Friday, December 13, 2013

Notes From The Twilight Zone: Dementia--A difficult but important subject

The following is an article from
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.

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:


Foreword by Dr. Benzi Kluger
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
Appendix A: Technical Information
Appendix B: The Seven Stages of Dementia
Recommended Reading
About the Author

There will be more updates on the book in the future.


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