In 1983 President Ronald Reagan
declared November Alzheimer’s Awareness Month. This year as we mark
the 30th anniversary of this event, we have seen both hope
and despair on the road to finding effective treatment for a disease
that affects over five million Americans.
When President Reagan launched the
national campaign to bring an end to a debilitating, fatal disease,
he most likely never imagined that he would personally become a
victim of Alzheimer’s. I know that Jim and I never suspected that
this disease would cast its ugly net over our lives.
To be aware of Alzheimer’s, you need
to take more than a casual glance at the disease. It is not a joke
about forgetfulness that afflicts the elderly creating humorous
moments of cute memory lapses. Memory is only part of the disease and
often the first symptom that others notice.
Alzheimer’s is a brain disease. Beta
amyloid plaques build up between nerve cells creating sticky clumps
that damage the brain’s cells ability to communicate with each
other. As if this wasn’t enough problems, tau tangles interfere with the movement of nutrients from food molecules and other key
materials in the brain. Without these essential nutrients, brain
cells die.
All this brain chaos, follows a
predictable pattern in a brain diseased with Alzheimer’s. This
progression can take up to twenty years!
At first, the disease doesn’t seem
too bad. During the early stages the person with dementia has memory
problems and issues with thinking and planning. When Jim was in the
early stages, many people could not see the differences in him that I
could. These changes were subtle.
One weekend we went to Manhattan,
Kansas, to visit my son. We were going to drive downtown to get a
pizza. As we drove down the street, I spotted Pizza Hut. “Turn
left,” I told him.
“Which way?” he asked. That’s
when I realized that he couldn’t tell left from right—at least
not when it was spoken. I learned to point to the right or left.
Also, in the early stages, Jim
developed aphasia. He was a voracious reader, but began to buy
multiple copies of the same book because he couldn’t follow the
story line and didn’t remember reading it a few weeks earlier.
Eventually, Jim progressed to a
moderate or middle stage of the disease where his symptoms became
more pronounced. His appearance changed a little as he moved into
what I considered to be a more eccentric stage. He wore his denim
jacket year round and decorated it with pins and the Veterans Week
name tag from Branson. He wore dark sunglasses and used a cane. He
just looked different and began to act more childlike. Jim was docile
and agreeable—neither of which were normal traits for him. He
became more silent, his speech hesitant. Jim had been a talented
musician and could play any instrument with strings, and knew
hundreds of songs. Eventually, he could barely play and could remember only a few songs and often repeated the same line many times.
Reality set in for me during the middle
stage. Caregiving became a real challenge and I worried about Jim’s
safety. He began to wander and managed to get away from me, other
family and hired caregivers. We were fortunate and found him each
time, but only after heart-stopping moments.
In severe dementia, most of the brain
is seriously damaged and begins to shrink. Eventually, we placed Jim
in long-term care. At first he paced constantly, and seemed unaware
of most people around him. He stopped talking except for a few
words. He had to have assistance with the most basic functions of
life. Over time, he began to lose his balance and had to use a Merry
Walker, and later a wheelchair, in order to remain mobile. He went
through “failures to thrive” when he became gaunt and
hollow-eyed.
Jim had dementia for ten years and from
the beginning to the end, we did what we could to keep him physically
healthy and happy. Some days, it felt like a losing battle, but it
was always worth it.
So, during this Alzheimer’s Awareness
month, I hope that awareness is as close as you get to the disease. I
don’t believe anyone who hasn’t seen Alzheimer’s in a loved one
can truly understand the all consuming nature of the disease. I know
that I never had a clue about the reality of a disease that erodes
lives and steals a loved one away one memory, one skill at a time. It
is because of Jim that I understand the need to find effective
treatment and a cure for this incurable life-stealing disease.
Congress passed on a unanimous basis
the National Alzheimer’s Project Act which created the first
National Alzheimer’s Plan. The plan is a strategy to fight
Alzheimer’s and it is crucial that the proposed additional $100
million funding is included in fiscal year 2014 through the
appropriations process.
Missouri Senator Roy Blunt is one of
twenty-nine members of Congress appointed to a bipartisan budget
committee to report budgets by December 13. I urge my fellow
Missourians to ask Senator Blunt to remember Alzheimer’s and
support the National Plan to Address Alzheimer’s Disease.
Copyright (c) November 2013 by L.S.
Fisher
earlyonset.blogspot.com
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