Searching

The patient brought his wife, copies of MRIs, a DVD of the brain, and multiple copies of his medical records. The doctor of the day took the page listing all his symptoms. He admitted he'd been to several neurologists, Shands Hospital and the Mayo Clinic before arriving in the new examination rooms with the movement disorder specialist, one second year medical student, one undergraduate psychology student and a writer.

The list of symptoms was long. For some reason the first complaints he reported were not typical of PD; a feeling he was ill, that something was wrong. His mind felt clouded. He gave up exercising, believing he shouldn't do the things he used to do. No more rollerblading or riding the bike. He felt his ability to walk was different, compromised. The wife thinks his face has become unexpressive and blank. Maybe the largest problem is the high blood pressure- he takes four medications, and still the nursing staff recorded a diastolic pressure close to 180.

The wife is a nurse and agreed to monitor the blood pressure for a week and report on her findings. The doctor felt reluctant to prescribe medications until he was knowledgeable about the blood pressure and his heart, requesting an MIGB study.

Upon examination, he had no visible resting tremor, though his wife reported his left hand did tremble. With two arms outstretched, a fine shake quivered in the fingers of the left hand. Distracted by trying to pat and turn, pat and turn the right hand, the doctor felt some cogwheel rigidity at the muscles near the joint of the left elbow when moving the arm from flexion into extension.

As completely as possible the patient documented all the symptoms he experienced- from a strange feeling in the skin of his face, to nausea, to the certain feeling he had that there was something wrong with him. He even suggested that perhaps some symptoms were all in his head, because he'd lost the ability to distinguish the important symptoms from the ones that simply indicated he was sixty- five- like the crick in his neck he occasionally felt.

What could this doctor give him that other one's failed to do? The specialist in movement disorders told him he probably had a parkinsonian syndrome, which one was still unclear though he favored Shy- Drager, because it explained the blood pressure involvement. The physician gave him an hour. He sat with him and listened to him and his wife speak about the changes he's experienced. He ordered a heart test and requested monitoring of his blood pressure. Would this be enough?

Viartis

http://www.viartis.net/parkinsons.disease/news.LR.htm
14th January 2009 - News release
michael j.fox foundation funds six new approaches

The Michael J. Fox Foundation is funding six new approaches for Parkinson's disease. Two of the projects are assessing the effects of drugs normally used for other medical disorders. One team will investigate the potential of Simvastatin (a drug currently used to treat high cholesterol) to reduce dyskinesia in Parkinson's disease. Another team will assess the effect of Isradipine (a drug for high blood pressure) in its ability to relieve dopamine producing neurons from degeneration that occurs in Parkinson’s disease. The biochemistry of these two drugs is completely unrelated to Parkinson's disease. The Foundation does admit that these approaches seem irrelevant to Parkinson's disease, but claim preclinical studies suggest they might be beneficial.

The Foundation is funding four other projects, including three new types of drugs. One of them aims to show "cerebrospinal fluid based biomarkers measuring microtubule-mediated transport of cargo molecules in neurons are altered in people with Parkinson’s disease." This study is very remote from the known biochemistry of Parkinson's disease, and so does not have the potential to result in anything of practical significance. Funding is also being provided for three new types of drugs: ER-beta selective agonists, type 7 phosphodiesterase (PDE7) inhibitors, and Multiphosphatase Inhibitors. The primary fault in Parkinson's disease is insufficient dopamine formation. Yet none of these three drugs, even in theory, has the potential to increase dopamine formation.

The front page of the Michael J. Fox Foundation web site claims, "We don't just fund research. We fund results." However, despite their good intentions, none of their numerous projects has ever resulted in anyone ever being rid of Parkinson's disease. This is largely because of the faulty scientific basis on which their projects have been based.

Irritated by the negative tone, I emailed the site stating I think one need limit one's negative feedback until a qualified individual could respond to the criticism. I could care less what his opinion is. Unless he can tell me he has an educational background suitable to comment on the funding decisions of the Michael J. Fox Foundation, he needs to keep his mouth shut. I sent the email and began to explore who and what Viartis is.

It seems the site provides information about recent news on Parkinson's disease; information one could acquire through the internet. Though one might assume it is there solely to enlighten, it may have other intentions. Wikipedia, the encyclopedia free and open to input by most people, has banned the individual they claim is Keith Bridgeman, and the person behind Viartis. They claim he has edited the work of other professionals, sending users of written content to Viartis sites. Banned from Wikipedia since June 22, 2006 editors suspect he has infiltrated the on-line encyclopedia and posted information under other aliases- over 400 of them. They call such entities the 'sockpuppets' of General Trojo.

Others suggest the person is a science teacher. Actual students of the teacher think there must be a mistake in identity. According to some, this person is also involved in sailing lessons. Times in which Keith Bridgeman altered information on the Wikipedia, Parkinson site seem to correspond to hours in which pupils would be engaged in test taking or free on break from regular classes.

Whether a mistaken identity, or truly a teacher with a calling to Parkinson's disease, the site would take a lot of time to construct and maintain. News of PD accrues daily. My father, an English teacher in the public schools of Chicago, Illinois never had the time to devote to anything more than grading papers and perhaps watching the evening news, when I was a child.

The nerve the negativity hit was research. In our times, all efforts to clarify issues of PD are worthwhile. All sources of funding provide hope. The Foundation of Michael J. Fox is not without brains, experience and intelligence. They will fund only the best chances- the sea of proposals is deep and money is tight.

Movement Disorders

The clinic moved to their new location in the Morsani Building, with the valet behind a podium, shiny cars idling in front of the sliding glass doors; I thought I stepped into a hotel, until I see a youngish woman being buffeted by a gust of wind, her gait strange and uncoordinated while a man holds her wheelchair behind her. The woman with the close-cropped grey hair, normally behind the front desk escorts me to the elevator.

On the third floor, the patient waiting area is a mass of sitting areas, open wall window and artwork on the opposing side. Photographs the length of the space are waves in black and white, memorable undulations. Examination rooms have the same fluorescent lighting as the rooms they moved away from, but the hallways accommodate a group, not just two slender people. Rooms are ample, most are empty.

Our room is full of people waiting for the doctor who arrives with his own small retinue- the nurse, medical student, and writer. In his hands, the patient has a green camouflage - colored baseball cap. The doctor asks him if he's a hunter.

No, I was a welder. The doctor shakes his head, nodding in affirmation, beginning to explain his position on manganese toxicity and development of a Parkinson- like syndrome. The patient wears a thermal undershirt underneath a long- sleeved dark green shirt. His black shoes have Velcro tabs, diabetes shoes. He sits on the examination table, his head the highest in the room, his face motionless mostly, though a small tilt of the head and smirk pass in reaction to what the doctor asks him, but does not give him a pause to answer. Eight breathing bodies make the room ten degrees warmer. I take off the woolen jacket.

The adult children occupy the seats along the far wall, the daughter following every word, nodding and interjecting questions and comments. Her blond hair is styled away from her face, every expression moves across her facial features. She wears a skirt of red and white checks, her shoes red and white polka dots. A tattoo on her right foot is colorful and floral; the small homemade star tattoo on the left hand of the patient is greenish- blue with faded age. The youngest son, with the straightest nose and cropped light hair drove up from Ft. Lauderdale, three or four hours on the highway. He asks several questions moving his long- fingered hands in front of his chest, nervously.

The patient says so few words, the doctor so many. I seem the only one bothered. The daughter assumes the caregiver role, taking the prescriptions, noting the gradual increase in levodopa dosage, depicted in a chart the physician has sketched.
When does he come back? Someone asks.
Six months. Let's see how he does on the new dosage. In six months, we can correct it if we need too.
The daughter explains to her father he'll return here, not to the previous doctor in Lakeland.
He'll be mad if I don't come back, the patient comments. The daughter pats him on the leg, assures him his old doctor will probably not notice.

Viejo

The patient is small and sits neatly in the chair. He speaks only Spanish, and he's with his son who is bilingual. The son calls him Viejo- old man. Diagnosed in his thirties, he's had PD for more than thirty years and yet he has no resting tremor. His face has little expression and his speech is gruff but when he walks in the hallway, he still swings his arms. He complains of not being able to sleep for more than three hours at night, rising twice to use the toilet. Yet he has a sleep benefit; he wakes in the morning and he is "on". The dopamine producing cells in his substantia nigra are still producing sufficient neurotransmitter, enabling him to wake and move, not taking his first pills until eight o'clock.

The doctor asks about dyskinesia, and the son confirms he has uncontrollable movements. He's not moving now, no twitches, no tremor. He hold his arms straight out in front of him and the right hand trembles slightly. His lips purse as he concentrates on the outstretched arms. The lips cover his teeth entirely; old man lips, maybe he has lost teeth.

The son doesn't sit. He stands leaning against the wall in the small cubicle with the doctor, the medical student and me. We sit on various objects, mostly stools and chairs. I sit on the lid of the garbage, but there is an open chair for him. He wears a blue cap, which he keeps on as he shifts, leaning with his back to the wall, then turning to face the doctor, one side to the wall. The doctor speaks about physical therapy, asking whether he has Medicare- No, Medicaid the son replies. The doctor advises a call before arriving at therapy, to make sure they take that type of insurance. They are out the door with new scripts and a green file in hand.

The chart gives details of a pallidotomy performed in Cuba. The brain surgery apparently eliminated the tremor from half his body. He must have arrived here not long ago… imagine a patient with PD on a raft of tires in the waves of the Florida Straits. Surely, he couldn't simply have arrived by plane, perhaps with a detour through Mexico. How feasible are Cuban pallidotomies for citizens of the United States?

Medical tourism appears to be flourishing in Cuba, by way of Canada for people with passports from the United States. The Neurological Rehabilitation and Restoration Program treats patients with Parkinson's Disease.

The Tree Analogy

The physician still questions the diagnosis of Parkinson's disease. He comments microvascular disease, caused by years of high blood pressure, results in ischemic changes in the brain, that eventually presents in lower body parkinsonism. Today her blood pressure is 147/73 with blood pressure lowering medication. To explain, he gives the tree analogy. The trunks, the carotid and jugular, are strong and capable of providing nutrients to the limbs above; only the twigs at the very ends of the limbs suffer from too little circulation and those leaves grow yellow and eventually crinkle and die. Due to the way the pathway of nutrient flow, the illness affects the legs before the arms and face.

The patient comments she's afraid to go anywhere without the cane. Five days ago, she fell heading into her bathroom, her arms full of toiletries. The plastic containers were unharmed, but she bruised her body and self-confidence. The doctor explains when a patient complains of frequent falls, think of lower body parkinsonism.

Examining the patient, she has no shaking. He comments about a third of PD patients have no hand tremor. Hand movements and coordination are both good. When he asks her to strike her foot repetitively her tappings dwindle, the movements become smaller and diminish entirely.

There is little he can do to keep her from falling. Medications have little affect on balance. The clinician mentions physical therapy and comments Medicare will pay for two prescriptions of therapy per year. Therapists will also be able to judge whether she's suitable for a walker or other device. The patient comments about Tai Chi and how she'd like to enroll in a class, to improve her balance. The physician likes the idea and turns to Goggle to search for a nearby site where she can work on becoming more rooted.

Two Men and a Mute

Shy Drager's Syndrome takes away the body's ability to regulate blood pressure so there is a lot of lightheadedness and falling. That's why the spouse wears tight hose and uses the wheel chair in the middle of the night. It's all happened before. The doctor likes to give these patients erythropoietin, a substance that promotes formation of red blood cells. The patient also takes Florinef, a drug that causes the kidney's to hold onto salt, thereby increasing blood volume.

The patient asks the medical student whether she's a dancer. Her blond hair hangs straight down past her shoulders and she responds easily, replying when she was younger. The spouse teaches dance, and has owned a dance studio for forty years.

The last episode lasted about 15 minutes. She was ready to call 911. It began with shaking in the arms. The trembling got more violent, his eyes rolled back in his head, and his torso straightened in the wheelchair. His breathing changed and he lost bladder control. The wife has described the episodes before, apparently with less emotion. The doctor worries about seizures and recommends an EEG and MRI. He comments it is rare to have PD and seizures appear together, they tend to be inversely related - though hypoxia can induce them.

The man with the thick hair and heavy rectangular glasses asks about scotch and water. He never remembers the seizures, even right after they've occurred. When would you like a drink? The physician asks. Before and after dinner the patient answers, but the wife returns and vetoes all scotch with a wave of her hand. He won't be able to walk, she claims. No scotch.

He recalls a meeting he recently attended. Hugo Chavez was there and he didn't look well. He and his wife had just returned and their bags were still in the hall near the front door. It was a dream, his wife reminds him. He looks at her. As the doctor hands her a new prescription, she turns to her husband, explaining there will be three more pills to add to the regular five. He never believes he needs to take them- she comments, he thinks I am poisoning him.

The next patient comes to clinic with his son. They are speaking Greek when the team enters. He is small and bald and when the doctor asks him to walk down the hallway, he jogs. He exercises everyday. The doctor asks about the hallucinations, and the patient replies he sees them all the time, all kinds of people. Sometimes they walk next to him. Mostly they are happy. Women appear and beckon to him. Some are naked and lie in bed with him and his wife. He has woken in bed, wet with semen. When the dreams occur, he says he feels like dancing and waltzes side to side, his arms carrying an invisible partner.

The patient in the wheelchair hasn't used her feet in a long, long time. They are crooked underneath her white socks, with permanent contractures. Her head almost sits on her chest cavity, the bowing of her upper back is so pronounced. The mother who has been reading a magazine, doesn't comment on the others in the room as the doctor asks permission to let the medical student and writer attend. Clearly, she is bothered. The doctor laughs softly as the stuffed bear the girl holds in her lap speaks. He looks at the girl with short-cropped dark hair, and asks her a question. He wants her to hold out her hands and demonstrates. The girl creeps her right hand towards her mother's left arm and squeezes. Does she speak? He asks. No.

With cerebral palsy from birth, the daughter never speaks. Since the last appointment, the medicines have calmed her dystonic movements. Then the mother leans forward and asks for a recommendation for a Spanish- speaking psychiatrist. She says her daughter screams when people touch her, when she tries to change her diaper or brush her teeth, or change her clothes, or bathe her. When the daughter is tired of family company, she screams. She constantly grinds her teeth and refuses to drink. Mother puts her in her room, closing the door to scream alone. She fears neighbors will call the police, fears they think she is abusing her daughter. Mother confides she gave her daughter three times the dose of a drug to make the child manageable for the appointment.

What kind of quality of life is that? The doctor asks. Screaming is clearly no way to live.

Patients Old and Young

The patient wears her straight white hair short like a flapper from the thirties. While she moves randomly in her chair, her face is mobile and her dynamic presence engages all in the room.
"I don't like to think of myself as having Parkinson's Disease"- she tells the medical student. She uses no term to describe her dyskinesias- she simply says, "When I am like this"- gesturing towards her body. The doctor is unsure whether the movements are due to levodopa levels peaking or subsiding. He encourages the woman to keep a medication journal for several days and to bring it when she visits again. With a week's worth of hourly details listing medications and her physical symptoms, he will be better educated to tweak her drugs and reduce the unwanted movements.
In a restaurant no one wants to sit next to her; the movements are embarrassing. She describes her children's response to her initial session with a physician; they thought she was cured. Levodopa quieted everything.
Now balance and freezing become problematic. She takes no antidepressants. She sleeps well, with one Vesicare she wakes only once to use the toilet. The doctor recommends physical therapy, as freezing can be a source of falling incidents. Sun City- a retirement community south of Tampa is her home for the winter half of the year, by April 30th she returns to New York.
"Try and get an appointment in April, I'd like to see you before you leave."
The medical student has long golden hair, hanging loose and straight down her back. Beneath her white lab coat, she is curvy but tall. She reports on another regular patient providing key issues of his visit. The second student, still an undergraduate, is dark, slender and intense. Thick black thick hair comes low on his forehead. When he is not commenting, he takes notes. His assertive voice and commanding attitude give him an authoritative air.
Diagnosed in his late thirties, the patient has had PD for ten years. He notes he feels weak in the legs sometimes, as if lacking the muscle strength to hold his body erect. Dramatizing this he hops from the examination table, performing several steps with bent knees. The doctor nods but has no comment.
The wife notes when very happy or sad, the medications seem to have no affect. Neither the doctor nor students provide any explanation. The physician takes the patient's arm, testing for cogging in the wrist or elbow and comments on the patient's muscle tone, noting he must be active. The client concedes he cuts the lawn, but maintains his bicep with fishing.
The edges of the man's mouth droop slightly at the corners, making him appear sad. Describing his experience with Amantadine, he saw the ceiling slant downward at an angle and the floor slant upward. He felt space would compress him. His hands felt enormous and his body barely fit through the doorway.
Addressing the cost of medications, Mirapex in particular, the doctor suggests switching to Bromocriptine. Used during the seventies, it is an alternative generic option. Expressing doubt about whether it will be as effective as Mirapex, the doctor leaves the room, returning with a white bag of sample bottles.
It is four o'clock. The patient swallows a pill as the doctor explains to his wife, which cold medications may combine safely with the drugs he is taking. Soon after, the patient freezes in the hallway. He turns his wide shoulders sideways performing a maneuver he hopes will unlock his frozen feet.