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Thursday, March 27, 2008

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...

Wednesday, March 26, 2008

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 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."

Sunday, March 09, 2008

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.

Saturday, March 08, 2008

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.

Wednesday, March 05, 2008

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...

Tuesday, March 04, 2008

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!

Monday, March 03, 2008

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!