Thursday, March 14, 2013

An Article about me & this Disease.

                                        Caught Between Realities
                                                (By: j.v. potocny)

Come with me into my world of Alzheimer’s, to help learn the joy, pain and peace that
one can find. By the way my name is Joe, yes simply Joe. I am a sufferer of Alzheimer’s
(AD) and Frontal Temporal Dementia (FTD). In other words my brain does not function
like yours. But that is ok, I live in a multiple of realities, unlike you I never know when
I will pop in or out of any of them.

My life is kind of like Bugs Bunny having Elmer Fudd chasing after him. I pop up in one
place, than another and so on, until I find you. However I cannot dig holes to go into I
would wind up falling in them. See this life presents many problems but one has to find
the humor in it or just totally give up.

What you need to realize is that there is NO CURE, NO TREATMENT (OF VALUE)
AND NO KNOWN CAUSE for these diseases. Yes that is right Virginia, we all DIE from
this disease. Life expectancy is about 2 – 10 years from diagnosis, more or less. Remember
AD, FTD and other forms of dementia are not forms of MENTAL ILLNESS, they are
DISEASES. Our physical brains actually shrink and loose functionality. It is my personal
opinion that AD and other forms of dementia are auto immune diseases. I base this on
the fact that the body for whatever reason causes the formation of the protein strand
that becomes part of the beta amyloid protein, the suspected culprit in this disease. Just
a little note these amyloids can cause heart attacks, kidney failure, liver problems, in
other words can affect many organs throughout the body besides the brain.

We who suffer from this disease get to meet new people almost daily, even in our own
households. Kind of like an EMU, who turns around to look at the same person and sees
a new person, a new friend. We get to forget the past gradually, the good stuff to be sure,
but also the pain caused by others in our lives and ourselves. We get to forget all the
nonsense we were taught. The birds, clouds, trees and such all take on a new meaning in
the world we are thrust into.

If you are reading this and saying to yourself, right this guy is ok, I want you to know
that spell checker and grammar checker are wonderful. See if I chose not to use them, as
I do on my blog, you would need to learn how to Speak Alzheimer’s. My dialect is known
as joeneese, yes all my own a mix of various words, utterances, looks and whatever else
comes along.

Most people wonder how one handles getting this news. Well let me tell you some go to
pieces, some cry, some get angry, some wonder why me, etc. Me I just said thanks now
you have confirmed what I have thought for the past 10 years or so. See I suffered from
what I now call, DDSS or better known as Depressed Distracted Stress Syndrome. I have
found over the years since 2004 that many people with AD went through the same
annoying diagnosis when they knew the doctor was off the beam so to speak if not
outright crazy. To be validated was a relief to me not a blow to my life. Actually being
given this death sentence relieved me of some fears of death. See I never feared dying
but I did fear death from a heart attack or that Nano second between life and death as
we call it. But suddenly that no longer bothered me it just went the way of a wind storm

I am not a religious person, so let us get that out of the way, but I do believe in one God
and Jesus Christ. See I look at myself as a Spiritual Being Having a Human Experience.
Let me tell you it has not been fun or comforting, really until now. I know I am leaving
here and that is ok now, where I will wind up we will see. I do have places I go to now
but I doubt that is where I will end up, although I would not mind.

Some of the humorous things I find is my wife calling me, Joe, Joseph, Joseph where are
you, and turn to her and say what rather with a little terseness, see she has called me
back from where I was. She asks me who have I been talking to and where was I. By this
time I have no idea of what the heck she is talking about, because it is gone from me. She
tells me I was sitting there talking and moving my hands and looking out as if I could
see who it was. Maybe she should join the conversation, who knows what might take
place. Some of our family discussions at the dinner table are just, well right out of a
sitcom. For me especially because it does not take long for me to get lost in them and not
know what is going on, let alone why I have this plate of stuff in front of me. I even
laugh at myself when I fall. Everyone gets so concerned and all I do is lay there and
laugh. See I find these things to be funny, why because I am laughing at myself and my
own stubbornness’ at times. Like climbing on a ladder, no business being on one, and the
next thing I know the ladder went for a walk and I met the floor on my back and head.

Do not get the wrong idea, this world of Alzheimer’s and other forms of dementia are
without a doubt terrifying. Not only to those who take care of us, and we can be a real
handful to deal with, but to us that wander in the fog of it. See we not only have to try
and live in your reality, but we are forced into a different reality, the World of
Dementia. A life of continual forgetfulness and being lost and not knowing where you
are one minute to the next. Filled with frustration, aggravation, not being able to do the
things you once could. Sitting down to do something and there you sit because you do
not have a hint of what it was you were going to do. I had to take a break from this for
a couple of hours, because my brain hurt and stopped talking to my hands and I did not
know what to write or say. I do know one thing that someday I will be set free from this
life of different Joe’s and be just Joe in yet another reality.

God Bless & Keep You & This Country of Ours!


Anonymous said...

Wowzers!!!!!!! that was a very nice post

Ana said...

Hi Joe. Many thanks for writing about your life. First hand accounts of how it is to have dementia (whatever type) is what is really missing in the strange world of dementia services. I love your approach to life - although I can imagine many confusing times for yourself and your family. Stay strong and keep writing. Ana

Carol Noren Johnson said...


Your theories need attention, and writing about your fog is very important. Hope you do not get up on a ladder, but wonder if you will remember to not do that.

Go see the movie "Quartet" with Lynn.

Hugs and prayers,