Meet Special Guest Author Michael Ellenbogen discussing Alzheimer’s Disease

IMG_5935In 2008, at the age of 49, I was diagnosed with Alzheimer’s disease after struggling to get a diagnosis since my first symptoms at age 39. I was a high-level manager with a Fortune 500 company. As one of the more than 5 million people living with this debilitating disease, I currently live every day to make a difference. In fact, I now advocate for education and the eradication of this disease. I am 100 percent open about the condition because I want others to learn and become educated about something that most people are not even aware of. Difficulty with work-related tasks eventually led to my early retirement.

As a world-renowned Alzheimer’s and dementia advocate, I have been featured in nationally syndicated TV, radio and other media outlets and have written for blogs, newspapers and websites and shared my personal perspective as a guest speaker.

I currently serve on the Pennsylvania Alzheimer’s Disease Planning Committee and other advisory councils.I’m a regular speaker at the Advisory Council on Alzheimer’s Research, Care and Services and have been featured in the Alzheimer’s Disease International’s 2012 World Alzheimer’s Report.

From the Corner Office to Alzheimers- Michael Ellenbogen- Final Ebook Cover 8-20-13I am interested in motivating those with Alzheimer’s to raise their voices and reduce the stigma surrounding the disease. I believe that my diagnosis with Alzheimer’s disease is not the end for me, because I have so much more to give to the world. I wrote about my journey with the disease in my latest book entitled “From the Corner Office to Alzheimer’s.”

Today I serve on many committees and advisory groups in hopes to change and have an impact to the world of dementia. I have also written the book “The Insider’s Guide to Saving Money”

This book will provide insight into the issues I have lived through as a person with Alzheimer’s disease. It will cover the years before my diagnosis and the frustrations I experienced leading to my diagnosis.

I hope doctors, business organizations dealing with Alzheimer’s patients, caregivers, and lawmakers will read this book. I am hoping they will learn how to improve the quality of life for patients with cognitive disorders. My years of experience with this disease should give others an idea of what they may have to deal with. It would have been nice for me to understand what others experienced and read real-life examples of their reports and issues. I constantly wonder if every new cognitive misstep is related to the disease or if it is something that also happens to the average person.

I struggled for the last few years about whether or not to write this book. I decided that someone needs to finally stand up for the folks that are not able to speak for themselves. Please keep in mind that the issues you read in this book are the issues I had.

This book is presented in chronological order, to the best of my ability. The final chapters includes a list of tests that are available to individuals who are still searching for a diagnosis and also recommendations, from a lawyer, on preparation for dealing with the Social Security Administration.

Mike in jacketWhile I tried to give you the best description of my ordeal, I may be off a little in my timeframes. I was fortunate that I kept records and notes along the way. Please keep in mind that sometimes I may think something is factual when it really may not be. That problem has arisen from the disease. I do not think I have done that in this book, but it is possible. I do have to tell you that I was never one to make things up, but sometimes I am not sure about what I think is factual versus something that just came to mind. Above all, keep in mind that I have dementia and I have not given up yet.

While my fist book only took about 1 year from start to finish, this book was like a nightmare to self publish. I think it took me about 4 years to complete. Because I continue to lose many of my skills and I struggled daily just to do what ounce came so easy to me. I had to seek help from so many people and most could not figure out what I once was capable of doing. It was very challenging to know it can be done but not know how to explain it to someone to ask for the help you need. I am not sure it was determination or stupidity kept me going. While I have so much more to write in the book my wife had encouraged me to give it up because of my poor writing skills and use of the wrong words. The book did not include the last 3-4 years of my life.  Based on the reviews I have seen on the book I know I did the right thing and I am now touching so many. I may have accomplished what I tried so hard to do. It sure gave me a true appreciation of how I was so able of doing things that most could not.

While I love tinkering with electronics, boating and writing, I can no longer do any of these things. This disease has robbed me of my skills and I continue to decline daily as I am slowly become a child again. While I continue to do the one thing I can do Advocating for Dementia change, I am not sure how much longer I will be able to do this. I can assure you I am not going down without a fight. I still try to live life to the fullest the best I can.

Imagine having a mysterious illness take over your mind.  Over the next 10 years you try to navigate a health care and social system that is not equipped to address what is happening to you.  As you slowly lose your ability to think and remember, you have to try to hide the losses to protect you and your family financially.  You encounter doctors who are at best baffled, and order a series of nonspecific, redundant, and uninformative studies.  And, to top it off, it takes months to approve and schedule tests and appointments.  Treatment that might have helped is delayed for years.  Your spouse and family are increasingly worn down.  Research options are barely mentioned.  You get so discouraged that you have thoughts of ending it all, and to protect against that, you try to turn over your guns to the police: they of course say no.

If you want to know what it is like to walk in the shoes of one person with Alzheimer’s, read this book, whether you are a patient, care partner, doctor, or other health provider.  It is raw and scary, as well as inspiring, given the self-disclosure. As well as describing, sometimes painfully and in harrowing detail, what we are doing wrong, it can tell us a great deal about what we need to do differently going forward.  Every individual with an illness like Alzheimer’s deserves a prompt, thorough, empathic, and well informed evaluation.  Every family needs and deserves support.  Every reasonable research question should be pursued.

NOTE:

At the close of his book, Michael Ellenbogen says that, “I would like to be remembered for influencing change…and helping others.”  I think that he will be.

Pierre N. Tariot, MD

Director, Banner Alzheimer’s Institute

Research Professor of Psychiatry

University of Arizona College of Medicine

Phoenix, Arizona

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26 thoughts on “Meet Special Guest Author Michael Ellenbogen discussing Alzheimer’s Disease

  1. Michael,
    you made a difference! You opened the gate to discussions and understanding of the illness. I lost a very dear friend
    (a friend of the Queen) with Alzheimer disease.
    I admire your fight against stigma and prejudice.
    The feeling of not being in control of your mind is for my way of thinking the worst thing what can happen to a person.
    Because of the symptoms you are really the only person who knows who you are. I know what that means.
    I have been battling bipolar disorder for over 30 years.
    Then I wrote my autobiography ‘Shadows over the Sun’ and told a friend about it.
    She is an editor and lecturer.
    She wanted to read my book and asked me whether she could edit it. I said, I could not afford it. – She did it for nothing!
    The book has recently been published.
    The first book launch set me free.
    I had unloaded all my ‘secrets’ and was strong enough to face stigma and prejudice.
    I have never been unhappy since.
    I am sure, I have fully recovered from the illness because I have someone who believes in me, got my self confidence back and have PURPOSE in life, which I did not see before.
    I will spread the message of my experience and now started serious research in the causes of mental illness – including Alzheimer.
    Unfortunately the research I came across concentrates on management and treatment of the symptoms of the illnesses.
    Psychiatry and Pharmaceutical companies are not interested in the causes.
    I hope you can enjoy a lot of good times yet.

    Liked by 1 person

  2. Thanks Chris and Mr. Ellenbogen. Although I’ve worked and live in the UK, the situation is also complex for Alzheimer’s and dementia sufferers in general. Diagnosis is not always early enough and not only medication but other aspects (like social care) are not well funded or coordinated. It is a generalised problems that like many other illnesses and health issues I think require an international position and more joined up thinking because it is everybody’s problem and it’s not going away. I admire and thank Mr. Ellenbogen for his advocacy in such difficult circumstances. I’m in Barcelona at the moment, and Pasqual Maragall, who used to be mayor of the city is also an Alzheimer’s sufferer and great advocate for the cause.

    Liked by 1 person

    • Thank you for your comments and it is so true that this is a world problem is very overlooked by far.
      While I cannot speak for other parts of the world here is what is happening in the US.

      Currently, Alzheimer’s disease only receives about $550 million for research from NIH budget, compared to more than $5 billion for cancer and more than $3 billion for HIV/AIDS.
      I am astonished at the lack of funding dedicated to addressing the number one health epidemic.
      There are many more – 3 times more – Americans living with Alzheimer’s than HIV and with the help of the drugs they have today they can live almost forever.
      Women have a 98% survival rate if they are diagnosed early.
      People with Alzheimer’s have a 0% present survival rate.
      Please do not get me wrong, because they are all such important causes.
      My question is why is it so lopsided when these may well be the 3 leading causes in the US.
      It seems that if you are not the squeaky wheel no action is taken.
      That will never happen with this disease because everyone, including me, will die from this and our caregivers are so busy and overwhelmed with us that they are lucky to get a moment of fresh air.
      When we die, all they want to do is forget about the horror they lived.
      That is why we need people who are not impacted to take up this cause.
      It really could be you or a family member in my shoes a few years from now.
      I hope not.
      Your action today can possibly help your future.

      Liked by 1 person

  3. If anyone should be interested I have a 30 page document that I have shared with NAPA and many other world leaders about my dementia vision.
    If you would like a free copy, please reach out to my website on the contact page and mention that I made the offer and I will get it to you.
    If you know someone who is dealing with dementia they would really appreciate it as a gift.

    Liked by 1 person

  4. While I wish it would it will not happen because not many even know about it.
    I do no marketing or even been on any radio stations like I did for my first book.
    I cannot afford to waste the time to market for the book because it than takes away from my advocacy which is so much more important.
    Based on the reviews I saw it was better then I thought.
    When I see those reviews it gives me the inspiration that I know there may just be hope one day to get noticed.
    Hopefully it happens when I am still here.
    The only negative thing I heard was from a recent doctor who believed that the system had changed and it is no longer like I had described it.
    The sad part it is it has not changed as so many I have come to know.
    Even the doctors say the system has failed us.
    This doctor was probably one of the good ones and the exception.
    I run into them every once in a while and to them I apologise.
    Most of them think the system is okay based on what they know and do.
    As you can see that anyone who has any connection to dementia will benefit in some small way if they read.
    It is my hope that they take the necessary action to resolve those issues addressed in the book.
    If that should happen I have really made the contribution I indented to.

    Liked by 1 person

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