Completely Overwhelmed!

WOW!  I never expected such an outpouring of love and concern from everyone.  I usually monitor my personal email at work, but I had to close it up today because I was so overwhelmed by all of the messages of support, concern, and hope from all of you.  It wasn't just my oversensitized emotions that made me verklempt today, it was true amazement and a feeling of love. warmth, and friendship from all over the world.  Several of you shared your personal stories with me today also - thank you, it really helped me, especially Susan.

I appreciate everyone's kindness and I share your love, friendship, and caring back with each of you tenfold also!  You really made my day, month, and year!

It is overwhelming some moments of every day to have a diagnosis of ALS and know that the end of my life is much closer than I ever imagined, but I rarely have the time to sit and ponder.  I have lots of time to live, love, laugh, and make lots of good memories with everyone.  Kim and I plan to do a fair amount of traveling in the next 2 years to see many of you and my widespread family across the U.S. and several continents.  We're working on a family reunion later this summer and we plan to start visiting family and friends in the coming weeks.

It was a good day at work.  I made some good progress on fixing my complicated program, although it was slow and painful and occasionally frustrating.  I have 4 of the 6 road type state mileages already approved by PennDOT, but the state highways are the ones I have been struggling with and there are about 100K segments that all have to be checked in terms of mileage calculations.  I finished up a little after 5, left the program to run so I can check in the morning to see what remains, and I beat the rain storms home.  Glad that I got my grass cut earlier this week - would have been 8 inches today, no doubt.

I am working on writing some of the new HPMS data validations tonight and I have to update the City of Charleston weekly project status report.  Once I have that done I can go to bed, play a few hands of WSOP Texas Hold Em on my iPad and read my book.

I told my longtime friend Frank DeSendi , the PennDOT GIS manager, about my condition this morning, and he was genuinely at a loss for words.  It is still very difficult and emotional for me to tell anyone, and I usually end up crying.  It's not that I am not strong willed, but ALS has made me an emotional hot  mess.  I can just barely speak in a high pitched voice when that happens.  The doctor indicated I could take some Valium to help with that affect, but so far I have tried to function without it.  I thought it would get easier to tell people with time, but so far it hasn't.

FYI, PennDOT is my home away from home - I have spent almost 10 years of my career doing work for them, with a good portion of that time onsite.  There are about 10 people on the floor working on project from GeoDecisions, where I spent 5 years of my career prior to joining the state, and 2 of my close friends and colleagues from MapQuest in Lancaster also.  Many of the PennDOT staff on the floor I have known for more than 10 years and I consider them part of my extended family.  It is a pleasure and a privilege to be back and helping them with HPMS submission again this year!  I love my work and my PennDOT family!

I haven't told all of my clients and work colleagues about my condition yet but am slowly getting the word out.  I don't want their pity, just their understanding that my communication and physical condition will get worse instead of better.  Fortunately, my weakness is limited to above the shoulders at this time, but the doctor indicated that the EMG revealed some fasciculations in my right arm and leg, although minimal at this time.  He indicated I would almost certainly end up in a wheelchair at some point.  I'll tell you about the EMG test some other time...

I am still a talented project manager and client contact, and I have a lot to offer in the coming years for as long as I am able to work.  While ALS affects the brain stem and motor neurons, causing muscle weakness, it doesn't affect the brain's cognitive capabilities, thankfully.

I plan to talk to the Hershey staff next week about what text to speech communications apps for the iPad they have found to be the most user-friendly.  I will start planning knowledge transfer to other Baker staff in Harrisburg so that I can share my knowledge and mentor some of our staff on what I know and so that they can help me with some of my workload and assist our clients when I am no longer capable.

I have decided to put together a team for the Hershey ALS Walk for the Cure on June 7 and I hope to have some of my friends join me for the 2 mile walk around the Hershey Med Center campus to help raise money for the ALS Association.  If you are interested in joining me, please let me know.  I participated 2 years ago with team N1 (Star Trek "Number One") after my friend Don Farrell from DEP was diagnosed.

A plug for my PA Turnpike colleague, Brian Hart.  He left for Alaska today after 3 years of training with 4 of his friends to climb Denali over the next 3 weeks.  He has a blog that I plan to monitor to see their progression and ascent.  Be safe, Brian!  For more information, tune into: www.denaligroup.blogspot.com 

Thanks for reading, and thanks for your messages!  I am deeply humbled.  I'll try to keep my posts a little shorter. :)

Your friend,
Jim