SCOTT SANDS ALIVE

I used to be strictly old school when it came to portable ventilators. My belief was if it was built like a tank, it was reliable. And for the most part, I was usually correct. You could hit my old ventilator with a sledgehammer fifty times and it would still deliver. It was indestructible, the consummate workhorse, hefty and tough. But we are in an age now where technology has gone digital and is giving way to smaller, more efficient devices. Very soon the old analog stuff will be rendered totally obsolete. And ventilators are no exception. The manufacturer ceased production of my ventilator a year ago and will only service and support these machines until 2014. I realized that it was time for me to quit kicking and screaming and accept change. It was time for me to jump into this digital world. It was time for me to get a new ventilator! Enter the Trilogy100 by Respironics, a modern replacement for my trusty old tank of a machine, the Respironics PLV-102. The Trilogy is much smaller and twenty pounds lighter than my previous rig, and far more versatile. This little technical wonder comes with a detailed digital display, and even houses an SD memory card, which keeps a record of patient ventilation settings. The machine itself also provides an unrivaled six hours of battery life!

I started on the Trilogy two months ago and have never looked back. Numerous adjustments and frustrations had to be dealt with in the early stages, but now that I have gotten used to this new toy, I don’t even know it is there. Breathing is my friend, and the Trilogy does a great job in preserving this relationship. And although my old analog machine is slated for a spot in the respiratory home, I will never forget twenty years of dedicated service.

Back in high school, some friends and I wondered how old each of us would be in the year 2000. So we all did the math and figured it out. I would be thirty-four years old. From a teenager’s perspective, thirty-four was ancient, and to think that I was going to surrender my youth one day seemed unimaginable. Me? Old? I cringed at the concept.

At fifteen, I wasn’t thinking much about Duchenne muscular dystrophy, and the fact that thirty-four might not be in the cards for me. I played hockey. I played baseball. I cheered for the New York Islanders and Yankees. I listened to KISS and punk rock and alternative. I had an obsession with Pac Man, Donkey Kong and Space Invaders. I enjoyed horror movies and ridiculous comedies. I hung out at the mall. Duchenne muscular dystrophy was last on my agenda. It was second nature to me, all I had ever known. I was your average teen…just in a wheelchair. Nothing special. No biggie. Even though I had to deal with the notion of mortality years earlier when Duchenne claimed my brother, it never really crossed my mind that this disease could take me too. At fifteen, all I could see was a promising future, just like everyone else.

Then – in a blink – I hit thirty-four. And Duchenne muscular dystrophy would grow in significance. Every year would be more challenging and tenuous. My mortality had risen to the forefront and I was convinced that I’d never survive the decade. So much for listening to doctors.

Today I turned forty-four. Forty-freaking-four! And those same doctors are dumbfounded. Not only have I survived the previous three decades, but now I am almost halfway through the current one! Now, I have two options. I can either look at my birthday as simply another year of prolonging the inevitable, or I can relish in yet another victory over my greatest rival. Well, I happily and proudly accept this as a victory! I no longer cringe at the thought of getting old because I am extremely competitive. The older I get, the more wins I get, and the more I can tell Duchenne muscular dystrophy to kiss my crippled ass!

Over the years, I have certainly seen my share of Yankees - past and present - as well as famous broadcasters, sportswriters, and assorted celebrities adorning the private lobby at George M. Steinbrenner Field in Tampa, Florida during Spring Training. One day before a game, I entered this lobby - as all disabled guests are permitted to use the elevator inside to get to the seating level - and right in front of me stood the stadium’s namesake himself, the legendary owner of the New York Yankees, the man known as The Boss. I was seconds away from an encounter with George Steinbrenner himself! This happened several years ago, shortly before his health went into rapid decline and he was still large and in charge.

The elevator doors slid open and Steinbrenner darted in ahead of me. After all, it was his elevator and he should go first, right? Anyhow, he stepped to the rear and waited patiently for a few guests and me to hop in. We reached the upper level and I began my exit as The Boss looked on. As I was backing out my large power wheelchair, a small flock of stadium vendors, ushers and assorted personnel - all employed by Steinbrenner and the Yankees - ignored my struggle and began to plow into the elevator. Seeing that they were not giving me any room to move, The Boss emphatically ordered them to disperse. “Get out of the way”, he shouted angrily at one particularly rude employee, “Can’t you see the man’s in a wheelchair???” Fearing the owner’s wrath, everybody scampered hurriedly out of my path.

Through that single outburst in true Boss fashion, I got to witness two sides of George Steinbrenner first-hand. I saw the fiery, authoritative, hard-nosed, intolerant team owner whom I had always read about in the papers, as well as the big man with the soft heart who often went unpublicized. It was at that precise moment when I realized that a great man is not measured by wealth or power or championships or free-agent signings. He is not measured by newspaper headlines or dominance in sport and business or worldwide attention. The true mark of a great man is compassion. And The Boss had plenty of it, as evidenced by his crude, yet still compassionate, elevator tirade. George Steinbrenner was looking out for someone less fortunate in some respects, and that just raised his already high stature in my eyes.

When I heard the news of his passing this week, I totally ignored all the pomp and circumstance that was the public George Steinbrenner and simply remembered him fondly as the man who cleared the way. Thank you, Boss!

Yes, change is inevitable, but that doesn’t necessarily mean we always have to like it. My new power wheelchair arrived three weeks ago and I have just now begun to get all the kinks worked out. Let’s just say I haven’t really enjoyed the transition from old to brand new. I am never all too enthusiastic when it comes to change. I accept it, but I dread it. So, why change something that is still doing the job? Well, power wheelchairs take a pounding and have an average life expectancy of about five years if used and abused as often as mine.

Like automobiles, power wheelchairs require general maintenance for a few years before slipping into a downward spiral of breakdown and repair. So Medicare, Medicaid and private insurance companies usually follow the five-year plan for replacing these chairs. It is often more cost effective for them to purchase a brand new chair than to constantly shell out for parts and labor to keep the old one running. Funny, my old chair had a serious breakdown a week before I received the new one. How long have I had the old chair? Oh, a little over five years. Talk about accuracy!

Besides, bodies and needs will always change. For those of us with contracted, contorted, complex bodies, changing wheelchairs can be a real pain in the ass! This is where a good mobility and seating specialist comes in handy. I met Sam about twenty years and four wheelchairs ago, and he has never let me down. Sam was the guy who evaluated me for my new wheels back in February, determined the correct specifications for me, followed all of the Medicare protocols, did tons of that ridiculous government paperwork, and ordered and delivered the chair to my door. All that was actually the easy part.

Over the past three weeks, however, Sam has really been tried and forced to earn his keep by enduring hours of adjustments to the chair. When a fraction of an inch means the difference between comfort and intense pain, between function and incapacitation, Sam surely had his hands full. Due to my scoliosis, I must be positioned precisely in the chair or I will suffer from pain and discomfort in my legs, hips, back, neck, shoulders and elbows, and dangerous pressure sores will ultimately develop in some of these areas. Sam had to tinker repeatedly with the padded head, torso, and thigh supports until I was seated properly and therapeutically in the chair. But the greatest challenge was hand and wrist positioning. Sam took on the painstaking task of molding a plastic armrest to make me as independently functional as possible. No exaggeration, it only took about a hundred adjustments to finally get it right so I could manipulate the tiny, ultra-sensitive joystick to drive the chair! Plus, Sam had to be sure to get me positioned at a precise angle and particular height at my desk for me to be able to use my right hand to work the touchpad for my computer and write with a pen. Patience is definitely one of Sam’s best assets.

Well, I went from hating this wheelchair to absolutely loving it in a few short weeks. I still miss my old ride, and the change was somewhat tortuous, but it so refreshing to cruise around in a shiny new hotrod! Those of you who have done this certainly know the feeling.

I cannot believe that six whole months have soared by since I was given a new lease on life. A tiny device called an ICD was surgically implanted beneath a patch of muscle tissue in my chest. Since I have this disease known as Duchenne muscular dystrophy, which has been ravaging through my body over the past four full decades, I was surprised that the surgeon could locate more than a few thin strands of muscle in there with which to work. But he did, and now I have a small metal box in my chest that I affectionately refer to as the iFib. This iFib came complete with wires that are connected to my heart. The iFib is both a pacemaker and defibrillator all boxed up in a compact little package. It is about the same size as an iPod Nano, but it can’t play music. All it does is guard against sudden death. Let’s see an iPod do that!

The pacemaker has been working like a charm, as evidenced by my steady heart rate. I am not sure about the defibrillator, though, as the only way I will ever know for certain whether or not it is functioning properly is if my heart rate ever goes through the roof and I get shocked out of my skin. Trust me, I am not all too eager to find out, but having this thing in my body does give me peace of mind. The iFib may indeed save my life one of these days, and it may very well buy me a few more years. And that in itself made the surgery worthwhile.

Be it a tracheostomy tube, ventilator, medication or an iFib, you must arm yourself with all of the available ammunition to have a fighting chance against Duchenne muscular dystrophy. Give me the arsenal and I will gladly battle in the trenches, not just for me, but for all others involved in this dirty little war.

A group of my old college fraternity brothers - three by plane, two by car - traveled in for a few days to visit with me. After hearing about my complete heart block and subsequent defibrillator implant surgery a few months back - two things that nearly took me out - the guys planned the trip. They wanted to see me again before I, uh, well, you know. These men all have good hearts. These men are true friends. I have known them for about twenty-five years now, and nothing has changed. There may be some extra wrinkles on our faces these days, but our personalities are exactly the same as when we were back in school. Stories of the past, laughs, and catching up on things spelled a great time for all of us.

So many years had come between the boys and I before we were reunited a little while back. Life and distance just got in the way. After college, they were all out crafting their lives while I was fighting for mine. They were continuing their educations, securing jobs, getting married, having children, setting up homes and doing the norm. And I was getting a tracheostomy, living on a ventilator, adjusting to nursing care, battling countless respiratory infections, pumping in medications, dealing with heart problems, and battling a host of other serious medical issues. Not to mention staying alive, which is a ton of work in itself. It’s funny how far apart we are in terms of life experience. These guys have much more in common with each other than they do with me, yet we do share a bond of brotherhood that was established by joining Tau Kappa Epsilon Fraternity ages ago.

As they were saying their goodbyes, Mike left me with some parting words. “I know you’re fighting,” he said. “Hang in there, brother.” Well, Mike, don’t worry because fighting and hanging in there is what I do best. It’s all I know. Besides, I have no choice but to stick around a bit longer, especially if I ever want to see those guys again.

Tom Mecke is the man! Tom Mecke is my hero! Tom Mecke hit the big 5-0! I know, people turn 50-years-old every day, so why is Tom’s birthday so special? Well, Tom has a little disease called Duchenne muscular dystrophy (DMD) that usually steals life away at a much earlier age. Fifty is beyond a lifetime for guys like us. Fifty is rare. Fifty is huge. Fifty is a modern medical miracle!

Tom came along during the dark ages of DMD, when hardly anything was known about the disease. There was absolutely no hope for any real future. Things were bleak at best. Therapies? There were no therapies. Research was far from intense. Drug trials were virtually non-existent. Medical technology was primitive. Tom was born when iron lungs were considered high-tech devices. In fact, he even slept in one of those contraptions for years. He has come so far - fifty years to be exact - and has seen so many positive changes. Although a precise cure has yet to be found, Duchenne muscular dystrophy is now somewhat treatable. Numerous therapies and cardiac medications and implantable defibrillators and portable volume ventilators have certainly prolonged the progression of this disease and preserved so many precious lives. These advances have also vastly improved the quality of life.

There is no definitive medical explanation for his longevity, but Tom has his own theory. “Well, it is partly a family trait,” he says, “and the rest is from keeping my mind busy and from being just plain hardheaded.” Tom realizes that if you give just one inch, this disease will take ten miles in a snap. Tom is a man who simply refuses to budge. He is 50 and still going, and that is proof positive! His philosophy on life with DMD is what sustains him. “Do everything you can possibly do with what you have,” he asserts, “and definitely keep dreaming.”

Tom gives me the hope that perhaps my days are not quite as numbered as I thought. I am 43, but now I can look forward to more years of living. Turning 50 is hardly out of the question for me and for a world full of others with Duchenne. A real role model does exist, my friends, and his name is Tom Mecke.

Duchenne muscular dystrophy nearly was the Grinch who stole my Christmas. However, my Christmas came early this year, in November, when I received the greatest gift imaginable - another chance at life. No, I am not George Bailey from It’s A Wonderful Life, or was I visited by three ghosts, like Ebeneezer Scrooge. However, I did get a new lease on life, and I am more thankful than ever to be here to celebrate Christmas this year. With blessings already counted, I give you the story:

I was sitting at the computer minding my own darn business when the lights in the room suddenly went dim for a few moments, my head felt like bees were flying around inside, and my pulse rate plummeted into the low thirties. Turned out that I had experienced a complete heart block! According to my cardiologist, Dr. Chapman, this technically should have spelled the end of this blog and the end my life. Instead of the lights going dim, it really should have been lights out! Fortunately, a miracle happened during my visit to the emergency room - my heart seemingly flipped a switch and somehow corrected itself, and I survived.

But I wasn’t free to celebrate just yet, as it was likely that I would be hit by another complete heart block at any time. To avoid this, Dr. Chapman recommended that I get an Implantable Cardioverter Defibrillator (ICD), which is a combination pacemaker and defibrillator. The pacemaker would prevent my heart rate from dropping dangerously low and the defibrillator would shock my heart back into a steady rhythm if it started racing at a life-threatening pace. Great, not only would my pulse be controlled, but I could also be zapped at any moment. Yeah, like I can’t wait to be electrocuted! I kept envisioning myself getting shocked, flying out of my wheelchair and smashing into a brick wall like Wile E. Coyote in a Roadrunner cartoon. And to top it all off, I needed to have the ICD put in right away! Sudden surgery to guard against sudden death was not my idea of fun.

When Dr. Chapman showed me a sample of the actual device, I could not believe that it would fit in my chest. After all, I don’t exactly have pecs like the Incredible Hulk! Although the ICD was about half the size of an iPod, it appeared huge at first sight. Two wires would go from the device down through a large artery and be attached into my heart. You’re putting that thing in me? Was this guy insane??? I had been fighting the notion of an ICD tooth-and-nail for the past few years, but in light of the fact that I had just narrowly escaped death, I was forced to reconsider. The options were: be a sitting duck without the device, or get it and have some sort of protection against potential sudden death. My choice was simple - get the freaking thing! I wasn’t about to let Duchenne muscular dystrophy push me around. I was ready to keep fighting for my life!

Chapman called upon cardiac arrythmia specialist Dr. Roland Filart to perform the implant. Filart reviewed the procedure and filled me in on the risks, which were exceptionally high for someone in my condition. He told me that there was a slight chance that I could even die on the operating table. Die? Wait a second, that wasn’t part of the deal! Sure, I was scared, but I had tremendous faith in this man, especially since Chapman recommended him. And as a Christian, I also had an overwhelming faith in the divine, and knew I would be spared. Plus, I had a strong faith in myself, that I could weather any storm. I have been battling Duchenne muscular dystrophy all my life, so this surgery would be no different. I would not be beaten.

Dr. Filart awoke on the morning of the surgery with an epiphany. Instead of seating the ICD directly under my thin skin, which could cause erosion over time and would require additional surgery, he decided to place the device between my pectoral muscle and ribcage for extra support. However, this would require the handy-work of a thoracic surgeon. Enter Jeffrey Bott. Dr. Bott was the best in the business at this sort of thing, so I knew I was in good hands. He even took a moment to pray with me - and my family - right before I fell under the anesthetic. This only boosted my confidence in the guy. The procedure went exceptionally well and I survived.

I like to think of Chapman, Filart and Bott as my own personal Magi, the Three Wise Men who, together, gave me a single gift - the continuation of life. I am extremely grateful for these men, for the star that guided them, and for being alive to see another Christmas. My wish is that you all can find a way to appreciate the lives you have been given despite any adversities you might face. Merry Christmas!

A few months ago when Josh Winheld’s internal defibrillator went haywire and shocked him several times, I tried to ease his fear of dying with a little humor, albeit twisted. Our Facebook chat went something like this:

Josh: “It was scary and made me think about dying.”

Me: “What are you talking about? You will probably be writing my obituary one day.”

Josh: “No, you will be writing mine! LOL”

Me: “Ha, ha, I don’t think so!”

Josh: “Well, we’ll just see about that!”

Well, I recently learned a huge lesson - never doubt Josh Winheld! I actually learned this one the hard way as, sadly, Josh lost his life to Duchenne muscular dystrophy. The same disease that took my brother and so many of my friends, the same disease that is gunning for me, finally came for Josh. Although his will was strong and his spirit high, his body simply couldn’t take it anymore, and he drifted away. It’s an all too familiar reality for those of us - young and old - with this cruel disease.

Two years ago, Josh became an avid reader of my blog, and reached out to me through e-mail. He sought my advice on how to cope with not having the things in life that those without severe disabilities do. Things like independence, a steady job, a house, or a wife and children were very important to him, but at the time, he was struggling with the fact that for people like us, people with Duchenne, the odds of having those things are slim. He was curious to know how I deal with this issue. I told him that I focus on what I know I can possibly achieve, rather than dwell on what is improbable. And since giving up is just not an option for me, I go out there, do as much as possible, and do it to the best of my ability. Josh completely agreed with this philosophy and a solid friendship was born. I immediately thought very highly of him. He was an overachiever and would not allow Duchenne muscular dystrophy (DMD) to get in his way. We were very much alike in that regard, as well as in our interest in journalism. We both had college degrees in the subject and would often discuss journalism and the way we appreciated a well-placed hyphen or comma. As time went by, our discussion topics ranged from DMD to medicine to women to sports. I gave him such a hard time recently after my beloved New York Yankees knocked off his beloved Philadelphia Phillies to win the World Series. We joked and bantered and philosophized about life constantly. And that was the essence of our relationship. Though we were never physically in each other’s presence, Josh was my friend. He was everybody’s friend.

Josh was only 31, but he achieved more than most people in that short stint. His blog, Winheld’s World, had an international readership. He authored the definitive memoir of life with DMD, Worth the Ride, and donated all the proceeds to Parent Project Muscular Dystrophy. And he even completed his master’s thesis just before his untimely passing. He gave speeches at medical schools and conferences to increase awareness of life with DMD. He made guest appearances on radio shows to talk about the disease. Josh offered support to an entire community of DMD patients and parents. He counseled, inspired, motivated, and gave hope to all those touched by DMD. I even turned to Josh for support as recently as a month ago, when I went through a frightening cardiac episode that required me to have a defibrillator (ICD) implanted into my chest. Since Josh already had one of these, I immediately looked to him for advice and insight into life with an ICD. He was extremely enthusiastic when told about my forthcoming surgery. Josh had no interest in the little details; he was just happy that advances in medical technology have made it possible for guys like us to live longer. “Do it”, he asserted, “Give yourself a chance!” Josh was all about fighting DMD by all means necessary, and he knew that an ICD could be used as a weapon. Again, he was right. Why sit here and simply take it on the chin? I suddenly had a positive outlook on this whole ICD thing and went into that operating room with hope and optimism…thanks to Josh Winheld.

A college degree, a blog, a book, and a master’s all make for an excellent resume. And trails of kindness, caring, support and strength all contribute toward Josh’s work as a humanitarian. This man leaves quite the legacy! “There is no way I am going to waste my life,” he would often tell me. Josh was right. He was always right. Duchenne muscular dystrophy did not win. Josh did. His life was an epic victory, and he taught us that it is better to have lived and experienced despite a terminal disease than never to have lived at all.

Now, I leave you with a story. A scary thing happened many miles away on the day of Josh’s funeral that could have easily had me united with him on the other side. My nurse, James, and I just finished a fast food lunch in my van. James left the van just to toss the trash and get me a cup of water. While he was gone, I tilted my wheelchair backwards a mere three inches causing my ventilator tubing to somehow get kinked and I wasn’t getting any air! I did not panic, and barely managed several unassisted, intermittent breaths through my nose and mouth for about four minutes, which feels like an eternity when you’re fighting hard to breathe. On his way back towards the van, James heard the shrilling ventilator alarm, raced to my aid, grabbed the ambu bag from the back seat and began manually pumping air into my lungs. He then located the kink in the tubing and I was breathing through the ventilator again! I have to believe that Josh - looking down from above - had a little something to do with my rescue. Maybe it was his spirit helping me to take those shallow breaths that sustained me until James returned. Apparently, Josh is still overachieving.

A small, baby blue envelope addressed to yours truly arrived in today’s mail. Now, I don’t always open my mail immediately; I figure that nothing is so important that cannot wait until later, unless it is a bill or pertains to anything medical. Since the envelope did not appear to contain anything official, I blew off opening it at that moment. About two hours had passed before I asked my nurse to open the little envelope. She removed a letter and unfolded it in front of me. Before even reading the letter, we both noticed that the words on the personal stationery were hand-written, apparently by the very individual whose name was embossed at the bottom of the page. This was the stunner of all stunners, and our jaws hit the floor! Does the name Carrie Underwood sound familiar to you? Yep, that Carrie Underwood, the former American Idol turned country music superstar herself! Yep, that Carrie Underwood, the Grammy Award winner and multi-platinum selling recording artist! Yep, that Carrie Underwood, America’s sweetheart who is adored by millions!

So, I bet you are wondering how little old me scored a personal letter from a big time celebrity. I bet you would love to know how I rate a note from Carrie freaking Underwood! Well, my pal Tom Junod, a writer for Esquire Magazine, interviewed Carrie recently and asked if she would drop me a line. Tom tried to get singer Faith Hill to call me on my birthday once to no avail. Fortunately, this time my man came through, as Carrie graciously obliged. She took the time from her hectic schedule to drop me a note. Wow! Now I bet you are dying to know precisely what a huge star like Carrie Underwood could possibly have said in this note. Well, here you go…

Scott,

- Carrie -

This was the ultimate thrill, a huge surprise, and something that really made me smile. Tom, thanks for being my friend. And thank you, Carrie Underwood, for reaching out to your new greatest fan!