tag:blogger.com,1999:blog-63562240157377133152023-11-16T10:31:36.682-06:00Adventures in Losing StabilityFinding the humor and blessings hidden beneath the frustration of living with ALSddhttp://www.blogger.com/profile/11472904338692304520noreply@blogger.comBlogger42125tag:blogger.com,1999:blog-6356224015737713315.post-32688483321871641142013-10-05T16:54:00.000-05:002013-10-05T16:54:04.513-05:00Crosstown Classic 2013 - Run Because You Can<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjT9MhRPQCNdBnE69k8Ui7fbxsylJIooGKbE6NdOMFQLcW-iQ-DQbBwRYw3dqQxRI2WW2StBu8bRup-mDgP6FvN3Cr49IrZwNs3p9J27IL4BQkP0uUIHh3TgGbirvhp2P8YmklX1UAAUGQ6/s1600/DSC06783.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjT9MhRPQCNdBnE69k8Ui7fbxsylJIooGKbE6NdOMFQLcW-iQ-DQbBwRYw3dqQxRI2WW2StBu8bRup-mDgP6FvN3Cr49IrZwNs3p9J27IL4BQkP0uUIHh3TgGbirvhp2P8YmklX1UAAUGQ6/s200/DSC06783.jpg" /></a></div>
First of all I won't pretend to be Denise. Her writing is so beautiful and eloquent. My writing, well, is not but I will try to do justice to all of her wonderful blogs.<br />
<br />
On Tuesday September 24, 2013 I had a front row seat to something that could only be termed as a blessing from God but in the form of about 500 Kindergarten through Fifth Graders<br />
running in th 5th Annual Crosstown Classic. This year's theme was Run Because You Can. A theme that played out beautifully on this perfect September day.<br />
<br />
This event is incredibly hosted by Mill Street School and open to all elementary schools in Naperville School District 203. The race consists of 3 races (400, 800 and Mile) in which kids can do any or all of the races. As you might guess, the energy and excitement at this event are unmatched. Imagine, if you will, 75 to 100 kids at one time toeing the start line and doing their best impression of Chariots of Fire,minus the beach, as the gun goes off. Just awesome!<br />
<br />
Chuck Hoff,a phenomenal runner in his own right, is the Art Teacher at Mill. He and his crack staff which is made up of Mill Street staff, other elementary physical education teachers, and parents make this race go. I cannot imagine the amount of time that is put in to such a big event. I was a little late to the party as my school, Meadow Glens, just started attending the Crosstown last year. What I have seen in 2 years just gives me chills. The cheering, the high fives, the many pictures taken and the comraderie of all the schools to each other takes my breath away. This was just the tip of the iceberg as I found out a week or so before the event.<br />
<br />
I was informed that this year's event was doing something a bit different. As I say these words, I can feel myself becoming emotional. I will turn in my "man card" if I have one left after this is posted on Denise's Blog.<br />
<br />
Each year T-Shirts are designed and sold for the Classic. The money raised is used to support next year's event. Not this year. Chuck and others decided that the money should be donated to the Les Turner ALS Foundarion on behalf of Denise and I. Chuck said how we inspire him and others with the marathons we do together to bring about awareness for ALS. Denise and I just try to make the best of our situation. I don't look at it as inspiring anyone but I guess others see it that way. I feel like the inspirations were all those kids running races "because they can".<br />
<br />
As if the T-Shirt donation wasn't enough. It didn't stop there. Rene Grady, a Mill Street parent, took it a step further. She contacted Jamba Juice to come to the event and sell their smoothies. For every drink sold, they donated a dollar to the Les Turner Foundation. She also contacted Les Turner to set up a donation booth. Someone contacted NCTV a NapervilleTelevision station who covered the event and even interviewed me. Through all of these gestures, the Crosstown Classic raised about $1300 for the Les Turner ALS Foundation in our name.<br />
<br />
Although I will never be able to thank all the people that had anything to do with the Crosstown Classic, I just want to say how blessed Denise and I were from the event. I don't know what we would do without all the support we get from friends and perfect strangers. God does work in mysterious ways and in this case used a whole school community to remind Denise and I that we are not alone and have so much to be thankful for. See you at next year's Crosstown Classic!!<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />Mr.Bhttp://www.blogger.com/profile/01900240561988197618noreply@blogger.com1tag:blogger.com,1999:blog-6356224015737713315.post-48774180747033980542013-09-09T08:55:00.000-05:002013-10-05T16:01:14.210-05:00Church On The Porch... REV. DOUG BROWN <br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDVTkYdH3eGRpEBQLjaV0yj6HXa3gKAGdHczD7ojyiYD6C0pZmU12z68pEWW7RcbFFYKZ9LJVGu3bVuibtPDFYJjIdfqljKc1gIWfUG-lT2MHXxXdEm7T1j6VwbGCF049eGbyGCwiYeLWn/s1600/482895_4507805105948_931315929_n.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDVTkYdH3eGRpEBQLjaV0yj6HXa3gKAGdHczD7ojyiYD6C0pZmU12z68pEWW7RcbFFYKZ9LJVGu3bVuibtPDFYJjIdfqljKc1gIWfUG-lT2MHXxXdEm7T1j6VwbGCF049eGbyGCwiYeLWn/s200/482895_4507805105948_931315929_n.jpg" /></a></div><br />
<br />
On July 21st, I gave testimony to my faith, at a budding house church in Asbury Park, New Jersey. It wasn't in my usual upbeat style of writing, it was much more raw, rough, and unpolished. In retrospect, it seemed to fit the neighborhood in which my dear friend had planted himself, to start his work, serving the under resourced. He holds a weekly service, on the porch of his home, and prepares a meal to feed them, both literally and figuratively.<br />
<br />
<br />
<br />
It was not my intention to write about my life in this manner, but it was how the words spilled out of me, as I faced the screen. I was feeling weary, broken, and tired from the miles we logged this summer, my body ached, as I returned to seclusion repeatedly that week to write, while visiting with my family. <br />
<br />
When Sunday evening arrived, we got a break from the oppressive heat and humidity that kept me indoors most of my visit. Still, rain threatened our outdoor gathering, and the decision was made to error on the side of caution, and move it indoors. It was no small task getting me up the stairs to the porch, and into the house. It was an older home, and the uneven, weather worn, gray wooden stairs, were too steep to traverse with a ramp, although I tried. My husband Chris, heroically carried me up the steps, onto the porch, and into the house. <br />
<br />
I sat in a dark, wooden framed, arm chair, with burnt orange fabric, void of cushioning in it's current state, a lot like me, older and worn, but it did not lack character. Without my power chair, or table stand, we improvised and used a stack of bibles to prop up my Dynovox. Proving once again, where there is a will there is a way!<br />
<br />
The gathering was small and eclectic, and the room was warm with acceptance. Rev. Doug opened the service in his colorful way, and there was a lovely young woman who sang while playing the guitar. Although we never spoke specifically about the content of my message prior to the service, the song and video clip played before my delivery, seemed divinely orchestrated. <br />
<br />
Then it was my turn, arms propped up to help me sit as straight as possible, moving my head to activate the Dynavox to begin speaking and scrolling, with each movement trying to conceal the physical pain, in my neck and shoulders, my story poured out in a computerized voice, almost, as if I could separate myself from it. This was the text that followed... <br />
<br />
<blockquote>Good Evening Everyone, <br />
<br />
I'm happy to be home in NJ, with all of you tonight. Each time I visit, I regret having moved from this place, that holds such meaning...<br />
<br />
First, I need to tell you, that I'm not a pastor, I'm not a theologian, and I did not attend seminary school, but I do have a story to tell, and I want to thank, Rev. Doug for inviting me to share my faith, with you this evening. <br />
<br />
I would also like to start with a prayer, if you would allow me. My prayer for you, is that no matter where you are on your own faith journey, God would use me to speak into your heart. That He would give me the words to reach you, and stir something inside of you. I ask this in the name of His son Jesus, Amen. <br />
<br />
We moved to NJ in the spring of '71, I was 8 years old, the same age, I realized, that my mom was different from the other moms. I have a vivid image in my mind, of my mom hanging onto my dad's arm, as they walked toward me, sitting on a bench, outside of our NY city apartment building. It was my birthday, and I was playing with my shiny new red transistor radio, our version, of an ipod, in my childhood. I remember the next nine years being difficult for me and my siblings, never considering at the time, how hard it was for my parents, juggling 4 children, ranging in age from 6 to 13, while my mom was battling Multiple Sclerosis. <br />
<br />
Sitting here, with you now, at age 50, fighting my own battle with amyotrophic lateral sclerosis, commonly known as Lou Gehrig's disease, I still have trouble wrapping my head around that period of my life. I remember clearly, stealing time away from my family, to be alone with God, and pray for peace, within the chaos, of my daily life, asking God to help me get through it, and He did just that. <br />
<br />
My mom gave up after years of suffering and frustration, and passed in '79, just prior to my 17th birthay. Regrettably, I was not at her bedside, being a typical teenager, raised on the Jersey shore, I spent that particular day on the beach. When I returned home to find out she was gone, I did not shed a tear, I remember a sense of numbness and relief. What I expected was the worst part of my life was over, what I later realized, was my childhood was over too. <br />
<br />
I finished high school the following year, and wanting to distance myself from the years of painful memories, I moved out from under my father's restrictive hand, and began my young adult life. I first landed on Atlantic Avenue in Long Branch, sharing an apartment in a house with three other friends. Although I made one bad choice after another, God kept me safe, as I moved up, and down the coastline, enjoying the freedom of my twenties. <br />
<br />
At 26 years old, I was brought to my knees, when suddenly, my younger brother died of what the coroner characterized, as natural causes. Seriously, natural causes, at 23 years old? How is that possible? Just, two weeks earlier, I walked in circles around the park, in an early March snow storm, praying for God to help him through his struggles. Was this, the answer to my prayers? I was angry with God, and I let him know it! Michael was hurting, and I wanted God to help him, not to take him. <br />
<br />
The months following were more painful than grieving the loss of my mom, and there were many days, I could not contain my tears, as the world continued moving around me despite Michael's absence. It just didn't make sense, but God had already set up a community of people who surrounded me, and supported me, through the process of healing. <br />
<br />
More than three years passed, things were beginning to normalize, my career was taking off, and I was starting to travel for work, when I got the call, and rushed home because my dad had a stroke. He passed away in the weeks shortly after. At 29 years old, three of the six members of my immediate family were gone, and yet, I still hung onto my faith, but what did that faith resemble? <br />
<br />
That's hard to answer, I did not attend church, and it seemed the only times I stepped into one, was for a wedding or funeral. I believed in God, but, rebuked organized religion. I prayed, mostly for help and protection, and through the years I could always feel His presence. <br />
<br />
Throughout my thirties my career continued to grow, and I spent a lot of my time travelling alone. I remember being filled with fear initially, until I realized I wasn't really alone at all. I prayed for God to be with me, and keep me safe, as I travelled to a new city each week, rented a car, got a local map, and found my way. It no longer felt scary, it was an awesome adventure, that took me on a wonderful tour, of the United States, I was grateful for the opportunity, and I always felt protected. <br />
<br />
Jump forward to my 40's, and I was living in the suburbs of Chicago, going through a hostile divorce, with responsibility for a 15 month old baby girl from China. This child was about to teach me about God's love, like nothing else ever reached me before. Until I experienced the love I had for this tiny human, I could not begin to understand, the love our heavenly father has for us. <br />
<br />
I had hit rock bottom, when a few short months after returning home from China, with our newly adopted daughter, my husband asked for a divorce. Turned out that we didn't have the same ideas about what family life would look like. Like clockwork God sent help in an instant! My family flew out from NJ, and stayed with me until I got my bearings. My boss, Rich granted me immeasurable grace, as I adjusted to being a single mom, and his wife, Helen, whom I had never met before, often sat with me to offer any help or guidance I needed. People came out of the woodwork to offer support and empathy. <br />
<br />
More than one person suggested that I attend a divorce recovery program, at a church I had heard of but never explored. Having grown up Catholic, and still recovering from that experience, I was willing to try. So, with all the courage I could muster, I bravely ventured out to see what God had prepared for me, and once again found His safety net was waiting. <br />
<br />
Willow Creek Community Church became my home, and the loving God I had always believed in, was there, waiting for me to finally find my way. That was in 2004, and now nine years later, I am still grateful to be growing in my faith, despite my circumstances. You see, this church was the place where I found help, and where I really began to learn about God. I took classes, read books, attended services, and eventually even attended leadership conferences, that reshaped my life, and my approach toward work. <br />
<br />
I can admit today, that I was a type A, human doing, moving at a fast pace, consistently in motion, with high expectations of myself and everyone around me, leaving a wake in my path. If not for the transforming experience of my church, there is no way I could have accepted my diagnosis in 2010. <br />
<br />
There are some who want to question why a loving God would allow them to struggle, but God never promised us, we wouldn't have troubles. We all have our challenges, mine are physical, yours may be different, but no less valid. He wants us to bring him our burdens, He wants us to lean on him in difficult times, He wants to hold us close like a parent holds a weeping child. Yet so many of us want to be in control! We think we know best, but the truth is until we surrender to His will for us, we will really never know peace!<br />
<br />
I think about those advertisements for cars, that can go zero to 60 miles per hour in 7 seconds, and that was me, always going faster than I really needed, but this disease brought me to a screeching halt, and I had to give up control to ultimately find my purpose. <br />
<br />
Now, my husband and I, race for a different reason, to help raise awareness, and funding for research and patient care for those suffering from Lou Gehrig's disease. We are part of a support group, and we have tried to reach out and help other families struggling with this disease. I write a blog about my experience living with ALS and the many blessings that have come along with it. <br />
<br />
Ultimately, I have a positive outlook on life. Some people choose to look at their glass as half full, and others choose to see it as half empty; I choose to see mine as overflowing, because I know that I am not in control, and I trust God to get me through this. I pray that whatever your challenges are today, you will be able to give them to God and rest peacefully in His care, knowing that He is waiting to help you. </blockquote><br />
The room was drenched in deep silence when I concluded that evening, I don't know what I was expecting; I hadn't thought that far. I only finished writing it minutes before we left for the service. Rev.Doug said silence is good, but for me, in that moment, it was difficult to know what the silence truly meant. <br />
<br />
Looking back now, my testimony was incomplete; it was the Reader's Digest version of my story, and focused more on the lows, rather than the joy filled life I enjoyed. I was blessed to find love in Chris, one year before my symptoms started, and marry him six months before my diagnosis. A man who has honored his commitment in sickness and in health. I also neglected to mention that after 14 years of living across the street, I finally met my neighbor Laura, my caregiver, when through a series of phone calls, she came to lift me from the floor of my laundry room in early 2011, again my safety net in place before I knew I needed one. <br />
<br />
So, my story continues to unfold with an endless cast of characters, sometimes passing through, and often playing a major role in strengthening my faith, that someone far greater than me is in control, when I remember to relinquish my will and trust in His... <br />
<br />
It's a bit like church on the porch, stepping out of your comfort zone, planting yourself among those that need help, and seeing what God has planned for you... Thank God for people like Rev. Doug Brown for his example of courage and faith! <br />
ddddhttp://www.blogger.com/profile/11472904338692304520noreply@blogger.com4tag:blogger.com,1999:blog-6356224015737713315.post-21127151195366072622013-06-23T10:30:00.000-05:002013-06-23T10:30:50.210-05:00Things I miss... <div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYcRcGwiqJEKnfbgGpy6tMYX_-F1sZEXwLji99MzaDc0na_owcLgLPRcfIP4oCsto2CAOEYHWDbOPAVOfVaIwg2qiGvjCyP8PGCOuU4M2MlqaHxw8RqbPImub6Y9AzNYzckDWuZR3p8fHo/s1600/File0006.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYcRcGwiqJEKnfbgGpy6tMYX_-F1sZEXwLji99MzaDc0na_owcLgLPRcfIP4oCsto2CAOEYHWDbOPAVOfVaIwg2qiGvjCyP8PGCOuU4M2MlqaHxw8RqbPImub6Y9AzNYzckDWuZR3p8fHo/s200/File0006.jpg" /></a></div>Disclaimer: the following litany of activities is in no order of priority, they are, as they fall haphazardly into my mind and onto the screen before me. It is, in fact, incomplete, as I'm certain that once posted, I'm apt to recall something I have neglected to include. It also excludes those things that are private, and should remain so... <br />
<br />
I would also like to point out that I do not intend to present this as a list of complaints, it is simply one individuals perspective of living with restrictions, in the spirit of Julie Andrews, let's try to think of it as a list of some of My Favorite Things. <br />
<br />
Hugging, don't underestimate the power of human touch. <br />
I come from an Italian family, and we're huggers; we hug our friends, their friends, relatives, co-workers, acquaintances, and pretty much anyone who evokes the natural urge in us. <br />
<br />
While I still receive hugs, my arms are not strong enough to wrap around anyone and hug back, so while I still enjoy them, I feel like something is missing. I've also noticed, the hugs I receive are much more gentle. I know I'm not looking very strong, but I assure you, I won't break from a more robust hug if you are so inclined. My daughter is proof of that as she often embraces me with the approach of a wrestler attacking his opponent, and I have managed to survive. <br />
<br />
Driving, after more than a decade of commuting in bumper to bumper traffic to get to work, I can hardly believe I'm saying this but I miss driving. There is just something about the freedom that I felt when I was driving alone on a sunny day, with the sunroof open blasting my favorite music. Yes, of course I was singing along, and there were times, my hands may have left the steering wheel as I made a joyful noise... <br />
<br />
Shopping, I know what you're thinking, what woman doesn't like to shop and well... I can still shop online or go to the store in my power wheelchair. It's just not the same. Shopping was therapeutic, relaxing, and though I avoided malls, I enjoyed taking a leisurely stroll through Target on Sunday with my husband, Chris. Although, he insisted on having a list, and imposed a maximum number of impulse purchases, sometimes putting a damper on the excursion. It was all in good fun, as I rarely got reigned in for exceeding the limit. <br />
<br />
Movies, yes I can still go to the movies, but the experience is not quite the same... Handicapped seating is safely located at floor level, you know this area as the place you have to sit if you arrive late to a popular movie on Saturday night. It can be hard on the neck, unless of course you have a Permobile C-300 with tilt controls! While I can see the logic, I really miss the view I might otherwise enjoy in the upper rows of stadium seating! Refreshment options are also limited, as I want to be considerate of my fellow patrons, and spare them the delight of spontaneous aspiration on a rogue kernel of popcorn. Luckily, the popcorn at our local theater smells better than it actually tastes. <br />
<br />
Rollerblading, one of my greatest passions! There were times when I thought my feet could literally leave the pavement as I experienced the joy of skating! I could circle the neighborhood repeatedly in the early hours of a summer day listening to Casting Crowns, Chris Tomlin, Third Day and a variety of other christian rock groups. I can clearly remember raising my arms in sheer joy and gratitude for the pleasure it gave me, acknowledging it as a gift. Who knows what the neighbors thought, as the crazy middle aged woman raced by, while they sipped their morning coffee from their decks overlooking the lake... I am still grateful that I have those memories to meditate on as I sit here.<br />
<br />
Singing, I enjoyed singing from an early age and later with my daughter, Maddie. We would have show tunes pouring from the iPod dock most mornings, and sing and dance as we got moving, a trick I learned that often helped get a sleepy toddler up and ready to embrace the day! We still enjoy music together but I'm leaving the singing to Maddie, and it still brings me joy knowing it's a passion we share. <br />
<br />
Cycling, I logged many miles along the Prairie Path and the Great Western Trail over the past decade and a half, and I really miss that too. The smell of the woods always reminded me of camping with my dad and siblings, I could hardly get enough of it as I breathed in deeply, filling my lungs to push my legs as fast as they could go. Racing past the trees, ducking from the lower branches, and drinking in the colors of the prairie grass and goldenrod against the deep blue sky. I was experiencing heaven on earth. <br />
<br />
Cross country skiing with my husband Chris, a sport we took up together the winter after we met. Chris had been teaching it for years at school with the kids, but really wasn't doing it for fun outside of school. First, we started out in the open spaces behind our home with the girls; it was a fun family activity, and then we branched out to actually buying gear, and finding trails to explore. It was peaceful in the woods, gliding along together, enjoying the wildlife as we spotted deer, bunnies, and field mice... Actually, I recall several dead field mice along the prairie path, still scratching my head over that...? <br />
<br />
My favorite memory of this was our trip to Hickory Hideaway for Valentine's Day weekend! Chris rented a log cabin and we ski'd at Lake Carol Country Club! It was pretty hilly out that way, and we had a few scary moments as it challenged us a bit beyond our skill level, but I enjoyed every bit of it! <br />
<br />
Physical activities with my husband and our girls, I miss skating and cross country skiing with them, riding the waves in the ocean, playing in the pool and snow tubing, the list goes on... While I have never been much of a spectator, I can still enjoy watching them! My favorite is watching all three of them compete in Dance Party on the Wii. I'm certain Chris will deny it, but I have video proof! <br />
<br />
Work, I loved my job, and the people I had the pleasure of working with! I had the opportunity to challenge myself, and my team to continually look for ways to improve the process. I had the best team of people; they often taught me more than I taught them. I'm grateful that I had the kind of job that I was excited to be at every day! <br />
<br />
Dressing up, at the risk of sounding vain, I must admit I miss the dresses, the heels, the feeling of being comfortable in my own skin! We attended a very special wedding this weekend, and while I got to wear a dress, pretty patent leather flats, and some jewelry, my body just barely held the dress up. I just don't look like myself anymore... Yes, it's vanity, but its also a feeling of confidence. I was completely stressed, out worrying about how I looked, whether I could keep it together through the ceremony, and not become a spectacle as I often cry at weddings. I didn't want to be the woman sobbing in her wheelchair disrupting the ceremony. <br />
<br />
It was also awkward to have my speech device attached to my chair outside of my home to attend this kind of event, but I needed it to communicate. Turns out everything went smoothly, Chris took super good care of me, everyone made me feel comfortable; I even enjoyed a few sips of wine, totally relaxing me, and had a wonderful time! <br />
<br />
So to sum it up, life is different but it's still good, and I'm thankful for the memories, they are vivid in my mind and this disease cannot take them from me... ddhttp://www.blogger.com/profile/11472904338692304520noreply@blogger.com3tag:blogger.com,1999:blog-6356224015737713315.post-22321596146925728402013-06-14T11:53:00.000-05:002013-06-14T11:53:26.836-05:00Impact... Community In Action <div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUzPnJQ4LO13ce7JxKNYy4nQpW27aSWpBFCQcGa9e9r_w2X-YtZKsZlJ_Y2KGVmNH95JeJNeMdiFIGPPKeXWvUJOjifeHFunSvilcAKJma5IXOOas-CUlvgxhGM-hlpY-SDTeRCh_Ajo21/s1600/-b78b419efe6339b0.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUzPnJQ4LO13ce7JxKNYy4nQpW27aSWpBFCQcGa9e9r_w2X-YtZKsZlJ_Y2KGVmNH95JeJNeMdiFIGPPKeXWvUJOjifeHFunSvilcAKJma5IXOOas-CUlvgxhGM-hlpY-SDTeRCh_Ajo21/s200/-b78b419efe6339b0.JPG" /></a></div>They say that victims of earthquakes experience them in slow motion; as the walls come crashing down around them in minutes, time seems to stand still. Sitting with my husband, in the doctor's office, after months of searching for answers, I had a similar experience when the neurologist delivered my diagnosis of amyotrophic lateral sclerosis (ALS), commonly known as Lou Gehrig's disease. The words hung in the air, as if I had the option to dismiss them, or accept them. I remained calm, almost frozen, as I noticed the tears begin to stream down my husband's face. “Two to five years,” the doctor said, “That's the prognosis for this disease. There's no cure, no effective treatment for what you have, I'm sorry.” <br />
<br />
I had heard of Lou Gehrig's disease, but frankly, I knew nothing about it. I was always concerned about Multiple Sclerosis, as it runs in my family, so when my symptoms began to progress, I was almost certain MS would be the conclusive diagnosis. I was prepared for that, not for ALS, not for something worse, not for something fatal. In the days to follow, I remember thinking, why isn't there a cure or at the very least an effective treatment? <br />
<br />
Unfortunately, like an earthquake, when we hear about ALS, it only lasts a news cycle and then we lose focus, but the devastation remains. <br />
<br />
And then come the aftershocks, as you tell your family and close friends, your boss, co-workers, and eventually the person who cleans your home, cuts your hair, and paints your nails, because you can no longer hide the fact that you're sick. <br />
<br />
Each time it becomes more real, more terrifying, and more overwhelming, until you decide to accept it and live your life despite it! Today I am living with – not dying with – ALS. <br />
<br />
I don't say this flippantly, like someone in denial and I didn't get here easily, but I did get to a place of hope and optimism because of the people that surround me. <br />
<br />
In my twenties, I read a book about family systems; the author used a mobile to illustrate how an event in the life of just one member of the family, will impact every other member of that family system. Try it, watch a mobile moving effortlessly in synchronized harmony, now touch just one of those dangling pieces; and the next thing you see is utter chaos, each piece flying through the air in a different direction. You see, the expectation is that there is always a negative impact; that has not been my experience; that is not my story. <br />
<br />
As I sit here in my power wheelchair, feeling the warmth of the afternoon sunlight on my face, I am reminded that spring is coming. Each year, when I think that I just can't take another day of winter's biting cold, spring pops and a daffodil breaks the earth's crust and pushes through. This is one of my favorite things. It's the way I've come to think about living with my disease... Just when I think I can't endure another day, something happens to remind me there are good days still ahead. <br />
<br />
Days when I get to share lunch with friends, see musicals at the theater, receive a note of encouragement from a dear friend I haven't seen in 20 years, and recently, I was able to see my beautiful, ten year old daughter sing "You Make My Dreams Come True" on stage, while she literally was making my dreams for her come true. Her joy was my joy! <br />
<br />
Since early 2010, I have experienced what it's like to move from an active working mom who exercised daily, enjoyed rollerblading, cycling, cross country skiing and running with her husband and children, to a mom that has learned to use assistive technology in order to help her daughter do her 4th grade math homework because I could no longer speak. That said, if not for my illness, I would not have been home after school with her to spend those precious moments. <br />
<br />
What I have learned in the past few years as my body gradually deteriorated is that being sick is not for those weak in spirit. It takes determination, strong faith, and the ability to see the blessings that come along with the pain, to get through it one day, one hour, and sometimes one minute at a time. <br />
<br />
Most importantly, I've seen how my illness has impacted those around me. Over the last three years, I have seen co-workers, friends, and neighbors become my hands and feet when mine would no longer serve me. They provided child care, transportation, and meals when we needed them. They packed up our things, and unpacked them again, to move us into a new home when I could no longer climb the stairs of our family’s home. They participated in walkathons, and ran alongside us, as my husband pushed me in a specially designed jogger, to honor a commitment he made to run my first marathon. A special group of neighbors even went door to door to tell our story, and raise awareness and funding for research and patient care.<br />
<br />
Just when we thought we had seen blessing after blessing, two former students of my husband's, now in junior high school, organized an annual dodgeball tournament. Recruiting support from local businesses, parents, fellow students, and teachers to help, these young ladies engaged the entire community in our efforts to fight! <br />
<br />
They've organized the dodgeball tournament for two years now, and each time I roll into the high school field house, I am overwhelmed by the number of people who participate and attend. There were teams of teachers, parents, high school students, and junior high students, each team dressed to show their unique spirit, each more amusing than the next! Bubble wrapped teachers, moms in tiaras, and students in their brightly colored t-shirts and wild socks, they made me smile and laugh. <br />
<br />
Many of them greeted me, or stopped by to ask how I was doing, and reminded me that they keep us in their prayers. One adorable group of tiny elementary school girls, who attend the school my husband works in, walked by the bleachers back and forth, selling wristbands, and stopped by to ask about my new puppy, Sally. Apparently, word got out about my furry Valentine's Day gift! I did not have my Dynavox (communication device) yet, so it was difficult to respond, but I smiled and nodded my head to acknowledge them, and mouthed the words, thank you. <br />
<br />
I also had the pleasure of meeting the lovely young ladies who inspired us with their vision for the event, along with their parents, grandparents, and siblings.<br />
<br />
One family who participated had recently lost their high school aged son, Michael to brain cancer. Yet mom was at the front table welcoming people as they entered the event, collecting admission, and dad led a team, "The Heavy Hitters". Both greeted me individually, and although there was little spoken dialogue, I sensed a connection of deep understanding in their eyes, a moment of mutual compassion, that won't be erased from my heart. My husband had been one of Michael's teachers, and even in their time of grief, they were present to support us, nothing short of amazing. <br />
<br />
This was impact we never saw coming! This was community at it's best, and I am humbled, and filled with gratitude, because no matter how bad it seems, I know we are not alone.<br />
<br />
ddddhttp://www.blogger.com/profile/11472904338692304520noreply@blogger.com0tag:blogger.com,1999:blog-6356224015737713315.post-49424374941915016862013-05-20T19:03:00.000-05:002013-05-20T19:03:23.442-05:00Puppies In Heaven...<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfaKfS9lOdV8o3OVMcfB8Zc9gkTd02HTw0qTu6U6o0UDL_tizaHqaAlv-E8a8FqZHzRrdceNydgCLvsdi5paak6I8FZDxUvqodO_ZBfB29ci4n2nf-_SeKToTynTx16ho8JLjeFu6P9ks8/s1600/sally.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfaKfS9lOdV8o3OVMcfB8Zc9gkTd02HTw0qTu6U6o0UDL_tizaHqaAlv-E8a8FqZHzRrdceNydgCLvsdi5paak6I8FZDxUvqodO_ZBfB29ci4n2nf-_SeKToTynTx16ho8JLjeFu6P9ks8/s200/sally.JPG" width="200" /></a></div>
<br />
<br />
<br />
Sometimes it seems like a three ring circus around here, but I wouldn't trade it for anything! If you've been reading my blog, then you already know about Blue, our 50 pound Border Collie mix, who thinks he's a lap dog. Given the chance, Blue would gladly sit on my lap, if he could just figure out how to get up here without hurting either of us. Luckily, he has not found a way.<br />
<br />
Then there's Crabby, our cat. She has earned her name with her "Don't call us, we'll call you!" attitude. Don't misunderstand, she wants attention, it's just going to be on her terms, and not yours. You cannot pick her up, you cannot brush her, or move her, unless she approves. Weighing in at about ten pounds, I am often amazed at the effort it takes to get her to budge.<br />
<br />
She is a beautiful long haired, grey and white kitty, with bright, hazel green eyes. Unfortunately, if she won't let you brush her coat, it becomes matted, and since that was my job, well... you get the picture. Recently, we had her groomed into a lion cut. It's exactly what you would imagine, she was shaved with the exception of her head in the shape of a lion's mane, and what appears to be a duster at the tip of her tail, simply hilarious! I'd imagine she's feeling a bit naked, having lost much of her body mass in the process!<br />
<br />
She has taken to new behaviors as a result of the whole traumatic event: sleeping on the heating vents, my right shoulder during naps or overnight, and walking the length of the edge of the whirlpool tub, as if it were a balance beam, to jump on my lap during my therapies in the morning. Not that I mind so much, but she's disconnected my feeding tube a couple of times now, and that's a big mess!<br />
<br />
Overall, I'd have to say, she has been a lot more cuddly. She was living in the basement for about six months after we moved, and she has finally moved up to the main floor to live with the rest of the family. I still don't think that she's forgiven us, but it's nice to see her back.<br />
<br />
Then after years of pleading, my wish came true on Valentine's Day, and my dear husband placed a ball of fur on my lap, later known as Sally or officially, Mustang Sally Brown, on her pedigree papers. She is the cutest thing on four feet! Golden and white, the most adorable menace you've ever met. Living up to her breeding, she's a little Shih... Tzu much of the time!<br />
<br />
Nothing is safe anymore, Sally drags around whatever she can get to: slippers, shoes, towels, and unmentionables of all kinds. She loves to play in the backyard, hops through the grass like a bunny, and enjoys trudging through the flower beds to find a stick to chew on in the mulch. Sally doesn't subscribe to the idea of being a little lady, and returns looking like a scruffy mutt, enveloped in dirt! The only thing to do at that point, is to drop her into the laundry room tub. My husband seems to enjoy it and so does she, especially the blow dry to follow.<br />
<br />
Blue and Sally are great together, rolling around on the floor, chasing each other, sharing their toys in a tug of war, and terrorizing the cat; they were fast friends. They have brought me so much joy and endless amusement, the very best medicine.<br />
<br />
I feel a strong connection to our pets; I'm certain Blue knew I was sick well before we did. He is on the job 24 hours a day, even when I make the slightest noise in the still of the night, he is up on the bed investigating. There was even a time, I recall him waking my husband, in the middle of the night when I attempted to get up on my own, as if to say "Hold on, you're not going anywhere alone.", my protector.<br />
<br />
Pets are God's little bundles of healing energy, and I sure hope there are puppies in heaven...ddhttp://www.blogger.com/profile/11472904338692304520noreply@blogger.com1tag:blogger.com,1999:blog-6356224015737713315.post-52399294727787043982013-05-15T20:21:00.001-05:002013-05-15T20:21:37.621-05:00Smiling through the pain... <div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEN1OxfamUyjEkyt_NzXbCtMy3O8eHTwQjUlf8KJEvkUNH3dlLKPJ4qU2EMh_M01Bb_89ZfG5CJhqabKXPGUULCE9PuKDBjfPpAqILF0ZhRo0_z1pZ_AxKZoqM3w_Qpz1myFKm3YajezBY/s1600/-3da8507898bd2ece.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEN1OxfamUyjEkyt_NzXbCtMy3O8eHTwQjUlf8KJEvkUNH3dlLKPJ4qU2EMh_M01Bb_89ZfG5CJhqabKXPGUULCE9PuKDBjfPpAqILF0ZhRo0_z1pZ_AxKZoqM3w_Qpz1myFKm3YajezBY/s320/-3da8507898bd2ece.JPG" width="320" /></a></div>
<br />
It was a brisk, sun filled morning on the Jersey shore. We were fortunate to have intimate knowledge of the back roads in the local towns, and made it to the start in record time. We advanced through the parking lot to the entrance of Monmouth Park, as if we had backstage passes to a rock concert. Shortly after we arrived, we spotted Eric, with his distinct mohawk hair cut, new to the team this year, he added his own flash of excitement. This was going to be fun!<br />
<br />
Huddled in the van to stay warm, waiting for the rest of our teammates to get through the long line of vehicles pouring into the lot, you could feel the nervous energy. Chris called out to Nancy and Dani, two of our half marathoners, racing to the starting line as it was beginning. We exchanged quick hugs, and they were off!<br />
<br />
Soon after, Laura, Meredith, and Kyle came trotting over, and it was time to open the door, and roll down the ramp. The controls had recently been changed on my power wheelchair, and admittedly, I was still trying to get the hang of it. Chris eased me down carefully, and in a snap they transferred me from the chair into the jogger. Harnessed in, we headed for the last corral at the start. We were not looking to set any records that day; it was about the journey, not the finish time.<br />
<br />
This was the third year we were returning to the New Jersey Marathon. Although Chris ran it in 2011, he ran it alone, while my sister Angie, and cousin MJ, pushed me in a wheelchair to catch a glimpse of him at as many check points as possible. It was a sight to behold, two middle aged women pushing a third, as fast as possible, uphill then downhill, laughing hysterically! I cannot imagine what the people we passed were thinking, but we had a blast cheering Chris on at every opportunity. Having been diagnosed five months earlier Amyotrophic Lateral Sclerosis (ALS), I could still walk short distances, but my running days were over.<br />
<br />
In 2012, Chris ran while pushing me in the jogger, Meredith and Kyle joined us for the full marathon, while a group of nine other friends and family members ran the half. Kyle, also taught Physical Education, like my husband Chris, and Meredith, a former third grade student of his, was all grown up and teaching too. I love to tease him about it, because it makes Chris feel old. They had plenty to talk about during the race, and well... I was as snug as a bug in a rug, and managed to fall asleep for a bit after mile ten. Something Chris will never let me forget!<br />
<br />
This year, 2013, was very different, Super Storm Sandy had ravaged the coastline at the end of 2012, and my disease had progressed leaving it's crippling affect on my body. Neither of us would ever be the same physically, but our spirits were not broken!<br />
<br />
We started out slowly, at the back of the crowd of runners lining the start. A place, I'm certain, my veteran, marathon husband, has never before seen, and I promised myself, to stay awake the entire 26.2 miles. It was the first chance I had to see the shore since the storm, and I didn't want to miss a mile. As we traversed the course, vivid images of my childhood ran through my mind, followed by my first car, first apartment, and many memories of my adult life. I found myself once again, questioning why I had ever left. <br />
<br />
I enjoyed listening to the banter flying back and forth between the runners. Meredith and Kyle were weeks away from their wedding, Laura was running her first full marathon, and Eric had a witty sense of humor. Given that they were all good friends, there was plenty of material with which to do a stand up routine as they razzed each other, and kept me entertained through the whole event.<br />
<br />
Having been awake for every mile this year, I learned that marathon runners go through phases as the miles tick away. They start out pumped up, filled with adrenaline, calling out the mile markers as they approach. "That's three!", "That's six!", "That's ten...", "Looking good!", they cheered, while passing Shot Blocks and Goo for energy, and stopping briefly for port-a-pottys, Gatorade, water, or to thank a random citizen with a shout-out as we passed.<br />
<br />
Another big difference this year was that Chris allowed the team to participate in the hardest part of the race, pushing me! I know that was a tough decision for him, but I'm glad he relented; I think it gave each runner a deeper sense of sharing the experience, than running along side us could provide.<br />
<br />
By mile eighteen, I think it's safe to say we were all hitting the wall. This was close to the course turn around point, and it could not come soon enough, as all of us had reached some level of physical discomfort. This is when, for a brief stretch, we jokingly verbalized our discontent. We hated the sun, we hated the wind charging toward us, we even hated Eric, who pushed us faster, keeping up the pace!<br />
<br />
Luckily, this is also nearing the point in the course where we turn toward the ocean on the last leg of the journey. The grandeur and vast majesty of that view, at least for me, seemed to quell the pain to a tolerable level.<br />
<br />
The runners say, a marathon is really two races, a twenty miler and a 10k, and I can see why. At mile twenty, the game changes, and it really becomes a mental challenge; the only way through it, is to break it down, into bite size pieces.<br />
<br />
The 10k melts into a 5k, and eventually all that stands between you and the finish line, is the final two tenths of a mile. Although I was not running, it seemed that every muscle in my body ached from the inability to move, as badly as it did when I could run, and on some level, I shared the pain of my teammates.<br />
<br />
At mile twenty-six, all of them yelled out, "Let's bring this home!", and we lined up across the promenade from side to side, as we crossed the finish line together! This year I intended to earn my medal, and by the end of the race, I felt that I had!<br />
<br />
I dedicate this blog to my husband Chris, our friends: Meredith, Kyle, Laura and Eric, Nancy, Dani, and Frank, who signed up and smiled through the pain, to help those of us who struggle with ALS every day!<br />
<br />
We thank you for your friendship, commitment and generous support; we could not do this without you!<br />
<br />
Thank you my friend Loni, it was an honor to have you and Nathan at the finish line to place my medal around my neck.<br />
<br />
Special thanks to Joe Gigas, the Executive Race Director of the New Jersey Marathon, who welcomed us back another year, our friends and family members who's behind the scenes help made this trip possible, and Rob Spahr of the Star-Ledger for picking up our story during ALS awareness month!<br />
<div>
<br /></div>
ddhttp://www.blogger.com/profile/11472904338692304520noreply@blogger.com2tag:blogger.com,1999:blog-6356224015737713315.post-25823324743648700222013-04-15T17:56:00.000-05:002013-04-15T18:01:27.074-05:00Dear Friends and Family<div class="separator" style="clear: both; text-align: left;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJxDcqF-kBfpORNYzjwf6eBm3LgvIZ602QoxAwmYEuOX4Eyeu6Pkm01jOhbRhfPzI4Piod9KqQr2uhDIOY0ETEaVDCZu6EyBloUCJUe9JItuvkLYVT2mddmLkI7Z5wfZOvigEcCV0rIQMF/s1600/1053167_13113163307684.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJxDcqF-kBfpORNYzjwf6eBm3LgvIZ602QoxAwmYEuOX4Eyeu6Pkm01jOhbRhfPzI4Piod9KqQr2uhDIOY0ETEaVDCZu6EyBloUCJUe9JItuvkLYVT2mddmLkI7Z5wfZOvigEcCV0rIQMF/s200/1053167_13113163307684.jpg" width="148" /></a>As many of you know, I have been living with ALS, Lou Gehrig's disease since my symptoms began in early 2010. It's now been three years since this all began, and I have learned a lot about myself, and the incredible people who have been right beside me.</div>
<br />
When it began my fingers were twitching and losing strength, and you helped me open my water bottles. When my right leg started to drag, you laughed with me, and told me it was time to give up wearing heels. When I fell and broke my wrist, you started driving me to work, bought me a cane, and eventually a scooter to get around safely. When my speech began to slur, and it strained me to talk, you spoke for me. When I received my diagnosis, you held me in your arms and cried with me.<br />
<br />
When I could not come to work, you visited me, and when I could not climb down the stairs of my home you helped move me to a handicap accessible home. You walked alongside my husband and I in walkathons, and many of you cheered, walked, and ran with us in my first marathon!<br />
<br />
Together, with your help we raised over 50,000 dollars for research and patient care in the last two years! An unbelievable accomplishment, that our patient community recognizes with immeasurable gratitude. I see first hand the benefits of your fund raising efforts right in our local support group, and in the services provided to my family from the Les Turner ALS Foundation.<br />
<br />
In a few short weeks we will head back to New Jersey for our second marathon and we are not nearly as close to our goal as last year, yet every month there are more families coming to the support groups for help! Please share our story with your Facebook friends and family members. I'm typing this blog because I am fortunate enough to have technology that allows me to communicate with you even though I have lost my speech and the use of my arms and hands. Help us provide this and other needed equipment and services to others living with ALS! Click the link above to connect to our website and help or share my blog through Facebook. Please don't let this opportunity pass, someone is diagnosed with this disease every ninety minutes, help us stop it!<br />
Thank you,<br />
dd<br />
<div>
<br /></div>
ddhttp://www.blogger.com/profile/11472904338692304520noreply@blogger.com0tag:blogger.com,1999:blog-6356224015737713315.post-89439096116755481122012-10-01T07:42:00.000-05:002012-10-01T07:42:53.999-05:00It's Been Too Long…<span class="Apple-style-span" style="font-family: MarkerFelt-Thin; font-size: medium;"><span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0898438); -webkit-composition-frame-color: rgba(191, 107, 82, 0.496094); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969); line-height: 24px;"><br /></span></span>
<span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.09375); -webkit-composition-frame-color: rgba(191, 107, 82, 0.496094); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.296875); font-family: MarkerFelt-Thin; font-size: 18px; line-height: 24px;">
<div>
Several months have passed, the mild winter gave way to a warm spring, a searing hot summer, and this morning I snuggled under the covers as crisp autumn air filled the room. Quite a lot has changed since last winter; I hardly know where to begin...</div>
<div>
<br /></div>
<div>
We landed in a beautiful ranch home, on the perimeter of a small suburban subdivision, adjacent to an expanse of farmland that reminds me of growing up in the Garden State. Most days I am at peace, as I work within my limitations, and surrender worry to hands far bigger and stronger than mine. All that I need has been provided and then some... much more than I could imagine, and much more than I deserve. I realize these are all gifts. </div>
<div>
<br /></div>
<div>
We did not get here on our own, there are countless pairs of hands and feet that carried us. The list of overdue thank you notes is overwhelming. I have not lost my manners, but my hands betray me. I am so grateful for each of you, you know who you are... Don't give up on me!</div>
<div>
<br /></div>
<div>
We attended a "voluntary" wellness screening last weekend, where they take your vital signs, draw blood, and everyone reports on how many servings of fruits and vegetables they eat a day. In my condition, this strikes me as nothing short of humorous. Most of my meals are consumed through a feeding tube, it's been a while since I could honestly describe my exercise routine as cardio, and how do I respond to questions such as, "How ready are you to make changes in your lifestyle to improve your resistance to germs?" … Seriously?</div>
<div>
<br /></div>
<div>
Okay, I'll play along, but do they really think these surveys have value? Are they really collecting useful data? I stand firmly on the position that health nuts find it affirming and the rest of us have a skewed perception of what qualifies as a serving vegetables!</div>
<div>
<br /></div>
<div>
Nonetheless, one question did get me thinking... it went something like this... Do you belong to a group or organization where you feel you are making a contribution? Now we're getting somewhere! Isn't that what makes us thrive? Isn't that what makes us get out of bed in the morning when we could otherwise pull the covers over our heads and go back to sleep? Normally a question like this would get my mind dancing, but on that particular morning, sitting in my wheelchair, it was convicting. </div>
<div>
<br /></div>
<div>
Almost instantly, one of my favorite verses slipped into consciousness<span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0898438); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969);"> "<span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0898438); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969);">For everyone to whom much is given, of him shall much be required." -- Luke 12:48 or in The Message translation: ..</span><span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0898438); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969);">. Great gifts mean great responsibilities; greater gifts, greater responsibilities. An immense </span></span><span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0898438); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969);">sense of gratitude washed over me, followed in equal measure by a healthy dose of Catholic guilt, the remains of old programing. Who</span><span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0898438); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969);"> am I to be so fortunate and while I sit here consuming resources, how am I making a contribution? </span><span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0898438); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969);">How can I make good use of the time and capabilities I have left? </span></div>
<div>
<span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0898438); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969);"><br /></span></div>
<div>
<span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0898438); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969);">One week has passed since I began writing this post, the process is slow, as I toil daily the typing leads to fatigue, but I press on hoping to find the answer... </span></div>
<div>
<span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0898438); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969);"><br /></span></div>
<div>
<span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0898438); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969);">Today I conclude with this challenge… Despite the struggle to speak, weakened muscles and uncooperative hands,</span><span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0898438); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969);"> vow to bless one person a day, to love them, to demonstrate one random act of kindness, and focus on what I can do, not what I cannot... </span></div>
<div>
<span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0898438); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969);"><br /></span></div>
</span>ddhttp://www.blogger.com/profile/11472904338692304520noreply@blogger.com4tag:blogger.com,1999:blog-6356224015737713315.post-1172592950052326442012-02-23T21:05:00.001-06:002012-03-01T13:55:39.867-06:00Training Rides...<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuWgEw3IF-f-ENo1RZA7lwwXkZ8P4H3pYMkAexum7RDCupTmJ7-t6DkWZn2pNP7RUM3nfyDIRKQzoe5HLmI2vO-p5dTHY7SYBSO8a5i49baMW6l17f-SamP_jEI_qCBzeUe6THYbRaZDmk/s1600/photo+(2).JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuWgEw3IF-f-ENo1RZA7lwwXkZ8P4H3pYMkAexum7RDCupTmJ7-t6DkWZn2pNP7RUM3nfyDIRKQzoe5HLmI2vO-p5dTHY7SYBSO8a5i49baMW6l17f-SamP_jEI_qCBzeUe6THYbRaZDmk/s200/photo+(2).JPG" width="150" /></a></div>
<br />
<br />
This week I was finally able to get out into the sunshine and ride along with Chris on his training runs, and I could see right away why our proxy riders, Maddie and Amber, were enjoying the experience. Wow, fresh air, sunshine, and someone to push while I just sit back and savor the thrill of the ride, this is delightful!<br />
<br />
<br />
<br />
<br />
<br />
First I thought... I'd very selfishly claim the blessing of the mildest winter weather I can recall in my experience in Chicagoland, as Gods favor on our quest...and why not? After all on a beautiful June day in 2010, our beach wedding, got rained out, as a severe thunder storm passed through the area at the exact time it was to commence. Four months later, a very large deer ran into our brand new CRV, nearly totaling it. Did I mention, this happened while we were on our way to church? And...two months later, we got the news that I had ALS!<br />
<br />
Through it all my faith and my sense of humor, have stayed remarkably in tact, so I say sunny 40 degree weather in Chicagoland in February is gift intended just for us, and I dare you to argue the point, no matter how crazy or delusional it sounds to you. Stake your own claims...I won't stand in your way.<br />
<br />
I was elated that Chris chose to run my old rollerblade route, a three mile loop I would repeatedly race around to the point of exhaustion, at any opportunity during the warmer months. Still...my personal best at seven laps or 21 miles, would be shy of Chris' challenge to push me 26.2 in May. I've been joking about needing a blindfold for the marathon knowing how fast Chris can run, but I really wouldn't want to miss one moment of the experience.<br />
<br />
Chris shares the excitement of his riders, so it seems that he likes to have a chatty passenger, but for me, the relationship with the course was much too intimate to divert my focus with conversation. <br />
You see... it had been two summers since I'd felt the vibrations from the wheels against the pavement, and as they were emanating from the footboard where my feet were tethered, they were pulling me back into the memory. I closed my eyes, focused on the movement of the jogger, and slipped back into my skates to savor the run.<br />
<br />
I didn't have to open my eyes to know that we were winding down Saddleridge, or headed downhill on Bridle. I could still feel the burn in my quads as we pushed up Old Forge and Appaloosa, and I giggled when he took the steep winding path by the park at full speed.<br />
<br />
This was more than a training run for me; it was a chance to feel a little bit of the joy I used to feel under my feet; it was a wonderful gift, and I can't wait to get back out there.<br />
Thank you Chris...ddhttp://www.blogger.com/profile/11472904338692304520noreply@blogger.com2tag:blogger.com,1999:blog-6356224015737713315.post-72430350731394235512012-02-04T21:48:00.000-06:002012-02-05T10:16:25.646-06:00The Art of Possibilities...<br />
I have always enjoyed learning as an adult, and in particular I enjoy any form of learning related to leadership. I've been fortunate to have had the opportunity to attend business conferences and leadership conferences, to hear many of my favorite authors, motivational speakers, and leaders from a vast array of industries and professions teach. I'm sure my former co-workers are chuckling at the idea that I may have read yet another book that I'm all excited about sharing with them...<br />
<br />
In the summer of 2009, I invited my husband Chris to attend one such leadership conference and I was surprised by his response that went something like this "I'm not a leader, I'm a follower.". Wow! I thought, you get up in front of groups of children all day long and teach, and you don't see yourself as a leader? This boggled my mind, and I still wonder if there are others like him, who feel the same way.<br />
<br />
More than a decade ago, I read a book titled The Art of Possibilities written by Rosamund Stone Zander, family therapist, and her husband, Benjamin Zander, conductor of the Boston Philharmonic Orchestra and teacher at the New England Conservatory of Music. Their diverse experiences gave shape to interesting perspectives on leadership and it remains one of my favorite books to this day.<br />
<br />
Benjamin talked about a few ideas that helped to shape my thinking as a leader over the years. One was Giving an A in the Workplace, this idea reminded me that everyone has something to contribute, and my job as a leader was to create an environment in which people were appropriately tasked with responsibilities that allowed them to feel valued for what they had to offer. It also meant I had to give them the benefit of believing that they wanted earn an A, and examine the situation if the individual was not appropriately placed and needed reassignment.<br />
<br />
The second was his practice of giving his students an A at the beginning of a class but asking then to define in writing exactly how they were going to earn it. This idea was simple to apply in the business environment by getting people involved in their goal setting, shaping their roles in the organization, asking them what they enjoyed doing, and what they wanted to achieve. This approach increased ownership and helped to open our minds to tackling more challenging business issues.<br />
<br />
The third idea that really resonated with me was Leading from Any Chair. This in short means you don't have to be the Conductor to lead the orchestra, or in the business environment, you don't have to be the CEO, the owner, or even the boss to lead change, something I always felt passionate about. If what you want to do makes sense, no one will stop you from taking it on, and they may even decide to jump in and help you get it done!<br />
<br />
How does this apply to my "Adventures in Losing Stability"? When I think about how Taylor and Delaney approached the idea of devoting their community service project to create an event that would help raise awareness and funds, to support research and patient care for those suffering from ALS, I could not help but see these young women as future leaders.<br />
<br />
The written outline of their plan detailed each activity, expense, and expected proceeds to reach their goal of $5000, and they thought of everything! No one told these girls they couldn't do it and they took off with a running start. They recruited family, friends, parents, teachers and even secured business sponsors to participate; it was truly a successful community event, and they have already started talking about how to make it even better next year!<br />
<br />
Near the end of the event, I had the pleasure of meeting the girl's Social Studies teacher and mentor Mr. Bakke, shortly after, another teacher pointed him out and whispered in my ear "That's their teacher, I've heard him speak and he's a really awesome teacher!". I don't doubt that...<br />
<br />
I also met the girls' families: Lisa Gibbons and Jennifer Morrissey, siblings, aunts, and grandparents who were all fully engaged in making the event a huge success.<br />
<br />
So as I sit here writing this I wonder...does Mr. Bakke think of himself as a leader?<br />
Do these parents see themselves as leaders? And do they see, these two bright young women, as examples of the leaders that will emerge from their generation?<br />
<br />
And finally does Chris see himself as a leader, recognizing that this all started because he took the lead, setting a challenging goal to push me for 26.2 miles, and inspired two young women, and a community he served for 23 years, to get behind him in support of reaching it?<br />
<br />
From where I'm sitting... I surely do.ddhttp://www.blogger.com/profile/11472904338692304520noreply@blogger.com3tag:blogger.com,1999:blog-6356224015737713315.post-46587335558687064122012-01-21T20:24:00.000-06:002012-01-22T18:00:51.648-06:00Delaney & Taylor, Who says 13 year olds don't get it?First of all I won't pretend I'm Denise writing this blog. If you notice any problems with punctuation, sentence structure, or grammar please send all complaints to Mrs. Kennedy, my high school English teacher. Remember when we used to just call it English, not Patterns of Communication or Literacy Works? How things have changed, but I digress...
About a week before Thanksgiving I was approached by two past students of mine at Meadow Glens. Delaney and Taylor were my students from kindergarten to fifth grade. They are now seventh graders at Madison Junior High. I absolutely loved having them in class back in the day. As it turns out they had both taken an interest in running. Isn't that interesting? Maybe I'm rubbing off on people.
Anyway, they saw a newspaper article on Facebook about what Denise and I were going through and sprang into action. It seems that they had a service project coming up in Social Studies class and instead of volunteering at a homeless shelter or something else they wanted to do something "for someone who mattered to them." That's where I come in. I cannot tell you how humbling that simple statement was to me. I get all choked up whenever I think about it.
In the article it said I was going to push Denise in a full marathon in New Jersey on the first Sunday in May, and along with that I was trying to raise $26,200 (a marathon is 26.2 miles) for the Les Turner ALS foundation. That's where the strange number came from. Basically a thousand dollars a mile. Pretty aggressive goal but reachable, thanks to Delaney and Taylor.
So the girls decided to put on a dodgeball tournament to help me with my fundraising goal. Their goal was $5,000 which I thought was awesome. How cool would it be if they could reach their goal while helping me reach mine. So on the week Thanksgiving, Dodgin' 4 Lou Gehrig's Disease was born. These girls were on to something, something big.
The way in which these girls went about this event would probably impress a 20 year veteran of fundraising. They sold oodles of Dodgin' 4 Lou Gehrig's Disease bracelets for $2 a piece, got M&M Orthopaedics to spring for all the T-shirts for volunteers and players, and instead of 15 to 16 teams they ended up with 22!
They also created a Facebook page that has over 200 friends, rounded up 30 volunteers to help with the day's events, and the back of the event day program listed over 70 families and businesses who helped sponsor this event.
These girls are wise beyond their years; I'm sure they learned a lot along the way. For a first time event everything ran smoothly and a good time was had by all. Denise and I stayed for the whole event and were so impressed by the "community feel" through out the Field House.
The success of this event was so beautiful. I can't fathom the amount of work that had to go into an event of this magnitude. The girls raised over $13,000 for the Les Turner ALS foundation. Almost three times their original goal. To watch them during the event was a blessing. They thoroughly enjoyed all aspects of the event from planning to participating. I was so glad they could enjoy the day and see it all happen in front of their eyes. So many times In life you have all the hoopla leading up to an event and then "BAM!" it's gone and you don't remember a thing. These girls will remember this event always, a great life lesson.
Finally, what more can I say about Delaney and Taylor? I feel as if I had a front row seat to an actually blessing from God with the help of these girls. They single handedly changed my perception of today's youth. They are focused and want to be part of change. They want ALS to be cured. They believe they can help make it happen. They are making Dodgin' 4 Lou Gehrig's Disease a yearly event with an even bigger goal in mind. These girls "get it." I am so humbled to have been a beneficiary of their kindness and grace. What a blessing these two teenagers are.
Only thing left to do, run a marathon pushing my wife, Denise. It's not going to be easy pushing "Porky" but when I'm struggling towards the end nothing will stop me from reaching my goal. All I need to do is remember back to January 13, 2012 and that above all will get me across the finish.
P.S.
Please take a minute to check out the links to the right under Home to read more about the marathon and the tournament.Mr.Bhttp://www.blogger.com/profile/01900240561988197618noreply@blogger.com1tag:blogger.com,1999:blog-6356224015737713315.post-34092384124044461282012-01-15T22:10:00.000-06:002012-01-15T22:10:44.126-06:00The Dry Run...While I realize many of you may be thinking its time to move on to another topic and put the potty issues behind us... believe me when I tell you, I share your sentiments,and would have liked to report that the dilemma was resolved but that has not been the case. So hang in there, and try to summon the courage to continue reading. You may find yourself wanting to look away but feeling compelled to peek the way you do when passing a car wreck...<br />
<br />
The private garments arrived via the Internet and so the day came when I ventured out, fully outfitted for the Dry Run! I'd like to point out that this was an attempt to gauge comfort and feasibility, with the expectation to be somewhat uneventful and to quite literally experience a dry run, pun intended! <br />
<br />
I had no such luck, and learned quickly that I could not depend on Depends to fIt my bottom snugly enough to hold the inevitable deluge...proving my theory that they could not possibly work for a everyone between 115-190 lbs. Not having planned for the possibility of a wet run, at the age of 49, I had my first ever Commando experience...you can stop laughing now!<br />
<br />
Desperate for a solution, I finally called to schedule "The Big Fancy Test" I had been avoiding. The directions for test preparation included arriving with a full bladder. Really? You must be joking! If a had the ability to arrive with a full bladder and not lose control, I would not need the test! I opted for sipping some water on the ride there, in hopes that some would make it to my bladder before the test began, this appeared to suffice.<br />
<br />
The technition who performed the test was very pleasant and explained the procedure in detail before she began inserting tiny long tubes with electronic sensors in very private places. Once again humbled by the embarrassment of my business exposed, and with the added pleasure of being wired to measure fluid levels and contractions, I decided this was the equivalent of having Chris in the delivery room, had we shared the experience of the birth of a child. This was a new level of intimacy that would certainly enhance our marriage...good grief!<br />
<br />
Although, I still maintain the opinion that a non-invasive catheter is an oxymoron, when it was all over and done with, I'd have to admit it was not that bad. I'd been through worse, and I had minimal discomfort following the procedure. <br />
<br />
Two weeks later, we met with the doctor, our own Christina Yang, and learned that my overactive bladder was contracting intensely when it was filled far below capacity but it was otherwise functioning normally. Since the medication I was taking was not helping, there were two others I could try before resorting to more radical approaches to resolving the problem. <br />
<br />
She went on to describe a procedure where they use a pacemaker to regulate the nerve impulses that cause the contractions, and although that sounded interesting, I was still hoping one of the two medications we had yet to try would do the trick. In the meantime the nurse suggested we try the XL size kids pull ups, as I would likely fit into the size range and prevent leakage in the event of another incident.<br />
<br />
Another two weeks have passed since I started the new medication and I am happy to report that it appears to be working. Unfortunately, there were some side effects I should have paid more attention to that resulted in an unscheduled visit to the ER last week, but with extra fluids and a extra large bowl of Raisin Bran every day, I hope to avoid a sequel to that unpleasant trauma...<br />
<br />
While the pull ups with the cute butterflies, hearts, and peace signs are much easier to laugh about, I'm ready to give them up now... So let's hope this is the last you'll hear of my dysfunctional plumbing; I think we're ready for some new material...ddhttp://www.blogger.com/profile/11472904338692304520noreply@blogger.com0tag:blogger.com,1999:blog-6356224015737713315.post-13316757019303328742012-01-01T00:13:00.000-06:002012-01-01T00:13:44.260-06:00Always Looking Sexy...When we got home from the last plumbing appointment, I read through the paperwork describing the two tests that would be potential next steps, and decided the prescription was going to have to work! <br />
<br />
I began taking the medication and tried to convince myself it was working, but three weeks later, I was still unsure that anything had changed. I took some time to research the medication online, and read that you could take as much as 10mg daily and I was only at 5mg. So, I decided to call and ask if we could increase the dosage, hoping that would work. I was given the green light and informed that sometimes the medication took time to work and to give it a few weeks.<br />
<br />
Wanting desperately to avoid the tests, I increased the dosage and willed myself to believe it was making a difference... but in the end, in the battle of mind over matter, my will could not prevail, and embarrassing events began to occur more often than I'd like to admit. <br />
<br />
It had gotten to the point that I had to seriously limit my fluid intake, especially if I dared to push my luck and leave the house, but it really wasn't the best solution as the lack of fluids in general made me feel worse. <br />
<br />
While at the clinic for a study visit, a sample was requested, and since I was unable to comply, I had to admit to my less than brilliant strategy of fluid limitation. I was warned of the harmful effects of dehydration, and encouraged to utilize protective products to deal with the situation. After all these high tech garments were invented for the astronauts, there's no reason why I should be embarrassed about using them!<br />
<br />
Oh sure... Use the high tech argument with the geek! Just because I like computers, and software doesn't mean I'd be eager to wear Depends! However, I had to humbly admit, I needed to try some kind of a protective garment, at the very least when out of the house for extended periods of time. <br />
<br />
Okay, so the way I figured it, the most discreet way to handle this would be shopping for them on the Internet, and Amazon.com seemed to carry everything I've needed so far, and the search commenced. <br />
<br />
I wasn't prepared for the expansive selection, and the attempts at persuasive marketing to lure potential buyers. Although I needed them, it was apparent to me that I was not their target customer when I felt no excitement after reading "Now in new soft peach!"<br />
<br />
The product features were interesting: <br />
Size: small/medium fits 115 - 190 lbs -This was of concern to me; how is it possible that one garment could properly fit individuals that range 75 lbs in body weight? <br />
<br />
Two ways to change: step-in & pull-up OR easy change with 4 secure Velcro® closures, sounded too much like the description on diapers for toddlers. <br />
<br />
Maximum absorbency, captures and locks in odor, okay, sounds useful...<br />
<br />
Quiet and comfortable, you mean to tell me these make noise when you wear them? That ought to be hilarious!<br />
<br />
Made in the USA from domestic and imported materials... Seriously?<br />
<br />
And Unisex? It's been a while since I had to purchase diapers for my daughter, but I do remember them being gender specific, why would that change for adults?<br />
<br />
At any rate... I had to make a choice and none of the options were going to come close to matching my favorite French lace bras, so I had to find some way to have fun when it came time for a dry run with my new undergarments. And well... wearing my matching panties over the soft peach granny pants doesn't mean I've lost my mind, it's just an example of my resilient sense of humor!<br />
<br />
Sorry Honey... ALS does not stand for Always Looking Sexy!<br />ddhttp://www.blogger.com/profile/11472904338692304520noreply@blogger.com4tag:blogger.com,1999:blog-6356224015737713315.post-12257778576344254282011-12-17T17:11:00.000-06:002011-12-17T17:11:57.278-06:00Time To Call The Plumber!Okay, there's no getting through this without grace, humility, and lots of humor... <br />
So it was time to put on my big girl panties and call the plumber.<br />
<br />
Going back about fourteen months, I began to notice a sense of urgency. At the time we were still playing "What's My Disease?" and for the moment, I was being treated for Lyme's Disease, with a daily regimen of self administered antibiotics via a central pic line in my arm. I was told the medication was strong and it could have side effects, so just in case, I mentioned my symptoms to the nurse, on my weekly visit;<br />
we ran some tests but nothing turned up.<br />
<br />
Months passed and we had a name for my disease, but I was told it spared the plumbing so I occasionally requested another test, but to no avail. This pattern continued for a few more months, until I decided to ask my gynecologist on my annual visit. She asked a few questions, drew me a rough sketch of the female parts while providing something of an anatomy lesson, using phrases like "This is where the pee is, and this is where the poop is...". <br />
<br />
Seriously, I can't manufacture fodder this entertaining; perhaps I appeared to have arrived via the short bus, in any case it was amusing, she ordered more tests and referred me to someone better equipped to help me with my problem, the plumber.<br />
<br />
Apparently, plumbers of human pipes are as busy as the regular ones, so I was offered the first available appointment some six weeks later, and my problem continued to worsen. My legs were progressively becoming harder to move and my bladder, harder to control; this was heading in a bad direction.<br />
<br />
Finally, the day came and I was filled with hope that relief from this socially unacceptable behavior was within reach. The doctor looked a bit like Christina Yang on Grey's Anatomy, and projected a much kinder disposition; the combination was both comforting and reassuring in odd way, as I lay exposed for examination. She poked around in much the same fashion as her predessor with a new twist... <br />
<br />
A Kegel? Sure, I know what that is... Oh, you want me to do some now? Of course, I can do that. Yes... I know it's not a leg exercise, let me try again. Sheesh! I'm glad we cleared that up...<br />
<br />
She described a few different ways bladder issues can present in patients, some of the likely causes and respective treatments, none for which I felt any particular kinship. And most certainly not the one where she surgically creates some kind of flap to support a worn out muscle, I'll do Kegels from sun up to sun down to avoid attending that surgical event!<br />
<br />
So, she explained, we will start with some medication and see how that works, and if that doesn't help, there are some additional tests we can set up. One is a flow test and the other is a Urodynamic study, but let's wait on the Big Fancy test; we won't do that if the medication works.<br />
<br />
The nurse came in to follow up with the RX, provide paperwork that describes the two tests that would be possible next steps, along with my homework assignment a Void Diary. That was a clever name for a journal to record every ounce of intake and output including any spillage along the way... <br />
<br />
So now I had to document the whole embarrassing ordeal, and return with my shameful diary, but it didn't end there! <br />
<br />
Stay tuned for the next episode when we explore The Big Fancy Test!<br />
<br />ddhttp://www.blogger.com/profile/11472904338692304520noreply@blogger.com0tag:blogger.com,1999:blog-6356224015737713315.post-89461396266615500962011-12-07T15:30:00.000-06:002011-12-07T20:32:47.849-06:00I Believe...<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLSeA-v31F8m-oQsXfCg3z-yHedbcHlR8pXsJk-AtKWzhqkbVaTvpyYELOB_cVnQWDSqDGJvYqb-l5UZTIK9RPpwVEDjmVtzdeHWVQpYHi5dDFgguD48JF3IzjgA7ukHgKFFfbeVBmiQi3/s1600/IMG00100-20111207-1035.jpg"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><img alt="" border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLSeA-v31F8m-oQsXfCg3z-yHedbcHlR8pXsJk-AtKWzhqkbVaTvpyYELOB_cVnQWDSqDGJvYqb-l5UZTIK9RPpwVEDjmVtzdeHWVQpYHi5dDFgguD48JF3IzjgA7ukHgKFFfbeVBmiQi3/s160/IMG00100-20111207-1035.jpg" style="clear: both; float: left; margin: 0px 10px 10px 0px;" /></span></a><br />
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Have you ever noticed the power Santa garners this time of
the year? If you are a parent of young children, I’m pretty sure you do… and
I’m guessing you too, have used it to your advantage.</span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">It seems that magically around Thanksgiving, when all of the
stores begin to look like Santa’s workshop, children are much more aware of
their behavior; they become unusually attentive, obedient and even more affectionate,
generously tossing “I love you Momma”
the way they used to toss Cheerios off the tray on their high chairs!</span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">If you haven’t seen this change, you have not done your part
to foster the myth. Try playing your favorite version of "Santa Claus Is
Comin' To Town" and be sure to sing along loudly. Better yet, encourage
them to sing with you, and teach them the lyrics. It seems regardless of age,
these clever little humans, have the cognitive power to grasp the concept and
then…you’ve got them right where you want them! Once mastered, it’s nearly
blissful from mid November through December!</span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Now, if for some reason this is not working, and assuming
you’ve done your part, technology can help you. There’s a website where you can
create a personalized video, and send it to your child from Santa. Speaking
from experience this works like a charm! Google PNP (Portable North Pole) Santa
and get working on it right away, it’s already December 7<sup>th</sup> after
all, and you don’t have much time left!</span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">By now you’re thinking …Where is she going with this, and
how does it relate to ALS? Well…while thinking about this phenomenon the past
few days, and seeing tangible results, my mind wandered off to the premise,
that we are all children of God, and much like we teach our children about
Santa: He sees you when you're sleeping, He knows when you're awake, He knows
if you've been bad or good, So be good for goodness sake… as the lyric goes, many
of us are also brought up with the concept that God, is all knowing and
omnipotent, and one day we will all be accountable for our actions; for some of
us… that day will come sooner rather than later.</span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">So, the question is, has that belief impacted my behavior? Sadly, no…I cannot say that knowing this has
always influenced my actions, and I can’t even say that since learning of my diagnosis,
and the inevitable prognosis, I have significantly changed for the better, but
my priorities have changed…</span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">December 10, 2010, the morning following news of my
diagnosis, I was lying in bed after spending most of the night sleepless, weeping
in my husband’s arms, and the phone rang. It was early, but looking at the
caller ID, I could see it was a close friend, who knew I would likely be awake,
and I was pretty sure she was checking to see how the doctor’s appointment went
the previous afternoon, so I picked it up. </span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">I’m not sure of what I said, or how she could even
understand me with all of the waterworks going on, but I do remember something she
shared with me, that helped shape my outlook as the dust settled in the months
to follow… thank you my friend.</span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">She told me that Elizabeth Edwards had died just a few days
before, on December 7<sup>th </sup>2010, and she read me an excerpt from this statement
on her Facebook page, the day before she passed. I have included the full text
below and bolded the excerpt.</span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<i><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">You all know that I
have been sustained throughout my life by three saving graces -- my family, my
friends, and a faith in the power of resilience and hope. These graces have
carried me through difficult times and they have brought more joy to the good
times than I ever could have imagined. <b>The
days of our lives, for all of us, are numbered. We know that. And, yes, there
are certainly times when we aren't able to muster as much strength and patience
as we would like. It's called being human. But I have found that in the simple
act of living with hope, and in the daily effort to have a positive impact in
the world, the days I do have are made all the more meaningful and precious.
And for that I am grateful. </b>It isn't possible to put into words the love
and gratitude I feel to everyone who has and continues to support and inspire
me every day. To you I simply say: you know.<o:p></o:p></span></i></div>
<div class="MsoNormal">
<i><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">With love,<o:p></o:p></span></i></div>
<div class="MsoNormal">
<i><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Elizabeth<o:p></o:p></span></i></div>
<div class="MsoNormal">
<i><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">December 6, 2010<o:p></o:p></span></i></div>
<div class="MsoNormal">
<i><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Chapel Hill, North
Carolina<o:p></o:p></span></i></div>
<div class="MsoNormal">
<i><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span></i></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Oddly, she died one year ago today as I am writing this, and
the excerpt is really all that I can remember from that phone call, but the text
is rich with wisdom that has carried me through the past twelve months. </span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">We all
know that eventually we will pass, and for those of us who believe in God, we
know He’s watching, and there will be accountability, but we also know that we are
human and fallible and we are forgiven. </span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">So, while I know my time here will end sooner than I had
anticipated, I take comfort in the opportunity to spend my remaining time
finding ways to savor the moments, to leave nothing unsaid, and love without
limits…because in the end, that’s all that really matters, and having this time
is a blessing because... I believe.</span></div>ddhttp://www.blogger.com/profile/11472904338692304520noreply@blogger.com0tag:blogger.com,1999:blog-6356224015737713315.post-10616653572746013242011-12-02T10:25:00.001-06:002011-12-02T15:00:03.868-06:00Thanksgiving...<br />
<div class="MsoPlainText">
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">First, I feel that I must preface this post with an explanation, as I am getting phone calls, e-mails and general inquiries, about my condition. S</span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">ince we have had a bit of a cold snap, and my allergy trauma should be toned down by now, i</span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">t seems that the closest of friends are beginning to wonder if I might actually be slacking off at this point... fair enough! </span></div>
<div class="MsoPlainText">
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoPlainText">
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Thank you for your concern, I am getting some relief from the allergy attacks and I have backed off the allergy meds to clear my head. So I am somewhat functional at this point. </span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">However, the title for this post, Thanksgiving, should give you some indication of just how long ago I began working on it. </span></div>
<div class="MsoPlainText">
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoPlainText">
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">So... clearly I am late to the party, but lets just embrace the fact that I've shown up at all and move on to the topic at hand because it is already December, and I am going to end up distracted with my holiday shopping if I sit at this PC much longer. (Yes, self diagnosed A.D.D. too...I'm a real prize!)</span></div>
<div class="MsoPlainText">
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoPlainText">
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">When I began this post, I really did have Thanksgiving in mind, but as you read it, you may detect the places where interruptions demanded I attend to something else and well... upon my return, my original train derailed and I ended up on a different track altogether. In the end, I may have gotten to a different place, but it must have been where I needed to go. After all this is mostly therapeutic for me, and you are along for the ride... </span></div>
<div class="MsoPlainText">
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">End of preface.</span></div>
<div class="MsoPlainText">
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoPlainText">
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">There are so many things to be thankful for as I reflect
on the expanse in my rear view... I have always had all that I needed and then
some... and as </span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">I grew older and more socially aware, I realized that many of us
live in unbelievable excess, while others live in extreme poverty. This concern
especially breaks my heart when I see how poverty affects children, so for some
time now I have committed time and resources to organizations focused on this
issue.</span></div>
<div class="MsoPlainText">
<br /></div>
<div class="MsoPlainText">
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">While I have had this awareness of excess for several
years now, and made some changes in my behavior, if I take an honest inventory, I would have to admit that in my
lifetime, I have accumulated much more stuff than I could possibly ever need. One
could easily point to my collection of shoes as empirical evidence of my
excessive consumerism. Mind you, that while I am not asking you to let me off the hook, I am not alone in this sin, many of you are right beside me and you know who you are...<o:p></o:p></span></div>
<div class="MsoPlainText">
<br /></div>
<div class="MsoPlainText">
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">This issue of excess vs. the under resourced, was even more apparent to me after I became sick. In
the initial months following my diagnosis, I became obsessed with concern for
what to do with all my stuff! I know how
crazy that sounds but it became a pressing issue in my mind, and while the average prognosis gave me 2-5 years to deal with this, my dysfunctional coping mechanism wanted it addressed immediately, if not sooner!<o:p></o:p></span></div>
<div class="MsoPlainText">
<br /></div>
<div class="MsoPlainText">
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">I began to lose weight, so I had a lot of clothes that
didn't fit, and months before I had to give up wearing heels, so there were
dozens and dozens of pairs of shoes, sandals, and boots, I could no longer
wear, and that was just the tip of the iceberg...There are accessories too and what about my bike, skates,
skis, and eventually my car? You can't take it with you, and I was obsessed
with giving it away! </span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">"It" being anything I could no longer use.</span></div>
<div class="MsoPlainText">
<br /></div>
<div class="MsoPlainText">
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">What was it that drove me to this urgent need to dispense
of these material possessions? </span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">I remember thinking that I needed to give these things to
people who needed them now, and not wait for the time to come when my family
would be burdened with the task of going through all of it. I've been there
before and it's draining both physically and emotionally, I could spare them
some of that...</span></div>
<div class="MsoPlainText">
<br /></div>
<div class="MsoPlainText">
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">What I was not prepared for was the impact the task itself would have
on me. Standing in my closet holding onto a rack for balance with one hand, and grabbing clothing with the other, I struggled physically to maneuver as I filled the bags. And then without warning, my eyes
flooded with tears and pain came from so deep in my gut that my mouth hung open, and I could hardly breathe. It wasn't a reluctance to part with my things, it
was grief, plain and simple. </span></div>
<div class="MsoPlainText">
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoPlainText">
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">This exercise was about letting go... giving up those things that were a part of the life I had, and transitioning to the next chapter. I wasn't going back, my legs weren't going to magically start working again, and this was the reality that sent me into hysterics.</span><o:p></o:p></div>
<div class="MsoPlainText">
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoPlainText">
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">I have yet to complete this task, I take it in small bites, because grief is a sneaky little devil, and it hides out waiting for its next opportunity to attack...</span></div>
<div class="MsoPlainText">
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">and I still have plenty for which to be thankful. </span></div>
<div class="MsoPlainText">
<br /></div>ddhttp://www.blogger.com/profile/11472904338692304520noreply@blogger.com2tag:blogger.com,1999:blog-6356224015737713315.post-37113238783187966562011-11-23T21:14:00.001-06:002011-11-23T21:17:45.811-06:00I'm no Slacker...It's been a rough week or so, and I have to admit I just haven't had the energy to write... But I would hate for any of you to think I was just slacking off so I'm going to try to fill you in between naps.<br />
<br />
On top of my every day physical challenges with ALS, I've been in the throws of my semi annual allergy attack which involves: head congestion, sinus pressure, a nose that runs like a leaky faucet, a choking cough driven largely by a post-nasal drip, and a case of what my doctor refers to as Eustachian Tube Dysfunction (ETD). Yet another incurable disorder I managed to score in the gene pool, that will often cause me to stick my fingers in my ears at what might seem to be an inappropriate moment. <br />
<br />
In short my head feels like a lead ballon and every orifice within it is clogged in some fashion. My former co-workers can attest to witnessing this event in the Spring and Fall of every year; it is most notably recognized by the choking cough that is about as pleasant to listen to as nails on a chalkboard. I assure you, it is as annoying for the chokee, as it is for those unfortunate enough to be in earshot.<br />
<br />
Now, there are some OTC and Rx options, that can help manage the symptoms until a lasting frost kills off the allergens but these remedies often zap me into another stratosphere. <br />
<br />
Pre-ALS, taking these medications often made me loopy but I remained somewhat functional, meaning I could take them after I arrived at work, as to avoid operating heavy machinery while drug induced, and get through the day fairly well. I would likely be more amusing than usual under these conditions, and the worst thing I can remember happening, was when I accidentally headed into the men's room instead of the ladies room. No worries, I caught myself in time...<br />
<br />
Post ALS, the combination of my regular medications and those that help manage my allergies simply knock me out. I find myself falling asleep while sitting at my PC, waking only to realize two hours have essentially evaporated.<br />
<br />
I'm usually up early but since there's no school this week, I took the liberty of sleeping in the past few days to try to get some extra rest. I wake surrounded by small creatures trapping me beneath the covers: Crabby the kitty sleeps off my left shoulder, Nik, a larger kitty is planted directly on my chest, and to my right competing for space, lay Maddie, my adorable eight year old with Blue, our jealous Border Collie mix, sprawled across her tiny body to rest his head on my right shoulder. <br />
<br />
Nik and Blue take turns licking my face, and Nik sneaks an occasional nip on my nose, until I pull one of my otherwise pinned arms, out from under the covers and give in to petting them. And so another day begins...by the time I get up, shower, dress and take my meds, I'm about two hours away from a nap...<br />
<br />
So much as cold temperatures are not my preference, I would be pleased with a nice frost to put an end to current unproductive schedule.</strike>ddhttp://www.blogger.com/profile/11472904338692304520noreply@blogger.com1tag:blogger.com,1999:blog-6356224015737713315.post-7446733671470681802011-11-08T18:33:00.001-06:002011-11-15T16:55:00.371-06:00Uncommon People...<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEju5N1TYg38ilt99_MNCpzvNpKyDbMmeSgtyRrs0ZbdZbtRuk_Y85be_pdVBn_aBD_XUIvUzxMkh2lzow8liReC4ii8UfteUnR-vwpictsi0vxh1kBRKsLRjjz239mz-R_YB9365XgzXNOV/s1600/schwarz_logo+crop.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEju5N1TYg38ilt99_MNCpzvNpKyDbMmeSgtyRrs0ZbdZbtRuk_Y85be_pdVBn_aBD_XUIvUzxMkh2lzow8liReC4ii8UfteUnR-vwpictsi0vxh1kBRKsLRjjz239mz-R_YB9365XgzXNOV/s1600/schwarz_logo+crop.jpg" /></a></div>
<br />
<div class="MsoNormal">
<span class="apple-style-span"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><span style="line-height: 115%;">Twelve years ago this month, I</span> began
working at a family owned business in the height of their busiest time of the
year, the holiday season. The atmosphere was a bit crazed at the time, since
they had just gone live with their new ERP system and well…the organization was
reeling from strong growth and adapting to both organizational and functional
changes. I wasn’t sure about what I stepped into at the time but I soon realize
how fortunate I was…This was no ordinary workplace, and these were not ordinary
people.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<span class="apple-style-span"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span></span></div>
<div class="MsoNormal">
<span class="apple-style-span"><span style="line-height: 115%;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Over the years, I was blessed to have the opportunity
to grow and learn through challenging assignments, and the rewarding experience
of encouraging others to achieve their potential. I worked with a team of
people who were capable, responsible, and resourceful, and they had a unique talent
for using humor to diffuse stress. I also had the privilege of developing
lasting friendships, and getting to know the people I worked with and their
families.<o:p></o:p></span></span></span></div>
<div class="MsoNormal">
<span class="apple-style-span"><span style="line-height: 115%;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span></span></span></div>
<div class="MsoNormal">
<span class="apple-style-span"><span style="line-height: 115%;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">The business was a good combination of large enough
to provide challenge and growth, yet small enough for everyone to be known for
their strengths and contributions. It was not unusual for the Owner or CEO to
greet staff members by name while passing them in the hallways. It had the feel
of being home to me for many years. This in of itself made it difficult to
accept the fact that the progression of my disease would eventually force me to
give it up much sooner than I wanted.<o:p></o:p></span></span></span></div>
<div class="MsoNormal">
<span class="apple-style-span"><span style="line-height: 115%;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span></span></span></div>
<div class="MsoNormal">
<span class="apple-style-span"><span style="line-height: 115%;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">While the physical changes were gradual, it did
become apparent that something was wrong by the end of 2010, and although my
co-workers didn’t pry, they began to show concern, and offer assistance when I needed
it. Those closest to me knew of our pursuit to figure out what was
causing these changes in my physical condition, and when we confirmed the
diagnosis, the word began to get out.<o:p></o:p></span></span></span></div>
<div class="MsoNormal">
<span class="apple-style-span"><span style="line-height: 115%;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span></span></span></div>
<div class="MsoNormal">
<span class="apple-style-span"><span style="line-height: 115%;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">I will never find words to accurately describe the
overwhelming support and caring I experienced in this organization, from the Owner,
CEO, and Executive Team, to those in my group, and others, outside of my group,
with whom I rarely worked. They were kind and generous beyond any expectation. One
incredibly bighearted individual provided a scooter that made it safer for me
to get around in the building, co-workers held doors, waited patiently for me
to pass, and smiled or joked with me to normalize what could otherwise be
awkward. <o:p></o:p></span></span></span></div>
<div class="MsoNormal">
<span class="apple-style-span"><span style="line-height: 115%;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span></span></span></div>
<div class="MsoNormal">
<span class="apple-style-span"><span style="line-height: 115%;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">They sent personal notes, cards, and thoughtful
gifts, offered prayers, made meals for us, took me to lunch and even doctor’s
appointments. One special family drove out of their way to take me to and from
work for eight months, often treating me to a Starbuck’s venti black coffee on
the drive in. They carried my bags, my lunch, my walker, and let me grab onto
them, as I moved slowly to get in and out of the building.<o:p></o:p></span></span></span></div>
<div class="MsoNormal">
<span class="apple-style-span"><span style="line-height: 115%;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span></span></span></div>
<div class="MsoNormal">
<span class="apple-style-span"><span style="line-height: 115%;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">When we formed a team to participate in the walk
for ALS, they mobilized a fund raising effort that collected thousands of
dollars in donations to support ALS patients and their families, most of which
came from their own pockets. They additionally provided donations for any
equipment I might personally need.<o:p></o:p></span></span></span></div>
<div class="MsoNormal">
<span class="apple-style-span"><span style="line-height: 115%;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span></span></span></div>
<div class="MsoNormal">
<span class="apple-style-span"><span style="line-height: 115%;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">This is no ordinary company, and these are not
ordinary people; they have been my family for a long time, and this is only one
example of how they take care of their own. <o:p></o:p></span></span></span></div>
<div class="MsoNormal">
<span class="apple-style-span"><span style="line-height: 115%;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span></span></span></div>
<div class="MsoNormal">
<span class="apple-style-span"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><span class="Apple-style-span" style="line-height: 115%;">I can identify with what Lou Gehrig was feeling
when he gave his Luckiest Man on the Face of the Earth speech at Yankee
Stadium, because for the last twelve years, it has been an honor to work with
such a fine group of people and for that I am </span><span class="Apple-style-span" style="line-height: 18px;">truly</span><span class="Apple-style-span" style="line-height: 115%;"> grateful.</span></span><span class="Apple-style-span" style="font-size: medium; line-height: 115%;"><o:p></o:p></span></span></div>ddhttp://www.blogger.com/profile/11472904338692304520noreply@blogger.com1tag:blogger.com,1999:blog-6356224015737713315.post-13325131999099362692011-11-07T18:20:00.001-06:002011-11-07T18:20:59.000-06:00My Tables Manners are Appalling!<div class="separator" style="clear: both; text-align: left;">
</div>
<br />
<div class="" style="clear: both; text-align: left;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhj_eSC63bddCkeXuGUhRLf7C-sXnY7WFP_qLgtAfnD0syXvDORvnJLmvVKsl-WxMAEHkzThBXcYpCWcNFxzQVrPqQvlC49DQ1NKW7KbAHm0g33TwGun77IwQGh2RsDXWU516kuNE69-BOI/s1600/rsz_tiffany.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhj_eSC63bddCkeXuGUhRLf7C-sXnY7WFP_qLgtAfnD0syXvDORvnJLmvVKsl-WxMAEHkzThBXcYpCWcNFxzQVrPqQvlC49DQ1NKW7KbAHm0g33TwGun77IwQGh2RsDXWU516kuNE69-BOI/s1600/rsz_tiffany.jpg" /></a><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">I’d
like to apologize to those of you who have had to sit through a meal with me
recently. While I am still the proud owner of a copy of Tiffany’s Table Manners
for Teenagers, had you the experience of watching me try to employ the use of
common utensils, such as a fork, spoon,
or heaven forbid, a knife, you would think I was raised by a pack of wolves.</span></div>
<div class="separator" style="clear: both; text-align: left;">
</div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"> I realize it doesn’t help
dispel the allegation, when I try to pry the cap off the bottled water with my
teeth, but the rubber band trick I was using no longer works for me. It seems
that between the loss of fine motor skills and muscle tone, even a spoon is not
safe in my hands, and most foods simply do not defy gravity long enough, to
stay on the utensil until reaches my mouth. Luckily some gets in, but the rest either
falls on my plate, the newly laundered tablecloth, the napkin in my lap, or if
Blue is really lucky it goes straight to the floor. </span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">This ongoing struggle
has played out in several ways: it takes me a really long time to eat; I am usually
tired and still hungry by the time I give up. Chris will sometimes cut my food
for me, which is thoughtful at home, but could become embarrassing if we start
to do it in public. Blue eagerly awaits his just rewards during dinner, and on a happy note
I weigh less than what’s printed on my driver’s license, and how many of us can
honestly say that?</span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">I bring this up because… well, now that it’s November, and
the holiday season will soon be upon us, some of you may want to take this into
consideration before adding me to your guest list for a holiday gathering. Or,
if you are willing to take the chance, be prepared to find me a dimly lit place,
away from your nice china and throw me some finger foods. </span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<!--[if gte vml 1]><v:shapetype id="_x0000_t75" coordsize="21600,21600"
o:spt="75" o:preferrelative="t" path="m@4@5l@4@11@9@11@9@5xe" filled="f"
stroked="f">
<v:stroke joinstyle="miter"/>
<v:formulas>
<v:f eqn="if lineDrawn pixelLineWidth 0"/>
<v:f eqn="sum @0 1 0"/>
<v:f eqn="sum 0 0 @1"/>
<v:f eqn="prod @2 1 2"/>
<v:f eqn="prod @3 21600 pixelWidth"/>
<v:f eqn="prod @3 21600 pixelHeight"/>
<v:f eqn="sum @0 0 1"/>
<v:f eqn="prod @6 1 2"/>
<v:f eqn="prod @7 21600 pixelWidth"/>
<v:f eqn="sum @8 21600 0"/>
<v:f eqn="prod @7 21600 pixelHeight"/>
<v:f eqn="sum @10 21600 0"/>
</v:formulas>
<v:path o:extrusionok="f" gradientshapeok="t" o:connecttype="rect"/>
<o:lock v:ext="edit" aspectratio="t"/>
</v:shapetype><v:shape id="Picture_x0020_1" o:spid="_x0000_s1026" type="#_x0000_t75"
alt="https://careers.tcu.edu/images/breadplate.jpg" style='position:absolute;
margin-left:1.5pt;margin-top:8.95pt;width:66.75pt;height:50.25pt;z-index:1;
visibility:visible;mso-wrap-style:square;mso-wrap-distance-left:9pt;
mso-wrap-distance-top:0;mso-wrap-distance-right:9pt;
mso-wrap-distance-bottom:0;mso-position-horizontal:absolute;
mso-position-horizontal-relative:text;mso-position-vertical:absolute;
mso-position-vertical-relative:text'>
<v:imagedata src="file:///C:\Users\Denise\AppData\Local\Temp\msohtmlclip1\01\clip_image001.jpg"
o:title="breadplate"/>
<w:wrap type="square"/>
</v:shape><![endif]--><!--[if !vml]--><!--[endif]--><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYWRwfnLjQlWYGFMP1IHeYcv_Ukpb4hyphenhyphenqLVjLbu7m7uvne3bs0LHyEk2BrthIaVoVqNaooy1f4jJf20SvvTT6AaEtZkHPkFVtQ05fco4J8BopVEJvQtpUTSzVySAfznz71rb0Z5PxTNLR8/s1600/rsz_breadplate.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYWRwfnLjQlWYGFMP1IHeYcv_Ukpb4hyphenhyphenqLVjLbu7m7uvne3bs0LHyEk2BrthIaVoVqNaooy1f4jJf20SvvTT6AaEtZkHPkFVtQ05fco4J8BopVEJvQtpUTSzVySAfznz71rb0Z5PxTNLR8/s1600/rsz_breadplate.jpg" /></a><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Don’t worry if it’s a more formal setting,
I can still remember to discreetly check my hands under the table so I don’t mistakenly
use the wrong bread plate or water glass… </span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">I’ve lost control of motor functions,
not my good sense.</span></div>
<br />ddhttp://www.blogger.com/profile/11472904338692304520noreply@blogger.com1tag:blogger.com,1999:blog-6356224015737713315.post-72284938836303836542011-11-03T18:34:00.002-05:002011-11-03T18:34:51.763-05:00God is Always Working Upstream…<br />
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">I don’t remember the first time I heard this phrase, I
suppose it was at a time in my life when things weren’t quite going the way I wanted,
and someone gently tossed it out in hopes that I could grab onto it and believe
that it was all for the best. While at the time, I doubt it felt like anything
more than a Band-aid on a gushing open wound, it was recorded somewhere in my psyche,
so one day it could be summoned after the bleeding ceased. Many years later, I stand
firmly on this belief.</span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">It has also been said, that if you stand too close to a
mural, you can only see splashes of color, but as you distance yourself from
it, the image comes into focus; herein lays the problem. We make our decisions based on our particular
perspective at any given moment in time, without the benefit of knowing what’s
ahead of us, as Julia Sweeney says, we make plans and God says Ha! </span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">So it seems, that even as a self proclaimed pragmatist, I’ve taken
some wrong turns, and made some poor choices; I’ve also had my fair share of
events outside of my control, wreak havoc in my life. But with distance, and
reflection, I began to see the safety nets, which were carefully placed around
me, before I ever realized I needed them… and how some of these events shaped the
woman I’ve become.</span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Therefore, had I not had the experience of losing my mom, my
younger brother, and my dad, each independently before I reached the age of thirty,
I might not have realized how fragile life is, and I might not have pushed
myself so hard, and I might not have taken the risks that made my life so rich.</span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">I met my husband, Chris about a year before my first symptoms appeared, and we were married just shy of 6 months before my diagnosis. Who could have ever imagined that our commitment for better or for worse, in sickness and in health, would be tested so soon? </span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">These days I tend to dwell in Joshua 1:9 “Have I not
commanded you? Be strong and courageous. Do not be afraid; do not be
discouraged, for the LORD your God will be with you wherever you go.”, because
I can see the foundation of support around me, and I can trust that He is still
ahead of me preparing the way... Chris standing beside me is all the proof I need.</span></div>ddhttp://www.blogger.com/profile/11472904338692304520noreply@blogger.com1tag:blogger.com,1999:blog-6356224015737713315.post-80209042017279334352011-11-02T14:40:00.000-05:002011-11-02T17:46:34.316-05:00Love and Other Drugs<br />
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Shortly after learning that the Neurology Team at the Mayo Clinic could
not find any evidence contrary to our original diagnosis, we decided to take a
break from reality and head for the local movie theater. We needed to
stay another night for the appointments scheduled the next day before we could
travel home, so it seemed like a good distraction.<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">We looked at the listings on my Blackberry and remembered we had
seen a trailer for a romantic comedy called Love and Other Drugs, with Anne
Hathaway and Jake Gyllenhaal, and decided it was just what we needed to
escape for a short time.<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Ironically, when we originally saw the trailer, we must have
missed the part that set you up for the underlying story line in which Maggie,
the lead character played by Anne Hathaway, was struggling with the early
stages of Parkinson's disease. <o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">I'm certain that for a typical couple it was an entertaining film.
It could undoubtedly be classified as a chick flick, but the men in the audience
were treated to seeing plenty of Anne Hathaway, while the women were likely
agonizing over the sad love story. Nonetheless for us, in the midst of dealing with
our own situation, this was anything but an escape from our reality.<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">In the end Jamie, played by Jake Gyllenhaal decides that Parkinson’s
Disease or not, he loved Maggie and he wasn't going to walk away… we held each other and wept through the movie.<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Nearly a year later, I can tell you that this disease has not torn
us apart, if anything, I believe it has made us closer, and our commitment
stronger. That’s not to say it doesn’t challenge us most days, it does... but with
humor, grace, and love, my husband, Chris, gets me through each day…</span><span class="Apple-style-span" style="font-family: 'Comic Sans MS'; font-size: 10pt;"><o:p></o:p></span></div>ddhttp://www.blogger.com/profile/11472904338692304520noreply@blogger.com0tag:blogger.com,1999:blog-6356224015737713315.post-40059316834861791262011-10-28T11:49:00.000-05:002011-10-28T11:49:05.557-05:00Angels in our midst...It's easy to see blessings when you set your mind to the positive, and so I've been taking time to identify and acknowledge these in a daily gratitude journal. Sometimes the entries are simple things like an unexpected note, a phone call or visit from a friend or family member, and sometimes they are entries about the people I would have never met if not for my illness.<br />
<br />
Strangers who demonstrated: kindness, compassion, hope and encouragement, just when I needed it most. Although, I may only name a few here, know that there have been many in the past year and as each day passes more of them appear along the way.<br />
<br />
Dearest Pauline, you are filled with light and healing energy and through you I have gained peace, and the capacity to be gentle with myself. Thank you for your guidance and healing.<br />
<br />
Holly, thank you for permission to allow myself to grieve and fall to pieces, when everyone around me always expects me to be strong, including the worst offender, me... Thank you for the encouragement to journal and embrace the journey.<br />
<br />
Robert, I feel so fortunate that you did not see my disease as an obstacle to healing my shoulder. The pain began in January and by September when you came to help me, it was frozen and immobile. I thought I would never regain the strength or range of motion to use my arm again.You gave me hope, encouragement and the will to fight through the pain.<br />
<br />
It's sad to say but when you have ALS, most of the medical professionals you encounter are focused on educating you on the progression of the disease, and helping you prepare for what's to come as you digress. It's rare to find someone who encourages you to fight! Thank you Robert for your positive spirit and faith in me.<br />
<br />
Laurie, from the day we met, I felt as if I'd known you for years. Thank you for your visits, and listening as I babble endlessly... Your practical insights help me stay on track.<br />
<br />
And....Joe, the neighbor just down the street, who may have never come by to meet us if he did not recognize that we shared the same challenging disease. Thank you for checking on me this week and bringing me hope in the form of new research information you gathered at a recent ALS seminar I could not attend.<br />
<br />
To all of the Angels in our midst, it's likely that our paths would not have crossed if not for my situation, but my life has been impacted by your presence, my faith made stronger, and my heart has been touched, and for that I am truly grateful...ddhttp://www.blogger.com/profile/11472904338692304520noreply@blogger.com2tag:blogger.com,1999:blog-6356224015737713315.post-60263230549476826802011-10-27T09:29:00.001-05:002011-10-27T09:29:34.560-05:00The Domino Effect...<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjd5LXWqG8sF_P4iI5W2G3EZ8mw98qG8gZyrTm_ikvxP_GfSMWTcq0PNUErYg41CpzgLy6mxAb5qJdK2F0CRx3XSjpbCoNKB1Uuo4VqUnGIKehpmLHuw1wjJE4sTS-JI5dN53WnQT50Ee-G/s1600/kaliedescope.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjd5LXWqG8sF_P4iI5W2G3EZ8mw98qG8gZyrTm_ikvxP_GfSMWTcq0PNUErYg41CpzgLy6mxAb5qJdK2F0CRx3XSjpbCoNKB1Uuo4VqUnGIKehpmLHuw1wjJE4sTS-JI5dN53WnQT50Ee-G/s200/kaliedescope.jpg" width="200" /></span></a></div>
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="font-size: large;">There is no cure for ALS yet, but there are medications your doctor can prescribe for the symptoms, for me it's been anti-inflammatory drugs to reduce pain, and muscle relaxers to try to relieve some of the spasticity. </span><span class="Apple-style-span" style="font-size: large;">Most of these medications come with their own set of adverse side effects. </span><span class="Apple-style-span" style="font-size: large;">No worries though, they can also prescribe medication for the side effects...</span></span><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="font-size: large;">And so begins the domino affect, but w</span><span class="Apple-style-span" style="font-size: large;">here does it end?</span></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="font-size: large;"><br /></span></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="font-size: large;">Before you know it your head is spinning and it takes an hour once a week just to fill those tiny compartments in your day of the week pill organizer! </span><span class="Apple-style-span" style="font-size: large;">Oh yes, you'll need one of those; try to avoid the ones that look like a mid-size tackle box. They have the am, mid-day, evening, and bedtime compartments for each day; helpful to those who need to take different medications multiple times a day. </span></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">However, I would suggest you exercise caution. If you would consider yourself to be someone akin to Felix Unger, it's tempting to get the tackle box and be that organized, but wait until you need to get those tiny pills out of the mid-day Wednesday slot! Not so easy with the loss of fine motor skills in your fingers.</span><br />
<br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">I recommend the single compartment, day of the week organizer with the locking lids. Get more than one if you need an am, pm etc. You can just open the lid for Wednesday, and pour those little buggers into your hand or a dixie cup. </span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">If you're more of an Oscar Madison type, with any luck you're married to a Felix type and it's already been taken care of for you... and it's color coded, not that you care... but try to make it seem like you do.</span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">All that said...you really need to decide for yourself how you want to handle all the prescriptions they hand you before it gets out of control. It's sort of like doing a cost benefit analysis, only you have to weigh the benefit against the discomfort, and you have choices.</span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">In my experience, some muscle relaxers can cause some of the necessary muscles to lose control, not so good if it affects the plumbing. Now, they can fix that with another medication, but this one could cause a backup on the other end, so you'll want to give it some serious consideration.</span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">Or you can take the one that causes acid reflux but Pepcid Complete should take care of that, and if not, we can get you a prescription for Nexium, the little purple pill, you've likely seen the commercial for that one.</span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">There is another option, but it can cause your legs to feel rubbery and unstable, so start with a smaller dosage and increase gradually. So you give it a try and okay, things are going well, no rubber legs but... well, if you admit that you're feeling a little sad and you find yourself crying over the silly things like, feeling pressured to decide what to have for dinner, that statement will earn you a prescription for an antidepressant faster than you can say Zoloft! </span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br /></span><br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7hPbAaNKtWq8Ryl4Z-FehW0NkPOlR68rwn9kKSuY_5qcED9xBXRhGvAc_zc6LDwpWsR-Jxgn9O5RhL6HHK5oQr_jvwI30RjWvmYjFwTERxGvQJU-zjRppZEwkaDBWi63hlAbBE1UbRWBc/s1600/pill+day+2.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="120" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7hPbAaNKtWq8Ryl4Z-FehW0NkPOlR68rwn9kKSuY_5qcED9xBXRhGvAc_zc6LDwpWsR-Jxgn9O5RhL6HHK5oQr_jvwI30RjWvmYjFwTERxGvQJU-zjRppZEwkaDBWi63hlAbBE1UbRWBc/s200/pill+day+2.jpg" width="200" /></a><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"></span></div>
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">No thanks, my pill organizer is full.</span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">There's no room for Zoloft.</span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">You've got to draw the line somewhere...</span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br /></span><br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br /></span><br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
<div style="clear: both; text-align: LEFT;">
</div>ddhttp://www.blogger.com/profile/11472904338692304520noreply@blogger.com0tag:blogger.com,1999:blog-6356224015737713315.post-75440019131913420912011-10-24T12:30:00.000-05:002011-10-24T12:30:00.783-05:00Holding out Hope...<br />
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="color: black; font-size: 13.5pt;">It was late December 2010, Christmas was only five days away, and
we found ourselves sitting in a tiny room at the Mayo Clinic in
Rochester, Minnesota under 38 inches of reported snowfall, getting a second
opinion...holding out hope that the young neurologist we saw at home, was wrong
about the diagnosis. <o:p></o:p></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="color: black; font-size: 13.5pt;">I prayed over and over on the long drive out, that God would
intervene and we would get better news. Upon arrival at the exit for Rochester,
I saw a rainbow in the sky and wanted to believe it was a sign of hope.<o:p></o:p></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="color: black; font-size: 13.5pt;">After all, the doctor couldn't be more than twelve; he must have
missed something... I was served a
death sentence, and I wasn't going to accept it from someone who had the
ringtone on his iPhone configured to quack like a duck. Funny, yes... and being
the geek that I am, I could appreciate the humor, but also being a child of the
sixties, I needed someone like Marcus
Welby M.D. to check things out.<o:p></o:p></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="color: black; font-size: 13.5pt;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinK5SAe9VILUCUCJJRGpARXhcsF2twdncTohKNpPYTnYk71IHNgZvTxGrsB11LG9NUk6M98BhQp4GaTYCg9F8AcbozjC7GyQFDc5qYfww0-RsA3QSPqHpPI45dEl0WVno555BTxovdGleb/s1600/rsz_marcus_welby_md+%25282%2529.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinK5SAe9VILUCUCJJRGpARXhcsF2twdncTohKNpPYTnYk71IHNgZvTxGrsB11LG9NUk6M98BhQp4GaTYCg9F8AcbozjC7GyQFDc5qYfww0-RsA3QSPqHpPI45dEl0WVno555BTxovdGleb/s1600/rsz_marcus_welby_md+%25282%2529.jpg" /></a></div>
<div align="center" class="separator" style="margin-bottom: .0001pt; margin: 0in; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinK5SAe9VILUCUCJJRGpARXhcsF2twdncTohKNpPYTnYk71IHNgZvTxGrsB11LG9NUk6M98BhQp4GaTYCg9F8AcbozjC7GyQFDc5qYfww0-RsA3QSPqHpPI45dEl0WVno555BTxovdGleb/s1600/rsz_marcus_welby_md+%25282%2529.jpg" imageanchor="1"><span style="color: blue; font-size: 13.5pt; text-decoration: none;"></span></a><span style="color: black; font-size: 13.5pt;"><o:p></o:p></span></div>
<div align="center" class="separator" style="margin-bottom: .0001pt; margin: 0in; text-align: center;">
<span style="color: black; font-size: 13.5pt;">This was the face
of a man I could trust!<o:p></o:p></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="color: black; font-size: 13.5pt;">The Mayo Clinic is an amazing place, within minutes of our initial
meeting we had a four day schedule of appointments with specialist and tests to
be performed. This included: the collecting all of the compulsory body fluids
for testing, a pulmonary test, another spinal tap and another EMG! <o:p></o:p></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="color: black; font-size: 13.5pt;">Bravo to the delightful woman who performed the spinal tap without
consequence. She stood less than five feet tall and likely weighed in at less than
100 lbs. She spent a few minutes introducing herself, and explaining what she
was going to do as I would lay on my side, facing the wall. No need to remove
my clothing or even my shoes, she simply said it works best when we just chat
during the procedure. So we talked about our kids, as moms often do, and in a
small exam room, without a fancy gravity table, x-ray machine or team of
medical professionals, she got the job done! Never under estimate the gentle
finesse of a woman.<o:p></o:p></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="color: black; font-size: 13.5pt;">The EMG however, was equally as painful as the first one,
but necessary I suppose, and the pulmonary tests were interesting. I
had a cast from a broken wrist that reached up my arm nearly to my shoulder
making it difficult to use the arm for anything, so they had to call in a lip
holder to assist in the testing. This was a tad awkward for both the designated
lip holder and me; it's best you don't try to visualize it.<o:p></o:p></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="color: black; font-size: 13.5pt;">Organized, efficient and thorough, the Mayo team reached a
conclusion in three days that had taken our doctors at home the better part of
the last nine months to determine. Unfortunately, our Doogie Howser was right,
and after we met with the specialist who delivered the confirmation, we sat
with a nurse who was charged with the task of educating us on what to be
prepared for as the disease progressed, clearly not the fun part of her day.<o:p></o:p></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="color: black; font-size: 13.5pt;">I remember taking some notes with my pad and pen, hardly legible
as my tears were hitting the page, making the ink run. I'm sure I still have
those notes, and the folder filled with resource information that would lay
untouched for months after we returned home. It was only a couple of weeks
since the first diagnosis and the confirmation stung, throwing us both back
into a state of shock.<o:p></o:p></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="color: black; font-size: 13.5pt;">We had the answers we had come for but it was a long, quiet drive
home...<o:p></o:p></span></div>ddhttp://www.blogger.com/profile/11472904338692304520noreply@blogger.com1tag:blogger.com,1999:blog-6356224015737713315.post-44391181985476163742011-10-23T18:50:00.000-05:002011-10-23T18:50:15.946-05:00Back to the Drawing Board...Okay, so it's not Lyme's disease, but I learned a new skill, I could inject antibiotics into a central line... and who knows when that may come in handy?<br />
<br />
We met with the neurologist again, and he explained that he had some ideas about what was going on, but he would need to perform one more test to confirm his suspicions. He could perform the test himself, in his office. <br />
<br />
So on December 9, 2010 we returned to his office for an EMG, short for Electromyogram. After careful consideration, I can report without hesitation, that an EMG is even more painful than a Spinal Tap, save the week long aftermath. This uncomfortable procedure involves placing electrodes in several strategic locations on your body: arms, legs, feet, and spine, while the doctor performs tests to evaluate the health of your nerves and muscles.<br />
<br />
He begins with something called a Nerve Conduction Study, in which he measures nerve function by stimulating them with small electric shocks, not too bad, similar to the Evoked Potentials testing, only more extensive, but it doesn't end there... <br />
<br />
In part two, he inserts a needle equipped with a microscopic electrode into your muscles, and as if that's not painful enough, he moves it around while you flex the muscle being tested. Did I say "OUCH"? When he stuck the needle in my back, my body jumped so high it left the table! For Pete's Sake...what did I do to deserve this kind of torture? Okay, I did accidentally kill my brother's gerbil when I was eleven, but he bit me; and it was not intentional; it was self defense! <br />
<br />
When it was over and the doctor left the room, I could see by the look on my husband's face that it was just as painful to watch, as it was to actually be the pin cushion. I dressed and we waited for the doctor to return with his diagnosis.<br />
<br />
It was surreal, like a scene from one of those medical TV shows you've watched. I could see his lips moving but the words hung in the air as if I could just refuse to accept them into my reality. ALS meant nothing to me...Lou Gehrig's disease? He was a baseball player, he died, but that was a long time ago... Two to five years... Seriously? I looked over at my husband and saw his eyes filled with tears but I held out, surely this can't be right...ddhttp://www.blogger.com/profile/11472904338692304520noreply@blogger.com0