My name has not changed. I am still Robert and my symptoms are still the same. What has changed?......the words that are used to define the disease that is taking place in my body.
In eighteen months beginning in January 2011, I saw
nine physicians. Ultimately I was given a diagnosis of
dementia with Lewy bodies and mild cognitive impairment (MCI)
in June 2012.
May 2015, the diagnosis is now written as
MCI associated with underlying Lewy body disease.
I know that the clinical symptoms of Lewy body disease
are present based upon all that I have read.
In fact the physician that I saw at
Mayo Clinic in Rochester, Minnesota
wrote in his clinical notes that they are rather convincing.
What is different?
After returning from Mayo, I wasted three weeks
I became my worst enemy!
First, the only way to confirm diagnosis is by autopsy and
I told my wife that I would like to delay that
as long as possible.
My wife told me that she did not need a physician
to tell her that I had dementia.....
she could recognize it. (lol)
Finally I asked myself what difference does it make?
At the time of my diagnosis in 2012, I told
my family that I was convinced that I had received
a very early diagnosis.
Then the death of Robin Williams generated increased
awareness and ultimately an increase in the number of
individuals diagnosed with LBD (Lewy body disease).
Within the next several months, I will be entering
a research project at Mayo Clinic in Rochester.
"The objective is to compare and contrast the clinical,
neuropsychological and neuroimaging findings in patients with
mild cognitive impairment (MCI) associated with
underlying Alzheimer's Disease (AD) verus
Lewy body disease (LBD) pathology."
What do I know?
Don't get wrap up in word selection.
If you are the patient, you know what your symptoms are.
My plan is to keep doing what I have been doing for the past
two years.....helping to create better awareness
and understanding.....sharing my journey.
Most importantly, I will do what
the name of my blog is.....Living Beyond Diagnosis.
I have written before about some of the gifts that I have received
as a result of my diagnosis. I will enjoy the pace that I now live at,
enjoy my family and smell the roses for as long as I can.
©2015 - Robert Bowles
Robert Bowles, Jr.