Saturday, June 21, 2014

Our Medical Assault On Alzheimer's

What do we do first?
Well, he needs to go to our primary care doctor for starters.
Doesn't sound that complicated, but I managed 
to make it so.

I had not mentioned my suspicions to Jack, and
he was plenty sharp enough to pick up on
any special appointments or secretive
exchanges with the doctor at this point.
I desperately did not want him to think I was
going "behind his back." 
It's strange to me how I agonized over this because... 


It ended up being no big deal.
We always had our check-ups on the same day, 
one after the other.
Although my suspicions began in 2000,
our appoinments were not until March 29, 2001.
I don't know how, but I waited.  
I think I asked the doctor if I could be first when the
day finally came.
That way I could tell him of my suspicions about Jack.


He gave Jack the "I'm going to tell you three items
and ask you later what they are" test.
Jack remembered two out of three.
Then he had Jack count backward from 100 by 7's.
The doctor finally had to have him quit--
He couldn't keep up with Jack!


Nevertheless, he either felt the evidence strong enough
or took my word that there was a problem.
He sent us to a neurologist.

(All my efforts for secrecy seemed
 to have been unnecessary.
I don't recall his ever questioning me
about any of the initial appointments.)


The neurologist did four things. 
#1
He sent us to Harris Hospital for psychometric testing.
This was heart breaking.
Jack couldn't do very well on the quite long test, 
and he was very aware that he wasn't.
It was humiliating for him. 
I wish we hadn't done it.  I already knew.

#2
He ordered a blood test to determine if Jack carried
an ApoE4 gene, an indicator of AD possibility.

 #3
He ordered an MRI to determine if Jack had
suffered a stroke.

#4
At some point, he prescribed Aricept.


The results of the psychometric testing were dismal.
The MRI showed no stroke.
But...

About a month after the blood work, the nurse from the neurologist's office called to tell me:
"The results were 'positive'."
And I replied, "Positive for what?"
"Alzheimer's."
I was extremely upset.
I knew that AD can be determined
with certainty only at autopsy.
This made me angry but also further
rocked my world.


As it turned out, she should have said,
"Positive for ApoE4 genes."
Jack carried not one but two--
one from his mother, one from his father.
His mother had died at age 76 from
complications of AD.
His father had died of cancer when Jack was 12,
but we learned that AD was rampant in his family.


This was only the beginning of my
dissatisfaction with our neurologist.
In all subsequent visits, he did absolutely nothing
but ask me how Jack was doing.
N.o.t.h.i.n.g.
When Namenda first began appearing in the news,
Susan and I were both on it.
The doctor?  He had never heard of it!
I broke the news to him!
I wrote a letter for him to sign prescribing Namenda and
was able to order it from Austria before it became
available in the U.S.


This dissatisfaction led me to ask a trusted doctor
in Dallas for a referral to a different neurologist.
He recommended a female doctor at UT Southwestern.
Remember when I told you about Bozo HERE?
Well, this referral definitely ended up
knocking Bozo (and me) flat.


She talked only to me as though Jack was not sitting
right there.
I'm not sure now whether he noticed or not,
but I certainly did.
She was the first to administer the old
"draw a clock" test.
When we returned for the test results, I did
not take him into her office with me.  I left him
sitting in the waiting room and told the doctor exactly why.
The test results were not good.
I'll never forget the pitiful clock drawn by 
neat, precise, perfectionist
Jack Stovall.
But after all this, she had no new ideas--no real help.
  We never returned.


 Instead, back to "Dr. Do Nothing."
At least he could write prescriptions.


I wanted to shout to these doctors:
"You just don't understand!
This is a very smart, honorable, refined gentleman who deserves to be treated with respect
even if he does have this insidious disease!
He's very important to a lot of people!
His is a unique case!"

But then...they all are.








Thursday, June 19, 2014

What Happened Next...

After the first indications of AD in Jack, as described
things progressed very slowly for a long time.
 
 
Jay worked with Jack every day.
I had immediately called and asked him if he had 
noticed his dad being forgetful.
He said, "Oh, yes!"
 
 
I stopped by to talk to Susan on July 10, 2000.
She had not suspected.
 
 
Jay told Terri.  Susan told Rob.
That is the extent of those who knew.
Five people.  And that's the way we kept it.
 
 
But...
As usual, this "Cruisin' Mimi" had plans in the works.
Three days after talking to Susan, Jack and I 
took off on a cruise as scheduled to the Baltic.
It was July 13, 2000, my birthday. 


The trip began with a couple of days in London.
This was the scariest part, because we
had had a guide on our one previous visit.
This time I had planned for us to be on our own.
Additionally, we stayed at a hotel by the airport!
Why?  I have no idea.
Here we are riding the Gatwick Express!
We are the only two in this car!
(I set the camera to do an automatic shot.)
 

We are riding in at night to have fish and chips!
If you think this is nutty, just wait!
It gets worse.
 
Jack loved watches.  He had quite a collection.
I decided we needed to "tube it" to Greenwich,
where the mean time is set.
(This was after having to take the Gatwick Express 
in to London!)
It was a looonnng way.
We had to change trains--I don't remember
how many times--too many!--but we made it!
 
 
Here is Jack standing with one foot in the eastern
and one foot in the western hemisphere.
 

The line is the prime meridian, where 0 degrees
longitude is set.
 
 
Oh, dear.  I just remembered.  
We went to the Tower of London, too.
I think I dragged him to Greenwich after the Tower!
(After the train!)
 
 
Then...time to relax and let someone else
do the navigating!
I was relieved, and I'm sure Jack probably was!
 
 
Here we are on board the Splendour of the Seas.
 
 
I have always loved this picture.
 
 
And this is one of my favorites of all time,
taken by a passing stranger.



Here we are in front of The Admiralty in
St. Petersburg, Russia.

 
and in The Hermitage
(We were looking for Picassos!)



Want to see the best part of the trip?
 

 
Our welcome home!!! 


Several of you indicated that you were interested
in the way the disease progressed.
I will be pleased to share some more installments
 in the next few weeks.
 
 
If you are expecting, however, that our cruising 
came to an end,
let it be known that we took 14 (yes, fourteen)
more after the diagnosis!
 
 
"An Alzheimer's diagnosis is not the time to
grieve and miss out on the remaining years of life."
 
from Chicken Soup for the Soul
Living with Alzheimer's & Other Dementias
(This book was a gift to me from my cousin,
Sarah Lynn Festger.) 



 

 
 



 
 
 
 
 
 

Wednesday, June 11, 2014

My Most FAQ Regarding Alzheimer's

  "What made you suspect it might be Alzheimer's?"
This is #1 by a landslide.


The answer to this question may not be of real help
to anyone else.  The reason?
Because every case is unique.
The truest phrase I've heard is:
"If you've seen one case of Alzheimer's Disease,
you've seen...
one case of Alzheimer's Disease."


With Jack Stovall, there was little question.
In his world there was no shade of grey.
There was black, and there was white.


He was able to have details of multiple jobs so
ingrained in his mind that he could tell
you the exact financial status of each.


Jack never forgot anything, especially about
his beloved company.
His organizational skills were legendary.
It was not necessary for me to call him to remind
him of appointments.


Until...
June 29, 2000.


Our friends Skip and Becky Leffler had asked
us to do something really exciting!
Charlton Heston was coming to town on
behalf of the NRA, and they
invited us to share their table!
We were going to get to see "Moses" at the
Arlington Convention Center!


Even cool and collected Jack was his version of excited
 about this prospect.
He decided he would get a haircut for the occasion.
His appointment was in the afternoon.
As he left the barber shop he called me and said
that he was headed back to the office.
I said, "Do you really think you have time
to do that?"
And he said...
"Why wouldn't I?"
He had totally forgotten the reason for the hair cut. 
 That just didn't happen.
I was stunned.


A couple of weeks before there had been an incident
at church.
I wrote a check for something special
which we were going to give to Lonnie Diggs,
the church financial manager at the time.
We always saw Lonnie on Sunday morning,
as we worked the visitor's center.
 Jack put the check in his shirt pocket.
I noticed it missing later and asked him
if he had delivered the check, to which he replied,
 "What check?"
Lonnie didn't get it, and it was never
seen again.
 This had continued to puzzle me, but it became
 much more significant in my mind
after the C. Heston event.


I know these two incidents might easily be
explained away--if they hadn't happened to
Jack Stovall.


Subsequently there were many more occurrences--
becoming more and more obvious.
But this is where it all began...
One case of Alzheimer's Disease.

 

*Stay tuned
for what happened right after this!
(The picture is a hint!) 




 






Monday, June 9, 2014

"A Chapter In My Life Is Through"

After having bad dreams and
hearing wild rain storms last night,
I awoke with the title song lyrics running round my mind.
I had to sing it to myself to remember
from whence they cometh!

It is from Michael W. Smith's iconic
Friends are Friends Forever.

Packing up the dreams God planted
In the fertile soil of you
I can't believe the hopes He's granted
Means a chapter in your life is through...

Now this is speaking of Susannah's life.
I'm not trying to make this all about me.
But...a chapter in my life definitely ended, too.
A chapter for which I could not be more grateful.
Thirteen plus years of school programs, CATS,
soccer games, volleyball games, 
cheerleading opportunities,
talent shows, dance recitals, church musicals,
voice recitals, dinner theatres,
guitar recitals and gigs,
Chamber, Chorale, and show choir concerts
every imaginable place, including New York City, 
Miss Cinderella, style shows,
and the glorious Martin spring musicals.

Approximately 90% of my social life
revolved around the above events!
In all thirteen plus years I missed only one
significant event that I remember--
Into the Woods, the spring musical in 2013,
in which Susannah was a beautiful Cinderella.
I was in Israel during the entire run.
(But I have it on DVD!)

But we'll keep you close as always
It won't even seem you're gone
(after all--Waco is only 90 miles away!)
'Cause our hearts in big and small ways
Will keep the love that keeps us strong.

This song is actually very appropriate.
Susannah (and Madeline) are my friends
as well as my granddaughters.  And...

Friends are friends forever
If the Lord's the Lord of them!

He is the Lord of all three of us.
      
   

Thursday, June 5, 2014

MY DOG RULES (Illustrated by Charleigh-Girl Stovall)


RULE #1

No dogs are allowed in the house period.

Prior to 2005 this was our rule, and these were our pets.

 That was our dog, Woody, and our cat, Whiskerless.
They didn't mess up anything.
They didn't have to be fed.
They didn't need a sitter when we left.

BUT...

On August 20, 2005, our policy changed.

RULE #2

A dog is going to be allowed in our house,
but ONLY on the tile and wood floors.

We surprised shocked Madeline and Susannah!
 (Along with everyone else in the world!)





RULE #3


Okay.  It looks like the dog is going to be on
all floors, but she must stay off the furniture.


(and please leave the Christmas display alone!)

RULE #4

If the dog gets on furniture, it must be the leather
stuff to which she will do less harm.

(That's my recliner, young lady!)

RULE #5

Well, thanks to you, Ken Smith, she now feels
welcome on the fabric sofa, BUT
she absolutely must not get on our bed!


RULE #6

Oh, all right.  She can get on the bed for a
photo shoot, but that's it.



RULE #7


The dog can get on the bed when it's not made up.

(But that look is a little smug!)

RULE #8

Fine.  She may sleep on the bed but not
under the covers.

(I will, however, scratch her chin just a bit
so she can get to sleep.)
 

RULE #9

The dog may get under the covers ONLY by 
invitation.

 

Stop it, Charleigh-Girl.
That's by MY invitation to YOU,
not YOUR invitation to ME!

RULE #10


In order to save face (mine) rules will be on an
"as needed" basis.
I will continue to try to convince the dog
that I am the boss.
This fact seems to have eluded her so far.

RULE #11

There is a part of the soul that remains 
unawakened
if one has not known the love of an animal.
Period.