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!