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|Published: Oct.19.2005 @ 1:06 am
| Last edited: Mar.14.2006 @ 11:21 pm
|Dr. William C. Koller, MD PhD, the world-renowned neurologist specializing in Parkinson's disease, recently suffered a fatal heart attack at age 60 while in his home at Chapel Hill, North Carolina. It comes as a shock and great loss to the medical community. For the record, these are some of my favorite memories of Dr. Koller, who treated me for Parkinson's disease at the University of Kansas Medical Center from 1987-1999.
I was always amazed that he would remember little things about my last visit, such as who drove me to the clinic the time before and where was my husband? He hadn't seen him for a while. He asked me to sing something for him one visit. I was in the community musical then, Fiddler on the Roof. I sang my one-line solo, which was oddly dissonant taken out of context. But he remembered that I
sang! He had 1100 patients and could recall the small personal things about me that I had shared as we visited and I tapped my fingers for him. I found that feat of his quite remarkable.
Another time I recall was when I was working and my husband, Jay, was asking about combining my medications with alcohol. We sometimes had a glass of wine with dinner or a beer on Friday's pizza day. He wondered if it was safe? Dr. Koller very nicely said that he rather enjoyed coming home after a long day, lying on the couch, putting his feet up, and sipping a cold beer. He laughed and said
he was from Racine, Wisconsin, which is just north of Milwaukee. He saw nothing wrong with that and said not to change a thing, with a twinkle in his eye. I will remember his wry sense of humor.
The year before he left KUMC, he had a resident doctor, Dr. "W." They worked for months to regulate Tasmar with my Sinemet. I had blood drawn every two weeks, and sometimes my liver counts went whacko and I would get an urgent call to come back to the hospital to repeat the blood work. I finally had a brief period of success. I saw Dr. Koller in October and he declared that I looked the best he'd ever seen me. Three months later, I was in the exam room, but this time into med failure. I was having severe dyskinesia in the evenings and/or tremors like a jack hammer. Suddenly, after just three months, I was the worst he'd ever seen me.
I had been on Social Security Disability for 2 years and had just started Medicare in November. In January, Jay and I sat in the exam room, ready to ask about the experimental deep brain surgery,
DBS/STN, and how much would it cost, when Dr. Koller brought it up first! He said they'd just received a grant to do 15 or so of those surgeries. Unfortunately for me, I would have to be on
Medicare. I was only 46. "I'm ON Medicare, for two months now!!" I chimed in excitedly. Dr. Koller saw no reason to wait, because at my rate of decline, I'd be confined to a wheelchair soon
enough. I was eager to have holes drilled into my head. That surgery was supposed to happen! I don't believe in coincidence!
Dr. Koller left for his next job as Director of Research for NPF at the University of Miami the same week of my surgery. My new neurologist, Dr. Pahwa came in on Monday, took one look at me and at
the time, I wasn't displaying any symptoms. He asked, 'You're having bilateral STN surgery this Thursday? You don't LOOK that bad. After going over the test data I had just performed that
day, he agreed that yes, I qualified for the bilateral procedure. I was very good at hiding my symptoms.
During the surgery, they were listening to the misfiring in my brain. Placing the wires, Dr. Oberman said, "You're a lot worse than you look." Vindication! I knew it, but after years of hiding it, not giving into it, I knew how bad it really was. No one saw my worst times, except once when Jay found me hiding out? in front of our computer, all scrunched up like the Notre Dame Quasimodo, and tremoring like a jack hammer, hardly able to turn my head to look at him. Dr. Koller knew how bad I was. He had said to us, "Why wait? The meds have done as much good as they are going to do."
I am sure he was right. I was turned off on one side for two weeks last year awaiting a battery change. I felt as if I'd had a stroke. The disease has progressed but the DBS has kept
it under control.
I did happen to see Dr. Koller one more time when he came back to KUMC for a visit. It had been a month since my DBS back in 1999. I was at the hospital for a programming session. I proudly demonstrated my recently rediscovered 'finger taps.' He reacted as if to say, "Yes, I expected you would be that good!!" It was my last time to see him but I felt he was the one responsible for my getting my life was back. My head was a burr of quarter inch long hair but it sure beat sitting in my Quasimodo condition 6 months prior to that.
It has been more than 6 years since my surgery and I still shock people when I tell them I've had Parkinson's for 22 years. This has been a miracle surgery. I hope my next 5 years are as good as the
first five. I'm waiting/searching for stem cells. I want to dance at my next 25th anniversary, standing on my own two feet, moving gracefully -- cured!
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|Published: Jul.14.2005 @ 1:02 am
| Last edited: Mar.14.2006 @ 10:59 pm
|My first symptom started at age 30. It took six more years to find out that I had a disease with a name: Early-Onset Parkinson's Disease. Soon after my diagnosis, I read an article in which the author stated that PDpatients usually had 15 good years of living with the disease until the medicines quit working. I was young. I had two children to raise! What did that mean, 15 good years? Did Parkinson's
Disease mean a limited life sentence?
I was scheduled to see my neurologist, Dr. Koller, one of the world top authorities on Parkinson's Disease at the University of Kansas Medical Center. I had recently begun treatment at the Movement
Disorder Clinic? for the management of my disease.
I waited in a little room with my husband, when Dr. Koller arrived with an entourage of student doctors in his wake. He had 1100 patients. Despite this large caseload, he was able to recall chit chat from our appointment three months prior. I found this quite remarkable. He was a quiet man with a dry sense of humor. It was obvious, by the behavior of the younger doctors, that he also carried an aura of respect.
He started the session by asking me how I had been doing. My eyes welled up and I felt my bottom lip start to quiver as I handed himthe article. I asked in a shaky little voice if I was going to live to
Dr. Koller observed my obvious distress and after a quick perusal of the article he scoffed at it and other such articles for making statements of such broad generalities. He smiled then and kindly explained that with today's drug therapies and other treatment plans on the horizon, that I should live the life expectancy I was meant to before my diagnosis.
He further stated that Parkinson's usually progressed more slowly with early-onset people. The older you were at onset, the faster it usually progressed. He reasoned, if you were 60 years old, the average age of onset, another 15 good years was not such a bad prospect, was it? He figured that was where the article was coming from, not early-onset, which was less understood at that time.
At my young age, Dr. Koller said my biggest challenge would be the need to be on several medications for the rest of my life. I would be in a constant state of adjustment. Probably something else would at first, such as pneumonia, cancer, or heart disease.
Years later, I recalled his words, thinking that the something else likely to get me was probably going to be a bankruptcy! The high cost of prescription drugs, added to the cost of health insurance
to help pay for the drugs, makes me wonder why Parkinson's shouldn't qualify as a catastrophic illness, especially for those of us stricken at such an early age?
Today I am 53 years old, still alive and kicking 23 years after my first symptoms. The article actually wasn't too far off. I got about 11 good years out of my medications before they quit working. I
was fortunate in that there was a new brain surgery for which I qualified. That's a story in and of itself that I will write about
Parkinson's is with me for the rest of my life, thus making it a life sentence, but not a sentence of limited life. None of us know how many days we have left. Whether I live to be 85 or 55, as long as
each day is filled with the joy of Heaven, and the beauty God has created, and as long as I have love in my heart, it will have been worth every minute.
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|Published: Jul.08.2005 @ 8:32 pm
| Last edited: Aug.01.2007 @ 2:32 pm
I live in Leavenworth, Kansas, a river-bluffed, historic old river town
in the northeast corner of the state. The most beautiful time of
the year is autumn, when this part of the Mid-West grows into a New
England, autumnal splendor about mid-October. It is not flat, as
one would imagine Kansas to be. We have rolling hills, dotted
with maple trees galore with plenty of oaks, sycamore, cottonwood,
hackberry, all of which abound in glorious color every fall.
Autumn also has another important meaning to me because it always
marked the beginning of school. First as a child going to school,
then as a high school and a college student, and then as a teacher for
21 years, autumn meant the ending of the joys of summer and the
beginning of another year of reading, writing and arithmetic. As
a teacher, it usually meant time after school for paid extra-curricular
activities such as running the chains for the junior high football
games or coaching the High School Pompon Squad every day after
That changed for me nine years ago when I retired from
teaching to take care of myself and my worsening Parkinson's
Disease. In the fall of 1996, instead of putting on a dress and
make-up, I pulled a heavy sweater over my pajamas, and sat on my
deck with a fresh, hot cup of coffee. Instead of feeling sorrow and wistfulness, it actually felt
good not to hurry off to work. I had always imagined these
moments when I was at school teaching, shut inside a classroom while
the weather outside called to me. The crisp days of autumn with
their warm sun always felt so inviting.
As a student, I was
always able to get outside to enjoy some of those days, but starting at
age 22, I became a teacher with classes to teach, lessons to plan,
papers to grade, and after-school activities to supervise. Those
outside days were few and far between. My high school students
didn't have recess, so I couldn't even step outside for playground
duty. There were mornings I almost called in sick, just so I
could sit on my deck and watch everyone else go to school! My
conscience kept me from doing it, but the thought DID cross my mind.
When my illness interfered with my ability to do my job, I had to
retire. I was only 45. I could have been resentful of this
disease, and all that I have lost because of it. Instead, I began
to look at it as a means to an end; a way to have earned some rewards
in life. What a treat it was to be able to sit on my deck in the
autumn, at last, with my steaming mug of coffee, enjoying the crisp
beginnings of a colorful fall day.
Freed from the requirement of
rushing to school, I could now use this quiet time to talk with
God. I could talk to Him about all the wonderful things He's made
possible and thank Him for the gift of that day, of that moment in
time. I could talk over my concerns for myself as well as others
in my life. At the end of our talks, I would often ask Him for help in
areas of my life I couldn't face alone. These times always left
me with a sense of peace and well-being when I touched base with my
creator. He is my source of strength, energy and joy.
On a typical day, I watched as the
morning ground fog, hovering above the wet grass, it slowly
disappeared. The sun continued to heat the air. Soon it was
a splendid Indian Summer day. I could remove my sweater as the
temperature rose. The bird sounds were different, too. It's
quieter as more and more birds migrate south for the winter. The
sounds of the cicadas weren't as shrill and it's the crickets you
became aware of, their rubbing sounds becoming my own backyard
orchestra. Slowing down let me appreciate small things like this
that I wouldn't have taken notice of before.
When I taught at the high school,
my room was under the band room. During football season, most of
their rehearsals were outside. My daughter played clarinet and
marched in the band. Even with soundproofing, I could enjoy their
music as they rehearsed above my head. We went to the games just
to see our daughter participate in the half-time show.
After retirement, I was also able to listen to the high school band
practice their halftime routine from over the hill, which is about
eight blocks from our house. The sounds of the horns and drums
drifted in and out of my hearing. In my mind's eye, I could see
the band as they suddenly pivoted as one and switched the direction of
their playing. The drum major's whistle could be heard,
loud and clear, blowing out the counts 1-2-3-4. It's shrill
beeping chirrups cut right through the beautiful gold, orange, and red
leaves of autumn foliage, arriving at my deck completely in-tact.
I was far away from the hustle-bustle of the school day but I could
still enjoy parts of it that were familiar and comforting.
A new phenomenon entered my
life at the same time as I was savoring my newly found freedom.
It was a thing called the Internet. In 1996, it was just getting
started. I found out that there were other people from all over
the world who were just like me! They were from all walks of life
and every age. We all had Parkinson's Disease. We were a
community. I could share stories with them or give support when
they were going though a rough patch. There were even a few
care-givers I got to know very well. Since I have a tendency to
seek the best out of any situation, even something as awful as
Parkinson's, I felt I might do some good in the Parkinson's community
by spreading some rays of hope and how I try to make the best of a less
than desirable situation.
Parkinson's Disease made me retire from my
job, but it really was much more than that. It meant I retired from
many of my old ways of doing things.
I no longer needed to multi-task
as I learned to say "no" for the first time in my life. It meant
finally having freedom to do some of the activities I had always missed
such as traveling to Paris for my 50th
birthday -- or the freedom to visit my elderly mother who lives with my
sister in Boston. I get back there almost every other month.
I became a stay-at-home Mom at
last. My kids were in their teens by this time and this actually
turned out to be when they needed my time and attention the most.
I thought I could stay home and avoid the stress of teaching. Two
teenagers in the same house, I would discover, can bring plenty of
stress of their own to replace what you thought you were escaping. At
least I wasn't dealing with 152 teens!
There ARE benefits to slowing
down. It's quite rewarding to take care of yourself for a
while. As women, we have a tendency to look after everyone else
first. We don't allow ourselves to ever get sick. We're the
nurturers, the nurses. But then, I have a pretty big illness, one
that won't go away in 24 hours or a week of bed rest. It's with
me for the rest of my life. And I won't get better unless they find a
cure in time for me. I allowed myself to be sick and then
retired to take care of ME! Pretty cool.
My two children are grown now and
starting to make lives of their own, learning through their own
struggles. I've realized, over the years, an important thing to
remember is not that they grew up knowing their mother as only
Parkinson's would allow them to see me. I have tried to live my
life as an example of how to be strong, how to fight for what is just
and right, and how to stand up for oneself. And standing up after
22 years of Parkinson's is no small feat!
Parkinson's has proven a mighty
foe, but it hasn't won, not yet. I am still striving to conquer
it by finding a cure. My children have told me that they
admire the fight I have put up to battle this disease, fighting one day
at a time, every single day. They have seen me soldier on without ever donning a uniform, but wearing armor,
nonetheless. Brain surgery left me with some battle scars, but
they know even the bravest knight can be cut and scarred in
battle. The key is to survive, to fight yet another day, and win
yet another battle. My hope is that they have viewed their mother
as a tough, female warrior.
The 22 years since my
brother first saw my tapping finger, the first sign that I had
Parkinson's at age 30, have gone by surprisingly fast. I've
learned that life goes on. It is relentless. It's how you
live each and every day that matters. No task is too small or too
insignificant. Be thankful for each and every day. Count your
blessings; Parkinson's just might be one. I, for one, have only
four months to go until it's mid-October again, and I can sit on my
deck in the cool brisk mornings, with my steaming cup of coffee, and
enjoy my freedom, one of my favorite rewards, thanks to
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|Published: Jun.25.2005 @ 3:00 pm
of you who read this blog know about Parkinsonâs but many of you do
not. Because this disease is central to the purpose of my blog, I want
to tell you what I have learned about Parkinson's from a medical and
scientific point of view and my experiences with it first hand. If you
would like to look up more on this disease, go to the National
Parkinsonâs Disease Foundation:
http://www.parkinson.org/site/pp.asp?c=9dJFJLPwB&b=71354I was in denial that I had anything unusually wrong with me. So what
--- my fingers tapped by themselves once in a while. I still
carried on with my life. Parkinsonâs had not affected how I was
living yet. I didn't know what Parkinson's was or that I had it!
My first symptom occurred when I was just 30. My baby son was
being baptized, and my tapping
finger was driving my little brother nuts! He asked me why it did
that? I just said it's something that just happened from time to
time. This was years before Michael J. Fox's announcement that he
had Parkinson's. His first clue was also a tapping finger. He was
29. He knew something wasn't right and sought out help. He
was diagnosed right away.
I ignored it. I was half the age of the average age of onset,
which is 60. I had babies to raise, students to teach, and a
booming little video business on the side. But I knew
better. I was choosing to live in denial in spite of the fact
that my little inner voice was saying I had something wrong with me.
It wasnât until years later after it had been confirmed that I had
Parkinsonâs that I recognized some things that had been definite
symptoms. Looking backwards can provide such perfect 20/20
One example is when my husband complained that while we
took our walks in the morning, I wouldnât swing one arm. He said I held
my arm rigidly to one side, my hand resembling a claw. One day, I saw
it being cast as a shadow and then understood why he felt
self-conscious walking with me. It appeared to be more of a
claw-stiff-appendage than an arm! This is a symptom of Parkinsonâs.
Another example was that I used to stub my right toe when hurrying up a
flight of stairs. I sometimes would fall headlong on the stairs,
papers or food flying. I wasnât picking up the right foot as high
as I should have when I walked up the stairs. Years later I would
almost drag that foot when I walked. Step-slide, step-slide, step-slide
went the rhythm of my feet. Dragging one foot is also a
sign of Parkinsonâs.
When I got in front of anyone to sing, whether it be the pianist for
practice or hundreds of people, my right hand would tremor so
violently, I hid it behind my back or I held it tightly with my left
hand. It wasnât stage fright; my voice had no quiver, but with
Parkinsonâs, any stress will exacerbate a tremor. You may say youâre
not stressed, but your body will belie what you say every time.
Tremor is a sign of Parkinsonâs, although not all people with
Parkinsonâs have a tremor. Tremor occurs in a majority of the
young-onset patients, however.
My singing range was starting to diminish as well. Over the
years, my high soprano notes began to vanish. By today, I can barely
hum two notes. I finally understand people who say they canât
sing a note. Dog gone it, neither can I! A softening voice, a
monotonic speaking voice, is a sign you have Parkinsonâs.
Parkinsonâs attacks all muscles, including muscles that operate your
lips and tongue, which in turn help you to enunciate your words.
Muscles in your diaphram, lungs, and your throat begin to fail. In
advanced stages of PD, you become unable to swallow food or water. You
can choose to starve to death in hospice care or have a peg tube
surgically inserted in which they pour liquid directly into you
I sought out a doctorâs opinion when whatever was wrong with me got to
the next point. I was dressed up in a ghoulish Halloween costume
and the students knew not whom I was. I overheard one girl whisper to
her friend, âItâs got to be Mrs. CareyâŚ. See,â she said, pointing, â
her fake hands are shaking.â
That one observation finally got to me. The students could see
this? I called my family doctor and told her nurse what had
happened. She thought that it sounded pretty bad and she could
work me in ASAP. The doctor mentioned that I might have
Parkinsonâs; her grandfather had it as well. She ordered a
catscan to check out the inside of my head. She didnât find what
she thought she should if I were to have Parkinsonâs. What she
was looking for was a grape sized little nodule located in the
Substantia nigra portion of the brain. This is where the
neurotransmitter dopamine is produced. By the time you begin to
show symptoms of Parkinsonâs disease, 80% of this part of your brain is
already damaged. She thought it would show up on the CatScan as a
darkly colored, little raison shaped thing. She even showed me a
picture. That would mean I had Parkinsonâs. It wasn't there
so she decided I must not have that disease. More tests were ordered.
Years later I figured out where she got that notion. After
a person dies, and they use dye on that part of the Substantia
nigra. The dying structure shows up darker than a normal one
does. The dye reflects the holes left where that part of the
Today they can use a PETscan to determine if you have Parkinsonâs, but
itâs rarely done because Movement Disorder Doctors are so good at what
they do. They can specialize in Parkinsonâs and run a battery of
tests in the clinic to determine if that is whatâs wrong with
you. Medicare does not cover PETscan technology for any reason
and most insurance companies follow suit. The average cost of a
PETscan is $2800.
I was also given a glucose test for Hypoglycemia that left me weak and
nauseous. After having my blood drawn every half hour or so all
morning and afternoon, on an empty stomach except for that thick,
orange glucose drink they make you drink, my levels indicated I was
right on the borderline of Hypoglycemia which would explain my sudden
lack of energy and shaking hand. I went on a diet specified by a
dietician for hypoglycemia. The tremor worsened. It would
still take two more years before I got the definitive diagnosis of
Parkinsonâs. I had three doctors scoff at me and say it was out of the
question. I was too young!
Parkinson's is characteristically a slow-developing, debilitating
disease. The symptoms become a part of your personna, very
insideously. You don't notice you are the only one around you with
some peculiarity. It's just the way you are, and indeed, it is. It
took my mother-in-law and some close friends at church to urge me into
action; to see a neurologist. I was getting worse and everyone else
could see that.
After seeing a neurologist for over a year, I was given a new
medication to try out. The neurologist handed me a sample pack of pills
and said, âHere, try these. My Parkinsonâs patients have good
luck with these.â There was that word again, Parkinsonâs.
My family practice doctor had ruled it out three years before, so why
was it coming up again, I wondered. The medication was Sinemet CR
(time released leva-dopa).
If you have Parkinson's, it is THE main medication used to control the
tremors and other symptoms associated with the disease. My
disability had progressed to the state of my being unable to sign my
name to student's library passes, and I was no longer able to wave at
people from my car. Also, I started favoring my left hand over my right
hand when I directed my childrenâs choir at church.
The Sinemet restored all functions within hours. I called my doctor to
give her a report. I loved this new pill! I felt normal for the first
time in years! It was then that the neurologist said, âSo you DO
have Parkinsonâs. I was riding the fence on whether you did or not. I
was curious if the Sinemet would work.â
Simple as that. I found out that my shaking hand had a
name. I had Parkinsonâs Disease. I didnât know much about
it, but at least I knew that what I was dealing with. It had a
name. THAT I could deal with. It was such a relief compared
to not knowing.
Years later I was to learn that Sinemet is often used as a test in
diagnosis. Not all PD patients tolerate it, so it cannot be used
to eliminate PD as a possibility. But it can confirm the
diagnosis if the patient is responsive. It was the confirming
piece of evidence in my case. I had my honeymoon with Sinemet for
about the next four to five years. During the 5th year, I was to
find out what âoffâ and âonâ periods were and find out what progression
of the disease meant to my quality of life.
For more information on Early onset or Young Parkinsonâs, click on this link: