically on a dime. Maybe now I won't kill myself when I attempt to board a train, like I did this past summer!

For now, though, I'll settle for being able to steer straight (not easy) -- and for enjoying my new chair's recline feature. As a matter of fact, I think I'll do that right now -- I could use a little catnap! Talk to you soon...

2008-03-04T22:15:00.006-05:00

Celebrating in Style

What better way to celebrate turning the big 3-0 than with a TV appearance on the local Fox affiliate's morning program, "Good Day Philadelphia," to talk about my book?

Well, that's just what happened, and it was quite a thrill! The only thing that didn't thrill me was that I had to wake up at 6 a.m. to get there in time. I don't think I've seen 6 a.m. for at least a few years, except for waking up, seeing the clock, and going back to sleep! Everything happened so fast that I hardly had a chance to open my eyes -- well, except for the traffic on the Schuylkill Expressway. That didn't move too fast. But I arrived at the studio at exactly 8 a.m. I was whisked inside, where a Fox 29 staffer informed me that I was scheduled to appear live on the air at 8:23 a.m.

That's precisely what happened. You can see my interview with Sheinelle Jones above. Note the birthday cake that was given to me at the end of the interview. As it turned out, I was actually on the air for a full three minutes, which is spectacular by TV standards!

As it was so early, my nurse and I decided to go find some breakfast. Problem was that we couldn't find any place in the area that actually served breakfast and when we did, the establishments we came across in Philadelphia's Olde City neighborhood were inaccessible. So we settled for some fast food and called it a day, er morning.

I spent much of my 30th birthday fielding congratulatory phone calls and answering
e-mails, but mostly just trying to stay awake at the computer. I had a nice, low-key dinner with my family, followed by the cake I had received earlier in the day.

Turning 30 is a milestone for most people, but especially for me. I doubt that anyone would have predicted I'd still be around more than 25 years after being diagnosed with Duchenne's. Still, my feelings are mixed because it's hard to predict the future and there is so much more I want to accomplish.

There will be more celebratory activities this weekend, because how many times do you turn 30, after all? But for now, I'm going to bed -- it has been a long day!

2008-03-03T16:11:00.001-05:00

Need a House?

Things have gone so well on my vacation over the past week that I'm ready to move out. And with me out of the house, I'm figuring that they can sell it because it's too big of a house for two people. So I thought I would give them a hand with putting it out on the market, as you can see from the photo above.

Okay, so I'm kidding! I put the sign up as a practical joke to welcome my parents home tonight. But the truth is that I would like to live independently someday. I'm not sure if I will actually be able to make it happen, but I will never abandon the idea as long as I live -- which might not be very long after my parents see that sign!

2008-02-28T20:42:00.033-05:00

Down Periscope

Kind of looks like another planet, doesn't it? Actually, it's a view of the inside of my trachea, taken during my tracheobronchoscopy today at the otolaryngologist, or ear nose and throat specialist (ENT). To do this, the doctor inserts a flexible laryngoscope through my trach (see picture below). It's thin, like a suction catheter, except that it has a tiny camera at the end.

The purpose is to check the bottom of the trachea for any abnormalities. By the way, the two holes that you see in the first picture are where the trachea attaches to my left and right lungs. It doesn't hurt, though it makes me cough a bit. It is a bit more irritating when the doctor slightly pulls out the trach to see that immediate area.

The doctor was pleased with what she saw, and complimented me on my healthy, pink airway. Always love receiving compliments on the look of the inside of my body! Well, at least the inside of that part of my body. After all, there's a reason this entry is titled "Down Periscope" instead of "Up Periscope!"

2008-02-25T20:33:00.002-05:00

My Vacation

No, I'm not writing to you from a warm sunny beach. Actually, I haven't even left my house. But to quote after McCauley Culkin from his much cuter "Home Alone" days, I made my family disappear! And for me, this qualifies as a vacation.

I certainly love my parents, but I'm just about 30 years old and the thought of still living with them is, well, old. I have yet to abandon the thought of moving out, as difficult as it may be, but in the meantime, any opportunity to be independent for even a short period of time is a cause for celebration.

Sure, you may say that having to handle the day-to-day responsibilities of living alone (even though I am technically never alone because my nurses must still be around) can be a bit of a hassle at times, but I find it incredibly liberating. And in any case, who ever said that life was supposed to be easy? The point is that I should be entitled to the same life that everyone else has, both the good and bad.

Unfortunately, because insurance only covers 16 hours a day of nursing care, moving out presents a challenging proposition. The only reason I am able to have complete coverage while my parents are away is that my parents are able to pay out of pocket for the extra hours I require. It's as if they are paying for two vacations at the same time.

Then again, it really is two vacations -- theirs and mine. And let me tell you, I'm going to enjoy every last second of mine, even if the scenery outside isn't the least bit tropical like theirs!

2008-02-23T19:41:00.004-05:00

Thanks for the Memories

It's awfully hard to believe that I graduated from Temple University nearly 8 years ago! But even though my undergraduate days have been over for so long, I remember them like they were just yesterday. I remember how hard I worked, how much fun I had, and how independent I was. It was, without a doubt, the greatest time in my life.

So it's always nice to return to the scene of the crime, so to speak. Today I attended an alumni brunch at Temple's School Communications and Theater, where I majored in journalism. It was an opportunity to catch up with a few familiar faces and meet some new ones, as well as to stuff my face with some good food. I did manage to stop eating long enough to pose for the camera with Hooter, the Temple Owls mascot.

As I write this entry, I'm chuckling at the memory of attending a basketball game in which Hooter was issued a technical foul for mistakenly entering the court because he/her/it thought that there was a timeout on the floor. Former head coach John Chaney was furious at the call and he ended up with a technical foul as well. Then the team lost the game, which made me livid!

While I can never re-create that time in my life, it sure does feel good to once again be a student at Temple, where I hope to complete my master's degree in urban studies by the end of the year, even though I don't physically spend much time on campus.

It's just too bad that the basketball team is not nearly as great as it once was. But maybe things will start to turn around because I'm back! GO OWLS!!!

2008-02-20T11:33:00.006-05:00

Exciting Times

Some things are truly worth the wait. Today, the New York Times story about DMD research and treatment for which I was interviewed several weeks ago finally ran. The article and video can be found here. I thought it was a great piece that highlighted the fact that without a cure for Duchenne's, doctors are now focusing on managing the disease, "making better use of available therapies to eke out longer lives for their patients." There is no doubt that it is this philosophy that has been responsible for keeping me around.

Naturally, I was most impressed with the video segment that ran with the story because it featured me! Just like the print article about me that ran in the Philadelphia Inquirer on Monday, the story was not overly dramatic, but offered an honest account of my life. Not only did it address the medical issues that I face, but it also focused on some of what I've been able to accomplish in spite of my disease.

Still, I would be remiss if I did not raise an objection to the part of the article that described how one boy, whose ability to walk appeared gone forever, regained that ability. While this is a wonderful thing, I think that parents often get too carried away with the fact that their son is going to be a wheelchair. Obviously, no one wants to be in a wheelchair. But the fact of the matter is that you can accomplish much in the wheelchair and I think it's important that parents of children with DMD, one of the audiences targeted by this blog, understand.

Today's world is becoming more and more accessible. And let me tell you, when I started using my wheelchair, it was a tremendous relief. Sure, I was able to walk before that point, but it certainly wasn't easy. I was terribly unsteady on my feet, constantly afraid of falling.

My point here is that, yes, we need to cure all aspects of this disease. But let's not forget that being unable to walk will not kill you, but the pulmonary, cardiac, and nutritional aspects of the disease will.

Perhaps with stories like the one that appeared in the New York Times today, hopefully one day soon, we won't have to talk about any such aspects of DMD because there will be an effective treatment for the disease.

2008-02-18T17:12:00.002-05:00

Inquiring Minds

When I responded to Philadelphia Inquirer columnist Daniel Rubin's request on his blog for comments from people with disabilities in the Philadelphia about accessibility, little did I know how that I would soon become the focus of one of Mr. Rubin's columns.

Last week, I received an e-mail from him expressing an interest interviewing me about my life and my soon-to-be released autobiography -- as soon as possible. The interview took place on Friday and today the story, fittingly titled "Aspirations Like Any Other" appeared in the paper.

Truth be told, I have always been an admirer of Mr. Rubin's work. His columns are always very thoughtful and heartfelt. His story about me did not disappoint. It was not one of those sappy, melodramatic, "Look at the poor boy in the wheelchair; he's going to die" pieces that, let's face it, we see all too often. No, this was anything but. It painted an accurate picture of my life, which has been challenging at times, but which has also been productive and enjoyable.

The story was poignant, making reference to my desire for independence and love, but humorous in detailing my recent cheesesteak expedition following my recent cardiology appointment.

Word has it that I will soon appear in another well-known newspaper. Seems I've become quite the media darling!

2008-02-14T21:36:00.010-05:00

Heartening News

I can't say I'm a big fan of the holiday, but it turned out to be a pretty sweet Valentine's Day after all. Today, I had my annual echocardiogram at the cardiologist, which I always dread because it looks at the functioning of my heart, typically an issue in guys with DMD. But the news was good, folks. There was noticeable change since last year!

Not only that, but the very lovely Michelle, who performed the test, was able to find a perfect view of my heart on the first try, so my chest wasn't even that sore afterward from being pushed on with the probe of the ultrasound machine. You might say she saw into my heart -- hey, it is Valentine's Day, right?

So after leaving the doctor's office, I did what every good cardiac patient does to celebrate news like this: I ate a greasy, artery-clogging, but delicious Philly cheesesteak sandwich! My doctor wasn't especially thrilled when I told him where I was headed after seeing him. But I was on a mission -- in four months, I will be hosting friends from England (you know who you are). I want to take them to the best cheesesteak establishment in the city, so I've begun an expedition to find that place. Today marked the first stop: Dalessandro's, in the city's Roxborough section. Let's just say their sandwich warmed my heart, which was fitting on this day!

2008-01-31T22:43:00.000-05:00

Then and Now

I can't say enough about how writing a book has allowed me to reconnect with old friends from way back. In 1991, meteorologist John Bolaris came to the summer camp I attended for kids with disabilities and I had the thrill of reading the weather forecast with him. Later that year, John took me to a Philadelphia Eagles game, returning later that evening for a holiday dinner with my family.

After several years in New York, John recently returned to Philadelphia, this time as chief meteorologist at Fox 29. Through my publisher, Little Treasure Books, I got in touch and had a chance to visit him at the studio today. Not only that, but John has written a very touching endorsement that will soon grace the back cover of my book. And thanks to a little bit of networking, another TV appearance is a distinct possibility. Stay tuned...

2008-01-28T21:47:00.000-05:00

In the Blinq of an Eye

It seems I've become an overnight sensation out there in the so-called blogosphere. Alerted last week to a request by Philadelphia Inquirer columnist Daniel Rubin for insight into the accessibility situation in Philly, I contacted Mr. Rubin and began an e-mail dialogue on the subject. Today, one of my e-mails appeared in Mr. Rubin's blog, Blinq, along with a link to Winheld's World.

To be sure, the exposure is wonderful. But I'm even happier to know that Mr. Rubin has pledged to spend more time looking into accessibility here in the City That (Supposedly) Loves You Back. I mean, I'm about the biggest Philadelphia cheerleader around. Philly's a great place, with lots to see and do, much of which is readily accessible to those of us in wheelchairs. Still, there's plenty of room for improvement. Curb cuts and sidewalks can be treacherous; many shops and restaurants are out of reach. And don't even get me started on parking and mass transit!

Accessibility in cities is to be the focus of my master's thesis in urban studies, so I'll be learning more in the coming weeks and months. Meanwhile, if you have any observations that you'd like to share about accessibility in the city where you live, please consider posting a comment...

2008-01-24T23:08:00.000-05:00

Genetically Speaking II

How many times can I show a picture of me talking to a class? I decided to change things up and have the genetic counseling students I spoke to today surround me in the above photo. I don't know if you noticed that they're all of the female persuasion. I did, though I didn't happen to get any phone numbers!

Still, they were nice enough to listen to me for an ENTIRE HOUR. Prior to my appearance, the students learned about Duchenne's from one of the doctors at The Children's Hospital of Philadelphia. My job was to share the more personal side of the disease. I used a PowerPoint presentation containing photographs at various points in my life.

But as this was a class on genetic counseling, I also shared my thoughts about genetic testing and pregnancy termination. I took some heat from a few readers for my comments on this to last year's class. I told the students that I would personally not want to bring a child into this world knowing he would have DMD. That doesn't mean I'm rejecting my life or the lives other guys with the disease. There was no genetic testing when many of us came along. Once you're here, I believe you must live your life to the fullest. But nobody wants to have Duchenne's. I would not knowingly want to subject my child to it.

That's just my opinion, though I would think there are others out there who feel the same way. So criticize me if you will, but please respect my opinion as I'll respect yours.

2008-01-21T17:15:00.000-05:00

I'm Back!!!

When I had my tracheotomy in 2002, I had every intention of completing my studies at Temple University, where I had been pursuing a master's degree in urban studies. However, I found it difficult both physically and emotionally and eventually left school the following year. I never thought I'd return because, quite honestly, I wasn't sure I'd even be around.

Four years later, I'm still here so I've decided to give it another shot. Had I not left in the first place, I likely never would have written my book or launched this blog. But I've always finished what I started, so it didn't sit well with me to leave school. Plus, my interest in cities and the field of urban studies has never died.

So today, with frigid weather conditions outside (see me above all bundled up), I headed to campus to meet with some of the professors in the department to explain why I had left so abruptly in 2003 and to talk a bit about the nature of my disability, something I had rarely discussed with them before, out of concern that it would change the way people saw me. We also discussed possible thesis topics.

I'm hoping to finish my degree by the end of the year. It's not going to be easy, as my energy is limited, but I figure that if I can write a book, I can write a thesis. Even if I do, though, it can't be the end. It has to lead to something. Maybe I won't have a long career but I'm doing this so I can work in the field I love.

Wish me luck. I'll be sure to keep you updated on my progress.

2008-01-17T15:56:00.000-05:00

Adding Insult to Injury

Last year, I wrote about an unpleasant phone conversation with a representative at Social Security. News flash: obnoxious people still work there. Take my conversation today with a woman named Betty, for example. The purpose of my call was to report income I had made from September to November, but for which I received a paycheck only a few days ago. From the start, she had a rude, condescending tone and interrupted every time I tried to explain my situation.

Betty: "How long have you been working?"
Me: "I'm no longer working, but the job began in September."
Betty: "No, listen to me! What DATE did you start?"
Me: I don't have an exact date.
Betty: "Well, you have to report when you start working."
Me: "I'm sorry, but I didn't have any specific information at the time because I'm a consultant."

When I asked Betty to repeat something I had not heard her say, the conversation quickly deteriorated.

Betty: "I'm speaking loud enough. You're the one that's quiet."
Me: "Ma'am, I'm on a ventilator, so--"
Betty: "Well, it doesn't say that here."

That's when I lost it.

Me: "WHY THE HELL DOES THAT MATTER!?! SINCE WHEN DO I HAVE TO REPORT THAT!?! NOW I'M YELLING, WHICH IS VERY DIFFICULT FOR ME!" I screamed at the top of my lungs, "You've been rude and you've talked down to me the whole time; I'm not stupid, just disabled!

Never had I felt so insulted in my life. My heart now racing and with tears in my eyes, I demanded to speak to a supervisor. However, the apology I received was somewhat half-hearted, saying she was sorry if that's what Betty had said to me.

Social Security has some work to do in the area of customer service. Need I say more?

2008-01-14T20:14:00.001-05:00

Keeping Pace

Looks like my decision nearly three years ago to have a cardiac defibrillator implanted in my chest was a good one. At a routine electrophysiology appointment today, I learned that the device again took action to correct a dangerous heart rhythm. It was able to "pace" me out of it, so it did not have to deliver a shock.

I actually remember the incident, which occurred back in October. I was at the computer, chatting online with a friend and listening to the Flyers game. Suddenly, I felt my heart beating rapidly. I became dizzy and warm, and the light in my bedroom seemed to grow dim. And then just as quickly as it began, it ended. I immediately wondered if the device had helped me.

As the doctor reminded me today and at my previous appointment, when the device reported taking action, this is exactly the reason why I have it in the first place and thus no reason to be alarmed. Still, I can't help but find it alarming. More than that, though, it reminds me just how lucky I am that my cardiologist recommended implanting the defibrillator. I feel it is therefore my responsibility to live my life to the fullest because so many other guys with DMD haven't been as fortunate. It is a responsibility I take seriously and one that will motivate me as long as I live.