By Michael Ellenbogen
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 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.
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.
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