Part of my struggle is getting people to better understand
this disease that my mom suffers from. I honestly don’t think people get it and
I don’t blame them. They mean well they really do, but they just don’t
understand. Alzheimer’s is seen as an old person’s disease. I know that sounds
harsh – but I really don’t mean it to. It’s just honest. Most people think that
this is a disease that won’t get worse until my mom is older … oh how I wish
that were the case.
Last week, someone that used to be extremely close to my
mom, asked me if her memory was getting any better. There are just so many
aspects to this disease that people don’t really understand. I’ve been thinking
about this a lot and with that in mind I’ve decided to make some changes to my
blog. I’m going to be writing more often but on more of a schedule. I will be
writing three posts a week and plan to be tackling this disease as head on as I
know how. I’ll be sharing stories from others who I’ve met struggling with this
life altering disease, I’ll give you a peak into what our life is like and then
I’ll be sharing research and information useful to understanding this disease. So feel free to keep reading, or feel free to
break ties! J
Totally up to you!
So with all that in mind today I want to break down our
diagnosis the best I know how.
First let me start by saying we do have Early Onset
Alzheimer’s (EOA), but we are also dealing with a nasty little form of dementia
on top of the EOA. It is called Posterior Cortical Atrophy (PCA). So let’s
start with the EOA.
EOA is an early form of Alzheimer’s. Alzheimer's is a type of dementia that causes
problems with memory, thinking and behavior. Symptoms usually
develop slowly and get worse over time, becoming severe enough to interfere
with daily tasks. Younger-onset
(also known as early-onset) Alzheimer's affects people younger than age 65. Many people with early onset are in their 40s
and 50s. In the United States, it is estimated that approximately 200,000
people have early onset.
Alzheimer's disease typically
progresses slowly in three general stages — mild (early-stage), moderate
(middle-stage), and severe (late-stage). Since Alzheimer's
affects people in different ways, each person will experience symptoms - or
progress through Alzheimer's stages – differently.
In the early stage
of Alzheimer’s the person can still function independently. They can still
drive, work and often be part of social activities. The person may feel and
recognize memory lapses such as forgetting familiar words or the location of
objects. Friends and family will begin to notice difficulties.
Common difficulties include:
§
Problems coming up with the right word or name
§
Trouble remembering names when introduced to new
people
§
Having greater difficulty performing tasks in
social or work settings
§
Forgetting material that one has just read
§
Losing or misplacing valuable objects
§
Increasing trouble with planning or organizing
Moderate stage is
typically the longest stage and can last for many years. Family and friends
will notice the person confusing words, getting frustrated or angry, or acting
in unexpected ways, such as refusing to bathe.
Noticeable symptoms to others may include:
§
Forgetfulness of events or about one’s own
personal history
§
Feeling moody or withdrawn, especially in
socially or mentally challenging situations
§
Being unable to recall their own address or
telephone number or the high school or college from which they graduated
§
Confusion about where they are or what day it is
§
The need for help choosing proper clothing for
the season or the occasion
§
Trouble controlling bladder and bowels
§
Changes in sleep patterns, such as sleeping
during the day and becoming restless at night
§
An increased risk of wandering and becoming lost
§
Personality and behavioral changes, including
suspiciousness and delusions or compulsive, repetitive behavior like hand –wringing
or tissue shredding.
In the final stage
of this disease individuals lose the ability to respond
to their environment, to carry on a conversation and, eventually, to control
movement. They may still say words or phrases, but communicating pain becomes
difficult. As memory and cognitive skills continue to worsen, personality
changes may take place and individuals need extensive help with daily
activities.
At this stage, individuals may:
- Require
full-time, around-the-clock assistance with daily personal care
- Lose awareness
of recent experiences as well as of their surroundings
- Require high
levels of assistance with daily activities and personal care
- Experience
changes in physical abilities, including the ability to walk, sit and,
eventually, swallow
- Have increasing
difficulty communicating
- Become
vulnerable to infections, especially pneumonia
Okay so with that we are living in the
moderate stage. Some days are more of a struggle than others as far as what we
are able to do, but for the most part she can’t be left alone for long periods
of time and she most of the symptoms in the moderate stage ring true.
So now let’s talk about Posterior Cortical Atrophy.
PCA refers to progressive degeneration
of the outer layer of the brain in the part of the brain located in the back of
the head. The onset of PCA commonly occurs between ages 50 and 65. Symptoms
vary by person and change as the condition progresses. The symptoms of this
disease are consistent with someone experiencing neurological damage. They
include difficulties with visual texts such as reading a line of text, judging
distances, distinguishing between moving objects and stationary objects,
inability to perceive more than one object at a time, disorientation and
difficulty maneuvering. This visual impairments will eventually lead your brain
to no longer be able to process sight. So while you technically won’t be blind,
you’ll be functioning as a blind person. Some patients (including mom)
experience hallucinations. Most patients have difficulty performing
mathematical calculations or spelling. They experience extremely high anxiety,
most possibly because they know that something is wrong.
So just having one or the other would
be a lot, having both is devastating to someone’s everyday life.
I pulled most of this information off
my favorite website right now which is http://www.alz.org/.
It has so much information and is my go to website when I’m unsure about
something disease related.
This is just a little bit of what we
deal with day to day. Imagine you had a life that you loved. You had a new
grandbaby, you had a job that you were good at and people knew you were good at
it. You had a life that you loved. Then slowly, it started to feel like
something wasn’t right. Numbers didn’t add up the way they used to. Words got
jumbled in your head. You couldn’t explain yourself clearly and you kept
getting lost in places that were incredibly familiar to you. After lots of
tests and frustration you find out you have this horrible disease. You can no
longer drive, you can no longer work, you can no longer stay alone with your
new grandson. Your world just stops … You used to love to read to pass the
time, but you can’t follow the text anymore and it’s becoming harder and harder
to see. Now you often see things that
aren’t there. You can’t remember stories and things you used to love. This is
your new normal. But all your old friends…their lives kept going. Their lives
didn’t stop. In the beginning they cared, they made time for you, but overtime
they’ve gotten so busy because their lives kept going that you hardly see or
hear from people who were once considered best friends. You feel lonely, sad,
angry – and that’s just the tip of the iceberg …
This is her life … This is her every
day.
It will not get better, NEVER. There is
no hope for people who suffer from this disease. It will only get worse.
I’m sorry I’m not sugar coating it for
you. I’m sure that makes you feel a little uncomfortable and I’m sure some of
you want to remind me that God has a plan in all this. He does…I agree. But
maybe just maybe part of that plan includes you. Maybe it includes me helping
people understand the ugliness and the horribleness that people who deal with
this disease are faced with.
I want to end with this - if you click on the picture at the top of this post you'll be redirected to take the pledge for Alzheimer's Awareness. Worldwide, 47 million people are living with Alzheimer's and other dementias. Help us turn the world purple. Commit to raising awareness in June for Alzheimer's & Brain Awareness Month.
I'm grateful for you.
