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.
Friday, January 9, 2009
Hushed
The patient's voice is so soft it's hard to believe he's not pulling some sort of joke. The voice or the lack of one doesn't change the doctor's regular speech pattern. He wants to know what medications the patient takes. The patient responds slowly and softly, indicating he doesn't know the dose of the pill he takes. The doctor gazes down at the chart at the list of medications and asks the patient how the drugs got in the chart.
"I remembered them." The doctor shakes his head in agreement but he's not convinced the patient is lacking more than a voice. He asks the medical student to get a mini- mental form, then asks the patient whether he knows where he is and what the date is. Satisfied somewhat the doctor questions the man about why he takes two pills per day. The pale man responds he had the sensation he was wearing long gloves on his forearms so he stopped increasing the dosage.
With two pills per day, the doctor can't say whether a patient would experience any relief from symptoms. He's irritated. It's been six months since the patient's last visit and he still can't determine whether the man is benefiting from the drugs. The doctor writes out a drug schedule, increasing half a pill every three days until the man takes up to two tablets three times per day. It's an outline, or a staircase the patient can go up and down on. The physician clarifies he wants the patient on a larger dose to determine whether levodopa is helping the symptoms or not. Signs of illness appear a little worse.
The man's noticed a slight drool from the side of his mouth, his facial expression seldom changes and his blood pressure is quite low. So low, the clinician worries an increased dose of levodopa will send it plummeting; he writes a prescription for florinef, which will keep blood volume high so the slight man won't faint when he stands up. Another worrisome symptom is anemia; patients with Shy- Drager Syndrome frequently are anemic. A stool softener, I notice in the chart, another sign of autonomic nervous system involvement.
We watch the slender man walk down the hallway. Is it the cell phone hooked to the belt that makes his left arm jut out? He breaks the turn in fractions rather than gliding through it. The forward head and rounded back catch in the doctor's teeth. He will recommend physical and speech therapy and will see him again in six months.
"I remembered them." The doctor shakes his head in agreement but he's not convinced the patient is lacking more than a voice. He asks the medical student to get a mini- mental form, then asks the patient whether he knows where he is and what the date is. Satisfied somewhat the doctor questions the man about why he takes two pills per day. The pale man responds he had the sensation he was wearing long gloves on his forearms so he stopped increasing the dosage.
With two pills per day, the doctor can't say whether a patient would experience any relief from symptoms. He's irritated. It's been six months since the patient's last visit and he still can't determine whether the man is benefiting from the drugs. The doctor writes out a drug schedule, increasing half a pill every three days until the man takes up to two tablets three times per day. It's an outline, or a staircase the patient can go up and down on. The physician clarifies he wants the patient on a larger dose to determine whether levodopa is helping the symptoms or not. Signs of illness appear a little worse.
The man's noticed a slight drool from the side of his mouth, his facial expression seldom changes and his blood pressure is quite low. So low, the clinician worries an increased dose of levodopa will send it plummeting; he writes a prescription for florinef, which will keep blood volume high so the slight man won't faint when he stands up. Another worrisome symptom is anemia; patients with Shy- Drager Syndrome frequently are anemic. A stool softener, I notice in the chart, another sign of autonomic nervous system involvement.
We watch the slender man walk down the hallway. Is it the cell phone hooked to the belt that makes his left arm jut out? He breaks the turn in fractions rather than gliding through it. The forward head and rounded back catch in the doctor's teeth. He will recommend physical and speech therapy and will see him again in six months.
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