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EVERYBODY POOPS

8/25/2016

23 Comments

 
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It's a well-known fact that everybody poops. You poop. I poop. The POTUS poops. The Pope poops. Queen Elizabeth II poops. Hillary and Donald poop. In fact, all celebrities, athletes, police officers, teachers…you name them…they all poop. However, it's a lesser-known, and little-shared, fact those with Duchenne Muscular Dystrophy poop. Look it up, or ask someone who's been there. Pooping and Duchenne is an adventure to say the least.
 
I am not trying to gross you out, or write about something that makes you uncomfortable. If this subject does, or causes you to shake your head in disapproval, then please stop reading. I am simply trying to share a little light on something those living with the monster understand all too well, and secretly wish others knew about their daily struggle. So, if you are open to reading about a natural, though challenging, part of life with Duchenne, please continue reading with an open mind and a sense of maturity.
 
When your son says “I gotta go number two,” or something similar, that is when Duchenne parents release a deep sigh, roll up their sleeves, and respond…
 
“Okay, let’s do this.”
 
We reply this way because, in reality, we have no choice, nor do our sons. We also say it because there’s no better way to address this subject than tackle it head on. We can’t wish it away. We can’t ignore it. We can’t help our son with half an effort. When he needs cleaned, he needs cleaned. There are no shortcuts involved. He needs our full attention, because when he has to go, he has to go, and he cannot do it without our help. Start to finish, it takes a while (sometimes up to an hour)…but, that’s just life with Duchenne.
 
Calls from nature involve teamwork, cooperation, and a lot of trust. We must work with our sons for success, mostly during the day though sometimes in the middle of the night. Our sons expect us to treat them with respect, dignity, and maturity. They don’t want us to make a big deal about it, as well we shouldn’t. Equally, we trust our sons to let us help them with a very private aspect of their life.
 
For us, it was a learning process that evolved consistent with Alex’s age. During the early years of our Duchenne journey, he used a toilet like anyone else. His weight was manageable and he climbed onto the toilet unassisted or with minimal help. Later, when he struggled to climb up or could not clean himself effectively because of weakening muscles and imbalance, we helped and life was good.
 
Things became interesting, however, when Alex starting using a wheelchair in the Third Grade. Because he could no longer walk, he could not exit his wheelchair and move to the throne. To help, we developed a piggyback transfer method, where I squatted in front of his chair, secured his arms over my shoulders, and then stood. After carrying him to the toilet, I turned around and carefully lowered him down. We used this transfer method everywhere…at home, friends’ homes, restaurants, hotels, and even school.
 
Although his school offered use of a smooth, wooden, transfer board to slide him from his chair to the toilet, Alex preferred the piggyback method. We were fortunate his elementary and middle schools allowed us to use spacious bathrooms in the teacher’s lounge or special needs classroom. Once parked in privacy, I would piggyback him from his wheelchair to a nearby bench or table, undress him, and then piggyback him from the table to the toilet. When he finished, we reversed the process. We had this method down to a science.
 
I helped Alex go to the bathroom nearly every lunchtime. While he did his business, we would chat about his school day, his friends, girls, or even do some last minute studying for an afternoon test. Looking back, we had some wonderful, father-son bonding conversations in the school bathroom just sitting, laughing, and talking. Fond memories, indeed.
 
As Alex grew older and his weight increased from immobility and steroid use, I could no longer safely transfer him by piggyback. For example, we laugh (thankfully) about a time at Pierce Point Cinemas, when Alex had to go number two during a movie. After my incredulous reaction of you’ve GOT to be kidding me…NOW?, we made our way into an accessible stall in the public restroom. Without a transfer table, we decided to piggyback and then remove his pants on the toilet (i.e., shift them back and forth until they come off). It was not ideal, as it led to slumping and uncomfortable repositioning. It was also not ideal that I piggyback a growing boy who, at the time, approached my body weight in size.
 
Not surprisingly, things did not go as planned.
 
After Alex backed his chair into the stall, I squatted to pull him onto my back. With his arms over my shoulders and his hands securely clasped in mine, I stood or at least tried to stand. Because of my failing ability, his increased weight, and gravity, I lost balance and we fell to the floor. With Alex's full weight on my back and my face on the clean checkered tile, we could clearly see beneath the stall door that nobody was around to help. We were alone, stuck, and unable to move. We laughed in hysterics.
 
I remember lying there thinking…Okay, it's up to us to figure this out (which, by the way, is a common theme with Duchenne).
 
As Alex hung on for dear life, we slowly inched our way back up and then eventually onto the toilet. Once in place, everything else went smoothly, normally, and naturally just as we planned. Although we missed most of the movie, THAT father-son moment will never be forgotten...by either of us.
 
When Alex developed back issues beginning in the Seventh Grade¸ we abandoned use of a toilet. His spinal compression fractures were painful and debilitating and he was bedridden for nearly five months.
 
When that first call from nature sounded, we didn’t know what to do. I couldn’t piggyback him to the toilet because of his pain or transport him via a Hoyer lift for the same reason. We had heard of fracture pans, but did not have one. I remember trying a baking pan instead, but that caused him severe discomfort. We considered towels, but were not sure of their capacity to contain everything. We settled on adult diapers and a quick run to the store while he patiently waited. Once secured, we then gently turned him on his side. With the help of some strategically placed pillows and towels, we were ready. The method worked wonders then, and still does today, five years later…and even the other night at 3AM.
 
Today, as a 17-year old high school Junior, if Alex has to go, I pick him up and take him home to conduct his business. I’ll then take him back to school if he is not too exhausted from sitting in his wheelchair or if it’s not too close to the end of the school day.
 
Though unpleasant, perhaps the biggest worry about number two and Duchenne is the dreaded indigestion. Nobody likes this. If our sons are sick or have an upset stomach, things get real interesting, real fast. In fact, our proficiency is tested and performed in fast-forward to make things work cleanly and efficiently. We just roll with the punches and work to keep things contained. It isn’t pretty. But, often life with Duchenne isn’t pretty.
 
I share all this because we have found that acceptance and creativity are essential with Duchenne, especially when our sons are older, heavier, and unable to move. Our sons learn to accept full exposure and we learn to treat it like it's no big deal. Because, it isn’t. It's life, and sometimes life with Duchenne needs a little exposure so others can understand the challenges involved.
 
The bottom line is that you may surprise yourself on how you address this natural act. Many use a hoist and transfer to the toilet. Some use a hoist and bucket, if the urge cannot wait. Any method takes time to undress your son, transfer and position him, and then let him do his business. It then takes more time to clean him, transfer him back to his bed, dress him, and then set him back up to whatever he was doing before he had to go. Like anything else, practice becomes routine with time, and soon you won’t even think twice about it. We have found that patience, maturity, and improvisation are the keys to a successful experience. A good supply of vinyl gloves and sturdy wet-wipes work wonders, too.
 
Whatever your method, just know that if it works…it works…and that’s all that matters. It doesn’t matter how you do it, just that you do it because it must be done. You may also discover, as we have, that it’s a trusting and bonding time with your son.
 
So, if you’re still reading this blog post, thank you. I sincerely didn’t intend to make you uncomfortable. Although some may consider the subject unpleasant or crossing the line of appropriateness, what can you do…
 
This IS life with Duchenne…
 
…and just one part of the daily grind.
 
Besides, everybody poops…remember?



23 Comments

RICKY

8/20/2016

2 Comments

 
The Duchenne community lost a dear friend this week in Ricky Tsang, and truthfully it’s an odd feeling. Ricky was one of those life constants you always expected to be there, though knew you would lose someday. His frequent and inspiring posts always brought a smile to my face because I could hear him. He expressed himself beautifully, honestly, and thoughtfully. He simultaneously made me nod and shake my head towards his daily struggle against Duchenne. At times, it seemed, I could feel his pain.
 
At the ripe age of 35, he was one of Duchenne’s senior citizens, and arguably one of the most vocal. Sometimes ornery but always caring, Ricky was honest, loving, and compassionate with a heart of gold. He was equally a romantic smooth talker and crotchety straight-shooter. He was quick-witted, strong-willed, and skilled with the written and spoken word. Sometimes sensitive to a fault, he put himself out there for all to see, hear, and read.
 
Our community’s love and admiration for Ricky was bountiful. Just read any of the hundreds of posts from his Facebook friends. They are ALL beautiful and reflective of his gentle soul. We loved Ricky and he loved us more. He cared passionately for everyone (especially women) and offered his counsel, wisdom, and perspective about life with Duchenne to anyone who asked. He was a trailblazer in the grips of constant pain. He was a torchbearer in the face of approaching darkness.
 
Still, I can’t seem to wrap my mind around his death. It's a strange feeling – here one day, gone the next. I still hear his voice. I still feel his determination to live. I still expect to read his daily advice on how to understand women, live with Duchenne, and never give up. I still expect to hear about a secret visit from Taylor Swift. I still expect to watch his videos about life, his wonderful family, and his heartfelt love letter to his future wife. Despite this odd feeling, I know Ricky will never fade from my memory. His voice will stay with me for years to come.
 
Ricky was special to so many because he spoke not only for himself...

...but FOR us.
 
The least we can do for Ricky is listen to his voice and never give up our fight against Duchenne.
 
He'd want it no other way.


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2 Comments

THIS TIME OF YEAR

8/11/2016

9 Comments

 
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This time of year is forever etched in my soul. For over thirty years now, the smell of freshly cut, dew-covered, August grass immediately takes me back in time to a place of unforgiving coaches, crushing hits, and hard, sun-baked grounds. This time of year I can still feel bruises and aching muscles, skinned knees and elbows, and pounding headaches. This time of year I can still hear coaches bark HARDER! FASTER! AGAIN! and even DAG GUMMIT, CLICK!! THAT WAS PATHETIC!! This time of year reminds me how to push myself through incredible pain and fatigue to do it all again the next day. It reminds me of the purpose and value of picking myself up when knocked down, hitting back harder than I did before, and pushing through my burning desire to stop. When I recall my fondness for those hot, humid, and seemingly endless August football practices, I can’t help but smile at the values they instilled, especially as we live today with Duchenne Muscular Dystrophy.
 
Life with Duchenne is no fun…for anyone, especially for our boys. But, it’s a challenge for caregivers as well. Although I would not change my role as Alex’s caregiver for anything in the world, I’m here to tell you that caring for a boy with Duchenne is no picnic. There are no Bon-Bon’s involved, a good night’s sleep is foreign concept, and you don’t go home at five. Caregiving for Duchenne is performed around the clock. It taxes you emotionally and physically more than you would ever imagine. With Duchenne, you serve the needs of a child who has the brains of an adult and the body of an old man. Day after day after day…night after night after night.
 
Don’t get me wrong. Caring for Alex is both a privilege and blessing. As many can attest, he is an incredible young man with a heart of gold and a contagious smile.
 
But,…
 
It’s the constancy of Duchenne that wears on you. This disease is with you, your son, and your family all day and night, stubborn to leave and at times laughing at your fumbling inability to manage it. Sure, Duchenne may head to the sidelines now and then as life distracts you. You are certain to experience good times when Duchenne seems a distant thought among your family’s treasured moments like vacations, celebrations, or simply enjoying a meal together. But, rest assured, Duchenne is there. Having weaved itself into the fabric of your lifestyle, Duchenne never leaves. Be it lifting, turning, feeding, dressing, grooming, massaging, washing, wiping, giving, fetching, stretching, searching, positioning, explaining, defending, fighting, hoisting, helping,…you name it, Duchenne never lets up. All the while, the bully camps, spreads, and plots its next real estate grab on your son. It’s frustrating on many levels.
 
Alex gets this, as do many boys and men with Duchenne I’ve come to know. They see Duchenne’s toll upon their caregivers. They see the tired eyes, fatigued bodies, and dragging feet. They hear the occasional edgy voices, heavy sighs, and veiled frustrations. They get it, and wish hard they could do something more to help. However, they often have no choice but to ask. At times, the exchanges can be like pleasant negotiations where both sides willingly and happily meet in the middle. Other times, the conversations collide like two bulls in a china shop where tempers are short and messy and the needs are many and compounding. That’s just the way it is with a disease that never stops and nor cares of the havoc it creates. You just learn to live with it.
 
With Duchenne, it’s important to understand that as your son’s condition worsens, YOU the caregiver must strengthen mentally and physically. As your son matures, you must find ways to manage his increasing weight and immobility as well as his declining abilities to function and simply breathe. He needs you, and you know it.
 
It's an evolving awareness. In the early years, you become his legs and carry him often. You boost his confidence as he notices himself falling behind. You show him emotional and social strengths as he transitions to a power wheelchair in stark contrast to his peers. You learn competence with Hoyer lifts and joysticks, as well as ramps and unwieldy accessible vans. You adapt to ignorant and oblivious crowds, inaccessible sidewalks and storefronts, and friends’ inaccessible homes. You shrug off spilled drinks, wet beds, and stained clothes. You comfort him as the number of his visiting friends declines. You display strength, patience, and compassion when he looks to you for answers to life’s hard and difficult questions. You guide him through life’s changes and harsh realities as his Duchenne advances. In the latter stages, you learn the vital importance of cleaning his trachea, suctioning mucus from his lungs, and maintaining his medical equipment. Through it all, you become his confidant, cheerleader, and reliable go-to. You become his dependable ally, strongest fighter, and ultimate role model on how to live. He looks up to you and you cannot let him down.
 
You learn to do all this because Duchenne never stops. It’s relentless, and so you must be, too. You do it else get bulled over by the unforgiving monster. Duchenne ONLY becomes easier if you keep on grinding and tackle it one day at a time. And then do it again and again and again.
 
So, for me, I say thank you to my coaches Piper, Thome, and Bickel. Thank you coaches Focht, Tatman, and Beverage, and many others who have molded me through the years. I can still hear your loud, unimpressed, though encouraging, voices pushing me onward to do and be my best. I can only hope those hot, humid, and endless August practices have rooted somewhere deep within me.
 
I used to think this time of year was all about football. I used to think it was all about the game. But now, when I smell that fresh-cut grass, I know.
 
It’s about life and how we live it.
 
This time of year is my reminder to ALWAYS help my son…
 
…laugh,
 
…love, and
 
…live the life he’s dreamed!
 
Bring it, Duchenne.


9 Comments

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