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Monday, September 28, 2009

Breathing Easy

When you have Duchenne's, you can never be sure when your condition will worsen and in what ways. For me, I have noticed a decline approximately every 5-7 years, whether it be nutritional, cardiac, skeletal, or respiratory. When I began using a ventilator following my tracheostomy in 2002, I was able to spend at least a few hours each day breathing on my own or "sprinting". It was very helpful for transfers, bathing, and using the bathroom. I knew there was a possiblity that at some point I would be become completely ventilator-dependent.

Well, a little more than 7 years later, I am quickly nearing that point. After as little as 20 minutes, I am noticeably working harder to breathe, and my CO2 level creeps over 50 (the normal range is between 35-45). This results in headache and fatigue. My heartrate and blood pressure also increase. Fortunately, once I return to the ventilator, everything improves within as little as 10 minutes.

Though I have always been against accepting more medicine or treatment unless it is absolutely warranted, sometimes it is necessary to lose the small battles in order to have a chance to win the big war. In the end, of course, you can never defeat DMD, but I want to muster all the force that I can. So if that means being dependent on a machine 24/7, then so be it. I still have things to do and places to go!

Saturday, September 26, 2009

When the Saints Come Marching In...

On the eve of another NFL Sunday, I would be remiss if I did not post pictures from the Philadelphia Eagles' home opener last Sunday, which I attended thanks to a friend of a friend in a high place. On a picture-perfect day for football, my dad and I took our seats (I brought my seat) near the 30-yard line and proceeded to watch our beloved Birds go down in flames, 48-22, to the surprising New Orleans Saints.

Despite the disastrous results, it was still a great day with all the pomp and circumstance of a NFL home opener, not to mention the chance to catch up with friends old and new. Maybe without me and my dad (maybe just my dad) in the crowd, tomorrow's result will be a lot better!

Saturday, September 19, 2009

Catching Up

Back when I was a student at Temple University, I hired several student helpers to assist me on campus. Due varying class schedules (mine and theirs), most helped me for only a semester or two and then pretty much disappeared from my life.

So you can imagine my surprise when, a few months after writing a guest column for Temple's alumni magazine, I received an e-mail from Nicole (in the picture above). I instantly recalled how she had been one of my favorite helpers. We had lost touch shortly before graduation.

After e-mailing back and forth a few times over the past year, Nicole, who hails from New York, stopped by today to see me and to catch up on old times. Though we graduated college nearly 10 years ago, Nicole hasn't aged one bit and has the same engaging personality that made look forward to seeing her every day. We talked and talked and talked some more today (certainly no stretch for me). We took some photos and then I presented her with the very last first-edition copy of my book. Hopefully, that made her trip Worth the Ride . My only regret is that Nicole doesn't live near Philadelphia.

Have a safe trip home, Nicole. Come back to visit soon!