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.
Thursday, January 29, 2009
Thursday, January 22, 2009
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 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.
Thursday, January 15, 2009
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.
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.
Friday, January 9, 2009
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.
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.
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