In 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.
I 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.
While 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.
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