Notes on Life, #1

There are a few reasons for the creation of this blog.  One is to keep family and friends informed of what's going on, to share our story with other ALS patients in hopes that they might find it useful and then for purely the personal reason of keeping a journal to remember thoughts and feelings at different times.  Based on the keeping a journal piece these are a few items to note of late:

Christian

Things that are funny...

Our grandson Christian, as many of you know is quite a "Casanova" at the ripe ol' age of 5.  At a recent Cub Scout den meeting Christian arrived after all the boys were in place and he immediately runs over to me saying "hi grandma" with big hugs!  Afterward, he sees a young lady that is the sister of one of the cub scouts and immediately puts on his "Christian smile" and says "well, hello." - We didn't see hyde nor hair of them throughout the meeting.

On a different funny note, I had a bad day yesterday, yeah it was like the old children's story: Alexander and the Terrible, Horrible, No Good, Very Bad Day.  I was feeling a little taken advantage of by a number of "bureaucratic systems." Anyway, I begrudgingly headed out to Bel Air to pick up some odds and ends for dinner.  When I'm in a sour mood I tend to not register things around me (ah, alas it's all about me).  So when I entered my Bel Air points reward number and saw that I no longer had my thousands of points that I'd earned over the past month, I immediately went into the "no way, what the heck..." attitude (yeah, I was having a moment)

Just for the record I didn't even know what the points were for, but dang it if someone was going to take my points.  I asked the clerk what happened to my points, with a very straight face he said, "they are just bragging rights and we take them away randomly." - Anyway, at first I was puzzled and then I just cracked up - kudos to the Bel Air clerk - you were the highlight of my day!  (A smart alec always appreciates another smart alec)

Things That I've learned...

The idea of a bucket list has come up many times - probably encouraged by the Jack Nicholson and Morgan Freeman movie. My initial thought after the diagnosis was "yes, Patrick should write a list and we should start checking them off..."  My understanding of a bucket list is to do things you haven't had a chance to do before, but you've always wanted to before you "kick the bucket." 

Us in a Limo (my first time)

So we began this quest at Christmas time with a limo ride to look at the holiday lights throughout Sacramento.  Every year we've discussed doing this and we thought "hey let's do it, there's no time like the present." 

We set it up with a local company and they got us a Hummer limo a couple days before Christmas.  We took the family and the boys were pretty excited to see a limo show up at the house. A few things to note if you're considering this...  Firstly, limos are hard to get in and out of for normal folk, but even more challenging for someone with ALS. 

Secondly, if you're hoping to see Christmas lights - limos have tinted windows, the lights are pretty hard to see - be prepared to get out. 

Additionally, for those of us who suffer from motion sickness, it made me queasy.  So if you want my opinion, not worth the money or perhaps it's in the realm of "looks good on paper."



Caitlin and Patrick on our Christmas Lights Tour

So, I've put aside the bucket list concept in favor of another idea that an ALS patient blogged about.  His advice to recently diagnosed ALS patients was "don't do a bucket list, if you haven't found time for it in your life before, it probably isn't that important.  Instead he said do much more of the things that you already enjoy. I like this idea better, we've always found time to travel and be with family and friends, so that's where we plan to focus our time.

Times to Remember...

We spent Sunday evening with Patrick's Fantasy Football League (FFL) this past weekend! Now if you want to know what a "fantasy" football league is... hmm, well they all pretend that they are big shot football team owners and draft players.  The players drafted can be from any of the different NFL teams which makes Sunday football with Patrick odd because he doesn't root for teams, he roots for players.  I know, its weird...

Anyway, Patrick has been part of this FFL for over 20 years with a group of some great guys and one remarkable woman. At one point all these folks worked at Electronic Data Systems (EDS), Patrick's first job out of college.  EDS was acquired by HP a couple years back so it doesn't exist, but these folks are the best from those early EDS days...

Alegra, Dave, Stefano, Al, Patrick, Gary & Pat

To the FFL guys/gal you all may be a little bit greyer and/or balder, and perhaps a little rounder around the middle (except Alegra, you look marvelous), but you a great group of friends.  Here's to many more good times to come!

Warm Story...

We found out about Patrick's diagnosis right before Christmas, yeah not exactly much of a Christmas gift.  I wasn't really full of the giving spirit this year, but I did want to get something for Patrick.  So, its December 22nd and Caitlin and I headed out to the mall.  He's a hard one to buy for, but I wound up finding what I thought was the perfect gift.  I bought a movable spy camera that works with the IPad so he could spy on the dog.  We've talked about spying on the dog for years.   

So, after opening our gifts, Patrick and Caitlin played with the camera and chased the dog around - I wasn't paying that much attention, but they seemed to be having fun.  Later that night Patrick said to me - "I couldn't do it." I replied "you couldn't do what," he said "I couldn't move the little joystick for the spy camera." I felt awful, I hadn't considered the fact that this would require the use of fine motor skills, which is his greatest challenge right now.  He went on to add though that he passed it to Caitlin, who had been watching him, she took it and changed out the settings to make it move with the IPad instead of the joystick, so he was able to move the camera around... What a great kid Caitlin is and obviously she's gotten some of her dad's technical savvy.

Things to look forward to...

I have always believed that an essential part of being human and staying "whole" is to have "things to look forward to." This changes somewhat in the face of an ALS diagnosis, perhaps because it becomes all that more important, so here are the things we are "looking forward to..."

JANUARY: Disneyland with the grand kids
MARCH: Spring Training with the Giants in Phoenix with my sister, Denise
MARCH: Caitlin's 18th Birthday!
APRIL: Our granddaughter and future Girl Scout is due Apr 15th (yes just like taxes due April 15) - ha, I made myself laugh... (accountant humor)
MAY: England/Scotland Trip
MAY: Caitlin's High School Graduation
JUNE: Visit Patrick's family in Denver
JUNE: Patrick and Cheryl's 30th wedding anniversary!
SOGP meeting ETW - you ladies are the best!

Our best to everyone - hope this day finds you well and happy.