To be diagnosed with dementia
is like getting hit upside the head with a 2 x 4.
The realty of this diagnosis will often cause
someone to withdraw and not want to be
At the time of diagnosis there are
so many questions that flood the mind.
Some of the questions might be different with an early
onset diagnosis versus a late onset diagnosis.
No matter what stage dementia is present at the time
of diagnosis, those questions are real to the
person who has been diagnosed.
For me, my career as a pharmacist had just ended and
I was only 64 years old.
No longer would I be able to practice pharmacy again.
My diagnosis swept me off my feet because I had lost
my purpose in life. For 42 years, I had practiced pharmacy in my hometown. Throughout my professional career, I had loved and
attempted to meet every need I could for my patients.
Most every night, I received phone calls from patients
asking me questions or asking me to
return to the pharmacy to dispense a prescription.
For me, this was the norm.
Because of this, it was easy for me to withdraw and
not want to be around other people.
Finally I realized and accepted the fact that I could
only sit on the "pity pot" so long.
I became very engaged and started advocacy.
When I did this, I started improving.
Three years later, I was referred to Mayo Clinic
in Rochester, Minnesota.
I was gone from home 12 days. Two days for travel and 4
weekend days. I had 22 tests/office visits in 7 business days.
During this entire time, I stayed fully engaged because of
an increase adrenaline response.
After returning home, I literally crashed and burned.
I would have difficulty going to sleep at night and
finally be able to sleep for about 6 hours.
I would sleep for most of the daytime hours.
This lasted for almost 4 weeks.
I felt as if I had lost my purpose in life again.
Nothing I did seemed to help
Harry Urban who started the Forget Me Not groups
and I became great friends one year ago.
We fueled off of each other and
constantly challenged each other.
If I began having difficulty with my disease,
Harry would reach out and not allow me to stay
in that state of mind.
Likewise, I would do the same thing for him.
This is an important part of friendships.
With my return home from Mayo Clinic,
Harry had a lot of work to do.
Finally, over the past few days, I have started
recovering and regaining more of my passion.
The last two days have been fantastic.
My wife and I ate breakfast at Burger King this morning.
A former 86 year old patient of mine in my pharmacy
was eating breakfast there also and asked me
how I was doing.
I explained to him that I was bored especially
since I do not drive anymore. He still has an office
across the street from my old pharmacy where he rents
cars short term. He immediately told me that
I could come sit with him in his office anytime.
Furthermore, he told me that he would come to my house
and drive me to his office. Then he really surprised me.
I took him up on his offer. The next thing I knew, he had me
in his car and was driving me all through the countryside.
Now that is a true friend.
Today was another reminder that friendship and
socialization are important in living with dementia.
I am better today than I was yesterday because
of the time that he spent with me.
Living Beyond Diagnosis
©2015 Robert Bowles
My original diagnosis of Lewy body disease (LBD) came on June 27, 2012. Even though I had mild cognitive impairment (MCI) at the time, I was told that all of my symptoms led to LBD.
In eleven days, I will start my 4th year with this diagnosis of LBD.
How can I still be MCI and be entering my 4th year?
Along with a very early diagnosis, I would suggest that the path
I followed has been beneficial to achieving this.
It certainly has not hampered this.
By the time of my diagnosis, I was exhausted. I was sleeping
12 to 20 hours a day. Many days my wife would wake me up
and tell me the things that I needed to do. I would finish what
she had told me to do and fall back asleep.
Receiving the diagnosis provided some relief because
of all the unanswered questions from having seen
9 physicians in 18 months.
10 minutes after receiving my diagnosis,
I looked at my wife and told her "it is what it is and
everything will be OK".
Little did I know that 3 months later my thoughts would change.
Suddenly, I felt as if I was a convicted murderer....
the physician had entered the charges....
the jury had found me guilty....
and the judge had issued the death sentence....
Now that I felt this way, what was I to do?
Owning my pharmacy had taught me the necessity
of strategic planing. Using those skills that I had learned,
I began a strategic plan for Living Beyond Diagnosis.
At the time of my diagnosis, I read the life expectancy was
2 to 20 years but likely 2 to 8 hours.
Telling my wife that I would outdistance statistics,
I knew that I needed to quickly develop a "game plan".
My strategic plan involved four steps. I am covering the first
one today and will continue over the next several days
to complete the sharing of my plan.
ACCEPTANCE was my first step.
Accepting my diagnosis does not mean that I like my diagnosis.
It did enable me to start taking
each day for what it was. As I did this, I began to look all around me
every time that I went outside. I would stop and thank God for the beautiful
world that He had created. I began to enjoy hearing the birds chirp,
watching the squirrels and rabbits run across the back yard.
Most aspects of life took on new meaning beginning
with my family.
A sense of peace that passes all understanding followed.
Having worked an average of 60 hours a week for my adult life,
I began to just enjoy the moment.
As changes take place in my mind and body, I have to renew
that mode of Acceptance. If I wait too long, those changes will start to
drag me down, so I attempt to make that new adjustment quickly.
When something becomes difficult to do, I look for a possible solution.
If I have to give up something, I look for something to replace it with.
I do not focus on my loss.
Often I verbalize one of many mantras....."I don't have time to die,
I have too much to live for".
Every day is a gift...it is a new day...
live it to the fullest!
Living Beyond Diagnosis
© 2015 Robert Bowles
Most of my time at Mayo Clinic I was on my "A" game....
in the circles of LBD, this is referred to as "show time".
I returned home several weeks ago and crashed.
Starting to use a CPAP machine has been very difficult.
I was started on a medication to help with my
hypersensitivity to sound and my hypersensitivity
to someone telling me too much information at one time.
The new medication is one that should cause sedation;
however, it did not cause sedation for me. It increased
my daytime drowsiness.
Last Thursday was one of toughest days that I have experienced
in a long time. I had an appointment with a counselor.
My wife drove us to the appointment which was about
thirty miles from home. I slept most of the time that we were in the car.
Several days prior to this appointment, I noticed that
my Parkinsonian symptoms were increasing...they have been
relatively calm for a few weeks.
My gait and balance were compromised before I left home and
were even more pronounced by the time I got out of the car.
for the appointment. Stoop posture, slow shuffled steps, low voice,
hoarseness, stuttering, slow speech, word selection problems,
and train of thought problems along with overpowering daytime
drowsiness were present.
As we returned home, my wife told me there were times
when I would look at the counselor as if I was attempting
to process what she was saying.
Quite frankly, I do not remember much of what the counselor talked
about that day. After getting back home, I slept
most of the afternoon.
This was a vivid reminder of how I slept 12 to 20 hours a day for months
preceding my diagnosis and after my diagnosis in 2011 - 2012.
Lewy appeared fully in control of me and was kicking my butt.
Today has been the best day since returning from Mayo Clinic.
While I have experienced some short episodes of daytime drowsiness,
it has not been overpowering. These last several weeks are
just a part of my journey with LBD.
Tomorrow is a new day filled with faith, courage, hope and
determination to fight this horrific disease and stand
United Against Dementia
© 2015 Robert Bowles
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.