Financial Uncertainty

This past week has been a difficult week, not so much physical, but more from a psychological perspective.  As a man, you always want to make sure you do your job as it concerns your family.  Since my diagnosis, I have had serious consternation about the long-term financial picture.  I have always despised thinking about adult stuff like wills, long term disability, trusts and life insurance.  Remember, in my mind, I am still 25 and just suffering from early male pattern baldness.  After several months of not wanting to deal with it, Staci and I spent the morning preparing for the meeting with the financial planner.  Truth be told, I broke down and cried looking at all of the end of life documents.  It's one thing when it is a suppositional future event but when it is a concrete reality, words and dates take on entirely different meanings.  We got through my breakdown and showed up at the financial planner.  We spent 4 hours and got through it all.  Without getting into the details, we walked out of there feeling very, very good.  We are lucky in the sense that we found a great team of financial planners a couple of years ago who have gone above and beyond.  They are creative but more importantly, truly care and are great people.  True to form, when we completed our work, we convinced them to go downstairs for a late lunch and cocktails.  In the final analysis, I walked out of the meeting feeling that I have done my job as a man and that the family will be fine! 

Video of the day:  https://vimeo.com/90276652

I don't want this to be a commercial for anyone but if you want the info on our financial planner reach out to me or Staci. 

 

 

Just Another Day

The last few days have been a true gift.  The outreach, as result of my blog, has nourished me and my family in ways that I can't begin to describe.  Thank you!  The best feedback I received was from people that were reticent to reach out to me and talk but were very appreciative that, through the blog, I provided insight into my world and the ordeal that we are all dealing with in some way. I get it! It's not easy for some, myself included, to talk about such things so I am glad the blog helps.  I do this as a means to work through my thoughts and feelings but some days I choose not to have thoughts or feelings so I will not endeavor to make this a daily diatribe.  For after all, we all have lives to live and shit to do. One of my high school friends expressed this lovely sentiment today..... "it isn't about the number we reach but is how we enjoy reaching the number"  Some would argue that I sometimes over enjoyed but that is a debate for another day! 

Video Link.  https://vimeo.com/89664105

 

Think Boating Season!

It's a Dog's Life

Vanity requires me to comment on my fat face found in the video released yesterday.  Doctors orders!  Seriously, I am under orders to pack a few on and to avoid weight loss.  So while the six pack may be gone, I now have beautiful love handles but will pull up short of getting man boobs.

I was out with the dogs and a lot can be learned from the way they conduct their lives.  If the linked video doesn't demonstrate how to enjoy the mundane of life then I don't know what does. 

 https://vimeo.com/89507323

Pswrd:  jamey50

Why

One of my favorite people in life sent me an e-mail thanking me for the blog and for giving a peak into what I am thinking and feeling.  My response to her was as follows:

 

 "I don’t know why I am doing it other than I am inexplicably pulled to do so.  It helps me work through things.  The truth of the matter is I really don’t know how I am doing.  You try to cope but coping is not dealing so maybe that is what I am trying to do.  I have said it before and I believe it to be true, this disease, in the long run, is more about how it impacts others in my life than it is about me so talking about it in a meaningful way will hopefully prove to be a healing activity.  Love you too!"

 J

I have attached a link to a video blog  (with much trepidation) that I recently completed following my John Hopkins appointment.  I have done several video blogs since January but this is the latest. Sorry that it is a bit long at 8 min. Please be kind!   Just follow the link and put in password:  jamey50 

Video:  https://vimeo.com/89457279 

 

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......