Winheld's World

RSS Feed Homepage

Chowing Down in Chinatown The last time I was in...
2007-08-12 08:49:00
Chowing Down in Chinatown The last time I was in Philadelphia's Chinatown, I was a college freshman -- 11 years ago! Tonight seemed like a good time for me to return, along with friends Bekezela and Mike (pictured above) and my nurse du jour (taking the picture.As usual, parking my high-top van in Center City proved a royal pain in the ass. We picked out a perfectly good handicap space, only to be told by the attendant to go to other side of the lot -- the equivalent of half a block away, where the pavement was broken up -- because there was "more room over there."Fortunately, dinner proved worth the trip. I even got a bit adventurous in my old age, trying Lamb Hunan Style and Pineapple and Lychee Duck. I enjoyed both and had no trouble chewing either, always a concern when straying from my predominantly chicken and fish diet.We decided to walk around after dinner, as I wanted to get a picture at the well-known Friendship Gate. Halfway up the block, a restaurant worker carted out a ...
More About: Time , The Last

Saturday Stroll It was one of those rare summer da...
2007-07-22 01:40:00
Saturday StrollIt was one of those rare summer days in Philadelphia when it isn't oppressively hot and humid, so I took full advantage of the beautiful weather and went for a walk (roll) on the trail along Kelly Drive, one of my favorite places in Philly. What's great about the drive is that you feel removed from the city, while the Center City skyline reminds you that you're still there. Note the nearly-completed Comcast Center, which will be the tallest building in in the city. I also enjoy the other "scenery" if you catch my drift! Hey, a guy can dream, right? I try to get out on the Kelly Drive trail, as well as the nearby Schuylkill River Trail as often as I can during the warm weather months, provided I have a nurse who is willing to walk with me. I do have to be careful when out in the sun. Some of my medications make me more susceptible to the effects of the sun, so I try to keep as much of my body covered as possible and wear sunscreen. At the same time, I must stay hyd...
More About: Summer , Saturday , Rare , Troll

PPMD Day 4: That's a Wrap Part 4 of Winheld's Worl...
2007-07-16 04:01:00
PPMD Day 4: That's a Wrap Part 4 of Winheld's World coverage of Parent Project Muscular Dystrophy?s (PPMD) 2007 Annual Conference, July 12-15, in Philadelphia.I couldn't wait to get back to the hotel for brunch this morning. Maybe it was because I wanted one last chance to trade war stories with my new friends. Maybe it's that Pat Furlong, PPMD founding president is a superb motivator (as has been noted by at least one other person). Or maybe I was just really hungry. Whatever the reason, I managed to drag myself out of bed at 7:30 a.m. -- practically unheard of for me! My father, who accompanied me today, said that now that I have demonstrated that I can get up so early, I have no excuse for usually getting up so late. So I might never live this one down.But that's okay because today -- and the last three days, for that matter -- were well worth the early wake-up call. All I've ever wanted to do in my life is to make a difference and that's what PPMD and each and every one ...
More About: Held

PPMD Day 3: My Turn Part 3 of Winheld's World cove...
2007-07-15 08:53:00
PPMD Day 3: My Turn Part 3 of Winheld's World coverage of Parent Project Muscular Dystrophy?s (PPMD) 2007 Annual Conference, July 12-15, in Philadelphia.When your child receives a diagnosis of Duchenne's, you feel desperate and want a solution to the problem NOW, not five, 10 years down the road. I know that's how my parents felt nearly 25 years ago. Nevertheless, I was a bit disturbed when one parent raised the question of why, if a drug shows promise very early on (say after as little as 28 days), parents shouldn't be able to give that drug to their children. "Why should our children have to wait 10 years, when they're already in wheelchairs, to start a treatment when we could have already had them on it and prevented that from happening? What kind of life are we giving them?" was his basic argument. I understand where the guy was coming from. Everyone wants a cure, but taking dangerous shortcuts is not the answer. As one doctor said in response, "I don't want to give your ...
More About: Part 3 , Held

PPMD Day 2: Getting to Know You Part 2 of Winheld'...
2007-07-14 01:43:00
PPMD Day 2: Getting to Know YouPart 2 of Winheld's World coverage of Parent Project Muscular Dystrophy?s (PPMD) 2007 Annual Conference, July 12-15, in Philadelphia.A conference like this serves as a wonderful networking opportunity within the Duchenne's "community" -- doctors, researchers, nurses, physical and occupational therapists, respiratory therapists, genetic counselors, government officials, parents, patients; the list goes on and on. I met so many people today just outside of the conference today that I barely had five minutes to listen to any of the presentations inside! Among those that I met today were: a 34-year-old middle school music teacher with Becker muscular dystrophy from New Hampshire and his mother; the parents of a young son with Duchenne's from Massachusetts who started a research foundation called Charley's Fund; a doctor from Pittsburgh; the coordinators of a project on Duchenne interventions from the Centers for Disease Control (CDC) in Atlanta, and a ...
More About: Held

PPMD Day 1: Part of the Family Part 1 of Winheld's...
2007-07-13 05:43:00
PPMD Day 1: Part of the Family Part 1 of Winheld's World coverage of Parent Project Muscular Dystrophy?s (PPMD) 2007 Annual Conference, July 12-15, in Philadelphia.It's a family that no one chooses to join, but when your child is diagnosed with Duchenne or Becker (considered a less severe form of Duchenne) muscular dystrophy, you automatically become a part of it. That was one of PPMD Founding President Pat Furlong's key messages in her opening address on this, the first day of the conference. Pictured (at left) are me and Frank, my nurse.It was a message that certainly resonated with me. For years, I tried to ignore that "family." I didn't want to be a part of it at all; I just wanted to live my life. But you can't leave this family (just like the mafia). Sooner or later, it pulls you back in! For me, it was all of the medical stuff I've been through in the past five years that brought me back. It made me realize just how fortunate I am to be here and that I should use my...
More About: The Family , Held

On the Right Track Against the backdrop of the Pen...
2007-07-07 05:46:00
On the Right Trac k Against the backdrop of the Pennsylvania legislature's current debate over funding for mass transit systems across the commonwealth, I took the train into Center City Philadelphia today for the first time since I was a toddler. A proponent of mass transit since my days as a graduate student in urban studies, I was never really able to put my mouth where my money was due to the fact that the train station nearest to my house was heretofore inaccessible. When I picked up a friend at the same station earlier this week, I saw that it had been made completely accessible. With a conference to attend downtown next week, I thought I would go on a trial run today. I'm glad I did.The savings in cost alone made it well worth it, as parking my full-size van in town costs at least $20. Roundtrip tickets for me and my nurse on SEPTA's Regional Rail service were $6 a piece for travel during off-peak hours* (of course, fares increase on Monday). And don't forget the cost of...
More About: Drop

State of the Art, But Accessible? As I read abou...
2007-06-30 07:11:00
State of the Art, But Accessible? As I read about and watched all of the hoopla surrounding the release of the Apple iPhone (the mayor of Philadelphia was so excited that he camped out on the street to get one), I started to wonder, how would someone like myself be able to use the device independently? By the time many people with Duchenne's reach adulthood, they have no use of their hands.A quick check of Apple's accessibility page shows that they have not ignored accessibility -- even with the iPhone. A TTY adapter is available for hearing impaired users and the device itself has a zoom feature for users who are visually impaired. But how would you make such a device accessible for someone like me? I see the iPhone is capable of voice dialing, but can a call be initiated without first pushing a button (which I can't do)? Can a version of Dragon NaturallySpeaking or IBM ViaVoice be installed on the iPhone to allow menus to be navigated or e-mails and text messages to be writte...
More About: Read , State , The A

Like Father, Like Son My father and I were both lo...
2007-06-18 08:22:00
Like Fath er , Like SonMy father and I were both losers today, as neither the slot machines nor the blackjack tables were kind to us as we spent Father's Day in Atlantic City. But we enjoyed a nice lunch and took a brief stroll on the boardwalk (photo of me taken by Dad). On the ride home, we even had the pleasure (or should I say, displeasure) of listening to the Phillies self-implode. Nevertheless, it was a fitting way to celebrate Father's Day. It was the first time in quite a while that just my father and I took a roadtrip. In fact, since my tracheotomy five years ago, I have only been out a few times with just one of my parents. I go out plenty with my nurses and it has gotten to the point that I almost feel as if I can't go anywhere without a nurse. But the truth of the matter is that I should do this sort of thing more often. I need to get out there and live my life -- even when there's no nurse with me.Just maybe next time Dad and I will keep our money in our pockets and g...
More About: Were

"Dr. Death" Out of Jail I watched "60 Minutes" ton...
2007-06-04 08:28:00
"Dr. Death " Out of Jail I watched "60 Minutes " tonight and caught Mike Wallace's interview with Jack Kevorkian a.k.a. "Dr. Death," the retired pathologist and physician-assisted suicide advocate who had been just released from prison after serving part of a sentence for helping a 52-year-old man with ALS, Tom Youk, commit suicide.I'm glad that Dr. Kevorkian has been released, as I see nothing wrong with what he did. A man with a terminal illness and of sound mind wanted to die and couldn't do it by himself. I don't feel as if I'm suffering -- Duchenne's isn't a painful disease and I'm still able to be productive, so I would not want to end my life. But if I did, I feel that I should have that right -- even though I would physically be unable to do it myself. Like Dr. Kevorkian, I would like to see physician-assisted suicide legalized for consenting adults. Safeguards should be in place so that someone who is depressed does not his/her a life. Doctors should be consulted bec...
More About: Utes

Go West, Young Man! Traveling cross-country in an ...
2007-06-01 01:00:00
Go West , Young Man!Traveling cross-country in an RV is no small feat for most people, let alone a young man with Duchenne's.But that's exactly what Darius Weems, a 15-year-old with DMD did two summers ago. Mr. Weems, who lost an older brother to the same disease, had never been away from his hometown of Athens, Georgia. With a group of college-age friends, he set out on for Los Angeles, hoping to raise awareness of Duchenne's and that MTV's "Pimp My Ride" show would customize his wheelchair.His adventure is the subject of a documentary, "Darius Goes West: The Roll of His Life" (see trailer above), which has won wide acclaim at various film festivals across the country. As far as I am aware, the film has not been shown in the Philadelphia area yet, so I haven't seen it. If anyone reading this in another part of the country has seen it, please feel free to post your thoughts.Darius Weems' journey just goes to show some of the great things that are possible to do even with Duch...
More About: Country , Cross

In Enemy Territory To put it mildly, I dislike the...
2007-05-27 05:29:00
In Enemy Territory To put it mildly, I dislike the New York Yankees. Maybe it's because they have an arrogant owner with such deep pockets that he can buy a championship (although they haven't actually won one since 2000). Maybe it's because I'm jealous of the fact that they've won 26 championships while my Philadelphia Phillies have won exactly one. Or maybe it's that I'm from Philadelphia and we hate all New York teams!Nevertheless, I found myself at, of all places, Yankee Stadium today with my parents, my uncle, and my cousin (photo courtesy of Cousin Benny, by the way). With the stadium set to be torn down in a couple of years, I wanted to make my pilgrimage to the mecca of baseball -- home to legends like Ruth, Gehrig, DiMaggio, and Mantle. Getting there was a nightmare, with traffic on the George Washington Bridge so insane that it took an hour just to get across. Fortunately, New York's finest were very helpful in finding us a place to park my van. Still, we didn'...
More About: Enemy Territory , Tory

Take Me Out to the Ballgame The baseball season's ...
2007-05-16 08:50:00
Take Me Out to the BallgameThe baseball season's been underway for a month and a half, but I don't consider it official until I actually get out to the ballpark to see the Phillies for the first time. Tonight was the night, and why not? With a game-time temperature of 80 degrees, low humidity, a comfortable breeze, and the first place Milwaukee Brewers in town, it was the perfect occasion for my season debut. Apparently, 41,000 other people had the same idea, too, perhaps because it was also Dollar Dog Night (hot dogs for $1) and College Night (lots of rowdy, drunk students).I always enjoy a night (or day) at the ballpark. Citizens Bank Park, which opened in 2004, is extremely accessible. There are plenty of great places for fans in wheelchairs and their companions to sit, and when fans in front of such seating areas stand up to cheer, they don't block the view of those in wheelchairs. The stadium also has several family (unisex) restrooms, which makes it more convenient whe...
More About: Baseball , Seas , Base

Feeling Blue Comedian Josh Blue (see video clip) s...
2007-05-13 08:49:00
Feeling Blue Comedian Josh Blue (see video clip) shows that there's nothing wrong with laughing at yourself -- even if you have a disability. Blue, who won NBC's "Last Comic Standing" in 2006, has cerebral palsy, which he incorporates into his brand of humor. One of my nurses told me about him last year after he won the competition, so I checked out a few video clips and found them funny. When I saw in the newspaper that he was to perform nearby, I decided to find out if he was as funny in person.Although I was exhausted from a busy day yesterday and hardly felt like getting ready to go out in the rainy weather, I was glad I did because Blue certainly didn't disappoint. The two other comics who preceded Blue on stage, Kristin Key and Michele Balan, were very funny as well. But Blue's act was high-energy from the start; the guy must have walked three miles with all the pacing he did back and forth, across the stage. His disability was a key component of his act, whether poking f...
More About: Video , Clip , Feeling

The Weakest Link "If you look close enough, you'll...
2007-05-05 07:49:00
The Weakest Link "If you look close enough, you'll find everyone has a weak spot." That's a great line from "Fracture," starring Anthony Hopkins (excellent movie, by the way), but I think one could say the same thing about the wheelchair lift in my van. Its weak spot is the trip wire attached from van door to the lift, without which the lift will not operate (see picture). And to think that the ability of a piece of equipment strong enough to pick up a heavy motorized wheelchair all hinges upon one measly wire.Well, the chickens came home to roost yesterday. Ready to grab some lunch after watching the aforementioned film -- no, Sir Anthony did not eat anyone, in case you were wondering -- my nurse and I were less than pleased to hear a loud "snap" when he opened the van door. Gulp!"That's not good," we said at the same time.Though I had several hours of power left on my ventilator battery as well as a cable to hook the ventilator to the van's cigarette lighter adapter, the goal w...
More About: Close , The Weakest Link

Back by Popular Demand Seems I'm becoming quite th...
2007-04-24 18:44:00
Back by Popular Demand Seems I'm becoming quite the public speaker. Today and yesterday, I spoke to first-year medical students at the University of Pennsylvania School of Medicine, as part of their "Doctoring" course. The picture to the right is of me outside my house, just before leaving for one of the classes. The goal of the sessions was to help the students learn about treating patients with disabilities.Though I would have been happy to answer any medical questions, I was glad that the discussion focused on what my day-to-day life is like instead of on the specifics of my disease because, as I told the students, people like me don't exist in a vacuum. I talked about some of my bad experiences with doctors, and also my positive experiences, which far outweigh the negative ones. And fittingly enough, the topic of people being uncomfortable around those with disabilities came up, which I had just addressed in my previous blog entry. I told the students not to worry so much about...
More About: Back , Ming , Pula

A Word About Political Correctness In the afterma...
2007-04-14 22:50:00
A Word About Poli tical CorrectnessIn the aftermath of Don Imus' firing over offensive comments made regarding the Rutgers University women's basketball team, I have heard a number of people decry the radio host's dismissal as an example of the overly heightened atmosphere of political correctness that exists in our society. While it has become fashionable to criticize the concept of political correctness, I think that's a bit extreme. People should always consider how the way they describe others affects them. If you're one of those people who asks, "How am I supposed to know what is offensive?" use some common sense. That said, when it comes to disability (a topic on which I am obviously qualified to speak), I must say that some of the conventions of political correctness are a bit overdone. Even I don't follow some of them, so I really don't care much if others don't follow them. For example, you're not supposed to call someone a "disabled person," but a "person w...
More About: Political Correctness , The A

Genetically Speaking I had another speaking oppo...
2007-03-30 08:42:00
Genetically Speaking I had another speaking opportunity today, this time at Children's Hospital of Philadelphia, where I addressed graduate students in genetic counseling. The students had the, dare I say, "pleasure" of listening to me for a full hour!My talk was complete with a sharp PowerPoint presentation (put together by one Winheld's World reader -- you know who you are) that illustrated me at various points in my life. There were cute pictures of me and my sisters in our younger days, graduation pictures from high school and college, and some scary looking pictures from when I had lost tons of weight prior to my tracheotomy. My favorite picture (at right) was the one of me at Halloween the first year I was in a wheelchair, when I dressed as a military tank! As this was a class of genetic counseling students, I also touched on the issues of prenatal testing for Duchenne's and of pregnancy termination when a fetus is determined to have the disease. I told the students that ...
More About: Peak , Ally

Kickin' Around the Tires About the only thing miss...
2007-03-22 05:34:00
Kickin' Around the Tires About the only thing missing today was the new car smell, as I was fitted for a new motorized wheelchair. The price tag was certainly there, but fortunately it will be covered by insurance (not that that is cheap, either, but it certainly helps when paying for equipment as expensive as a luxury vehicle). After looking at three particular models from various manufacturers and consulting with the physical therapist and medical equipment salesman, I decided to go with a mid-wheel drive chair by Invacare (pictured above), from its TDX series (Total Driving Experience -- being in a wheelchair is apparently now an "experience"). Though the measurements of my new chair will not change, the new chair should be a major improvement over the current one. With a battery for my ventilator incorporated into the design of the chair, the chair should not tip back when going over inclines. It will definitely be a bit different to drive at first, as the fact that it is m...
More About: Miss , Thing , Kick , The O

What's up Doc? I had a housecall today from my chi...
2007-03-13 03:31:00
What's up Doc? I had a housecall today from my childhood doctor (standing next to me), affectionately known as "Dr. Shep." Nearly 25 years ago, when my parents realized that my physical development seemed too slow, they took me to several doctors, none of whom recognized what was wrong. That was until they took me to see Dr. Shep. A bell went off in his head and he was able to immediately diagnose me with muscular dystrophy.Over the years, as I progressed from preschool to college, Dr. Shep provided a calming influence for my parents and me, never panicking, but also being proactive when necessary. A computer enthusiast, he also taught me all that there was to know about the Apple computer I owned back in the day.Retired for several years now, Dr. Shep spends his time working at his computer and on his golf game. Like a fine wine, his stroke has improved with age, or so I've been told!
More About: Today , Ouse

Winheld's World Rant of the Week We interrupt our ...
2007-03-10 20:39:00
Winheld's World Rant of the Week We interrupt our regularly scheduled programming to bring you the following Rant of the Week...One of my doctors recently relocated to another location, and when I went there this week, I arrived to find a cramped parking lot that did not have any handicapped spaces. Now, my doctor was wonderful about everything and promised to have things straightened out by the next time I come for a checkup, but that's not the point.The reason I bring this up is that it highlights a lack of accessibility, in of all places, the medical world. A few weeks ago, I visited another doctor's office about a week and a half after a snowstorm, to find that the curb cuts from the parking lot to the sidewalk had still not been shoveled. I had not dressed very warmly, so I was freezing by the time I went halfway around the block in my wheelchair in order to reach the sidewalk!But many of the problems I have encountered occur once inside medical offices, where hallways are so...
More About: Interrupt , Held

29 and Counting... It's hard to believe it, but I ...
2007-03-05 02:32:00
29 and Counting ...It's hard to believe it, but I turned 29 today! Yep, that means the end of my 20s is fast approaching. It seems like only yesterday that I turned 20.My life has certainly changed since then. I am lucky to be alive, in light of some of the medical situations I have been through in recent years. On the other hand, it saddens me that my 20s are over and I haven't had the opportunity to do the kinds of things that most people get to do in their 20s, like moving out of my parents' house (although my father has offered me the supply shed out back, rent free!) or being in a relationship. It's not that these things can't happen in one's 30s, but the 20s to me represent vitality, youth, and the freedom to try new and exciting things and I cannot help but feel a bit cheated. And yet, I feel guilty for feeling this way because there are so many others with my disease who have not been as fortunate as I have to even be here.Nevertheless, I celebrated my birthday with...
More About: Hard

He's Baaack! Fame and fortune may come calling, bu...
2007-03-02 06:10:00
He's Baaack!Fame and fortune may come calling, but there's no place quite like Winheld's World! So when my nurse, Frank, (pictured with me outside the Philadelphia Museum of Art last fall) left for another job, it was only a matter of time before he returned. I mean, where else does the opportunity exist for a nurse to work for such a cool guy? (That would be me, by the way!)Today was Frank's first day back, and while he will only be working for me on a limited basis, Winheld's World will be all the better for it. And, as it turns out, the day of the week that Frank will be with me happens to be the day of most of the Phillies Businesspersons' Specials. It's going to be a terrific summer, indeed! Welcome back, my friend!
More About: Fortune , Calling

Home Alone (Sort Of) With my parents out of town t...
2007-03-01 04:44:00
Home Alone (Sort Of)With my parents out of town this week, I've had the house to myself. Well, not completely. With nurses coming and going at seemingly all hours and our loud-mouthed dachshund, Zoe (pictured at right) on the prowl, it is rather impossible to ever be alone! Because insurance only pays for 16 hours of nursing care per day, it is an expensive proposition whenever my parents go on vacation, as they must pay out-of-pocket for eight hours of nursing care for me each day. Although respite care hours are available to the parents of children with serious disabilities in Pennsylvania, there is no program of which I am aware when it comes to adults like me. But parents like mine deserve a break, too. (And trust me, while my parents are great, I also need a break from them every now and then!)So far, I have enjoyed my "vacation." It has given me the opportunity to entertain friends and family -- and to see every possible photograph from my aunt's recent trip to Cambodia!...
More About: Home , Parents , Town

Heart of the Matter Winter is a difficult time of ...
2007-02-23 05:46:00
Heart of the Matter Winter is a difficult time of year for me. My body doesn't seem to respond well to the cold temperatures and I spend weeks at a time inside the house. (You know something's not quite right when I look forward to outings to the doctor) The way I feel physically, I spend more time thinking about my mortality. But I got some encouraging news today from my cardiologist: my annual echocardiogram indicated that my heart function had not declined over the past year and may have even improved a tiny bit. I was surprised to hear that this is the case, but I'm not about to argue with good news.The reality remains that I still have a weak heart and something fatal could always occur suddenly -- the doctor has told me more than once, "You'll be okay until you're not okay" And while my heart function may be better, my heart will inevitably continue to weaken. Still, the doctor also reminded me that I'm no longer in heart failure. He couldn't say that 4 1/2 years ...
More About: Time , Heart , Diff

A Star is Born In case you missed my TV interviews...
2007-02-21 08:42:00
A Star is BornIn case you missed my TV interviews today, here they are for your viewing pleasure, the first of which took place today in-studio, LIVE! When TV calls, you had better be ready to answer the bell. Well, it did and I was! My big plans for today included going to a copy center to order bound copies of my book manuscript and watching the my recently-taped interview air on TV.That all changed a couple of hours before the interview was to air, when my mother received a phone call from the TV station, asking if I could get down to the studio in two hours for a LIVE interview! After my mother frantically tracked me down, she and my nurse rushed to get me ready. In record time, they got me in and out of the bathroom, dressed and shaved, washed my hair, and gave me my medicines. My father sped us to the studio. The traffic even seemed to cooperate!With the excitement, there was no time to be nervous. Before I knew it, I was on stage being interviewed. Everything seemed to slow d...
More About: Interviews , Case