Tuesday, April 1, 2014

April Fools ... News From The Funny Farm....





I note that it has been nearly three months since I last posted.  Here it is, three months done on 2014 already. I do know that time does fly by when you are older.   Although I write a private personal flog six days a week for some of my friends, I do not post to this site as often.  As my diagnosis seems unclear, I have less to say I suppose  The good news is that the Army approved the payment for a new PET scan to be done on 25 April to see if I have any signs of FTD, or Frontotemporal Dementia.  One of my doctors used to say...   "Alzheimer's is dementia, but not all dementia is Alzheimer's."   So maybe after that test, we may know more about what kind of fool I am after all...

Meanwhile... along those lines, I follow the blogs of several others like me on this foolish journey to wherever we all are headed.   One of the blogs I like best is written by a retired physician, David Hilfiker.  Like me, he does not have Alzheimer's, but his symptoms are certainly a lot more troubling than mine.  See the link to his blog below.

David Hilfiker:  A Memoir of an Uncertain Mind

"Watching The Lights Go Out"
  
Despite some of his odd symptoms, he still writes very well.   If you are at all interested in this topic, it might be worthwhile to go back and read his posts from the beginning if you have the time.  Also valuable are the comments and responses many of his posts generate. Here's one of his recent ones...

And like him... I deal with with life's afflictions too...  what else are you going to do?

Monday, March 17, 2014 by David Hilfker

Better?

Washington DC

Ever since I announced that I don’t have Alzheimer’s but some other form of cognitive decline, I’ve had friends and acquaintances say something like: “I heard the good news!  I’m so happy that you’re better.”  In one way, they’re right, of course.  Having a stable cognitive decline of uncertain cause is better than having inevitably progressive Alzheimer’s disease.  If “better” means “back to normal,” however, then I’m not better.  I have by no means regained my cognitive losses. 

I notice my impairment in three areas: difficulty in finding the right word, forgetfulness, and occasional confusion.  The word-finding problem probably annoys me the most.  I was an intellectual.  I still do some teaching.  For me, communicating has always meant finding the precise word to express myself.  If I want to tell you I’m feeling “frustrated,” synonyms won’t do it.  I don’t mean I’m “irritated,” or “upset” or “disturbed.”  I mean I’m frustrated.

Forgetfulness: I can’t count on my memory anymore.
  •  Have we met before?  It’s my first question on meeting a new person in church.  I just can’t remember.  So I ask.
  • What did we decide at the last meeting?  I have no idea.  If I hadn’t written it down or reviewed it before today’s meeting, it’s disappeared.
  • What did I agree to do before Sunday?  I don’t remember agreeing to do anything.  Everything has to be written down and reviewed.
  • Without my calendar I have no idea what my week looks like.
It’s the intermittent confusion, however, that’s the most bothersome.
  • I was downtown earlier this week and got off the bus to walk the four blocks to my doctors office.  I wasn’t lost; I knew exactly where I was.  I knew where the office was.  DC is laid out in a grid, so there’s no confusion about how the streets go.  I ordinarily have a good sense of direction.  This time, however, I got completely turned around and got to the office only by guessing.
  • Several days ago I was helping a friend.  She was working 21 hours a week and getting paid $900 a month.  What was her hourly wage?  This is not college calculus.  She’s working three hours a day for thirty days in the month, which is $10 an hour.  But I got into multiplying 21 hours by four weeks (84 hours per four weeks) and then trying to estimate the fraction of the fifth week in every month; soon I had to get my pencil out and even then I got confused.
None of these is a big deal.  My impairment isn’t getting worse.  I’m enjoying myself as much as I ever have.

But I don’t want people to think that I’m cured.  I can’t quite explain that, but it has something to do with wanting an honest relationship between us.  Whatever.  In a longer conversation with anyone who’s actually interested, of course, it’s not difficult to describe the situation more fully.  What bothers me is how to respond to someone in the elevator (see here and here) or when meeting each other at the checkout counter.  I think the answer is to suck it up.

It occurs to me that my situation is not that different from many older people with arthritis in their knees, bladder problems, generalized weakness, or widespread aches and pains.  Most of the time, when I ask those older folks how they are, I don’t really want to know!  I’m not interested in hearing their “organ recital.”  I want to express my happiness with their recent successful surgery or hospital discharge or express my concern for them.  What I want from them is a smile and “Oh, I’m doing as well as can be expected.” Or “It’s going okay.”  “Or, yes, I’m happy the surgery went as well as it did.”  If they’re smart, those aching older people will make very sure I want to know before they tell me the truth.

It’s no different for me.  Usually people want to hear I’m okay, that my life is going well, that I’m relieved about not having Alzheimer’s.  They would prefer, at least for the time being, not to enter into my pain.  I can deal with it.  Mostly.

Sunday, January 19, 2014

Still...


...Not Crazy Yet...  A Good News, Bad News Story

...so... I finally completed my four hour+ neuropsychological evaluation a week or so ago.

The good news is... I do not have Alzheimer's... for sure.

...but the bad news is... I may have some indicators of...

Frontotemporal dementia
...further testing is warranted... such as possibly a  pet scan... before that can be ruled out...  and ... I COULD actually have that disease...or maybe some other similar form of it...   
====================================
 ...the neuropsych test was interesting...not one you could study for really... I surprised even myself with my memory and especially with my already weak math skills.   In fact, the docs said I tested out better than most for my age and educational level on most measures... at least when it came to comparative measurements for an Azheimer's diganosis...  my memory recall was just fine.
 
But... on  some, though not all, of the problem solving tests... one in particular was quite difficult for me, I did not do quite so well.   One in fact, seemed impossible... I never did see the logic of the relationships of the colored stars, bars and cubes on the cards I was supposed to recognize...   it was a puzzle where the tester said you had to figure out the rules yourself...   so, by my rules, I made logical relationship choices, but apparently those were not the RIGHT rules...   of the 40 or so card to card comparisons, I got maybe 5 right and those were by pure guesses because I still had no idea what her rules were... even when that test was over...
 
I guess I have been living in my own world all the time...after all...
======================================================
Thing is, reading over some of the symptoms from the website above... I DO exhibit some of the symptoms described...  

...sometimes I will just blurt out whatever I am thinking... sometimes inappropriate to the audience or the situation... but "what the fuck eh?"   This was confirmed with one of the tests where the exercise is that you have to recall as many words as you can in a minute that start with a particular letter...with no names allowed... like "P" for example...  perfume, perfect, perform, etc.   Then the evaluator gave me the letter "F" and of course you know the first word that popped into my mind...   "Good..." she smiled...  "...go on."

... I can lack empathy...(my military training  always taught me  compartmentalize everything  to deal  with things ... so for me that is normal.)   And I have never been much of a touchy/feely type...   go figure.

...I can sometimes unexpectantly just begin to cry... this happened when the Newtown shootings occurred, or sometimes a movie or a sad memory may trigger this unusual response from this manly man... something that never would have occurred five years ago...  however in speaking with several of my friends of similar, they too admitted to this...  It may be more related to age and reflection... or depression... but the AZ tests showed that I am not depressed...

...  I spent alot of time in my back office/mancave reading, watching the news and English mysteries on the Tv and surfing the Internet.  Some, as Mindy does, may

...I spend a lot of time in my back office and mancave... reading the news,  watching English mystery shows, catching up on TIVO programs, and surfing the Internet.   Some may interpret this as "exessive isolation"  but my logic is different.   I am home alone all day... and apart from walking the dog and writing the flog, what else am I going to do?   I was a bachelor for 18 years... and I have ALWAYS enjoyed the isolation and company of my own self.   With the Internet and plenty of time on my hands, I can read 5-6 papers a day... and also respond to all the email I get as well.   Then ...when Mindy does get home... we spend some time together before I retreat again... she needs alone time to decompress...

...sometimes I think of using one word or verb and something entirely different will come out...like the other day when I meant to say "good-bye" to Mindy and "good night" came out...

...  most times when I write, I leave out words...even phrases sometimes... I have learned that I have to go back and edit most flog entrys and emails and even then sometimes I miss the wording or lack thereof... is that dementia or just old age?   I guess I would be the last to know...  but so far I have no problems with speech formulation or organizing my brain thoughts as some with FTD do...
=======================
...on the other hand...  I exhibit few of the other symptoms as described in the link...at least so far...
So...more tests I suppose...
I found this link informative as well...
also
So... it this good or bad?   It depends...  could be worse... depends on your perspective...
... some links about this disease say that... if you do in fact have it,  decline can be even faster than Alzheimer's...  then again other links say that everyone one is different... survival can be two to twenty years...with an average of 6-7 years... so   go figure...
Considering that I am already going on nearly three years of this "dementia" maybe I already am living on borrowed time?
=====================================
My personal view is...   it is whatever it is...  Do I  have terminal  cancer like the 48 year old guy with two kids across the street?   No...
 
Was I killed or badly injured in the crazy traffic going to and from the doc's office today? No, but I could have been...
 
Is my personal burden any better or worse any better than the parent who lost a child at Newtown?                No... I have led a much longer life...
===========================
So, we all die... few of us have the choice of when or how that might be one day...
As Forest Gump said...  "Life is like a box of chocolates, ... you never know what you are going to get..."
... what he failed to add was...   "sometimes a lot of them taste like shit... then you die...
Personally I have never been a fan of chocolates, but most of mine have been cherry filled...  you can't beat that...
So... I come back to a musical thought I used recently from Paul Simon only this time sung by James Taylor...  listen carefully at the end.

"...I'll never worry...oh, why should I worry?   ... it's all gonna fade away..."




Wednesday, October 23, 2013

Sinner's Prayer

Several of you have asked me in separate emails why I have not posted in the last few months...  the answer is... no, I am not any more crazy than before (though I guess I would be the last to know...), but more that I have not much to say...  my old neurologist tossed all his former military Tricare patients off his patient list. (Thank you OBAMACARE... remember how THE CHOSEN ONE said if you liked your doctor, you could keep him?  ...riiight...no matter, I wasn't going to vote for the Democrats anyway and neither should you).  My wife then went looking for a new doc... with one snafu after another my records were never transferred before the first appointment with the new doc so he had little to go on... so he had his assistant administer a new battery of 30 cognitive questions where I went 30 for 30... and that caused a little scepticism on the part of the new doc.   So he has scheduled me for an all day battery of cognitive testing on the 6th of January.   We will see... check back late in January  for my results...

Meanwhile life goes on day to day, pretty much routine for me... read the on-line newspapers in the morning, write my personal flog with daily observations that is sent in turn to a few dozen friends... go for a walk or bike ride... read some in the whatever books I have going... finish up a few household chores, make dinner, watch some news and English mysteries on the telly... then bed... and wake up... repeat... pretty dull huh?

That all got me to thinking about an old favorite song of mine...







by Slaid Cleaves / Rod Picott . . . Happy Valley Music, BMI/Welding Rod Music, BMI
from the CDs Wishbones and Sorrow & Smoke: Live at the Horseshoe Lounge
I’m not living like I should
I want to be a better man
A sinners prayer upon my lips
A broken promise in my hands
I know that there will come a day
A heavy price I’ll have to pay
I keep pretending to be good
But I’m not living like I should
I’m not living like I should
I’ve let the mystery slip away
The night goes by in dreamless sleep
I’m chasing foolish things all day
I walk this town just like a ghost
I don’t know what I miss the most
I’d believe in something if I could
I’m not living like I should
When people see me on the street
They think they see an honest man
They don’t know what lies beneath
But some of them would understand
They know the soul and what it hides
You sometimes see it in their eyes
A guilty man where a child once stood
I’m not living like I should
I’m not living like I should
The wolves howl, the robin sings
The world keeps spinning round and round
I wait for mercy’s angel wings
Another day another year
Death keeps whispering in my ear
I say a prayer, I knock on wood
I’m not living like I should
I’m not living like I should
I used to be a better man
A sinners prayer upon my lips
A broken promise in my hands
A squandered gift,a wasted day
Time chases life away
I just wanted to be good
But I’m not living like I should

Friday, May 3, 2013

Hallelujah

Reflecting further on the events in Boston, and trying to gather some meaning from it all in the narrowing corridors of my own brain, for some odd reason... maybe for fate or for faith or for all those families ... Leonard Cohen's song "Hallelujah", about the hardships of life, of loss, and of love, ... especially the version as sung by KD Lang, kept echoing around like muffled marbles in the sound chamber of my mind...  I share it here with you all... and whilst I keep my own interpretation of the song, you can ponder yours... 






LEONARD COHEN LYRICS

"Hallelujah"
I've heard there was a secret chord
That David played, and it pleased the Lord
But you don't really care for music, do you?
It goes like this
The fourth, the fifth
The minor fall, the major lift
The baffled king composing Hallelujah

Hallelujah, Hallelujah
Hallelujah, Hallelujah

Your faith was strong but you needed proof
You saw her bathing on the roof
Her beauty in the moonlight overthrew you
She tied you to a kitchen chair
She broke your throne, and she cut your hair
And from your lips she drew the Hallelujah

Hallelujah, Hallelujah
Hallelujah, Hallelujah

Baby I have been here before
I know this room, I've walked this floor
I used to live alone before I knew you.
I've seen your flag on the marble arch
Love is not a victory march
It's a cold and it's a broken Hallelujah

Hallelujah, Hallelujah
Hallelujah, Hallelujah

There was a time when you let me know
What's really going on below
But now you never show it to me, do you?
And remember when I moved in you
The holy dove was moving too
And every breath we drew was Hallelujah

Hallelujah, Hallelujah
Hallelujah, Hallelujah

Maybe there’s a God above
But all I’ve ever learned from love
Was how to shoot at someone who outdrew you
It’s not a cry you can hear at night
It’s not somebody who has seen the light
It’s a cold and it’s a broken Hallelujah

Hallelujah, Hallelujah
Hallelujah, Hallelujah

You say I took the name in vain
I don't even know the name
But if I did, well, really, what's it to you?
There's a blaze of light in every word
It doesn't matter which you heard
The holy or the broken Hallelujah

Hallelujah, Hallelujah
Hallelujah, Hallelujah

I did my best, it wasn't much
I couldn't feel, so I tried to touch
I've told the truth, I didn't come to fool you
And even though it all went wrong
I'll stand before the Lord of Song
With nothing on my tongue but Hallelujah

Hallelujah, Hallelujah
Hallelujah, Hallelujah
Hallelujah, Hallelujah
Hallelujah, Hallelujah
Hallelujah, Hallelujah
Hallelujah, Hallelujah
Hallelujah, Hallelujah
Hallelujah, Hallelujah
Hallelujah

Friday, April 26, 2013

Boston...

I lived and worked in and around Boston for nearly ten years.  I started my undergraduate education at Northeastern University and finished my Master's Degree at Boston University.   I know the city very well.  I first walked down Bolyston Street when I was just 18.  I spent years enjoying the Boston Pops and the Boston Symphony from the first balcony at Symphony Hall.  I enjoyed dozens of Red Soxs games at Fenway.  I remain a loyal, if distant Red Soxs fan.   I KNOW Boston... and its people.

And so... as the dust settles and the new concrete has been repoured over the bloodstained sidewalks, my heart and my prayers are with its people as they try and move on in life.  The sun will rise tomorrow...

 
 


Saturday, April 6, 2013

The Living Room...

See?  This is exactly why I spend so much time in my Man Cave and back office...


Friday, January 25, 2013

Elliot Chavez & Friends January 2013

Nothing like a grandchild to warm the heart...




"Whenever You Remember"

as sung by Carrie Underwood


When you look back on times we had
I hope you smile
And know that through the good and through the bad
I was on your side when nobody could hold us down
We claimed the brightest star
And we, we came so far
And no they won't forget

[Chorus]
Whenever you remember times gone by
Remember how we held our heads so high
When all this world was there for us
And we believed that we could touch the sky
Whenever you remember, I'll be there
Remember how we reached that dream together
Whenever you remember

When you think back on all we've done
I hope you're proud
When you look back and see how far we've come
It was our time to shine
And nobody could hold us down
They thought they'd see us fall
But we, we stood so tall
And no we won't forget

Whenever you remember times gone by
Remember how we held our heads so high
When all this world was there for us
And we believed that we could touch the sky
Whenever you remember, I'll be there
Remember how we reached that dream together
Whenever you remember

Yeah, Oh

We claimed the brightest star
And we, we came so far
You know that we, we showed them all
And no they won't forget

Yeah

Whenever you remember times gone by
Remember how we held our heads so high
When all this world was there for us
And we believed that we could touch the sky
Whenever you remember, I'll be there
Remember how we reached that dream together
Whenever you remember

Whenever you remember

Oh, whenever you remember