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 yourself 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.
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. Difficulty with work-related tasks eventually led to my early retirement.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.
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.
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. Today I serve on many committees and advisory groups in hopes to change and have an impact to the world of dementia.
While I love tinkering with electronics, boating and writing, I can no longer do any of these things. 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.
This disease has robbed me of my skills and I continue to decline daily as I 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.
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.