I was
born in 1950 in Tokyo, Japan. My Dad worked for the government as a
civilian personnel officer and every few years we moved from
one Air Force base to another. I've lived in Japan, Hawaii, Guam,
Okinawa and a handful of States in the U.S.A.
I have
Parkinson's Disease. I've often thought about when and why I got it.
The most widely accepted theory is that Young Onset Parkinson's is
triggered by environmental toxins. There is plenty of opportunity
for exposure to a wide variety of them anywhere on the planet
unfortunately. We are poisoning ourselves. Are there any
neighborhoods in America where the residents don't use
herbicides, pesticides and other household toxins? These chemicals
potentiate in the soil. They don't just go away.
I
remember when I was a kid the DDT trucks drove through our neighborhood spraying
great clouds of the stuff in their wake. Children would run outside
and frolic in the poison mist with regularity.
My family lived in Omaha, Nebraska
for a few years in the early sixties. My best friend lived on a farm
and I loved spending
weekends there. Suzy, her brother Mike and I roamed the
countryside for miles, usually following a creek. When we were
thirsty we drank water from an underground stream that fed the creek. What could be safer? Suzy died two years ago of cancer.
The next
move was to Guam. It's a small
island in the Marianas. I watched rain sweep across the
ocean towards me and
know just how long I had before I needed shelter. Planes from the
Air Force base where we lived transported soldiers to Vietnam
every day. It was common
to hear the klaxons wailing. These were regular drills and we got used to them.
Guam has a type of Parkinson's disease that is
found only there, in two villages on the Kii peninsula of Honshu and
in southeastern Irian Jaya. When I read this I wondered if I had
Guam's Amyotrophic lateral sclerosis and
Parkinsonism-dementia complex. I soon realized I didn't (because I
was still alive).
Tremors first
came to my attention when I was in my twenties. My
right foot wiggled slightly when I was reading or resting. The
occasional occurrence was a curiosity to me then. As time past
it was obvious to friends and family that something was happening
to me.
The diagnoses came in 1997 when it was no longer possible to
conceal my symptoms. I delayed making the appointment as long as
possible because I thought the doctor would tell me I had
Alzheimer's disease. Really.
Jump to
the end of 2005. My symptoms are not noticeable to the
casual observer. The neurologists I have been going to at the Aring
Neurological Clinic at University of Cincinnati believe in
fine tuning each patient's prescription 'recipe' to get the best
symptomatic relief possible. They prescribe non-Parkinson's drugs (provigil
in my case)
to alleviate some side effects of standard Parkinson's medications (requip).
This approach works well for me.
Over the
past eight years (since being diagnosed) my Parkinson's progression
has been very slow and I count myself lucky for that.
Life was
on an even keel for those 'after-medication' years. I met many
people through advocacy efforts who became close friends. I was
active. I had a caring spouse. I was optimistic about the future.
In 2002
things changed after a car accident took the life of my husband,
Carl. Suddenly there were decisions to make. I thought I would stay
in the house we had lived in for the past ten years. It was the
longest time I had lived in any one place. But living alone
didn't seem like a good future plan for a person with
Parkinson's disease. I was ambivalent for months. Decision making
was easy before the accident. I lost my confidence. I knew that with no
cure for Parkinson's disease in sight my condition would deteriorate
and I wanted to find a way to maintain my autonomy as long as
possible.
In 2005 I
put my house up for sale and started looking for
a new way of living. The criteria began to shake out like this;
-
I
wanted to be in a neighborhood where I could walk to procure the
things I needed.
-
I
knew I would feel stuck if I lost my ability to drive.
-
Contact with other people was necessary.
-
I
wanted to feel connected to a community.
-
I wanted a more
diverse neighborhood.
-
Stairs were out. My current house was on two levels.
-
Proximity to health care was important.
-
A
neighborhood where any type and price range of housing could be
found
I started
looking in Louisville, Kentucky and soon decided to narrow my
search to an old
neighborhood called 'the Highlands'. Its residents are a mix of
artists, students, musicians, chefs, eccentric and eclectic characters
both young and old.
The streets are lined with houses that were young a hundred
years ago. The gardens are fragrant and old fashioned.
The house
I bought is a Victorian that had been made into a duplex by some
previous owner. I have the downstairs flat and my daughter moved
into the apartment upstairs. I am just three blocks away from a
movement disorder neurologist here. I can walk to
a drug store, bank, post office or to get food in less than five minutes.
After months of really irritating renovations I finally
unpacked.
In
Louisville they have a motto that is proudly displayed on bumper
stickers, t-shirts and billboards. It is "Keep Louisville weird"
I like
this city.
Click
on the pictures to view scenes from Louisville
