Monday, October 31, 2011

Trick or Treat?

Mindy is a big believer in reincarnation.   But I'm afraid of what I might come back as... and then even if I did... I probably wouldn't remember it....  go figure !   .....ha ha ha

Sunday, October 30, 2011

A Friend Came By Today...

My sister-in-law Linda sent him to see me...





When He gets to your PC, escort Him to the next stop. Please don't allow Him to sleep on your PC.  The message He is carrying  is very important.

I asked Him to bless you and yours with peace, happiness and abundance.

Say a prayer and then pass Him on to bless others as I sent him on to bless you. Our assignment is to spread love, respect and kindness throughout the world.

Have a blessed day and touch somebody's life today as hopefully I have touched your life.

He's walking around the world via e-mail!!
Please pass it on so He can get there.... 

Friday, October 28, 2011

Congratulations St. Louis Cardinals!

Wow... what an unlikely journey to a Championship.  I love baseball because anything can happen.

Friday night's Game 7 win over the Rangers was sort of anti-climatic after the incredible Game 6. So many improbable be within one pitch of winning it all on three separate occasions and then ... not to.  That has to be extremely hard to deal with whether you are a player or a fan.

Not since the 1986 Red Sox, has a team been within one pitch, one strike, one out of winning the Championship three times in a single game.  That year of course, a million hearts were broken all over New England and the rest of Red Soxs Nation as that ball rolled under Bill Buckner's glove at first base.   I know, mine was one of them..

If you did not see either Game 6, it's hard to explain.  But like Yogi said, " ain't over till it's over."

I know how those poor fans in Texas feel...   I do....

Everyone says that this Game 6 will one for the ages.   I certainly doubt I will ever see a game like that again in my lifetime.  Perhaps this one will now replace that 1986 Red Soxs Game that comes up when you Google "Worst Baseball Loss In History." for the ages...  after the meltdown of my beloved Red Soxs this year... again...,  I wonder if I will ever see them win another World Series...   ... well... probably not in my lucid lifetime.   Anyway, those were great memories...

And thanks for going to Fenway with me last year Mick... even if the Yankees did lose we still had a good time.  That will make for a great memory son...

I wonder if they have baseball in heaven?   Ted Williams may be still be a frozen pop sickle  in Scottsdale, but I've always wanted to meet that guy... that may be my best chance to talk fly fishin' with the "Splendid Splinter"...

Tuesday, October 25, 2011

The Ticking Meter

My head feels like an old depot,
Worn by time and tears,
No more locomotives passing through,
Café filled with tales and baggage,
The old depot’s barren now,
There has been a great brain robbery.

“One cool spring day in 1971, the kind that makes New Englander’s smile at each other, I was driving with my husband down the main street of a small coastal town south of Boston.  I spotted a parking space in front of our destination, a café where we dined frequently, sharing chowder, fried clams, giant iced teas, and dreams of the future.
              I told my husband, ‘Look there’s a parking space.  Not only that – there’s money in the meter.’
              ‘I’m glad’,  he murmured, seeking my eyes through his sunglasses.   ‘But I think my meter is running out.’
              His metaphor fell on deaf ears.”

- From the first page of the opening chapter of “Learning to Speak Alzheimers” by Joanne Koenig Coste
And so begins an important book for both early AD sufferers and more importantly, for their caregivers.
It contains many useful checklists that explain the progression of AD and the behavioral changes associated with each stage... a checklist to know when to stop driving for example... and many other useful tips.   Most important, it discusses  "Habilitation"  a new approach for caregivers in understanding and dealing with the frustrations that AD sufferers undergo.

- I must remember to give it to Mindy to read...  it's a good thing she reads my blog entries, in case I "forget" ... ha ha ha...


On another level,  the metaphor  Ms. Coste's husband unintentionally spoke does create a realization of time ticking away.   One good thing from the book was Ms. Coste's statement which reinforced what my neurologist, Dr. Flitman, had said... and that was that the progression of the disease can take 3-10 years to progress from one stage to the next.

The problem is ... every person is different, and none of us really know how much "reality" time is left on our individual "meters"  do we?

I remain hopeful that the new drugs I am taking to slow the disease's progression will be like dimes to buy me a little more time in the real world.    But I also remain hopeful that, in the real time I have left, that AD research will turn up some quarters to turn the meter back a bit for all of us...

Monday, October 24, 2011

Notes From A Morning Walk...

Now that the weather is nicer, Samantha, the German Shepard Dog (GSD) and I try to get out for a 2-3 mile morning walk at least 3-4 days a week.  We have several neighborhood circuits we can choose from and at least so far, we have been able to find our way back home.   We sure miss Elvis, our “Little Monster” dog who used to challenge every dog, large or small, whose path we crossed.  But since Elvis left us to cross over the “Rainbow Bridge” several weeks ago, it’s generally been a lot quieter along these lanes.   That leaves a lot of time to think about the future and our own unsure path that lies ahead.

Today however, in the parking lot at the end of Mill Avenue, there was an SUV with the following bumper sticker…

That was some food for thought for the next 1/2 mile or so...  

"How would they know..."  I wondered?  Closed or not, I'd like to keep mine for at least several more years...

I am sure there are some other lessons in it somewhere...   but... I forget....

Life Cycle...

Sunday, October 23, 2011

Bob Seger Wait For Me

I Will Answer The Wind

Wait For Me  - Bob Seger

I will answer the wind

I will leave with the tide
I'll be out on the road
Every chance I can ride

No matter how far
No matter how free
I'll be a long
If you'll wait for me

There'll be times when I'll rise
There'll be times when I'll fall
There'll be times when it's best to say nothing at all

Knowing you're right
But letting it be
I'll be around
If you'll wait for me
If you'll wait for me

And I'll fight for the right to go over that hill
If it will only means something to me
I will not be persuaded
I won't be still
I'll find a way to be free

In the cool of the night
In the heat of the day
If you're ever in doubt
I'll be on my way
Straight to your side
I guarantee
I'll be around
If you'll wait for me
If you'll wait for me

how do you measure love?

How do you measure love? Is it measured by time? I think it can be...the more you go through together, the deeper the love. Ed and I really have no history, although in these 5 short years we have been through much. Before we were married my oldest child, then 34 years old almost died. He was in a coma, hooked to a ventilator, in icu. When he got out of the hospital he had to go back to the hospital daily for treatment for 6 weeks. I didn't know how I would be able to get him there and take care of him. If I don't work I don't make money. I have a private spiritual counseling practice. My family of course all pitched in to help out. But Ed said " bring him to my house, my schedule is very flexible I'll take care of him". We were just dating then. And that's how he got to know my Jason. He took him in. Drove him to the hospital and read the paper while Jason had treatment. He is a man with deep caring. He was always very good to my Mother. When he met her she was in her toothless, drooly, diaper stage. He always kissed her hello and goodbye.

He is a man with true compassion. When my Mom died he was the one to tell me. The day our grandchild was born, he was over the moon. He never had kids of his own and was so excited to share all the stages of a child. Elliot is our light, truly.

Perhaps even 5 years is enough time to create deep love with just the right ingrediants. I don't know. I do know that Ed's humor, compassion, caring, and the depth of his soul is what I love. I'll never know how deep and sustaining it could be from the foundation that we have built so far, but I feel grateful for this much and know that I do love him deeply. He's not always himself anymore and it saddens me, but mostly I just feel angry about it. I realize it is one of the stages a caretaker goes through. I am short with him at times and then feel guilty. If I was counseling myself I would say that it was a normal way to feel and be. But I vow to do better and then act badly again, impatient. I'll keep working on it. Praying about it. And reminding myself that yes five years was good. Better than nothing with such a great man.

Saturday, October 22, 2011

It actually scares me to death that he's driving even though his doctor suggested he not. He is not seeing some of the personality or behavior changes...will he recognise when he needs to stop driving?....I will have to get some help on this one. I certainly understand why he doesn't want his freedom taken away.

I remember how upset my Mom was when her little yellow mercedes was grounded...she insisted she could drive even though she rear ended someone at a light. It was a struggle for a long time ..explaining over and over again where her car was.

Tonight Rick, Amanda and Elliot carved and painted pumpkins, They put on loud music and made it grand. Rick carved his beloved Denver Bronco logo on one. Amanda painted a "momma, daddy, and Ellie pumpkin. Ed and I sat and watched until he became over stimulated and returned to his office where he recluses. Before he got up he had such a funny look on his face...he said he was going to try to remember it, but he won't... and more than likely since we have all been together less than 5 years won't even remember us at all. I am facing it, but it's hard.

Fast and Furious...

No... not a guns or roses story... we'll save that for another time.

It's Saturday morning and I am just back from my morning fun run... and no I am not talking about the two legged kind...  I gave those up years ago... all those years in the Army and I had to run 2-3 miles a day three to five times a week.  I took alot of pride in that I never failed an Army PT test and still finished #4 in the two mile run... well ahead of most of those younger guys... in my last PT test before retirement...  but that was 50 pounds and over 15 years ago.   There's another lesson in that too... but again... another time, another day...

No... today I am talking about a FAST, FUN, top off run in a four wheeled fiberglass red roller skate...

When Dr. Flitman was going over my early AD diagnosis, he suggested a number of things... and one of them was that I might consider not driving on the open highways, and maybe not at night ... and perhaps I ought to consider a co-pilot as well.   When he said that I was not FURIOUS, but I was annoyed.  Maybe I can't remember the governor's name all the time, but I have not had any spacial disorientations, at least not yet.

Maybe he was afraid I might forget I was on the freeway... or what the speed limit was ( - "But officer, I can't remember what the speed limit is - I have Alzheimer's you know?" )  ... or how to get home.  Or maybe he was just saying that to cover himself legally.   But none of that has manifested itself as yet... and until it does... I don't plan to give up riding in the roller skate or hanging up my keys...   maybe some day... but not yet...   no... not yet...

I grew up in modest circumstances in a small town in Maine.  While my family never lacked for anything (as least so far as I knew), we only had ONE brand new car the entire time I lived at home.   And indeed, being the thirfty, flinty old New Englander I am, I think it was my fourth car before I broke down and bought a new one.

But as a kid, there was only one car I lusted after, a red Corvette.  And when I turned 50, having achieved a certain modicum of success in life.  I got one.  The one I drive is 11 years old, highly modifed, but she will still go pretty damn fast... as least fast enough for me.

Life goes by fast.  Grab some of it before it all passes you by is my advice.  I plan to keep reaching out and gettin' me some while I can.

P.S.  If you live in Phoenix, stay off the damn freeways on Saturday mornings between 7 and 10 AM!  That could be me out there blowin' your doors off as I blast by.    SEE YA!

Wednesday, October 19, 2011

The 3 Faces of Ed

These days when I get home from work I don't know which Ed will be there....they are all new to me. There is the very animated goofy Ed, there is the angry sullen Ed, and there is the very tired I don't feel good Ed. But we are still finding humor in it all. That is all we can do for now.

Our joy is in our family...Jason, Micky, Rick, Amanda and Elliot. They remind us how important it is to stay the course.

A Story Of Getting To "Acceptance..."

On the day that Dr. Flitman told me...with 90% certainty, that I had Early Onset AD... I reacted... calmly.  I think I remember my wife breaking into tears and squeezing my hand. Her mother had died from AD and now she was facing yet another passage and another eventual... passing.

I just thought to myself...  "well, what a kick in the nuts."  Still, I was not shocked, but instead I found myself in a strange state of acceptance, grace, and peace... even when faced with such bad news.   Thinking about it later, I wondered how most of Dr. Flitman's patients reacted to such news.   I'll have to remember to ask him next time I see him.

A couple of Saturdays later, at her suggestion, I went with Mindy to see "Michael", a counselor we have used in the past to help us improve our "being married" skills...  well... mostly... MY "being married" skills.  After 18 years as a bachelor, marriage was pretty foreign to me, and I admit, even after more than four years in this second one, I am still learning how to be a better husband.    Anyway, I like Michael.  He brings a neutral, third party perspective.  And perhaps Michael can bring us both some perspective on this journey as well.

So Michael  asked me how I could be so "calm and accepting" of my dilemma.  I guess that perhaps other people might go through the well known Kubler-Ross five stage model of grief made popular in her book, On Death and Dying.  These include denial, anger, bargaining, depression, and acceptance.

But I seemed to have jumped immediately to ... acceptance... at least initially.

It was a lesson of personal strength I had learned many years previously.

My first career had been spent in the Army.  And, as most anyone who has spent a career in the military, you rarely go through all those years without a few close calls, especially if you spend a few years in the Combat Arms, or the Infantry, as I did.   And, in the very first of what turned out to be "several" helicopter incidents over my career, that first one was nearly my last one.  

We had been scheduled to fly a "recon" mission in a Bell OH-58 helicopter.  I wasn't even scheduled to fly, but at the last minute, the guy who was supposed lead the mission was late and the CO pointed at me, knowing I knew how to read a map and that I knew where we were supposed to go and the pilot did not.   So I jumped in the co-pilot's seat and two other guys jumped in back to snap some photos and away we went.

 The weather that day was lousy.  Light rain, a low ceiling with heavy cloud cover, but still enough visibility for the pilot to maintain VFR flight.   After a ten minute flight out to the target area, we made several low passes over the area we were supposed to operate in later that week.   Steep mountains, big rocks, a swamp, trees, but really no place you could land or crashland a helicopter.   When the guys in back said they had enough photos, we climbed back up to about 1800 feet, just under the overcast, and headed back to our landing zone.  During the flight, the pilot and I had been talking about flying.  I told him what flying floatplanes in the bush in Maine was like  and he explained a little about flying a helicopter.

"Wanna try it," he asked?   "Sure...",  I replied. Who wouldn't?  I had hardly had my hands on the stick and the collective and my feet on the rudder pedals more than ten seconds when I heard this  BEEP BEEP BEEP in my headset and noticed that the Master Caution Light had illuminated on the cockpit panel.   

"I have the aircraft!"  the pilot said forcefully as I quickly removed my hands and feet from the controls.

The pilot pushed the collective to the floor and pushed the nose over.  It occurred to me that we were going to ... CRASH!  I turned to the two guys in back and yelled... "Brace, we are going to crash!"   I can stil see the color drain from their faces in my mind's eye.  And then I turned back to face the impact.   The thing I remember most was how it all seemed to be happening in s-l-o-w motion even though the whole thing probably took less than 30 seconds.   As we were coming down, I suddenly a sense of peace and acceptance wash over me.   I was without fear as we all looked death in the face.    It was... calming.

But that day was not the day on our life's calendar to meet St. Peter.  Our pilot had had two combat tours in Vietnam and this was not his first autorotation... though he later admitted he was a little out of practice...

At first there seemed no place to land, but he had headed for two farmer's fields separated by a treeline.  As we rapidly descended toward the ground, he noticed a very large boulder on our intended landing spot.  So, at the last minute, we veered toward the second field and just barely cleared the treeline.  This caused the pilot's concentration and depth perception to be thrown off just a little and we flared a little too high... at about 20 feet altitude... and dropped in with some forward motion.  We hit on the rear of the skids and rolled forward...  I watched... again, in s-l-o-w motion... as the still rapidly rotating rotor blades came down ...down ...down... I knew that if it hit the ground we would likely be ripped apart... so in one motion I clicked the emergency release on the door and it fell off.  I then flipped the release on my seat belt harness... I was going to jump out... but then I noticed the rotor still furiously spinning out of the corner of my eye and hesitated... I decided I'd rather take my chances inside the helicopter than possibly be cut in half when the rotors broke apart...

But like a giant green flying grasshopper...when the rotors were only about two feet from impacting the ground, we rolled forward on the skids and jumped forward about ten feet... hit again... rolled back and forth a couple of times on the skids... and we were... down.

I looked at the pilot, he looked at me.  "You OK?" he asked... "You OK?"  I replied... ...and then we both laughed that laugh of two guys who had just dodged a very big bullet.

I forget about the two guys in back... but they were probably both sitting in wet spots.

I later heard the cause had been either fuel contamination or a vapor lock in the fuel lines.

But... it was on that day... many,  many years ago, that I learned about acceptance,  grace, and peace ...and a lack of fear in the face of a helpless situation...     I've  had occasion to apply those lesson several times more in my military career.   You learn to accept situations you cannot change.   

I also learned that every day after that first incident had been a gift.

And now...  I am faced with a new challenge I can resist, but I cannot change it's inevitable outcome.   So why waste the energy in trying change something I cannot?   We cannot stop the winds of this disease washing over us, but perhaps we can use our sails to adjust it's effect in some way.

Time will tell...

Mindy's First Post

Ed and I have only been married for 4 years. He was my knight in shining armor after a rough divorce.

Ed is sweet, smart, kind, caring… a big “teddy bear”. Steady Eddie, a man with true integrity.  I tell people it’s like being married to Santa Clause. A twinkle in his eye, a belly filled with jelly, a deep
ho, ho, ho laugh.

He fell in love with me and my adult children. They love him too. A perfect blended family. A new grandchild, our first, added to our delight cementing our family together.

Then all of the sudden it seemed, last Christmas, Ed pulled back….withdrew….hid out in his office all the time. I got angry….hurt, felt lonely and abandoned. Then the mood swings, tiredness, headaches.

Steady Eddie was suddenly quick to anger. He started asking repetitive questions, getting confused, and at times saying odd things.
I lost my mother to dementia and all the alarm buttons went off…and he told you the rest…tests, doctors...

I cry.  I’m scared….can I do this?  I saw my Mom wither away to nothing…can I watch this vibrant man do the same?  I can only trust the Lord knows what he’s doing and be thankful for my kids and our
strong family unit, which includes two sisters that are there for us. We created this blog, in part, therapeutic, in part, hoping by sharing with other people it may mean something. We need to make this journey count!

Tuesday, October 18, 2011

Ed's Theme Song... Against The Wind

It seems like yesterday 
But it was long ago 
Janey was lovely she was the queen of my nights 
There in the darkness with the radio playing low 
And the secrets that we shared 
The mountains that we moved 
Caught like a wildfire out of control 
'Til there was nothing left to burn and nothing left to prove 
And I remember what she said to me 
How she swore that it never would end 
I remember how she held me oh so tight 
Wish I didn't know now what I didn't know then

Against the wind
We were runnin' against the wind 
We were young and strong, we were runnin' 
Against the wind 

The years rolled slowly past 
And I found myself alone 
Surrounded by strangers I thought were my friends 
I found myself further and further from my home 
And I guess I lost my way 
There were oh so many roads 
I was living to run and running to live 
Never worryied about paying or even how much I owed 
Moving eight miles a minute for months at a time 
Breaking all of the rules that would bend 
I began to find myself searching 
Searching for shelter again and again 

Against the wind 
A little something against the wind 
I found myself seeking shelter sgainst the wind 

Well those drifter's days are past me now 
I've got so much more to think about 
Deadlines and commitments 
What to leave in, what to leave out 

Against the wind 
I'm still runnin' against the wind 
I'm older now but still runnin' against the wind 
Well I'm older now and still runnin' 
Against the wind 
Against the wind 
Against the wind 

Still runnin' 
I'm still runnin' against the wind 
I'm still runnin' 
I'm still runnin' against the wind 
Still runnin' 
Runnin' against the wind 
Runnin' against the wind 
See the young man run 
Watch the young man run 
Watch the young man runnin' 
He'll be runnin' against the wind 
Let the cowboys ride 
Let the cowboys ride 
They'll be ridin' against the wind 
Against the wind ...

Monday, October 17, 2011

Long Day's Journey Into Night

- Ed First Post... some background... apologies for this first lengthy post...

They say the start of any long journey begins with that first step...  what they don't always tell you is how far down that first step might be.  Mine became clearer on Monday 3 October 2011, in the office of my neurologist, Dr.Stephen Flitman, in downtown Phoenix.

My wife is very intuitive and she had come to notice some changes in my personality and behavior beginning around last Christmas.  I was forgetting some things (who doesn't at this age?), had some moodiness, and some other indicators.   As I was only 60, our family doctor did not suspect anything too serious, but my wife was insistent so he agreed to schedule me with Dr. Flitman.

During our first visit some weeks before, Dr. Flitman had taken me through some of the routine verbal tests.  Counting back by 7s from 100... - I missed a few -  but my backwards math has always been about as good as my forward math... not very good... which is why I was more of a beer and bullsh*t major.  I scored pretty well on some of the other routine questions... the date, the street crossroads, my birthday... but when he asked me the name of the current Arizona governor... and while I could clearly see her face and name the previous 3 or 4 governors, I could not immediately spit her name out.  When it finally came to me five minutes later and I blurted it out, he just smiled... and I knew I had failed that one.  Ummmmn... maybe there is a problem here after all...  after a couple of more miscues on my part, it was clear that further testing might be warranted.   So... I was scheduled for a MRI and some other tests at St. Joesph's.

Now...if you are ever scheduled for an MRI, save time and take the Twilight Tour... I did not THINK I was claustrophobic until I got into that machine for the first time.  But I am a big guy and it is a tight fit to begin with... I got through the first two 14 minute tests OK, but when the tech asked me if I was a "go" for the next two 20 minute tests, I knew I could not do it.  The noise, the bright lights, the tightness... were just too much for me and I needed to get OUT... NOW...  I found myself hyperventilating a few minutes later.  Once out, the tech himself admitted he could not do one without some sedation as did several of my other friends to whom I described the experience.  Anyway, a week or two later and I was back for a second attempt... this time, the drugs worked, though I was conscious the whole time.  I also recommend covering your face with a wet or dry washcloth to help with the bright light.  They'll give you earplugs for the loud noise.  The second time I just put my mind on a beach somewhere and pretended there was just continuous loud construction in the background.    No problem...  so I thought.

When I had not heard from Dr. Flitman's office for a week or two, I figured I was home free.  I was... wrong.  I was quite surprised when he told us on our follow up visit that he could say with a 90% certainty that I had Early On Set AD.  He called me around to his computer where he showed me the brain contrasts between a healthy patient and then mine.   The best way I could describe it was... if you were looking down at a horizontal cross section of the brain, a normal brain has little narrow canals running through it.  A person with AD has canals that are wider than normal.   The wider they are, the more the disease has progressed...

If there was any good news, it was in two parts.  First, I had been diagnosed at an early stage.  Second, of the three types of causal genes... I had the least aggressive of the three...   some good news huh?   There's a little more to this first chapter of our jouney's beginning first steps, but as I have been a bit long here, I'll stop here and let Mindy share her first emotions before I go on with mine...