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Someone, you may know, with Younger-
Onset
Alzheimer
’
s
It was in 2011 and 2012
that
I began to notice. I can't give an exact date since, unlike
other ailments, there is no specifi c time to pinpoint; no doctor visit where you hear the
dreaded word ”cancer” or,
like me
, “heart murmur.” In those years, I would talk for hours
about work, running, or our travel plans, and I started to notice that, from time to time,
Catherine would ask me a question that seemed a bit odd. I just chalked it up to my big
mouth:
there I go running off at the mouth and all she was hearing was blah, blah, blah
.
But that was the fi rst clue.
I had taken a job that now required me to travel more than usual, so when we were
together, I felt compelled to bring her up to date on all that went on while we were apart.
She would listen, but more and more, she would ask questions to which I was sure she
knew the answer. As time progressed, I started to make comments to her about asking
the same question twice, though it was not all the time and it
was
never more than a few
times on a specifi c topic.
Just prior to my heart valve surgery, Catherine had gotten a new boss who was a very
shake-things-up type of guy. Her routine was her cornerstone, so stress at work went
way up. Over time, we became increasingly convinced that she might lose her job, since
her boss had now put her on probation and entered her into an employee improvement
program.
That is when we started actually going to doctors to try to fi gure out what was going on.
Some test were done to rule out other possibilities. After
a
cognitive test that lasted
several hours we were now starting to put the pieces to the puzzle together
.
W
hile
in the hospital
for my surgery
I really started to notice
something serious:
Catherine
was staying at a nearby hote
l, s
ometimes she would forget to call me when
she arrived
at the hotel
or
would
take several hours to get
back to
the h
ospital
.
Catherine can always recall things in the past way better than I, but it was what
happened yesterday or earlier that day that was
un
available for instant recall.
After my surgery, it slowly became a reality that Catherine was going to lose her job one
way or another, and we now had quite a bit of documentation concerning her condition.
The diagnosis given, since she was 53 at the time, was Younger-
Onset
Alzheimer’s.
I am sure that some of you are very surprised to learn this, which is why we think it
’
s so
important to share: in other words, there might be folks around you that you would never
know that they have this condition, especially in the early stages. Our hopes are that our
story will fi nd its way to someone that would fi nd this information useful since we
strongly believe that the sooner the better is the best policy.
Now I must make a disclaimer.
Neither of us are experts on this subject and I do not
plan on giving a lot of facts and fi gures
.
This is about what we feel to be true
:
The Importance of Social Engagement
As time goes on people with this condition have a tendency to withdraw socially but we
have found that it is very important to keep engaged. The social interaction helps to
make stronger connections
, and, in turn, stronger memories
. She might seem a bit
aloof, at fi rst,
but her smile is captivating, she knows no strangers, and
as a pet and
baby lover she is very easy to talk to. She loves telling others about our adventures
,
and I fi ll in the details when asked questions to which she may not know the answer
.
It’s
important to note, though, l
arge groups can be problematic since multiple conversation
can come in as simply white noise
.
The Importance of Early Detection
I cannot stress enough the importance of early detection. It is not very obvious at fi rst,
but if you suspect that someone close to you is struggling, get the testing done. As in
Catherine
’
s case, documentation can protect one from losing their job. Like many
others disabilities, there are benefi ts available, but fi rst you have to prove that such a
disability exists.
Treatment plans are based on getting them started as early as possible since there is
presently no cure. Such treatments don’t restore the damage already done but simpl
y
reduce the symptoms of Dementia
.
Presently Catherine is taking the following
:
Escitalopram, 20MG
Donepezil (more commonly known as Aricept),
1
0mg
I
n addition to pharmaceutical remedies,
t
here are all sorts of supplements on the market
to increase brain function and we have tried most of them
, including v
itamin B-12,
C,
D3
and
E
;
t
urmeric
;
r
esveratrol,
c
oconut
o
il,
p
eppermint
o
il,
and p
robiotics.
Some of you might have heard Catherine talk about a book called
The Grain Brain: The
Surprising Truth about Wheat, Carbs and Sugar—Your Brain’s Silent Killers.
The
premise
is
that there is a connection between your gut and your brain
, and that Wheat/
Gluten can cause an array of cognitive issues
.
It
is one of the reason
s that
she is
g
luten
-
free
and the book, in general, is a great read
.
The Importance of Having Fun
You read all the time about the benefi ts of red wine, but some studies even suggest a
shot of whiskey has benefi ts for the brain. Moderation is the best course of action,
though, as the more you drink the more you forget.
We are also fi rm believers in the benefi ts of travel, as we feel that exciting new
experiences go into the long term memory
un
affected by the condition. When an
individual sees the same thing everyday, these experience go into the short term
memory part of the brain and there it disappears. Their partner comes home and asks,
“What did you do today?” and the answer is, “I can
’
t remember.” The frustration begins
for both and the spiral downward is reinforced.
Don
’
t get me wrong, I am not suggesting that the answer is to Run All Over The World.
It can simply be a 5K in a nearby city and a visit to a monument or museum, but the
premise is that exercise coupled with a memorable experience is the key.
The Importance of Dedicated Support
Support might be the most diffi cult for me, as you have to be all in and realize that you
probably will be together 24/7. I am not the type of person that rushes to others for aid.
However, leaving the affected person home alone only accelerates the progression of
the disease, and in such cases, you won
’
t be there to see the signs until it is too late.
Additionally, the affected person may need assistance fi nancially, with work, and with
medication: I have seen there is a difference when Catherine misses a dose or two of
her medication, and this is when the partner needs to take an active role. Furthermore,
it is good to have someone to encourage social involvement when the affected person
wants to withdraw.
Much has been said about support groups, too. I have gone online several time
s
looking for support groups
,
but
frankly,
we have been too busy enjoying life
to take
advantage of them,
so here I will just say that it is very important to support love
d ones
with this condition.
Sleep and Exercise
The last two are critical, the fi rst one being exercise.
Catherine and I
try our best to get
some form of exercise everyday, as it stimulates the brain and the sense of
accomplishment goes along way when other things in life might not being going as
planned.
The second is sleep. With Younger-Onset Alzheimer’s, deposits of beta-amyloid protein
fragments (plaques) and tau protein strands (tangles) form in the brain, causing nerve
cell damage. While Catherine sleeps, however, some of these plaques and tangles are
removed, so I try my best to make sure she is able to get 8-9 hours of sleep a night.
Some of you may be asking
,
why are
you
Running All Over The World, given
Catherine
’
s condition?
Very simply, we have decided to see as much of the world as
long as we can and to stay fi t at the same time. Constantly changing environments
seems counter-intuitive, but it is our belief that all the exciting destinations and new
friends along the way help to form long term memories since since that part of the brain
is not affected.
And what about what I call “the blue days?” Make no mistake, there will be bad days
,
and I can
’
t say I have the perfect solution. Simply saying, “I love you,” will not always
work since, from the
point of view
of the affected loved one
, they are a burden. I
recorded a voice memo for Catherine to listen to
on those blue days,
and have our
song, You and Me, by the Dave Matthews Band playing in the background. Two lines in
this song really sets the tone for us
:
When we get to the ocean, going to take a boat, to
the end of the world, all the way to the end of the world. You me together, we can do
anything.
By now some of you may be wondering what to do with this information. First, talk
about it with people you may know and share this information with others that might
have the same situation at home. Give them my contact information listed below so we
can then network and share best practices. There is plenty of information available at
ALZ.org
as well. As I said before, the earlier the better since the present drugs simpl
y
reduce the symptoms of Dementia
.
For concerned family, friends and acquaintances, rest assured that nothing really has
changed. You can email me at
flyprkr@aol.com
or Catherine at
ceapopp@gmail.com
.
If you have a particular question I would be more than happy to answer. No tears
please, though prayers would be greatly appreciated. We ask that you don
’
t feel sorry
for us because, as you can see, we are really enjoying life. The usual hug would be
nice the next time we see each other, but try not to dwell on the situation. Our long term
plan is to keep going till a cure is found
,
and until then
,
we are going to see as much of
the world as we can.
