Please click here to order your copy of Worth the Ride: My Journey with Duchenne Muscular Dystrophy. All proceeds go to Parent Project Muscular Dystrophy (PPMD)

Saturday, June 30, 2007

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!

Monday, June 18, 2007

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...

Monday, June 04, 2007

"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)