No News Is Good News

Happy 50th Birthday to me!  Nantucket with our Fabulous Friends!

I really don't have much of an update except to say that my doctor at Dartmouth reported no progression since the last exam.  The exam is not, what I would call, truly scientific but more observational. Nevertheless, I'll take what I can get! I did have an episode where I passed out and was taken to the hospital.  Stress, activity, travel, medicine and yes booze, all combined together, led to a late night visit to the ER.  No one ever accused me of being a genius! 

June marked two significant milestones.  I made it to 50....yea!  June also marks the one year anniversary of when Megan first noticed the early symptoms of ALS.    The thought of it still gives me chills.  One year in the books and hopefully I'll be able to log many more so that I can beat the bell curve on this unwelcomed life partner of mine. 

On another note, I have a  friend who has been impacted by ALS when his grandmother was diagnosed and ultimately succumbed.  He does a ride to raise awareness and money for ALS research.  The reality is that at any given time, due to the short life expectancy, there are 35,000 Americans alive and dealing with this disease.  Not a lot in the overall scheme of things, when you compare it to other more notable diseases, and as such does not get the attention, research and ultimate funding it deserves.  We need a Michael J. Fox  in our camp...just kidding.  I have attached his story and link if you are so inclined to support him in his 3 day 270 mile trek.  I have to admit, it is difficult for me to read. 

Hello,

 

I hope this letter finds you well.   This summer, my team and I will ride 270 miles by bicycle in the ALS/TDI Tri State Trek to raise money and awareness for ALS, a disease that claimed the life of my great grandmother.  ALS TDI is an organization that is committed to ending Amyotrophic Lateral Sclerosis (ALS) through the funding of cutting edge scientific research. ALS, commonly known as Lou Gehrig's disease, is a neuromuscular disorder that attacks and destroys the body's motor neurons. As these are destroyed, the brain becomes unable to send messages to the muscles which then weaken and lose their ability to move. In time the muscles atrophy and the person becomes unable to walk, talk, eat, and eventually breathe. Throughout the progression of ALS the brain is completely functional, and a person is fully aware of what is happening leaving the person trapped in his/her body.  There is no treatment and no cure for the disease, which typically proves fatal in two to five years. Scientists are still unsure as to how or why 8,000 Americans are diagnosed with the disease each year.

 

My story: In 1992 my great grandmother Mary Agnes Fortune (Gigi) passed away after a long and courageous battle with this horrific disease.  In 2011 I joined Team Easy Riders (8 riders) and together we were able to raise over $15,000 to support ALS/TDI research. This year, after a 2 year hiatus, I am returning to the trek to support a family friend and father of 2 who was recently diagnosed with ALS. Your support means so much to me and to all the families that have been affected by this terrible disease.    

 

                In support of ALS TDI and the important work they do, our team has committed to a lofty goal of raising $3600.00. Contributions of any amount are very much appreciated no matter the denomination. We will train to complete the 270-mile ride in three days. The ride is a challenge and my training is intensive, but ALS demands our attention and I will do all I can to help.

 

Here's how you can help:

Donate! It’s easy

 

Online:    http://tst.als.net/TeamFatTire  

               

Old School:  Checks can be mailed to me (please make it out to ALS Therapy Development Institute)

                                                Ryan Paveglio

                                                                24 Copley Ct

                                                                Auburn NH, 03032

Vortex of Normalcy

                               Running the race of Life with Death hot on my heals!

Well...Well....Well!  It has been almost two months since my last entry and it is amazing how ones perspective on time changes when faced with an uncertain timetable.  As I have said in previous entries, I fully intend on not dying with this diagnosis and am dedicated to living life as normal as possible.  An interesting dichotomy is created when you long for normalcy, after numerous months of turmoil, while at the same time a vortex of reality is always swirling around in the background.  In the past two months, I have entered this space.

Since I last checked in, I have been working, skiing, golfing, Red Sox games, boating, movies, yard work, Ryan's Lax games, walking, meditating, napping and numerous dinner rendezvous with friends from past and present.  I travelled to Chicago for a reunion with 5 high school buddy's and my brother Greg.  The first night of the trip,  I went to Wrigley with a couple of my long term colleagues, turned friends, for a Cubs v.s. White Sox game. The next night Greg, who turned 46 that very day, and I went to Comiskey for a rematch of the aforementioned teams.  We celebrated Greg's birthday in fine fashion.  When the high school boys arrived the following day we golfed, ate(too much), drank (too much) and just had a wonderful time busting balls and recalling past exploits.  My favorite was the karaoke session we had with a live band at a bar where the average age was 26.  Five 50 year olds singing Jenny Jenny by Tommy Tutone 867-5309 is quite a spectacle to behold.  By the way...several of us have packed on some lbs. and the hairlines have receded a smidgen. Despite time, distance and maladies, these childhood friends will always be friends!

The following week, I had to get Megan and her 127 pounds of luggage to LA for her summer internship in a downtown law firm.  I felt like the porter from the movie Titanic trying to get Kate Winslet's luggage aboard for her passage across the pond.  We got there ok and settled her into her new digs followed by an exploration trip of the area.  She is a block away from the beach...need I say more.  We attended game 6 of the LA Kings game against the Ducks (Kings won), hobnobbed with the rich and famous, and had multiple dinners with wonderful friends. We took a friends yacht to Catalina Island seeing scores of sea lion and pods of dolphin. The cove we pulled into was magical and the island restorative. When we arrived back at the docks from Catalina, we were met by Megan's grandfather (Geoffrey) and wife (Barbara).  We then settled in for a nice dinner at the Yacht Club.  A terrific way to end the day!   Spending time with family and friends, people of such fine qualities, puts a lot of things into perspective and reminds me of why the life each of us are given is such a gift.  As a father, there is nothing more precious than getting the kind of one on one time I got with Megan during this trip.  She is a great daughter who has turned into a terrific young lady and who has somehow turned into a great friend.  We said our goodbyes Sunday morning  and I arrived back home at midnight. Back at work Monday morning.  So tired!

So how am I really doing?  Physically, things are pretty much the same.  My left arm continues to be problematic with the loss of function and cramping that is now occurring on a much more regular basis.  I am sleeping fine.  I can feel muscle fasciculation in my left knee but it has not worsened in the last month or so.  I feel more fatigue than I ever have in my life and now take regular naps along w/  meditation sessions to combat the mental and physical aspects of this disease.  I remain hopeful that it will continue to be slow progressing.  Mentally, as described, it is a continual vortex that  swirls around the everyday normalcy of life.  The first couple of months, I was caught up in the crisis and the outreach from family and friends was ever present.  As things settle down, things go back to normal and people go back to their lives.  This is the way things should be and how I desire them to be but it still leaves me, at times, isolated in my thoughts.  Staci and the kids have been terrific and give me the strength to live for today for I know what will come but know not when! 


Sox Game with the Family

 
Wrigley With Ray & Jason
 

 Comiskey with the Birthday Boy!
 

 


High School Slubs  "Class of 82"

  

Throw back.  Go back the first pic of the High School boys of today and see if you can identify Mike, Jamey and Craig from yesterday! 







Dinner With Some Great People In Santa Monica!
 

Dinner At LA Kings Game

 

First Day Of Work

 

 

 

Catalina Island

 

Summer Comes To New Hampshire...Memorial Day! 

 

 

Katrina is the Queen of the Selfy! 

Trapped In My Head

Another week and another piece to the puzzle comes together.  Staci and I travelled up 89 to Dartmouth Medical Center in Lebanon, NH.  It is truly a gorgeous drive with a brilliant blue sky serving as a backdrop for the snow covered mountains, valleys, lakes and streams.  All of which tends to forcefully remind me how truly blessed I am for the time and space I have been granted.  Our exposure to the facility and meeting with the doctor went well enough.  We both agreed that this would be our base of operation for treating this disease as it progresses.  The parking definitely beats Lahey's!  Can you say free and readily available.  One of the things that startled me most during our visit was seeing all the people in the waiting area with advance stages of various neurological disorders!  It is scary to think that many of these wheelchair bound people were, just a few months or years ago, walking around as freely as I was on this day.  A stark reminder of the cruelty this disease will eventually unleash!

Staying positive and tackling each infirmity as they come, seems, to me, the only way to proceed.  I had many coaches who always said don't get ahead of yourself.  Focus on today's game and worry about tomorrow's game.....tomorrow.  Easier said than done!  I very often find myself trapped in my head thinking about what's next and conjuring up all kinds of unpleasant scenarios.  I wake up in the silent of the night and have nothing but my thoughts.  I find myself drifting off during the day and thinking what ifs.  Staying busy is the best coping mechanism I know.  I do crossword puzzles, listen to books during my commute, ski, play ping pong with Ryan, listen to Staci yap, spend time with friends or just watch TV.  Anything to keep my mind from drifting into dark places.  I realize this is all coping and not truly dealing.  Maybe this whole thing is, in some perverted way, a key to a deeper existence and self awareness.  I hope so!  Staci and I head to counseling next week to try to sort through our thoughts and feelings.  While I am looking forward to it as much as going to the ballet, I do believe that continued honest dialogue around emotional, financial & spiritual matters will be critical if I am to get through this with my dignity intact and if Staci is to get on the backside of it whole in mind, body and spirit!

Video Link:        https://vimeo.com/91219442

Trip to Chicago with some important people in my Life!

 

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