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Dad- a Clinic Day without PD Patients
Saturday, May 30, 2009
My father used to be 5'10", now he's 5'6" or so. With my high heels on,
I am as tall as he is. He's got that hunched over Parkinsonian posture.
I tried to fix it by putting my shin near his spine and pulling his
shoulders back. He shouted at me. I couldn't get him to extend his
chest at all, his shoulders and pectorals have very little 'give'.
At
home, he has a regular exercise routine, but the day I saw him he and
his generation opted to eat dinner in the hotel restaurant, rather than
walk the block and a half to the grill and microbrewery. When we did
walk together, I took his arm, hoping that a little support would
encourage a more spirited pace. Usually it failed, but at least he
could hear me. He stops when he talks. I acquired the habit of either
not talking, or monopolizing all the words, so we could continue moving.
Apathy
comes. He is content to read the paper all day, drinking black coffee.
I hear he does little housework and does not help with chores. When
these things are pointed out, he shrugs his shoulders. My Dad has
always favored well-cooked meat. At the hotel restaurant, he requested
well- done bacon; it looked like jerky, he was delighted. He ate his
bacon with dry toast- also well- done. I informed him the protein in
the meat would affect how well his medications worked. He has never
been science - oriented, he is an English and History teacher. I told
him about neurotransmitters and how dopamine and proteins compete for
the same sites, but I don't think he knew what I was saying, except
that I thought the bacon was a bad choice.
Ages ago, I found a
map of Wyoming or North Dakota with a town bearing our family surname.
I showed it to him at the hotel breakfast.
"Yeah, I knew about that." He wasn't impressed.
On
certain nights of the week when his wife works late, he cooks dinner.
It can be a contentious event, apparently. Dad would not disclose what
was for dinner on a recent night; he'd already had one argument about
it. He likes meat and potatoes and tolerates a vegetable. How do the
bowels of this man work? He lives primarily on bread and meat, and
drinks no water, just black coffee during the day.
I am the
delinquent one, the daughter who has never visited him, and he is
nearing 78. At the end of our visit, I hug him and tell him I love him.
He may have become apathetic, but he is teary to see his three
daughters leave.
Hope is Hard to Kill
Friday, May 08, 2009
The patient hoped there was something in her a neurosurgeon could fix,
to alleviate the tremor of her left hand. Unfortunately, she lived with
several poorly aligned vertebrae in the cervical area and the doctor
could see no reason on the MRI for a tremor. He wasn't the first
physician to tell her this. Two neurosurgeons and a neurologist
confided they saw no cause for tremor on the images of her brain and
upper spinal column. Still hope is hard to kill. Clinically, the tremor
she endured would be classified as mild, yet because it was her arm and
hand, she conceived the movement as pronounced and problematic.
An
older woman- she thought herself so, her birthday three years before
the physician behind the desk, she suspected her tremor might be part
of aging. The doctor assured her she was not old, and tremor is not a
natural consequence of increasing age. He pointed with both hands to
his head of dark hair shot through liberally with graying streaks,
encouraging her to change her thinking on that matter.
With a Latin
surname, a Florida speech pattern and the pale eyes and skin, I assumed
she was a descendant of an original Florida family, but I was wrong.
She still used the name of her former husband. Her manner so mild, I
feared she would cry, outnumbered in the examination room by the
clinical coordinator, the physician and myself.
The specialist
recommended amantadine for the tremor, two pills a day- one at
breakfast another at dinner or before bed. The drug has other
properties as well as reducing tremor; it is anti- viral, so patients
experience less flu and colds while taking it. While Azilect might
stabilize symptoms, it is also an MAO inhibitor and possibly
problematic, as one must avoid certain foods- aged meats, cheeses, and
certain other drugs. He also strongly advised an antidepressant to
lighten the cloud she carries over her head.
The MRI mages produced
an unusual finding, a calcified meningioma: a very slow- growing tumor
of tissue involving the tissue of the meninges. The doctor fished into
the large envelope searching for a report to see what the radiologist
concluded, and confirmed his own diagnosis. Women apparently have a
greater quantity of such tumors.
Small, round, light splotches
speckled the brain on the MRI. The doctor gave this a medical term,
"leukoareosis". Apparently, leaky blood vessels in the brain show up on
MRIs due to their excess fluid, a natural consequence of high blood
pressure. They also, cannot be blamed for instigating the tremor of the
left hand.
Cotton and Linen
Tuesday, May 05, 2009
A white blouse, natural undyed linen skirt and huarache sandals; the
patient's appearance hints at affluent comfort. Her height, shoulder
length white hair and the pleasant proportions of her face require the
attention of those around her. Making eye contact with those passing in
the hall, her facial expression does not change. Dyskinesia gently
rocks her head from side to side. The husband is shorter and rounder.
Her legs are long, perhaps a model's legs in younger years.
The
doctor inquires into her health, commenting on the movements of the
head. He has never seen her so mobile. They are in Sun City now, their
winter place. But New York beckons. Their return North means physical
therapy with a previous therapist who worked on her neck and shoulder.
Years ago a surgeon placed metal plates to stabilize the cervical
vertebrae of the neck, but the excess motion of dyskinesia creates pain
that moves through her shoulder and down the left arm. The doctor
comments deep brain stimulation can readily improve the unwanted
movements. She comments she takes a blood thinner, Coumadin and avoids
green leafy vegetables for their wealth of vitamin K- a blood
coagulator. No, surgery is not an option for her.
As the doctor
types information into the computer system the pace of his words slow.
She reaches into her bag for the diary, where she has recorded her
physical condition for the past month. There are days when she froze
repeatedly, other days when she was "on" and forgot to take the
medication. The doctor re-emphasizes the times when symptoms are known
to worsen; with stress, any colds or flu, dental work...From the
occurrence of movements and the time since the last pills the physician
deduces she suffers from peak dose dyskinesia. If she cut back her dose
a bit, relied more on agents that prolong dopamine's affect, or spaced
the doses out more through the day she might experience less
dyskinesia. The husband shakes his head, commenting a large party is
approaching and his wife worries
Undaunted
Tuesday, May 05, 2009
Undaunted
The patient begins explaining as soon as the doctor sits
and the list is long. He thinks he's always had a tremor of the hands
but now he thinks it may be worse; sometimes he has troubling
controlling the mouse on the computer so the cursor sprints across the
screen. He has a low body temperature, usually about 96 degrees.
Another autonomic sign is erectile dysfunction..
On examination
the doctor finds some rigidity in the muscles of the right arm, a hint
of rigidity in the left arm but none in the wrists. His gait is fluid,
with an arm swing. Facial expressions are complete. His eye movements
are full, but then he has only one eye; he lost the left one when he
was seven, when he accidentally stuck a knife in it. He was also hit by
a car and spent a year in the hospital trying to acquire appropriate
healing of the left tibia- leg bone. As a child he watched his brother
die when he had a seizure and never recovered. His father died before
age thirty-five and two of the patient's daughters also died. Yet he is
not depressed, he's an optimist. We laugh. So much death and he is
undaunted.
He is a working engineer, and he's past retirement age,
at 72. Traveling he uses his Irish passport; in Libya they have
negative associations about Americans and he travels a lot; India,
Northern Africa... He speaks French, some Arabic, Spanish, some Italian
and he used to speak Gaelic.
He worries about his enlarging
waistline, and the doctor asks him whether he has had his thyroid
tested. He admits the skin of his arms gets very dry, unless he uses
lotion his skin flakes like the scales of a fish.
The doctor
explains a study he is in which seeks a biomarker for the progression
of Parkinson's disease. The patient is a wonderful candidate because he
is early in the disease process, if he has Parkinson's. The only way to
be sure about the diagnosis and whether he has a deficit of dopamine,
is to gauge the response to levodopa.. Yet the doctor hesitates to give
him medications when he functions so well, choosing instead to give him
a drug thought to delay onset of symptoms, Selegiline. A prescription
for physical therapy will help him form an exercise routine to keep him
active.
Test Pilot
Tuesday, May 05, 2009
A German patient and his Austrian wife have recently moved from Iowa,
and need a new neurologist. His voice resonates in the small room with
only a hint of German lilt left. He has the voice for radio, but he is
a test pilot. The doctor is in education mode conferring to the patient
all things related to Parkinson's and discusses the personality type
others have given to the stereotypical sufferer. Well controlled,
averse to adventure, given to detail and methodical work, the patient
admits that describes himself.
The wife describes the onset of
symptoms a few years ago; trembling in a hand that in time involved the
foot as well. Today there is little evidence of any symptom. The doctor
feels some cog- wheel rigidity in the muscles at the elbow joint on the
left side otherwise the patient's symptoms are very well disguised by
medications- Mirapex and Sinemet. The movement disorder physician
commends the patient's management, he is doing the right things-
exercising daily... He would add something thought to slow illness-
perhaps coenzyme Q10 or deprenyl.
The doctor conducts a physical
exam. Performing the finger to nose task, first with the right hand and
then left, I note the patient's hands. His skin is taught and smooth,
unlined and young- looking. He is in his sixties and he has the hands
of a young man. The wife has skin appropriate to someone of her age,
and a flare for fashion evident in pale pink clogs with an open toe and
well- cut red hair. She is un-intimidated by the doctor and presses him
on why he speaks so much of animal research.
The patient's gait is
flawless and his arm swing full and loose. 'Maybe I don't have PD...'
the patient comments as the physician emphasizes how well his symptoms
are covered. The doctor doesn't give the comment any reply. All
witnessed the wife mimicking the tremor of the hand, and how the
movement eventually affected the left foot. If he doesn't have
Parkinson's he has something close enough
Rigid and Akinetic
Tuesday, May 05, 2009
He is a model of rigid akinetic Parkinson's disease, as opposed to the
tremor dominant type. A compact man with a receding hairline of thick
wavy and whitening hair, his nose is hooked. The skin of his face is
pale and wraps his cheekbones tightly. He admits he's never suffered
from tremor, a good thing when welding. He's an artist, primarily a
sculptor. He calls himself an art teacher. The doctor asks to see his
work, noting he appreciates art. All sorts of toxic substances-
manganese, cobalt and solvents increased the risk he would acquire the
illness. Today he is either
under- medicated or does not have PD.
He sits like a rock in the yellow plastic chair. As he speaks he moves
his mouth, but he doesn't fidget, scratch, blink or shift his weight.
He shoots his left eyebrow up, once.
The patient and the doctor
begin their words at the same time, more than once their voices
overlap. When a pronounced delay in response sends the room to silence,
the wife tries to help by reminding her spouse of the sequence of
events. It has been six or seven years since the diagnosis, the initial
symptoms are hard to recall. Still symptoms, diagnosis and treatment
began within a period of a year. Not good, in the opinion of the
physician...He can't recall feeling any improvement with medications.
The specialist declares the patient is inadequately medicated or
doesn't respond to levodopa.
He begins drawing a chart,
describing how to increase the dose of Sinemet from one pill, four
times daily to a possible maximum of ten pills daily. The idea is to
increase the dosage, then observe the response the body makes on the
following two days. Always increase the dose by half a pill, in a
staircase fashion, halting progression if feeling nausea. If nausea
continues at that dose, then step backward a half pill. The object is
to discover what the correct dose is to alleviate most symptoms.
Fluidity of movement, increased arm swing in walking, loosening of
joints are as three aspects for possible improvement.
The doctor
hands the patient the medication progression chart, requesting he
return in three months. He is not free, yet. Both patient and spouse
agree to provide their blood for a study searching for possible
biomarkers in PD. This entity in blood would change along with the
progression of illness, providing another source to document disease
progression. Physicians determine the progression of illness by
physical exam, but it gets tricky when patients rely on medication to
be fully functional. Visual scanning techniques can also document loss
of dopamine in the substantia nigra, but the procedure is costly, and
dopamine-producing cells dwindle naturally with aging before producing
parkinsonian symptoms.
Contrasting Patients
Tuesday, May 05, 2009
Dyskinesia of the diaphragm is what he suffers from. The area below his
rib cage seizes, moving the t-shirt that covers him, I think of a belly
dancer's abdomen and wonder whether the doctor will lift the t- shirt.
The pulling can get so intense he buckles over, while sitting. He was
diagnosed only two years ago, and the disease affects both sides of the
body. Dyskinesia affects both hands, and they move spontaneously while
he sits in the examination room. Amantadine helps the dyskinesia and
he's been without it since Sunday.
As the doctor examines the
patient he notes the dark freckles that cover the area from the ankles
up towards the knee. It's a side effect of Amantadine. In lighter
skinned people the color appears reddish- purple. Since he's been
without the medication the swelling in the feet has diminished.
The doctor recommends rotigotine and the clinical coordinator goes to
search for samples. He explains to the daughter and patient what he
would like to try- diminish the Sinemet while adding rotigotine, to see
whether the new combination will help eliminate the excess movements.
As the physician explains he writes the steps down on a sheet of paper
he discovered in the printer.
This patient is almost floating. She
enters and sits and speaks with the coordinator mentioning the book she
recommends to all with a relative or spouse with PD, but can't remember
the title. She wears green patterned long shorts and a yellow shirt.
Her glasses sit on her nose and her skin is pale and clear and a hint
of pink covers her cheeks. In her animated speech she kicks her legs
out from below the chair.
The doctor searches the computer for
the note he dictated last, while she speaks. There was a time when she
fell into a fit of depression. She had reached fifty, got divorced and
her children were away. 'You have to dig yourself out, anyway you can.'
She is doing much better these days and would feel even better if she
didn't have to spend $485. every month on the Neupro patch she acquires
from Canada. This month she called twelve pharmacies before finding the
medication at the thirteenth. They gave her free shipping.
The
doctor encourages her, telling her she looks very well. She's had the
illness for fifteen years and now sees symptoms of the illness on her
left side. She confides she has been living with her boyfriend for the
past eleven years. He is a calming influence and doesn't mind waiting
until her medications are working, to leave the house.
When the
patient has left, the doctor comments he has seen her for a long time.
He remembers the husband who was Italian and reminded him of a mobster,
wearing a baseball hat and a large belly. When I leave I note her new
partner; a tanned fit man also wearing a ball cap.
Bikes and Ladders
Tuesday, May 05, 2009
Bikes and Ladders
There are no symptoms when he's working. He climbs
ladders and walks on roofs. When he comes home he freezes between
doorways, as he does at the movies. He and his wife wait to be among
the last to exit, to avoid the rush of people. He comments he doesn't
sleep much, but it doesn't bother him. His energy level is high. It's
been ten years since his diagnosis and his gait appears unaffected by
the illness now; he has a natural arm swing and his steps are fluid. I
ask the doctor whether he questions the diagnosis, and he says no. The
patient responds to levodopa. The only troublesome time is around four
in the morning after a bowl of cereal when the medication never seems
effective; he shuffles. The doctor asks if he pours milk in the bowl.
He does.
Milk protein is an especially competitive amino acid,
and competes with levodopa for space on receptors. Other proteins will
have a similar action, making levodopa much less effective. It's hard
to fathom the patient doesn't know this. Both indicate this is the
first time they have heard dietary proteins can interfere with uptake
of the medication. The clinical coordinator nods and mentions this is
something a support group can be helpful with. She is in the process of
setting up a support group for patients in their area, and she gathers
their contact information.
The next patient has had the illness
since his mid thirties. He sits with his right shoulder drawn up
towards his ear as his left hand flails and the right hand is stuck in
a dystonic spasm. He recounts a story of hospitalization after falling
backwards in his yard. They gave me morphine, he notes. The doctor
raises his eyebrows and asks whether he liked the sensation. No, he
thought they were trying to put him to sleep. They did x-rays of his
chest after listening to his lungs. He had six x-rays, they only needed
to take two, he relays indignantly. They put him on a course of several
antibiotics, with names this long- he gestures a distance of about a
foot. This is his worst nightmare; he will die in a hospital of
pneumonia. He was strapped to a gurney, journeying into the belly of
the hospital deep underground with patients lining the hallways all
waiting for testing. Before they let him go, they made him sign a paper
promising to take another two bags of IV antibiotics. He is in the
midst of writing an angry letter to the hospital- a lawyer still.
The
caregiver accompanying him is blond and well dressed, and has pink
lipstick. Her face is pleasant and her demeanor quiet but assertive.
She makes notes while the clinician speaks. Asking him to clarify what
symptoms of an "off" episode look like. The answer is complicated
because the patient experiences wearing off symptoms in one arm with
dyskinesia on the opposing side. Learning about Parkinson's will be
rough with this patient as the model.
He wants to ride his new
bike, it has two wheels, not three, as the doctor would have preferred.
It was lightning when it arrived, but he had to try it out before the
rain began. The pretty caregiver found him a block away frozen in the
pouring rain.
Shakes and Pains
Tuesday, May 05, 2009
Six month follow- ups help the doctor and patient stay on top of
shifting symptoms, though more frequent appointments are possible. The
doctor has said he likes movement disorders because there are no
emergencies. Though the first incident of freezing may feel
catastrophic to the patient, it passes. They are bumps in the road.
Sometimes the journey is lightened by sharing it.
The
Parkinson's disease coordinator speaks with the patient about attending
possible support group meetings in his area. He responds, stating not
all patients want to talk about their problems. Not deterred, she
explains the sessions will be run according to group preference. Some
people may want lectures, others may just want the social time.
The
shooting pain in the left knee is new and it worries him. It never
occurs when he's doing Tai chi and it moves up, not down, as the doctor
would prefer. Pain moving downward may emanate from the spine, a bony
prominence can easily impinge on the fibers of a nerve, sending
scintillating pain down through the leg. That's not it. This is pain
moving up towards the thigh and it's fast, not throbbing and deep as
the pain patients with PD describe. Both his mother and father are
diabetic...The patient climbs onto the examination table and the
physician tries to replicate the sensation. Both legs have bruises at
the lower mid- shin. The tightness of the muscles in the patient's legs
is extreme; the doctor comments he would like him to continue with
physical therapy.
Parkinson's disease in this patient is evident
in the constant tremor of his hands. Six months ago, it was not as
prominent as it is today. He describes shaving, his right hand wavering
towards his cheek. The doctor recommends wearing wrist weights to
dampen the movements, the patient nods. Tremor is one of the hardest
symptoms to suppress, and he takes a distinct drug to soften the
constant shaking. Yet he walks well, with head and shoulders erect, an
arms swing, and ample step size.
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