In 1987, after the birth of my darling baby girl, I was thrilled to be
able to nurse her. She would fall asleep in my arms, nursing; we would
fall asleep in chairs, in bed, and she nursed! I remember jokingly
telling my La Leche League friends that my "tingly" left arm was caused
by excessive nursing. Some days, my arm wouldn't move, but life was
"wonder-full" - watching my baby grow and flourish - and then the news
that I was pregnant again! I knew that I was truly blessed!
Life was proceeding according to my time-table. I was too busy to pay
any attention to the whispers of my body - I could only hear what it was
shouting at me as I carried my ten-pound-three-ounce "kick-boxing" son
to term! He was born on Valentine's Day, 1990.
Now, we began to hear another kind of whisper - murmurings at first, and
then stories of a madman in Iraq. My husband, Stan, was in the Navy
Reserves - a Seabee - and my brother, Jeff, was in the Army Reserves
Transportation Unit. But surely this crazy man would not cross the line
that the USA had drawn in the sand?! In September 1990 (just after Ali
turned 3) my brother was activated and sent to Saudi Arabia. Stan was
activated in November and sent to Okinawa, Japan. He would go on to
Saudi as soon as the ground war began.
Meanwhile I was left at home with two babies, trying to make ends meet
on a military paycheck. I had no choice but to return part-time to the
work that I loved - bartending at the Country Club. Now I really had no
time to listen to the ever-more-demanding whispers from my body.
But I knew that something was wrong; that I was having serious problems
counting back change, carrying drinks, and lifting and hauling heavy bar
supplies. Someone said that it was probably just a pinched nerve. I
promised myself that when things got back to normal ...
In February 1991, we celebrated Mitch's first birthday - complete with a
cake decorated with yellow ribbons. My girlfriend made a video tape to
send to Dad and later remarked about how strange I looked with my left
arm immobile and hanging limp at my side.
One day soon after, I was horrified to notice that I was limping - my
left leg wouldn't work! I went straight to my doctor, who immediately
ordered an MRI of my head. The results came back normal so I continued
to fool myself - to hush those noisy old whispers. I had too much else
going on in my life...
In April 1991 Stan came home; his mother was dying of cancer. The
doctors gave her two months - she lasted 3 weeks. My brother came home
right after the funeral.
At last, spring was a reality: my family was together again, none the
worse for wear! And then that Sunday, we were having a family stroll
through the mall and Stan stopped me, looked me in the eyes and asked
when I was going to deal with my health problems.
Believe me, I was back at the doctor's office the next day! He
recommended a neurologist whom I was able to see later that week. Dr.
Lee immediately put me in the hospital to run tests. As he ruled out
disease after disease, I began to wonder just what the hell was going on
inside of me.
He concluded that I had all the symptoms of PD, but said that I was "too
young". He started me on the main PD medication, Sinemet (generic
levodopa/carbidopa). I realize now that he was reluctant to diagnose me
to a life sentence, so I had to be content with "letting the symptoms
more fully manifest themselves".
By now, we were finishing our little house, getting it ready to put it
up for sale, and looking for a larger house out of town. The Sinemet
seemed to work and got me through the ordeal of moving. We had found a
house in Rome, Illinois on nearly an acre of beautiful park-like land,
complete with fruit trees, grapevines, and a huge garden.
Soon after getting settled, Stan and I decided to seek a second medical
opinion, and scheduled a trip to the Mayo Clinic. We felt that we had to
know for sure this thing that we were up against. After several days of
more testing, came the diagnosis that we both dreaded and expected -
Parkinson's disease had moved into our lives.
The next few years were rather uneventful as far as my PD went. My
symptoms were mostly controlled by the medication, although I started
taking something to help me sleep. I was lulled into a state of
almost-denial. "Hey, this is a piece of cake!", I remember thinking, "If
this is the worst PD has to throw at me".
I was even considering going back to work after I got both the kids in
school and was eagerly scouting the job market when ... suddenly, the
meds quit working! This has happened many times since then, and I have
learned not to freak out, as I did that first time. I found out that PD
could get very bad - and quickly.
I remember that first time: the tremoring terrified me, my left side was
frozen into a grotesque caricature of a human body. Now, I know to wait
it out, call the doctor, increase my meds as he tells me, and deal with
it for the two weeks or so that it takes to get back on an even keel
again ... just another day in the life.
But the first time, I thought that my life was coming to an end. I had
panic attacks thinking of my kids and wondering who would care for them.
I developed inner tremors from, I think, the fear and the stress. I was
bone-weary from all the shaking, yet I couldn't sleep. I became
depressed and discouraged.
It became painfully apparent that I could never go back to work again
and maintain any kind of sanity in our home environment. With my
doctor's help and the rebirth of a profound faith in God, I got back to
semi-normal, but I would never take PD for granted again.
Then I began the most dehumanizing, degrading ordeal imaginable
(remember, I had given birth to a 10 pound baby!): applying for and
going through the process of securing my Social Security Disability
pension. I truly believe that the stress of those three years caused a
major increase in my symptoms and their severity. That experience has
completely turned me away from anything having to do with lawyers and
government agencies that are supposed to be there to help you!
By 1996, my symptoms had become so disabling that I began to consider
the unimaginable: pallidotomy surgery - brain surgery that lasted six
hours WHILE I WAS AWAKE! You must really try to understand the mindset
of a PWP in this situation. The thought of having a "halo" fitted onto
my skull and laying awake on a table for six hours while someone
strolled around inside my head with no anesthesia was preferable to the
symptoms! Unthinkable!
But I began to embrace the unthinkable with the help of God, courage
from St. Joan of Arc and support from my family and friends - especially
Tom Kelly - a man my age whose success with his pallidotomy became my
inspiration.
Next;
Part 02: News Article 1996:
The First Pallidotomy
