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.

Coping with an ALS Diagnosis

We received the final diagnosis of ALS, in mid-December by Dr. Robert Miller at the Forbes Norris ALS Clinic in San Francisco.  If you "google" Dr. Miller you will see that he is a Neurologist that has worked with ALS patients for over 30 years and is an expert in the field.  The difference between going to an ALS Clinic versus a general neurologist is dramatically different both due to the multi-disciplinary approach the clinic takes and the obvious compassion for ALS patients.

When Dr. Miller gave us the diagnosis he told us "this is the hardest time emotionally." Everything I've read from other ALS patients confirms this statement. Truthfully, I don't think I've ever felt so much grief and loss, so I guess I'd agree that this is a tremendously painful period.

It's been difficult to put it mildly and I can certainly wallow with the best of them, but I must say I become tired of myself - self pity has never been a strong suit with me or Patrick. Thankfully, Dr. Miller said that most ALS patients come out of this period and find a new normal and quality of life. Occasionally he said, some patients never come out of the lull, but he told Patrick that won't be you, because you've smiled and joked with me twice during this diagnosis.

Afterwards, Patrick and I went to lunch and he told me "I was just joking to cope."  I think that's the key - how do you cope?  Over the years we have used humor as a means of "lightning the mood" often during the difficult times. Is it a coping mechanism, absolutely, but isn't that what we need in the moment.

I will say that not everyone enjoys our sense of humor, but we share a common history and often snicker at the same things.  A few comedic moments of late:

"If you were going to win the lottery, instead of ALS couldn't you have won the 500 million?" That's my line:)

"I hope you get sick and die of Lou Gehrig's disease" - A line from the movie Ted... yes, we thought it was funny.

ROXIE, The Dog...

However, our greatest source of amusement these days is our new dog, Roxie.  She is OCD and I've never seen anything like it. She is obsessed with balls, stuffed animals and squeakers. She is our third retriever and the first that actually retrieves:) 

Many of you know that our house has many doggy rules and Roxie pushes all the boundaries; she walks on the carpet, occasionally gets on the couch and even made her way upstairs. I'm certain many of you are shocked -- yes, we tell her "no" but she has none of the "regret" our other dogs have shown.

Anyway, whatever your challenges, find the humor - life is full of lots of funny moments!

and BTW: no dogs were hurt in the making of this blog

Hold that Thought...

Firstly, I have to say how touched Patrick and I have been with the warm thoughts, touching emails and offers to help.  We are reminded of the many wonderful people we have in our lives.

When I talk with folks or receve emails the question of "how can I help" often comes up.  This makes us feel much loved and reminds us that we are not alone in this journey.  At this point, Patrick is at the very beginning stages of ALS, and his physical changes are subtle.  I suspect you didn't notice anything if you've seen him recently.   So, to answer the question "how can I help?" - my first item on the help list is "hold that thought," I suspect we will need some help in the time ahead, and we'll be looking to our friends and family.

Right now your warm messages, prayers and support are so appreciated by both of us. Thanks for making us feel that we are not alone. Additionally, we are grateful to those of you that have reached out to our girls, Caitlin and Corrinne!

Hugs and kisses to you!

Today is the First Day...

When I was young my family would take Saturday drives from my home town of Susanville to Chester for lunch at a restaurant called the Copper Kettle.  On the wall was a saying that puzzled me for years, "Today is the first day of the rest of your life."  It just did not make sense to me and I can remember pondering it for hours.

Well, I understand it now and it pretty much sums up how I feel these days and the need to make changes to enjoy the "rest of our lives."  If ALS does anything, it forces to you take stock and look short-term.  So, Patrick and I are working on planning out the next six months. With Patrick, planning ALWAYS involves some kind of Excel spreadsheet (you'd think since I'm the accountant it would be me, but no its him) - we have spreadsheets for all kinds of things.  

The next six month plan is full of trips, activities and absolutely reflects our "seize the day" mentality. Of course some of these activities are not as fun with the need to make home renovations, financial planning, medical appointments and meeting with the ALS Society.

ALS is a degenerative disease which means that Patrick's mobility will slowly get worse. It makes it all the more imperative that we take time now to enjoy life.  Our first trip is to Disneyland with our grandkids at the end of January.  The boys are super excited, probably a mistake to tell them so early because every time I see them, they ask if it's today. We are excited too, frankly its wonderful to lose yourself in the moment, when hanging out with the under 10 group.

So, our next six months start with visiting the Mouse in Disneyland!