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.
Tuesday, May 5, 2009
Cotton and Linen
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
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
Shakes and Pains
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.
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.
Test Pilot
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
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
Undaunted
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.
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.
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.
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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