The text that follows is material that Bob and Nancy Martone prepared
for a presentation to the Humble Texas, Intercontinental Rotary on
April 13, 1994. If you are not familiar with Parkinson's disease it may
help you gain an understanding of what it can do to a family. To those
who take the time to read this many thanks. The last part is typed in
all capital letters because that is the best that Nancy can do as the
disease continues to progress year after year.
Martone Biography
Nancy Martone was diagnosed with Parkinson's Disease in 1978, at the
age of 33. She and her husband Bob have lived in Kingwood since 1977.
They are members of the Parkinson's Proud support group which was
established in the Humble area about three years ago by Bill and Fay
Rudolph. Nancy has appeared in a news special on KTRK TV which
discussed the use of self hypnosis in managing the side effects of
Parkinsons's Disease and medications. Bob and Nancy have addressed
Grand Rounds (a regular training seminar) for physicians and staff at
Hermann Hospital. Nancy has undergone experimental surgery at the
University of Texas Medical School having an adrenal gland removed and
tissue from that gland re-implanted into the Caudate Nucleus of her
brain.
Bob has been married to Nancy for 28 years, he is an Information
Systems Manager for a major Oil Company in Houston. He also is a
Certified Public Account. They have two married children and are proud
grand parents of a one year old baby girl.
This week is National Parkinson's Awareness Week and they have offered
to speak to us about Parkinson's Disease. Bob will speak first and tell
us what Parkinson's disease is and some of the latest developments
concerning Parkinsons. Nancy will explain with a touch of humor what
it is like to live with Parkinson's disease.
Text from Bob's talk follows.
Nancy and I would both like to thank you for this opportunity to speak
to you about Parkinson's disease. But first let me further clear up who
I am. I am not Dr. Martone as your notice suggested. I do occupy the
unique position of being a Caregiver. That is the title given to
spouses or family members who provide the much needed moral and
sometimes physical support that enables those afflicted with incurable
diseases to continue their day to day fight.
In his Essay on the Shaking Palsy, Parkinson's disease was first
described by an English physician named James Parkinson back in 1817.
The disease was named after him because of the masterful way he
described his observations of the disease.
"Involuntary tremulous motion, with lessoned muscular power, in
parts not in action and even when supported, with a propensity to bend
the truck forward ........ ; the senses and intellect being uninjured."
Parkinson's Disease or PD for short was a killer. Until the 1950's
those afflicted with the disease would eventually become so
incapacitated that death generally followed.
Today 177 years since James Parkinson's essay the disease is still of
unknown origin and is still best described by its visual
characteristics which are:
- Tremor or shaking in the limbs
- Rigidity in the muscular systems of the body and
- Bradykinesia or a slowness of movement.
The tremor is often described as "pill rolling". Imagine holding an
aspirin between your thumb and index finger and try to roll it back and
forth between those fingers.
Rigidity might be described by imagining yourself in a full body cast
or by imaging your flexor muscles tightening so much that your spine
begins to curve.
The latin words for these two phenomenon are Paralysis Agitans - a
paralysis of controlled body movement combined with an agitated
uncontrolled movement of the limbs and head. (Kind of like a car stuck
in neutral that has a misfiring spark plug.)
The slowness of movement is often accompanied by a masked
facial expression and a softening of the voice.
Until recently these three conditions tremor, rigidity, and slowness of
movement were about the only symptoms physicians could observe before
making their diagnosis. Today there is one more important test, that is
how the patient responds to
the drug called LEVADOPA.
LEVADOPA has been the miracle drug for Parkinsons Disease much like
Insulin is for Diabetes, and Penicillin is for Syphilis.
LEVADOPA, which is usually taken as a pill, is converted by an enzyme
in the body, to the brain chemical called Dopamine. The drug was
serendipitously or accidently discovered in the 1940's when a flu
medicine was given to a person with the flu who also had Parkinson's
disease. The persons flu symptoms were relieved and so were the
Parkinsons symptoms. This medicine had the chemical called LEVADOPA in
it.
In the Oliver Sacks book which was made into the movie Awakenings
Robert Di Nero played the role of a man who had Encephalitis and later
in life developed Parkinsonism, and Robin Williams played the klutsy,
but determined, doctor who finally proved that there was hope through
Levadopa drug therapy for those afflicted with PD.
The fact that Nancy is able to be with us today is largely because of
the discovery of LEVADOPA.
Well, I have described all that had happened up until around 1980. How
little was known and how very unsophisticated the method of diagnosing
Parkinson's disease actually was. In 1982 somewhere in Santa Clara
California several people began showing up at local hospitals with
uncontrollable movements, paralysis, and a variety of other symptoms
resembling Parkinson's disease. An alert young doctor of neurology,
Bill Langston, recognizing the symptoms and with the help of the local
police and the FBI was able to trace the cause of this terribly
incapacitating illness to a drug that had been manufactured by a
chemist in his garage, and sold as synthetic heroin, for considerable
profit. Those peoples' misfortunes and that chemists miscalculation has
been the catalyst for much of the successful research that has been
performed on Parkinsons disease over the last ten years.
That drug called MPTP destroys certain brain cells that are also
destroyed by Parkinson's disease. This chemists terrible mistake has
enabled scientists to recreate parkinsons symptoms in laboratory
animals. These scientists are now able to perform research which was
until then not possible to do on human beings. As a result a cure for
Parkinson's Disease may now be found much sooner than would otherwise
have been possible.
I would now like to tell you what we seem to know today and what
medical research is doing.
We all have a place in our brain called the Substantia Nigra ( Latin
for black substance or black stuff) it consists of tiny cells that
produce Dopamine, a neurotransmitter that
allows messaging to occur in the brain. When 80% or more of these
cells are damaged, depleted or die, Parkinson Disease occurs. These
special black cells can be described as tiny factories that produce
Dopamine.
The drug LEVADOPA when taken orally passes through the stomach, to the
small intestine, in order to get into the blood stream so that it can
be delivered by yet another
process to the brain. On this complicated trip to the brain the
LEVADOPA is broken down and converted to Dopamine. The brain then uses
the Dopamine as a messenger and allows the connection that has been
broken by PD to fix itself temporarily. Walt, I suppose it is somewhat
like HL&P (Houston Light & Power) rerouting current around a trouble
spot until the trouble can be repaired. The difference is that if you
have Parkinson's Disease there is no way today to repair the break. (Of
course some people think the light company doesn't know how to do that
anyway.)
There are some theories being tested that may help us understand the
cause of Parkinson's in the near future but the research is very
costly. One Doctor recently estimated that it will take 200 million
dollars per year for five years or one billion dollars to find the
cure. Today approximately 50 million dollars a year is available for
research.
The most likely causes for PD as we understand it today are
environmental toxins such as carbon dioxide, Nitrous oxide manganese or
perhaps something like the MPTP story; heredity, possibly something
passed on from your mother on chromosome #17, there is much new
research on this possibility; or a combination of both. In the
combination theory, scientists believe that we all may be exposed to
what ever this substance may be but only some of us are effected by it
because our genes are more susceptible to it than other people are.
The incidence of PD is about 200 per 100,000 people or two tenths of
one percent of the population. In the U.S. recent estimates are that
between 1 million and 4 million people
suffer from Parkinsonism. The number of people diagnosed each year is
increasing as the baby boomer generation begins to age. PD generally is
not recognized in people under the age of 50. Now that a larger portion
of the population is reaching that age and living longer, the disease
is becoming more widely observed.
Depression is another common problem with PD. It is due to the chemical
imbalance in the brain and the many losses which can come with PD.
These include loss of mobility, job, friends self esteem and more. The
battle against depression is never ending and often he caregiver or
family member can be the best helper. Frequently, the person suffering
from depression is unaware of it and therefore not able to seek
treatment or worse may not want to. Fortunately it is almost always
treatable. Yes, in case you are wondering, Nancy has endured this
little added teaser too.
I have developed a list of some of the procedures that are being
experimented with today just to give you an idea of what is being done.
Adrenal gland transplants, which are actually part of the kidney, like
the one Nancy had five years ago are pretty much discontinued and they
are no longer implanting in the Caudate Nucleus.
Fetal Cell Transplants from aborted Fetuses - These operations have had
many success stories. There are many research programs underway around
the world transplanting dopamine producing cells into the brains of
Parkinsons victims.
There are many practical and ethical problems with Fetal tissue
transplant surgery. Cells from three fetus's are required and they must
be at about the 7 week point in the
pregnancy. The cells are only viable for 24 hours and getting them
tested for AIDS and a myriad of other things takes time and money to
complete the cycle. The estimated
cost per transplant is $50,000.
Genetically engineered cells that can produce dopamine are the next
type of implant that will be tested. These will be less costly, easier
to manage and fewer ethical problems will exist since these cells can
be cloned from many different body tissues.
Pallidotomy- this is a surgical procedure on the Sub Thalamus in the
brain. Research has determined that the subthalamus of parkinson
patients is over active perhaps because it is trying to compensate for
the dead Sustantia Nigra cells. This over activity makes PD worse. By
placing a lesion or scar in the Sub Thalamus it can be made less active
and PD symptoms are improved in almost all of the research patients.
This surgery is difficult to do because the Subthalamus has multiple
functions and layers and the inner layer is the one that has to be
accessed by the surgeon. This surgery has a higher risk to the patient
than the transplant of tissue.
Now Nancy would like to speak to you from the perspective of what it is
like to live with PD. As she approaches the microphone I would like to
tell you a story.
As part of the adrenal gland transplant research that Nancy
participated in there were a series of tests that she had to take at
the U.T. Medical School in Houston. The testing
involved video taping before and after the surgery, emotional,
psychological and intellectual testing as well. All of these were
designed to measure any changes that might occur in her brain as a
result of the surgery.
One of the tests involved the Dr. mentioning a body part and then
asking Nancy to point to it. Most of the test was pretty simple like
point to your nose, ears, cheek but some were tougher like adrenal
gland, appendix, caudate nucleus, Striatum, Sub Thalamus, subtantia
nigra, Basil ganglia and more. The results of the tests were shared
with us both before and after the surgery. Before the surgery, Nancy
scored a seventy but after the surgery she scored 100%. When the doctor
asked her how she was able to do so much better just a few days after
such very complex surgery, Nancy replied by pointing to her head and
said KIDNEYS man KIDNEYS! At first the doctor and I looked at each
other like she was crazy then the three of us all broke out in laughter
as we realized how technically correct she now was.
We will both try to answer any questions you might have after Nancy's
presentation.
Text from Nancy's talk follows.
HOW TO RECOGNIZE A PD'ER
HOW MANY PEOPLE DO YOU REMEMBER SEEING WHO YOU THOUGHT
"GEE HE/SHE MUST HAVE PD!" MY GUESS IS NOT TOO MANY.
HOWEVER,YOU MAY HAVE SEEN SOMEONE WHO HAS A NOTICEABLE
TREMOR IN ONE OR BOTH HANDS, OR SEEMS TO SHIVER ON THE
HOTTEST OF DAYS. PERHAPS YOU'VE NOTICED THAT A FRIENDS
POSTURE HAS CHANGED AND HE'S WALKING MORE SLOWLY AND LOOKS
RATHER "STIFF". OR HOW ABOUT THAT MAN IN THE THEATER, THE
ONE WHO DIDN'T CRACK A SMILE THE WHOLE EVENING BUT RATHER SAT THERE
LOOKING LIKE A CIGAR STORE INDIAN? WELL GUESS WHAT! YOU MAY HAVE BEEN
SEEING PD'ERS IF NOTHING ELSE PD'ERS HAVE A LOT OF SYMPTOMS THAT ARE
COMBINED IN A VARIETY OF WAYS AND CHANGE DURING THE PROGRESSION OF THE
DISEASE. I CALL IT THE "JEKEL AND HYDE"
SYNDROME". WITH PD YOU ARE ON A ROLLER COASTER RIDE...
ONE THAT NEVER STOPS BUT JUST KEEPS GETTING STEEPER CLIMBS
AND DEEPER PLUNGES . AND LIKE A ROLLER COASTER IT TAKES A LONG TIME TO
GET TO THE TOP,YOU'RE ONLY THERE A SECOND AND BACK DOWN YOU GO HITTING
THAT LOW SPOT FASTER AND HARDER THAN BEFORE.
HOW DO PD'ERS DEAL WITH THE CONSTANT CHANGES GOING ON IN
THEIR BODIES? WELL THERE'S ALWAYS DENIAL..... THAT'S A
GOOD WAY TO START. BUT ALL TOO SOON YOU CAN'T IGNORE THE
TREMOR OR THE RIGIDITY OR THE MASK LIKE EXPRESSION YOU CATCH
ON YOUR FACE WHEN YOU GLANCE IN A MIRROR. YOU CAN'T FOOL
YOURSELF THAT PEOPLE AREN'T STARING AT YOUR TREMBLING HANDS
AS YOU LOOK THROUGH YOUR WALLET OR TRY TO PUT TOGETHER A
BUNCH OF PAPERS
SO WHAT DO YOU DO?.... WELL, IF YOU'RE LUCKY, YOU WILL BE PUT ON
LEVADOPA, BRAND NAME "SINEMET". THIS MEDICATION CAN BE A REAL BLESSING,
ALMOST COMPLETELY ELIMINATING ALL SYMPTOMS.....FOR A WHILE.
UNFORTUNATELY AFTER 3-5 YEARS THE PD PATIENT BEGINS TO EXPERIENCE SOME
DIFFERENT SYMPTOMS CAUSED BY THE MEDICATION. THIS IS UNCONTROLLED
MOVEMENT, CALLED DISKINESIA. IT MAY FIRST SHOW UP AS A HEAD MOVEMENT
THAT CAN'T BE CONTROLLED. THIS IS USUALLY A "YES"
TYPE MOVEMENT OR A" NO" TYPE MOVEMENT. PERSONALLY I PREFER
THE " YES" NOD ALTHOUGH IT IS HARD TO SAY NO WHEN YOUR HEAD
KEEPS NODDING YES. I CAN'T TELL YOU HOW MANY REFILLS ON COFFEE OR TEA
I'VE GOTTEN BY SAYING "NO THANK YOU" WHILE NODDING YES PLEASE". ......
IT ALSO GETS PRETTY TRICKY WHEN I'M DRIVING AND I COME TO A FOUR WAY
STOP. I'M ALL READY TO GO WHEN I NOTICE THE OTHER CAR IS GOING OUT OF
TURN WHILE SIGNALING THANKS TO ME FOR NODDING HIM ON. THE FIRST FEW
TIMES IT HAPPENED I REALLY GOT RATHER ANNOYED BUT FINALLY I REALIZED
WHAT THE PROBLEM WAS AND NOW ANTICIPATE ANY
MISUNDERSTANDINGS. ONE GOODTHING ABOUT THIS IS THAT MOST
PEOPLE FIND ME VERY AGREEABLE, EVEN IF I DON'T SMILE.
DISKINESIA CAN GET QUITE SEVERE, WITH THE WHOLE BODY TWISTING AND
WRITHING IN A MOST STRESSFUL WAY. FORTUNATELY THERE ARE A COUPLE OF
WAYS TO DEAL WITH THIS. SOMETIMES CERTAIN MEDICATIONS WILL HELP CONTROL
THE DISKINESIA. SEVERAL NEW ONES HAVE COME OUT IN THE LAST FEW YEARS.
SELF HYPNOSIS HAS ALSO BEEN HELPFUL FOR SOME IN CONTROLLING AND
QUIETING DOWN THE MOVEMENTS.
AS THE DISEASE PROGRESSES YOU FIND YOURSELF HAVING TO GIVE UP SOME
THINGS. SOMETIMES IT MAY BE SIMPLY A MATTER OF
PRIORITIES. AS YOU TEND TO HAVE GOOD TIMES OR "ON" TIME AS
WE CALL THEM AND BAD TIMES OR "OFF" TIME, YOU HAVE TO DECIDE
WHAT YOU HAVE TO DO OR WANT TO DO AND LET GO OF THAT WHICH
CAN WAIT FOR OR BE IGNORED. SOMETIMES YOU ARE FORTUNATE IN
THAT WHAT YOU HAVE TO GIVE UP IS SOMETHING YOU DIDN'T LIKE
DOING ANYWAY. ONE THING I FOUND EASY TO GIVE UP WAS PEELING
POTATOES. GIVING UP GOLF AND TENNIS WAS A DIFFERENT STORY.
OF COURSE WE HAVE TO BE CAREFUL ABOUT GIVING UP TOO QUICKLY
AND ALSO NOT GIVING UP SOON ENOUGH. WHEN TO ASK FOR HELP AND WHEN TO
GRACIOUSLY REFUSE HELP ARE SOME OF THE SKILLS A PD'ER MUST HAVE. THIS
CAN BE A SOURCE OF MISUNDERSTANDING AMONG THE FAMILY MEMBERS AND MUST
BE TALKED ABOUT AND CONSTANTLY UPDATED. WHAT MAKES IT EVEN MORE
DIFFICULT IS THAT A PD PATIENT CAN BE TWO ENTIRELY DIFFERENT PEOPLE,
SOMETIMES IN A MATTER OF MINUTES I CAN GO FROM BEING COMPLETELY SELF-
SUFFICIENT AND BUSY TO COMPLETELY IMMOBILE, INCAPABLE OF GETTING UP OUT
OF A CHAIR OR WALKING ACROSS A ROOM. THIS IS HARD NOT ONLY ON ME BUT
ALSO ON THE FAMILY.
WHO AM I GOING TO BE, DR. JEKEL OR MRS. HYDE? EVEN I DON'T
KNOW.
AS THE SYMPTOMS PROGRESS WE TEND TO SOCIALIZE LESS AND LESS.
WHILE PART OF THIS STEMS FROM EMBARRASSMENT IT ALSO COMES
FROM THE FACT THAT THE AREAS OF THE BRAIN THAT ARE STIMULATED DURING
SOCIAL EVENTS WORSEN THE PD SYMPTOMS. SO A FUN TIME ISN'T' FUN ANY
MORE. IT'S A REAL CHORE. THIS TOO CAUSES STRESS IN THE FAMILY.
COMMUNICATION IS OF THE ESSENCE!
ONE OTHER NOTABLE CHARACTERISTIC OF PD'ERS IS A GREAT DEAL OF KNOWLEDGE
ABOUT THEIR DISEASE. NAMES OF VARIOUS MEDICINES FLY BACK AND FORTH AT
A PD SUPPORT GROUP MEETING AND WOE THE DOCTOR WHO ISN'T UP ON THE
"LATEST" INFORMATION. ALSO FOR THE MOST PART WE'RE FIGHTERS, DETERMINED
TO KEEP AS MUCH OF OUR MOBILITY AND ABILITIES AS WE POSSIBLY CAN. WE
TRY NOT TO BE EMBARRASSED BY OUR PECULIAR POSTURE, WALK, STRANGE
MOVEMENTS AND FROZEN FACILE EXPRESSION.....BUT SOMETIMES WE ARE.
PD IS A CHALLENGING ILLNESS THAT AFFECTS BOTH YOU AND YOUR FAMILY...
BUT WITH FAITH IN GOD, LOVE AND UNDERSTANDING OF FAMILY AND FRIENDS AND
WITH HOPE FOR BETTER TREATMENTS OR EVEN A CURE IN THE NEAR FUTURE WE GO
ON DOING OUR BEST TO SMILE AND TALK AND LEAD AS NORMAL A LIFE AS
POSSIBLE.
7
Bob Martone ([log in to unmask])
