State of the Art, But Accessible?

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 written by voice?

I bring up the iPhone because it is in the news, but these same issues exist for other cell phones, PDAs, and the ever-popular BlackBerry. It's why a technology-savvy guy like yours truly has never sent a text message. Let's hope someone out there has a solution. Sure, it would be great for work, but what if I find that special someone? How would I text her? It's how romance works these days. Priorities, people!

Like Father, Like Son

Like Father, Like Son

My 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 go somewhere else. At least until next Father's Day...

"Dr. Death" Out of Jail

"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 because, as Dr. Kevorkian says in the interview, only they would know if a person is depressed.

One point raised by Wallace is that some other people with ALS have equated Dr. Kevorkian's helping Mr. Youk take his life to implying that they, too, should kill themselves. I couldn't disagree more. No one is saying their lives should be ended; one man with the disease said he'd prefer not to continue with his life. It was one man's decision and should be respected even by those who disagree.

Incidentally, a great film -- and true story -- on this issue is "The Sea Inside," about a paralyzed man who wants help to die. I didn't personally agree with his reasons for wanting to die, but I respected his right to do so. Who am I to decide whether his life was worth continuing?

Back to Dr. Kevorkian, The only thing I had a problem with was when he said in the interview that he admires those with ALS "who go on suffering without complaining and want to..." I doubt that everyone with ALS thinks he or she is suffering.

Still, even though Dr. Kevorkian, as a condition of his parole is not allowed to help people die, I sincerely hope he continues to advocate for physician-assisted suicide, as I suspect that a great many Americans support it, even if they're uncomfortable admitting it.

*(click here instead for text version)

Go West, Young Man!

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 Duchenne's, as long you are determined and have dedicated people around you who are willing to lend a helping hand. Those of us with DMD must make the most of a limited amount of time, and that's why his trip is so important. At the same time -- and I sometimes make this mistake myself -- there's really no way to predict how long any of us with this disease will be around, so I hope that this isn't the end of the great things that Darius Weems accomplishes in his life.

Good luck, Darius! May your life be filled with many more journeys...

In Enemy Territory

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't get to our seats until the third inning.

Once I was settled in, though, I was glad that I had made the trek to the Bronx. To realize that I was at the same place where all of those great players and teams once competed, the place where all of those championships were won, was quite amazing. Despite the fact that the Yankees are actually in last place (not that I'm upset about that), the stadium was packed and the fans were loud. I sat there, imagining how much louder it must be there during the playoffs, how intimidating it must be for the opposition. No wonder there have been so many miraculous comebacks for the hometown team.

I had fun at the game, but I just couldn't bring myself to actually cheer for the Yankees. They're the enemy; you can't root for the enemy -- even in their own ballpark! Go Phillies!!!

Take Me Out to the Ballgame

Take Me Out to the Ballgame

The 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 when I have a female nurse with me.

With accessibility concerns out of the way, it means less aggravation and more time eating, criticizing manager Charlie Manuel's moves, yelling at umpires, and oh yes, cheering for the Fightin' Phils!

Getting out to games at night is not the easiest thing for me. I must arrange for my nurse to come in later and leave later, which affects my mother's schedule. And then there is a big rush to get ready. I need to remember things like preparing my evening medications to take with me and changing my ventilator battery so that it doesn't die before I get home (Yes, it's always nice to be able to breathe; it really adds to the experience!)

In the end, though, it's always well worth it, especially when the Phillies win. I couldn't have scripted the ending any better tonight: two outs in the bottom of ninth, tie score, when catcher Carlos Ruiz hits a dramatic home run. Game over. Phils win!!!

Feeling Blue

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 fun at his out-of-control right arm and its effect on everything from voting to hailing a cab or taking on condescending people with his signature phrase, "Hey, buddddy!"

I couldn't help but admire him for being able to laugh about his disability. I try my best to do the same and have incorporated bits of humor into my autobiography (unfortunately, no news to report about that), but it's not always easy.

It was definitely an enjoyable evening. My only concern was that my seat was so close to the speakers that I worried about my defibrillator, as being in close proximity to magnetic fields such as those produced by speakers can potentially render defibrillators temporarily inactive.* The last thing I needed was to have a problem in the middle of the show -- it would have been a real shocker! Okay, I guess I don't have a future in stand-up (or sit-down, for that matter) comedy, but I had to at least try to say something funny in this entry.

*A call to the nurse practitioner on Monday morning assured me that I was most likely sitting far enough away from the speakers, though she suggested that in the future, I might want to consider sitting a bit further away.

The Weakest Link

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 was now to get me home. A few phone calls later and we learned how to use the lift's manual override. As we discovered, it has one speed: FAST! Let me tell you, I've never been happier to hit the ground. By the time we got home, I was so tired and hungry that I could have eaten someone!

For a relatively small sum, the folks at Accessible Vans and Mobility were able to fix the problem -- today (what a relief). They reattached the wire and added a spring that should have been there in the first place to relieve some of the tension on the wire.

But come to think of it, there are plenty of other weak spots in my life. You see, an existence such as mine is heavily dependent upon technology. The equipment that I use to move around, to get in my van, to operate my computer -- and even to breathe -- is so reliable that I sometimes take it for granted. But if any of these things fails, all that goes out the window -- and this life that I live becomes ever more complicated.

Of course, when that wire snapped yesterday, about the last thing that I was saying was how reliable the lift is. No, I think there were a few other words coming out of my mouth at that particular moment!

Back by Popular Demand

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 saying the right thing. Certainly, it is important to make one's best effort to address patients with disabilities properly, but at the end of the day, I can forgive mistakes like that if the doctor demonstrates to me that he or she really cares.

It was with a heavy heart that I spoke to students today, having first attended the funeral of my friend Eric, who had Duchenne's. Although we had not been close for many years, he was my first friend with the disease. We were the same age and first met almost 20 years ago, when we were both just becoming wheelchair-dependent. I thought it was so cool to know someone else going through the same things that I was.

I used to be able to tell myself that it wasn't going to happen to me (even though I knew the reality), but after losing four people I have known to this disease, it's not so easy to convince myself of that any more. Even so, I'm still here and I owe it to the guys who aren't to do something constructive with whatever time I do have. My book is not just for me, but for them as well. And every time I shout obscenities at the TV when the Phillies are losing for a change, it's for them, too!

A Word About Political Correctness

A Word About Political Correctness

In 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 with a disability." The logic, which is certainly understandable, is that you should focus on the person first, not his or her disability. Trust me, people will adopt such language, but they will still have no idea how to act around a person like me. I'd much rather have people treat me well than merely use the right language when they refer to me. It is well known that people are uncomfortable interacting with people like me to begin with. If I sit there and get so particular about what words people use to describe me, how is that going to make them feel any more comfortable?

At the same time, it's understandable why it's not nice to refer to someone as "wheelchair-bound" ("in a wheelchair" is appropriate). It has recently come to my attention that I should be referring to my muscular dystrophy as a "disorder," not a "disease." I'm not sure how I feel about that one. The idea behind it is that muscular dystrophy is definitely not a "virus" that makes a person "sick," which is what the word, "disease" implies. But I don't particularly like the word, "disorder" either. In my own writing, when I use the word "disease," it has no meaning to me. I'm simply using it as a point of reference in conveying my thoughts. That argument obviously doesn't fly when it comes to describing a person's race, religion, etc., but I'm only talking about political correctness as it pertains to disability.

I'm sure that there is no shortage of opinions out there on this subject, so let's hear them...

Genetically Speaking

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 while my life has been good and that I have been able to achieve plenty, if it is possible to prevent a child from being born with Duchenne's, I believe that should be done.

Certainly, I like the person I have become. However, I would trade it in a heartbeat for a "normal" life. And there is a huge physical, emotional, and financial burden placed on families raising a child with the disease. People can obviously deal with such concerns, but why go through all of this if you can avoid it in the first place?

The discussion lightened considerably when someone asked me what I didn't like about going to summer camp (the subject of one of the photos in my presentation). Yeah, something about group showers and using the toilet while your fellow camper is attempting the same feat on the adjacent throne didn't really do it for me.

But, hey, maybe that's just my personal preference!

Kickin' Around the Tires

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 mid-wheel drive means it has six tires instead of the four to which I have been accustomed for nearly 20 years (I can't believe I've been in a wheelchair that long). When going up an incline, the chair uses the back four wheels; when going downhill, it will use the front four.

As the physical therapist told me, "You'll probably hate [the mid-wheel drive] for the first week, but then you'll really like it."

Apparently, the turning radius is not nearly as wide, so I should be able to navigate turns more easily. However, I'm sure that it will run over toes just as easily, so people better be nice to me -- or else!

The new chair will also be able to recline. Hopefully, that will make it possible for me to take a nap during the day when I get tired. I never do this now because it would mean getting out of my chair, into bed, and then back into my chair.

The most important component of this wheelchair, as with my current one, is the mini-joystick, which allows me to control the chair with the tip of my thumb. As I told the physical therapist and the salesman, I would be unable to drive my chair without such an innovation. I explained how, when I got my current chair with a mini joystick, driving became so effortless for me once again that I could not sit still, so to speak. When people ask me now why I'm constantly moving around, I tell them that I am "pacing!"

I was my usual humorous self throughout the process today. I got a good laugh when the salesman asked me if I were sure that I didn't want a color other than black.

"No sparkles or anything like that?" he asked.

Sparkles? I don't think so. Look, this is coming from a guy who once had a teal wheelchair frame when that color was popular and from the same guy who once had a fire engine red seat cushion. It's a wheelchair, for god sake! Trust me, having a really cool color isn't going to make being in a wheelchair any better. Being able to recline and drive really fast, well, that's a different story!

What's up Doc?

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!

Winheld's World Rant of the Week

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 narrow that I have to drive perfectly just to get inside an examining room. Fitting the doctor, my nurse, and me in the same room and being able to close the door requires all sorts of coordination. Kind of reminds me of the old "How many people can you fit inside a telephone booth?" experiment. (Anyone remember telephone booths?)

To be fair, the costs involved in renovating doctors offices are probably too high for individual doctors. But shouldn't there be a funding source for such projects? Maybe there is and I just don't know about it. Perhaps someone out there can shed some light on the subject.

Many times, hospitals aren't any better, unless you are in newly-constructed areas. Getting into the bathroom with your wheelchair is often impossible, and getting through doorways can be difficult. And then, if you try to get into bed using a Hoyer lift, as I do, the bottom of the bed is often too low to accommodate the lift.

I mean, come on people, if the places where people like me come for medical treatment are not accessible, how can we expect other kinds of places to be accessible? Medical care is a necessity; eating at a restaurant is not, but I've encountered far more accessible restaurants that I have medical facilities. What's wrong with this picture?

29 and Counting...

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 family, which took my mind off of things for a while. And I started thinking about what I want to accomplish in my 29th year. Maybe I don't have many years left, but I'm determined to make this one count. Hopefully, I'll find a publisher for my book. I'll go girl-watching -- I mean on long walks in Center City (I can't believe I just said that!) -- spend time with friends, and attend lots of baseball games. Hey, maybe I'll even see the Phillies win the World Series (I won't hold my breath on that one even if my ventilator would let me!)

And hopefully, next year at this time, I'll be writing about a 30th birthday bash the likes of which have never been seen!

He's Baaack!

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!

Home Alone (Sort Of)

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! And with the assistance of my nurses, I've had a chance to dabble in the kitchen. We haven't burned down the house yet, which is always a plus!

But all the fun comes to an end late tomorrow night, when my parents return. After they're done calming Zoe, maybe they'll say hello to me...

Heart of the Matter

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 ago when I first rolled into his office with a heart function of nine percent.

With excellent medical care and lots of luck, we've managed to turn things around. I'll turn 29 soon. And that's all the evidence I need.

A Star is Born

A Star is Born

In 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 down and the words just came to me as I answered each question as if on cue.

It was a great experience and hopefully, it will generate some interest in my book. But it wouldn't have happened without some great people behind me. Thanks, guys!

SEE ME ON TV!!!

SEE ME ON TV!!!

CATCH MY INTERVIEW W/ NBC-10 MEDICAL REPORTER CHERIE BANK

TUESDAY (2/20) BETWEEN 4 & 5 PM, NBC-10 (Philadelphia)

For more details, please see entry from 2/13

(TV news is not an exact science, so this could change, but I have been told that this should happen...)