Why Not Me?

This is, by no means, the beginning of this journey but I now feel the need to start documenting what has transpired since June of last year and the emotional rollercoaster that has accompanied the journey.  Today is St. Patty's day, March 17, 2014, which puts the ALS clock at approximately 10 months.  Also, don't take the title of this post to be morose but rather an acute recognition of what we all must come to terms with at some point in time in our lives.  That tomorrows are not guaranteed and that the volume of mine are now certainly less than I had hoped!  That I intend to live whatever tomorrows I have left with love, optimism and vigor. The title is, therefore, more of a "call to arms" than a fatalistic outlook on what is to come.  Rest assured, it will get ugly and there will be down times but how soon and how ugly no one can predict.  In the meantime, for me the joy of life is found in the mundane of the everyday; dinner with my family, texts and selfies from Megan, teaching Ryan to drive, walking the beach, reading the paper with a cup of coffee, a hug from Staci, movies and books, driving to work, cleaning the garage, lounging in the hot tub, dinner club, skiing with Ryan and friends, ping pong, college financial aide paperwork (that one might be a stretch).  You get the point.  I hope to do a bit of travel with my family but the real solace for me will be found in extracting every last drop of joy out of the mundane because that is the source of true happiness.

I don't want to get into the details of the disease but I have included a link to a site that does a nice job in explaining ALS.     http://issuu.com/alsassociation/docs/guide_to_living_fuller_life_with_als?mode=embed&layout=http%3A%2F%2Fskin.issuu.com%2Fv%2Flight%2Flayout.xml&showFlipBtn=true

My symptoms were first noticed last June coming home from a day on the boat.  Megan noticed that my left tricep was twitching.  We laughed and found it amusing because it looked like something trying to get out.  I didn't think much of it and thought it was due to muscle fatigue from the days events.  It continued for several months but when I starting to notice some atrophy in my left hand and slight loss of function in August, I sought out my doctor.  It was thought that the pin in my elbow or some disc herniation may be the cause and I began to undergo various physical evaluations and numerous tests that included x-ray, MRI of the neck and several EMG's of the arm and whole body.  When none of these pointed to any mechanical cause, an MRI of my brain was immediately ordered which I can tell you was one of the most nerve racking things I have ever gone through.  The potential findings are very scary and armed with that knowledge, getting stuck in that tube with all those thoughts swirling around was butterflies in the stomach time. 

The Brain Scan, surprise, came back normal.  Of course, that is the good and bad.  ALS is a clinical diagnosis which essentially means that with time and excluding all other possibilities, your left with this turd of a diagnosis.  I received the first diagnosis on January 30 which rocked my world.  While I suspected ALS for a couple of months, there is nothing more devastating than sitting across from a doctor who is telling you that you just hit the shit jackpot of 1 in 100,000.  

I barely remember the drive home and when I got home, we had to tell Ryan.  As chance would have it, he had been in a school assembly a month prior with a young individual who suffered from advanced stage ALS.  He went right there in his mind and it was heart wrenching for me and Staci to see him come to realization that he might not have his father around.  The next day all three of us drove to Bentley University under the pretense of taking Megan to lunch.  As soon as she got in the car, she new something was wrong.  When I explained what was going on, she broke down as did the rest of us.  I am misty eyed just recalling these memories.  We all drove home and spent the weekend together.  Cried, talked, ate, cried, talked and ate for the rest of the weekend .  The conversations and hugs of that weekend serve as anchors for me every time I get down.  The expressed love and sorrow moves me to depths of emotion that I have never experienced.  Ryan's words, help around the house and ping pong matches truly moved me.  Megan reaching out to hold my hand telling me that she loved me while laying on the couch head to head watching a movie is something that I will never forget and will always draw strength from for the rest of my days!  Staci is and always has been the rock.  Without her I would be a mess.  Her love, strength and support through all this gives me a sense of calm and certainty that we will get through this and that things will be alright even when I am gone.  The immense outpouring of love and support from friends and family has been humbling and gives me further confidence that all will be OK. 

A second opinion at John Hopkins was up next and scheduled for March 4.  They are the epicenter of ALS which essentially means that they are the smartest folks in the country at knowing nothing about the disease. We drove to NJ to visit family the weekend prior to the appointment.  While in NJ, a snow storm moved through the region forcing us to leave early to Baltimore so that we could beat the storm.  We spent a nice couple of days and nights in a cozy hotel before the appointment.   On Tuesday, March 4th , we met with Dr. Ostrow who spent 3 hours evaluating me.  Staci and Kim Beans (my friend and advocate) were there and he couldn't have been more thorough or kinder with his time and words.  Afterwards, I underwent a two hour EMG being electrocuted and poked in every muscle of my body.  Unfortunately, the diagnosis was confirmed.  James Mattison Masingill...born June 8, 1964 has Amyotrophic Lateral Sclerosis or Motor Neuron Disease.  There is no cure and no treatment.  Trials, to date, have been failures and there doesn't appear to be anything on the horizon.  I am on the one medicine that has proved to slow the progression  by 10 % but it is not a cure. 

I told my family that the best thing they can do for me is to stay focused as I am attempting to do to the best of my abilities.  I will continue to work and play for as long as I can!  One of my regrets in life is that my family never dealt with the death of my mother when I was young and I am endeavoring to be open and honest about everything I am and will go through in the coming months and hopefully years.  We have to talk about what is going on in our hearts and minds and deal with our emotions. 

Today is St. Patty's Day!  Tonight I will attempt to extract the joy out of a pint or two! 

More to come......