The following is an article from EverydayHealth.com:
This is a subject that relates to a very real problem for people with Parkinson's (PWP). I will explain further after the story.
________________________________________________________
By Michael Ellenbogen as told to
Emma Steel, Special to Everyday Health
Imagine, if you will, waking up one
morning and going about your daily business: you have had breakfast and are
about to leave for work, but you can’t remember where you left your keys.
Common enough, you say; we have all done that at some time or other. Your wife
hands you your keys and off you go.
Life carries on as normal for a few
weeks, then one day, while at work you have to call a colleague, but you have
inexplicably forgotten his extension number; an extension number you have
called numerous times a day for the past 10 years. You feel silly but put it
down to being tired. You work hard and hold a high profile position in a
financial institution so it is understandable that you will have memory lapses
now and again. As with the key incident, you laugh it off.
Over the next few months things
start to get worse. You are forgetting people’s names even though you have
worked with them for many years, you are making stupid mistakes at work, you
are forgetting to go to meetings, you are finding it really difficult to do the
simplest of tasks, you continually forget where you parked the car. Again, you
are told by friends and colleagues and doctors that it is due to stress; that
you need to slow down, maybe take time off, etc. But you know there is
something wrong, you know that it is more than stress.
So you start keeping a record as best
you can, and you pester your doctor for answers. One day you get the answer. An
answer no one expected.
An answer that will change your life
and your family’s life forever.
You have Young Onset Alzheimer’s Disease.
Alzheimer’s is an incurable,
progressive loss of brain cells. In the beginning, it targets memory and
speech, and as time goes on the symptoms become wider ranging and debilitating
and include disorientation, difficulty judging distances, poor vision, poor
speech and writing abilities, repetitive behaviour, mood swings, and
depression. Then, in the final stages of the disease, it is not just the mind
that is affected; the body is rapidly declining also. In the late stages of
Alzheimer’s, there will be difficulty swallowing, a needed for assistance when
changing position or moving from place to place, increased vulnerability to
infection and a complete loss of short-term and long-term memory. Death is
slow, painful, undignified, and inevitable.
My name is Michael Ellenbogen and
this is my diagnosis.
What
People Don’t Know About Alzheimer’s
For the last decade I have
campaigned on behalf of myself and all those suffering from this devastating
disease. Why do I have to campaign? I do it because over five million Americans
have Alzheimer’s and other forms of dementia. What is
more shocking is the lack of knowledge out there about this illness.
I have become extremely surprised by
the lack of public commitment to my pleas for support of Alzheimer’s disease. While some may be sympathetic
in the moment, there appears to be little follow-through.
People look at me and think there is
nothing wrong; I am not in a wheelchair, I have full use of all my limbs, I can
see, hear, speak and listen…but not for much longer.
I am dying; day by day, hour by hour
my life is ending.
So much of my life has changed with
this disease; household chores that were once second-nature, like cutting the
grass, have become frustrating and difficult for me to perform. I leave things
lying around the house – not to be difficult, but because I have forgotten
where they go, and I am also afraid that if they do get put away I will not
remember where they were put.
I was once a very sociable person,
but now I go to a happy affair only to be tortured by the noise and surrounding
conversations because I am overwhelmed by the stimulus of sight and sound. I
don’t understand what people are saying; the words run together and they may as
well be speaking a foreign language.
I can no longer write or speak like
I used to. What you are reading now has been written by a friend of mine who
helps me put my words onto paper. My friends have become distant, and even when
in their presence they will address my wife. Even when enquiring after me they
rarely direct their questions to me. This is heart-breaking for me, the fact
that they feel they can no longer talk to me really saddens me.
Grocery shopping with my wife is
time-consuming and frustrating as I find it difficult to make decisions and
plan ahead for meals. Eating out was something I used to enjoy but now I am
unable to read the menu and assimilate the information into a decision. At home
my wife has to assemble my meals in a series of individual decisions.
The
Loss of My Independence
There was a time when I could follow
a map and easily get from point A to B. Now I rely on my wife for navigation. I
know that it won’t be long before I can no longer drive and that really upsets
me because I love going out for long drives in my car; it is the last vestige
of independence I have left.
I used to be smart, I worked hard,
and I accomplished a lot. Seeing all my failures today is giving me a new
appreciation for the things I was once capable of doing. I was a very different
person, but that intelligence still shines through occasionally as I am
challenged to invent new coping strategies to respond to these changes.
This disease is costing me money in
so many ways because of the problems and issues I create; I have broken
gardening tools because I have forgotten how to use them properly.
Personal grooming is a problem as
well, as I can never remember the last time I washed my hair or changed
my clothes.
In meetings I will lose track of the
subject matter if the information is shared in long sentences. If I am speaking
at events or meetings I must have my speech printed in a large font size with
clearly marked punctuation.
Mind-Body
Disconnection
Sometimes my mind does not
communicate with the rest of my body; I had to turn the grate on my fireplace
but instead of tentatively feeling if it was hot or not I just picked it up and
badly burned my hand.
I can no longer use my video
recorder. I had trouble remembering which way to turn off the water in the
garage for the hose
I lost my job because I could no
longer function in the environment, so now I spend my days advocating for
Alzheimer’s. It gives me a reason to get out of bed in the morning, it
stimulates what is left of my mind.
My
Wife’s Burden
Do you know what the worst part of
this is? I have to watch my wife struggling to do the things that I once was
capable of doing, and know I cannot do anything thing to help. I see my wife
becoming stressed, depressed and overwhelmed, and know it will only continue to
get worse.
My wife is on the road to hell; I
have not even reached the worst stage. That scares the hell out of me.
I am losing my mind and I can see it
happening, but I cannot do anything to change the course. I am slowly becoming
a child again, and will soon be a body with no mind.
At what point should I give up? At
what point would I give up?
What do I have to look forward to?
Why should I put my wife through any
more pain and sadness. Do I really want her to watch me slowly die in front her
eyes?
Any chance I had at a good life and
a happy retirement has gone; my life is pretty much over. If you were in my
shoes would you want to carry on, knowing what is in store for you?
I want to die on my own terms, I
want to die with dignity, I want to die while I can still make the decision to
die, and that is a very small window because I know in the not too distant
future even that choice is going to be taken from me.
The laws we have in place today do
not take into account the needs of people suffering from dementia; we need to
rethink not only how we regard people with this disease, but also how we look
after them. We need to have things in place not only to help those suffering
live vital and productive lives, but also provide the means necessary for them
to die with dignity and at a time of their choosing. We need to take our heads
out of the sand; we can no longer turn a blind, this is a very real problem,
this is happening now to millions of people across America.
Michael
Ellenbogen is an Alzheimer’s patient advocate
and author of From the Corner Office to Alzheimer’s.
_________________________________________________________
As you can see, the writer doesn't hold anything back in this article. He is helping the public to understand the challenges associated with Alzheimer's (AZ) including why "death with dignity" becomes so interesting to someone in his position.
In the case of Parkinson's the concerns are very similar for roughly 40% of patients with PD who have a related affliction: Lewy body dementia. I have mentioned in a previous post that I was working on a book titled Window of Opportunity: Living with the reality of Parkinson's and the threat of dementia.
I completed it recently (I thought I had completed it in August, but decided there was more to be done) with the help on an independent editor in Colorado Springs named Brooke Graves. I am happy that I was able to write it and that she was able to help me "smooth out the rough spots". I hope to have it ready for publication in the near future. As a preview, here is the Table of Contents:
Appendix B: The Seven Stages of Dementia
Resources
Recommended Reading
About the Author
Endnotes
There will be more updates on the book in the future.
I completed it recently (I thought I had completed it in August, but decided there was more to be done) with the help on an independent editor in Colorado Springs named Brooke Graves. I am happy that I was able to write it and that she was able to help me "smooth out the rough spots". I hope to have it ready for publication in the near future. As a preview, here is the Table of Contents:
CONTENTS
Foreword
by Dr. Benzi Kluger
Acknowledgments
Introduction
Chapter 1: Crossroads
Chapter 2: Life before Parkinson’s
Chapter 3: The Elephant in the Room
Chapter 4: Learning Curve
Chapter 5: What’s Up, Doc?
Chapter 6: Deep Brain Stimulation
Chapter 7: Bad News/Good News
Chapter 8: Parkinson’s and Dementia
Chapter 9: Stress
Chapter 10: Living with PD and Cognitive Impairment
Chapter 11: Choices
Chapter 12: Impact on Families
Chapter 13: Palliative Care and Neurology: Striving for
Justice
Chapter 14: Faith
Chapter 15: Recommendations
Epilogue
Appendix A:
Technical InformationAppendix B: The Seven Stages of Dementia
Resources
Recommended Reading
About the Author
Endnotes
There will be more updates on the book in the future.
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