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Tuesday, November 10, 2009

Just a Little Bit Further


After submitting the first draft of my master's thesis a little more than a week ago, I received feedback from my advisor that was positive, but nonetheless indicated that I had some work to do. With a week to make the necessary revisions, I thought it would be no big deal.

But as last week wore on, it began to sink in just how much things had changed for me since I began my master's program in urban studies back in September of 2000. Gone was the strength and energy that had once allowed me to push everything else aside and complete my work, no matter how long it took to get things just right. Now, I have to be more vigilant about my health, which takes away from the time that I have to work. Even when I have the time, my energy often betrays me, thanks to my weak DMD heart and the medications I take to sustain it. And after getting shocked 18 times by my internal defibrillator on one very scary night in July, I had to make sure that I did not allow myself to get too stressed out! So I tried to work at a slower pace, taking frequent breaks. It was highly frustrating, but I knew that (like Red in the clip above from my all-time favorite movie, "The Shawshank Redemption") if I had come this far, I could come just a little bit further.

By yesterday, with a deadline looming and on the verge of exhaustion, nothing was going to stop me. And, if only for a moment, I was able recapture some of my old magic, pushing myself every time I wanted to take a break. Just after midnight, I submitted my paper. We'll see what happens, but it sure was nice to visit with my old self and to know he is still within me and I can channel him from time to time!

UPDATE: My advisor was impressed...my paper now goes to the rest of my thesis committee for review...

Friday, October 30, 2009

Mission Accomplished


For those who have not heard, I finally finished writing my master's thesis in urban studies late last Friday night. While it is only a first draft and must go through several approvals until it is officially accepted by the university, I consider this to be a pretty momentous occasion, in light of the fact that six years ago, I had abandoned all hopes of earning my master's degree and withdrew from school. At that time, I was adjusting to life with a tracheostomy and a ventilator, along with the nursing care that accompanied it. In addition, I had begun taking a bunch of cardiac medications, which made me feel exhausted and unmotivated. In fact, I was so resigned to the fact that I would never earn my master's degree in the field that I love, I referred to my autobiography as "the thesis I never wrote."

Today, I am taking even more medications and battling fatigue -- and anxiety (caused by my cardiac scare over the summer). However, after my autobiography was published last year and I was still alive and kicking, I had decided to revisit completing my degree. Thankfully, the Department of Geography and Urban Studies at Temple University welcomed me back with open arms and gave me the chance to do so. I also had many people motivating me, particularly my friends, Art and Emma, who each, in their own way, helped me to realize that finishing my degree would be a worthwhile endeavor.

In case you were wondering, my thesis is about housing accessibility for those with disabilities in Philadelphia. My research entailed interviewing several housing developers working in the city to find out their opinions on housing accessibility requirements under the law, as well as to learn about their attitudes toward and knowledge of people with disabilities. My hope is that by talking to these developers, advocates for those with disabilities will be better able to understand the development process and can bring about a better housing situation for people with disabilities in Philadelphia, more than a quarter of whom live in poverty and many of whom are aging.

I will post further news about my thesis as soon as I hear more about it, but I will most likely be graduating in January!

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!

Sunday, August 16, 2009

A Small Scare


I thought I had enough of the hospital a few weeks ago when I was hospitalized for atrial fibrillation and had received 18 shocks from my internal defibrillator (ICD). But, sitting in bed on Thursday night talking to my dad, I felt my heart beating faster than it had been lately and felt certain that I was about to receive a shock from my ICD. That never happened, but my heart continued to beat at an unusually rapid rate and so I made a decision to take a trip to the hospital emergency room and get things checked out. Instead of calling an ambulance, I relied on my dad's fast, but safe driving.

Upon arrival to the emergency room no one seemed in a particular rush as they filled out the necessary paperwork. Me, on the other hand, well, I was very anxious to see what was going on with my heart. Once I was hooked up to a heart monitor, it indicated that my heart rate was higher than it had been recently but not dangerously so. Next, the nurse put an IV into the back of my hand -- on the first try! Miraculous! Blood was taken and it showed a high white blood cell count and a higher than normal level of a particular heart enzyme that is typically elevated when your heart has suffered a trauma. Based on these findings I was admitted to the hospital, where I stayed until yesterday.

During my hospitalization there was nothing unusal about my heart and doctors were never able to explain the findings in the blood work. As my blood was retested the numbers seemed to come down and no signs of any infection were detected in me. At first there was some concern that I had already become toxic with the amiodarone that I had been taking since my last cardiac scare. Usually side effects take a while to appear, which is why it was surprising that I was starting to show some side effects. In the end, though, it was determined that my symptoms were most likely not due to the medication and I was put back on it.

By 11 am yesterday I was home again. I still think it was a good idea that I went to the hospital even though it seems that everything is fine. After my last scare I'm not taking any chances of getting shocked by my ICD, so if something doesn't feel right I'm heading to the nearest emergency room. I hope this doesn't happen for quite some time!

Special thanks to Lauren for typing this entry.

Thursday, August 06, 2009

Back on the Horse


Nearly two weeks later, I'm still getting over my big cardiac scare. It has been difficult both physically and emotionally. But the way I figure, I'm still here and it's about time to get back to doing the things I love. Like going to Phillies games. Tickets to see the World Champions are hard to come by these days, but I was able to score a pair to today's game, featuring the debut of newly-acquired ace pitcher Cliff Lee.

The only thing hanging in the balance was the weather. But with Fox 29 chief meteorologist and my good friend John Bolaris in the house, I figured we were in good shape. And with Cliff Lee on the mound, the Phillies were in good shape, cruising to a 3-1 win over the visiting Colorado Rockies. It was the first time in five tries this season I witnessed a Phillies victory. I truly enjoyed myself and it was big step for me as I try to get back to normal.

Saturday, August 01, 2009

A Real Shocker!



"He said...he said it wasn't such a good day to die."

Kevin Bacon in "Flatliners" (1990)



Early last Saturday morning, I thought there was a distinct possibility that I would be blogging no more. In fact, as they say, I thought I had "bought the farm". You see, after spending Friday afternoon trying to control what I thought was a simple case of dehydration causing my heart to beat irregularly, the defibrillator in my chest decided to take action.

As I lay in bed late Friday night contemplating whether I should seek medical attention, I heard what sounded like a light bulb popping and saw a blue streak in front of my eyes. It took me a second to realize that "Oh my god, it went off!" I told my nurse to wake my parents up, and as he was exiting my room, the device shocked me again. It felt like being punched in the chest.

911 was called and within 5 minutes (although it seemed like an eternity), EMS arrived to transport me to the emergency room. Though I was really anxious of having my contracted legs injured while being transferred from my bed to the stretcher, the EMS personnel and my nurse were extremely careful. Throughout the 15-minute ride to the hospital, the defibrillator shocked me at least a dozen times. I was wondering why the device wasn't able to regulate my heart and was continuing to fire at will. I looked up at the white lights in the ambulance roof, hoping that wouldn't be the last thing I ever saw.

Upon arrival at the hospital, the first goal was to insert an IV so that medications could be given to me to bring my heart rate under control. Easier said than done with my hard-to-find veins. Meanwhile, my defibrillator was shocking me seemingly every few seconds. Just before a shock was delivered, I would feel a weird crawling sensation near my heart, which I figured was the device charging up to fire again, and the heart monitor above me would show a rate as high as 200 beats per minute. The only thing that seemed to help prevent a shock was when the nurse massaged my carotid artery.

Once an IV was finally inserted, doctors began a drip of a medication called amiodarone, an anti-arrhythmic, which began to regulate my heart. The shocks grew less and less until finally stopping. At this point, I was transferred to the ICU, where I began a weekend-long stay for observation. Later that morning, a technician from the manufacturer of my defibrillator arrived. He interrogated my defibrillator and determined that the device had been shocking me for atrial fibrillation, a serious condition typically treated by medication alone, but not nearly as life-threatening as ventricular tachycardia or ventricular fibrillation. Although devices such as mine are smart, once the heart rate reaches a certain speed, it is unable to distinguish between atrial fibrillation and ventricular tachycardia, and therefore delivers a shock. The technician adjusted the parameters of my device so that it will attempt to better distinguish between the two kinds of rhythms. A cardiologist at the hospital visited with me and my mother and explained the situation to us. They would start me on an oral version of amiodarone, see how I tolerated it, and if there were no problems I would be discharged within a day or so.

Staying in the hospital, of course, is no easy task when you have Duchenne's. To their credit, the nurses, nursing students, and respiratory therapists were extremely caring and kind. Even still, things like turning me are not the everyday situation for nurses who have never cared for someone with DMD. Although I ended up with a few aches and pains, there wasn't a whole lot that anyone could have done to prevent this. I wasn't completely comfortable with the hospital ventilator the respiratory therapists switched me to -- it was also overly sensitive and would alarm constantly -- but I made the best of the situation. Without my own air mattress I was unable to get extremely comfortable in bed, although the bed in which I lay was actually pretty state-of-the-art. Because I had no way of using a nurse's call bell (or a call bell into which I could blow), my mother spent the weekend with me, sleeping in a chair at my bedside at night. It was a good idea that she stayed with me to make sure that my complicated list of medicines was followed, and also to assist with transfers and positioning. I couldn't have gotten through this ordeal without her, as well as the other family members and friends who gave me their support at such a trying time.

By Sunday night, the anti-anxiety medication I had been taking round the clock had sufficiently constipated me. And really, no stay at the hospital would be complete without a delicious milk-and-molasses enema! Very effective, I'll tell you, but I could find a better way to spend a Sunday night.

Early Monday morning, I got the news that I was to be discharged within a few hours. After a sleepless night, I couldn't wait to get home in my own bed and sleep away my nightmarish weekend. The good news is that the medicine seems to be working and I am still here. The anxiety remains and it may take a while until I am not afraid. My life may never be the same, but like the quote above, "it wasn't such a good day to die." So I guess I'll stick around for a while!

Special thanks to Julie for helping me type out such a long entry!

Saturday, July 04, 2009

Independence Day?


It's Fourth of July, Independence Day, America's birthday today. Should be a joyous day -- parades, fireworks, hot dogs, hamburgers, family and friends, and Phillies baseball. But forgive me if I'm not quite feeling it.

America is one of the better, if not best, places to live in the world. I wouldn't be here without its first-rate medical care. I received an excellent education here. And I am grateful for the freedom to express myself as I am right now. But for people with disabilities, the promise of this great nation is not quite within in reach. As I write this entry, I am reminded of the great Frederick Douglass' Fourth of July speech, in which he praised the ideals upon which the nation was founded, while explaining that on this day, he could not celebrate while his fellow African-Americans were enslaved. I do not seek to compare having a disability to the cruelty of slavery, but I understand Douglass' sentiment.

In America today, people with disabilities are restricted in their ability to live independently due to lack of funding for care and inexpensive or subsidized accessible housing. Some of my compatriots are forced to live in nursing homes. Americans don't believe in handouts. Yet if people with severe disabilities like mine work, they are limited in what they can earn in order to keep from losing the nursing care that no private insurer would provide unless I were a multi-millionaire. Americans are taught as children the value of saving. And yet people with disabilities are allowed to save a pittance before they lose their benefits.

Don't get me wrong. There are much worse places I could be. I also have great hope for the future of people with disabilities in America. Just don't get bent out of shape if I'm feeling less than enthusiastic today.

Sunday, May 31, 2009

Ready for Some Football?




While living with DMD isn't the end of the world, I hope that one day, there will be a cure for young boys diagnosed with DMD so their muscles work and they can walk -- or even play football with their friends.

Making that happen was the goal of today's Inaugural Tournament to Tackle Duchenne Muscular Dystrophy. Under blue skies in Philadelphia's Fairmount Park, seven co-ed teams competed in two-hand touch football. A portion of their egistration fees as well as money raised from food and raffle ticket sales will go to Parent Project Muscular Dystrophy. So far, it looks like we raised about $1,200! If you would like to add to that amount, please click here.

None of this would have been possible without the hard work of my childhood friends Sarah and Ken. We would like to thank the folks at Philadelphia Sport and Social Club for coordinating the tournament, all of our sponsors, and everyone who participated, volunteered, or attended.

See you next year!

Monday, April 27, 2009

Smokin' Hot!


Man, is it smokin' outside! With temperatures pushing 90 degrees here in Philadelphia over the past couple days, you'd never know it's only April. I'm not complaining, though. Due to some of my medications, I am always freezing. But not the past few days. Taking full advantage of this opportunity, I used some soon-to-be expired train tickets to head into Center City and sit in Rittenhouse Square, girl-watching and eating pizza. The next day, I decided to cruise in my chair along Kelly Drive, girl-watching again. Are you noticing a common theme here?

As for the cigarette, relax, it's only a tasteless joke -- my body is messed up enough from DMD that the last thing I'd ever do is smoke! Anyone who knows me knows I'm the most neurotic, overly cautious person who would never do anything remotely dangerous. But you have to admit, that photo would scare every teenager away from ever picking up a cigarette!

Okay, I'm going back outside -- not to poison myself, but to enjoy the sun's heat while it lasts...

Saturday, April 18, 2009

In a Fog


It's a beautiful day, sunny and warm, but I feel like I'm in a fog. Ever since my cardiologist increased my beta-blocker a few weeks ago to further reduce the irregular heart rhythms I had been experiencing (despite an increase in the same medication only a few months ago), I have been exhausted. And by exhausted, I don't mean very tired; I mean practically unable to function. I wake up tired and it takes me all day until I feel like myself.

The good news is that my doctor believes that I will adjust to the medication increase and be less tired. I know I adjusted the last time we increased it. And that would be a good thing, as I'm going to need all the energy I can muster over the next few months, while I complete my master's thesis and do some traveling, among other activities.

The bad news is, of course, that my heart may be getting weaker and you need a heart to, well, live! Inevitably, the heart will weaken when you have DMD. Whether that's what is happening now, even my doctor can't know for sure. Yeah, that's scary and unsettling, but I have no choice except to live to the best of my ability. After all, I could be around for a while and it would be a shame to waste even a second. To quote that noted philosopher, Ferris Bueller, "Life moves pretty fast. You don't stop and look around once in a while, you could miss it."