Golden Slippers

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The dyskinesias keep her moving while she sits in the wheelchair. She comments on the heat, and I mention she has the ocean breeze on the east coast, which we lack. Her live-in assistant wheels her through the hallway. They are off to explore a nursery in Plant City. As we speak I imagine how this would be, holding a conversation while randomly moving your body. I concentrate on the content of her words, because her face moves away. She is accustomed to it, having had dyskinesias for many years, but perhaps it disturbs her, still.

We are wearing the same shoes. Hers are fancier, being glittery gold. She had identical ones to mine, but lost her left one while walking on the beach. A wave came, ran over her feet and sucked her shoe off, taking it into the surf before she had the wits to go after it. She bought the glittery pair in Sarasota at a swank shoe store, for twice as much money.

With dyskinesia, and sitting in the clinic’s wheelchair, she is still a cheery person. The superficial veins on the top side of her feet are so numerous they give her feet and ankles a bluish cast. Her face is beautiful and marked by age and the sun. She wears her long hair in a pony tail.

To improve her sleep, she has found a single tablet of diphenhydramine, the ingredient in Benadryl, helps her to fall asleep. The doctor comments she may find she sleeps the whole night through, if she takes two. She is one who would benefit from the partial dopamine agonist Pardoprunox, which recently completed stage three clinical trials. Whether the FDA will allow the product to come to patient’s hands, and how long they will take to make the decision is anyone’s guess. The drug has been in testing for the last five years. In the meantime, the doctor recommends amantadine, three times a day at 100 mg. Given early in the process of the disease it may provide some protective and slowing affect. In later stages of the illness it can give some patients a therapeutic window without daily dyskinesias.

The Cochran Review states, “There is not enough evidence about the safety and effectiveness of amantadine for people with dyskinesia in Parkinson’s disease.” Though a physician might not routinely recommend the medication, when a patient sits in front of you complaining of obvious debilitating dyskinesia, any relief is helpful. A study of PD patients with severe dyskinesia found those given amantadine were significantly improved over baseline at days 15 and 30 of the investigation. Over the next seven months the average dyskinesia score returned to baseline for all those given the drug. After withdrawal of the medication two patients experienced episodes of severe body heat, which ceased with reintroduction of the drug, and a slower more gradual withdrawal. Side effects of the medication include confusion, hallucinations, tachycardia, and swelling of the feet. Such fallout is similar to all anti-parkinson drugs, and the doctor states it is actually one of the more benign drugs.

The Star Patient

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It may be the color of her shirt, a cool placid blue, she appears serene as she settles in the chair. With pearly white thick hair and blue eyes, she holds a brown bottle in her hand. The doctor is speaking, reading the notes from the last office visit, six months ago. He reviews for the medical student, an pretty Indian-looking woman, with long dark hair and glasses who utters,

“Hmm” at appropriate spaces in the physician’s monologue. He enlightens those in the room; patients not hampered by their symptoms do not take medications, other than drugs that have some preventative value. Coenzyme Q10 is available over the counter, though the pills become expensive when taken at the recommended dose, 1200 mg/day. The patient sits across from the physician, and when he mentions the coenzyme, she declares it has been effective for her. She began taking the pills three years ago when she was first diagnosed with Parkinson’s disease. Rather than buy them from the neighborhood health food shop she buys her coenzyme online, from Willner Chemists, in New York City. Sometimes the company has sizable discounts. Also important, the 400 mg dose pills she takes is large and soft, so it slides down the throat easily.

At last the doctor asks, how is she? She is very well. How rare. Her face glows and she smiles and speaks about her life. She enjoys tutoring children, she does Tai Chi, plays ping-pong, has a stationary bike she uses daily. Her painting and calligraphy classes begin soon. She eats well. Sleep is tricky. Her spouse snores. When she is eating well she sleeps deeply. Since diagnosis though she has gained twenty pounds. Her closet is home to size eight clothes and she would like to weigh less, which means sleeping may become more of an issue.

The doctor states three years from diagnosis, the average patient’s symptoms have become bilateral. On physical examination the muscles surrounding her left wrist are supple and loose. While speaking the doctor catches a glimpse of the tremor in the patient’s right hand. The patient claims she can attenuate the tremor when it begins. In his book about Parkinson’s disease, Michael J. Fox talks about when he lost the ability to quell the tremor in his hand.

The patient remarks her advice to those with the illness,

“Tell nobody.” Her family is unaware of her diagnosis and they went on vacation together. Only her spouse knows about her illness. Before leaving she asks whether there is anything else she might do to keep the disease at bay. It seems she is doing everything she can, even her attitude is light. About exercising, the doctor recommends getting her heart rate up to eighty percent of her maximum, for her age, and keeping it there, for an increasing number of minutes, at least three times a week.

Driving Privilege

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The physician asked him to undergo a driving evaluation. Performed by an occupational therapist, the pre-road evaluation checks mobility, reaction times and coordination. They assess the ability to move the foot from the accelerator and brake pedal while maintaining the hands on the steering wheel. Cognition, memory, judgment, attention, self-awareness and perception are recorded to determine if these areas have an impact on driving. The paper he received from the woman told him he had failed and his driving skills were sub-standard. He has distinct feelings about this woman, and reports his eyes are better than they were six months ago.

From section 322.126 (2), (3) the Florida state government mandates that “Any physician, person, or agency having knowledge of any licensed driver’s or applicant’s mental or physical disability to drive…is authorized to report such knowledge to the Department of Highway Safety and Motor Vehicles… The reports authorized by this section shall be confidential… No civil or criminal action may be brought against any physician, person or agency who provides the information herein.”

Once the paperwork is submitted it is screened and forwarded to investigators who work for the division of motor vehicles. They contact the driver and submit their findings to the medical review section in Tallahassee. Investigators may interview family members, neighbors, or the driver’s physician as part of the investigation. As a result, drivers may be requested to submit a medical report from their physician, or they may be required to report to a driver license office for re-testing. If the investigator does not find any substance or validity to the complaint, no further action is taken.

The American Medical Association urges physicians to consult patients and their families about voluntarily giving up the ability to drive, and the risks they take when they continue driving. Changing driving habits and limiting driving may help. If the person steadfastly refuses to give up driving, when proven to be unsafe, physicians are urged to report their patient to the Department of Motor Vehicles, after telling them they are required to do so. The AMA states it is the duty and obligation of the doctor, to report unsafe drivers.

In Oregon, any answer of, Yes to the following three questions will result in the withdrawal of driving privileges:

1. Do you have a vision condition or impairment that has not been corrected by glasses, contacts or surgery that affects your ability to drive safely?

2. Do you have any physical or mental conditions or impairments that affect your ability to drive safely?

3. Do you use alcohol, inhalants, or controlled substances to a degree that affects your ability to drive safely?

In Oregon, the state law mandates that the primary care provider must report an unsafe driver to the DMV. The office evaluates each mandatory report and if certain criteria are met, the person’s driver license is suspended. The individual receives a Notice of Suspension in the mail, and their license suspension takes effect 5 days from the date on the notice.

Families may agonize about how to wrestle the car keys from their loved one. There are safe guards in place that protect the public from unsafe drivers, we can only hope the primary care physicians act on their duty and obligation.

Eighteen Years

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For eighteen years she’s had PD, and she’s been seeing the doctor since she was first diagnosed. She had been married then, living in the Keys with her spouse where they owned a restaurant. That was some time ago and now she lives on the east coast of the state and makes the three hour journey with a friend who drives. They have a birthday party to attend later in the day. She uses a rolling three- wheeled walker when she walks. It has a large pocket where she stashes all the things she might need.

She mentions when she was a child she used to be claustrophobic. She had to sit in the passenger seat in the front of the car, because sitting in the middle, or in the very back of the car made her feel as though she can’t breathe. She was the youngest and smallest child in the family and yet she was relegated to the seat in front. She still gets the sensation these days, and feels it may be worsening. The doctor states Parkinson’s disease probably has little to do with the feeling. She stands and paces in the small room, then sits back down. Her blood pressure is quite high today. The systolic a bit over 170. The doctor checks her past pressures and notes they have become progressively higher over time. He urges her to take her pressure regularly, and to make sure her general physician is aware of her numbers.

Without dyskinesia, she has occasional tremor in both hands. It doesn’t stop her from activities. She played bingo the previous evening. Her symptoms are well controlled with morning Parcopa, the dissolvable form of Sinemet, and the Neupro patch. She gets the original formulation, flown in from England monthly and kept on ice until it gets to her door. She keeps the medication in the refrigerator. Every month she pays five hundred dollars. She concedes it took two months to get her medications under control when she began using the patch. She was not able to immediately cut the intake of Sinemet, but she’s become accustomed to it.

The autonomic signs of the illness appear in flashes of sweating, somewhat akin to what menopausal women experience. She knows to eat fiber rich food, for her bowels. Her frequent urination was diagnosed previously. She claims the issue doesn’t bother her. Her voice lacks the breathy quality many patients with the disease acquire.

The doctor would like to add a mild antidepressant to her regimen of medications. It will also improve her sleep quality, as she is unable to take Seroquel without feeling as though she has been completely anesthetized. She claims to be able to feel her medication begin taking affect in her body. The sensation begins in the toes and works upwards, as though a current, covering her entire body. Other times she will feel her muscles suddenly slacken from the constant tension that keeps them rigid.

The Golfer

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The wife of the patient spoke with the nurse during the week, requesting an early appointment. She is worried about his lack of sleep, his restlessness and feels he may be taking too much medication. She discovered he is gambling on the internet into the wee hours of the morning, when he finally puts his head on the pillow and gets several hours of sleep.

The couple is well dressed, amiable and unaccustomed to the small exam rooms which make up the movement disorder clinic. The husband is a recently retired executive, and wears dark grey pants a polo shirt and loafers. He and two others spent the morning on the golf course. He is tanned, his grey hair curly and slightly long. His symptoms are well masked, though he mentions his left hand was moving earlier in the day. He and his playing partners caddy for themselves and walk the course. They spend most of the morning there, allowing others to move past them.

The doctor comments retirement seems to agree with him, but the patient shakes his head commenting he misses work. Having something substantial to occupy his mind is what he misses most and he looks at his wife as he mentions this is why he likes on-line poker. It’s a mental challenge, and he enjoys it. The wife looks at the physician for his opinion, but he gives no judgment, though he points out the behavior worries your spouse. He shrugs his shoulders and states they have already had this conversation, earlier in the day. He does not intend to lose their savings or cash in any of their investments.

The doctor asks about his current medication regimen. The patient is taking 50/200mg of Sinemet four times per day, in addition to Mirapex .5mg. He also has a prescription for Parcopa 25/100mg which he used to take while traveling, to ensure he would be able to get through early morning meetings. He takes it now sometimes when he has to be on the golf course early. It’s been six years since his diagnosis, and the doctor asks whether his symptoms have moved to the right side. The patient nods his head, thinking. He’s noticed sometimes his right foot seems clumsier, especially on uneven ground, like the rolling hills at his favorite park. He keeps the Parcopa in his pocket when he plays golf, in case he needs a bit more. How often does he play? In the past week, he’s been three times, though he’s usually there only twice. The course gets expensive.

Asking about dyskinesia, the wife smiles faintly. The patient seems unaware of the small jerk to his head. The spouse asks if he cuts back on the medications, will the involuntary movements disappear? The physician explains Sinemet brings on such fall out and half of all patients develop such motions in two to five years following the beginning of treatment. The patient comments the movements are minor and don’t bother him too much. Sleeping, rather trying to sleep, bothers him a lot. He concedes he’s never slept much. Growing up he heard his brothers snoring long before he even felt tired. As a child he would sit up with his grandmother, watching the late show. His grandmother was an insomniac.

The physician mentions Seroquel, asserting that like a diet rich in fruit and vegetables provides the nutrition for health, so does a night’s rest. The patient looks doubtful. His grandmother lived to be ninety-seven.

Patient Choices

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It’s been eight years since her diagnosis of PD. Her back is beginning to round downwards and she sticks her head forward, tilting her eyes up to make contact with the doctor’s face. In contrast, her daughter sits upright, her dark hair graying at the temples.

The doctor tells her she lives in a different age. People with Parkinson’s disease are not relegated to the corner chair where their silence is less noticeable. Sinemet will allow her to feel looser, breathe easier, her limbs would be less rigid, and her movements would increase in speed. Her blue eyes stare at him, not blinking. She knows all the words he will say, she has heard them all before, as have her family. She slowly raises her index finger upward, and the tremor evident when at rest disappears. Her voice is just audible. Those present in the room seem to draw themselves forward to hear her.

“No medicines. Not today.” She slowly motions with her bent finger back and forth and the doctor sighs. He addresses the daughter, asking what concerns she has. The daughter looks at her mother before speaking, turning her torso to face her mother as she reports,

“Mother fell several weeks ago. Fortunately, there were objects that broke her fall… but she was badly bruised and spent several hours on the floor, before someone arrived home.”

The doctor looks over at his previous notes and asks about the walker. The daughter shakes her head. She had been using the walker earlier in the year, but gave it up when she no longer felt the urge to walk down the street. Now she only uses it when they have to go out, mostly to visit doctors. Inside the house, she prefers to use the furniture, walls and cabinetry to steady herself when she moves around. Her daughter lifts the hem of her mother’s skirt, showing the bruise that remains, extending down her pale calf. The doctor nods and comments she should really be using a wheelchair, and asks whether their home might accommodate the device. The daughter looks indecisive, and gazes at her mother asking whether she would use a wheelchair. The mother’s eyes meet hers and she wags her head in short slow, abbreviated motions.

The doctor continues asking all the questions regard sleep, eating, bowel and bladder function. He rises from behind his desk and comes to stand in front of the small bent woman. He takes her slender arm and attempts to move it to and fro, but there is no movement available in her arm muscles. He wonders aloud how she is able to walk, and the daughter notes it took them some time to make it to the clinic from the valet downstairs. He asks her to gaze at his finger, which he holds in front of her face, and then moves it to the side. Her eyes make short staccato motions as they attempt to keep up with the moving digit of the physician.

He returns to his chair without speaking and gazes into the computer screen, noting she has lost seven pounds since her last appointment, six months prior. He directs his gaze at her bent head, which she has turned towards her chest and he comments it is her right to refuse medication, though he knows it will help her. He stands and extends his hand to the daughter, who stands and thanks him.

Getting old fast

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The nurse pushes his wheelchair into the small room. He’s smiling. The doctor comments he doesn’t have the face of a person with Parkinson’s disease. He has expression and movement in his features.

He reviews his past notes with the patient, explaining what he believes he suffers from; lower body parkinsonism brought on by chronic hypertension, diabetes and microvascular disease. With decreased sensation in his feet, a consequence of neuropathies in his legs, his balance and gait are affected. His wife reports he has fallen twice in the past six months and both times they had to call medics to help him from the floor.

Though he had been taking levodopa he has weaned from it, when he concluded it had no affect on the gait and balance problem he contends with. Behind the desk, the physician tells him there is no medication he can recommend for his problems with walking. The medications given to those with idiopathic PD are of little help to him, an anticholinergic medicine would increase the fogginess in his mind and increase urinary flow. With prostatic hypertrophy he has to be cautious about urinary function. Essentially, there is little he can advise. The wife nods and comments they have kept their appointment to check whether something new has presented, that would be useful to him.

The doctor nods and comments physical therapy is important. Continuing the exercises independently will help him retain strength in his lower body. His wife comments it’s very hard to motivate him and he gets angry at her for badgering him about exercise. The doctor nods. Five minutes every day for a week would be a conceivable start. Increasing the time weekly as he gets used to the idea, he will begin to see changes in his body.

So what if the patient begins exercising and gets seriously involved, dedicating time daily. Will this begin to repair the neuropathy he has in both legs? Damaged nerves can repair. The man has diabetes. Will a new diet and exercise regimen change what ails this guy? He is only sixty-seven. He is perhaps twenty pounds overweight. His wife too, is heavy. Microvascular disease has a hereditary component, but what if he changes his habits?

The doctor notes if he can regain strength in his legs he’ll be able to get back to golfing. The patient mentions the pool in their community, and the doctor comments he would recommend wearing some sort of flotation device, in case he gets a cramp. Anyway to increase blood flow to the brain, would be beneficial. The wife pushes her spouse from the examination room, her hand full of a new prescription for Zoloft and physical therapy. The husband comments one of his old golf buddies won the Master’s competition.

Latin Couple

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The husband pushes his wife in the wheelchair. They greet the physician preferring to speak in Spanish. They have no objection to the medical student, foreign doctor and myself witnessing their appointment. The wife remains in the wheelchair while her spouse takes a seat, and pulls a sheet from his breast pocket. Her hair is colored a light auburn and set. Like her hair, her nails and hands are cared for in detail. In the chair she moves spontaneously and continually. The doctor asks how much of the day does she experiences dyskinesia. She says she has about an hour where she is free of the uncontrollable movements. He shakes his head and reviews the list of medications the spouse has given him.

The two men confer in Spanish about how best to try and curtail the dyskinesia. The physician recommends they begin cutting back on the Sinemet while increasing the dopamine agonist, Ropinerole. The Neupro patch would be ideal for her. The husband states she has never tried the patch. At night she takes Seroquel to sleep, along with Mirtazapine which helps increase the appetite, as well as providing an antidepressant effect. The spouse mentions she only takes it sporadically and the physician states she should take it nightly to have an effect on her weight. Many women refuse to take the drug, for fear they will gain weight, and the patient scoffs at this. She continues to lose weight. The doctor says most PD patients begin losing weight. Swallowing problems make eating more difficult. The muscles involved in chewing fatigue, and the random movements of dyskinesia burn calories.

The husband mentions he gives his wife her pills, and would like to know whether they can switch to the generic form of Seroquel, quetiapine. The cost of generic will alleviate some of the stress in affording the various medications she takes daily. The physician wonders whether to switch to a 50 milligram pill, and have the spouse part the pill in two, rather than write a new prescription for two 25 milligram tablets. The spouse prefers the smaller dose. Breaking the larger pill in two gets complicated. Sometimes, most times, it doesn’t split evenly and he worries whether his wife is getting sufficient medication.

Before they rise to leave the physician asks whether they have undergone a swallowing evaluation. The husband nods, and the physician reiterates to the patient she needs to eat slowly, chew completely and cut her food into small pieces to avoid inhaling her calories. They will return in six months.

The patient and her spouse have been coming to see the doctor since before 2003, when all records went electronic. The doctor reads the earliest note he has from the patient. In 2003 he noted she suffered with dyskinesia. At that time he used high doses of the drug Pergolide to subdue unwanted dyskinesia. The drug was subsequently discovered to cause fibrosis of the heart valves in a minority of patients. On reflection, the doctor comments many patients were helped by the medication. Now he doesn’t prescribe the medication at all.

The Retired Ophthalmologist

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He is subdued, well- groomed and has no objection to observers in the room. The doctor summarizes his last note, written six months earlier when the symptoms were confined to the left side of the patient’s body. Driving, hands on the steering wheel, his right hand moves along with the tremor in his left hand. That’s the only time he’s noticed tremor on the right. Bilateral symptoms indicate stage two illness. Six months ago the doctor documented, he was stage one, still the honeymoon period.

The general practitioner recently decreased the hypertensive medication he takes. Since then, he’s noticed his symptoms seem worse. He gave up his profession of forty-two years, when he felt it wise to arrive an hour early and review the charts of the previous day, to see whether he had made errors. He had trouble speaking with his patients. His voice became very soft, somewhat slurred, and people found it hard to understand him. Questioning his ability to perform as he had earlier, he sold the practice to a younger man. It’s been several months since he gave up his work and he’s been searching for ways to occupy himself during the day. He’s discovered a yoga class, attending three times a week. He exercises. The activity is not enough. A void exists where his work used to be.

The doctor notes most people with PD, the vast majority, begin taking antidepressants. Some experts even posit depression may be an integral part of the illness. The patient comments he took the antidepressant, nortryptiline several times and noticed it seemed to make him more constipated. The physician comments the medicine is an “old- fashioned” tricyclic anti-depressant with mild anti-cholinergic effects, which would benefit him. For its affects to be felt, the medication has to be taken regularly for more than a month. The patient laughs at this.

The doctor asks about sleep and the patient reveals he has occasional nightmares. In the last one, someone chases him. He turns in the dream, and in bed, and punches the guy. His fist hits the headboard. The skin of his knuckles split. His wife has chosen to sleep in another bedroom. The doctor nods, and notes that this sleep problem is called rapid eye-movement sleep behavior disorder. Most people with PD have unusual sleep architecture; most people when dreaming are incapable of moving their body. Those with the disorder are able to move and perform, acting out the scenarios of their dreams. Sleep walking and talking are other examples. To increase the patient’s sleep quality and quantity, the physician recommends Seroquel at very low doses, to be increased in dose until he can sleep at least six hours without waking up. The patient agrees he would like to sleep more. Seroquel, the Dr. explains, is considered a novel tranquilizer developed to treat psychosis, but is very effective in treating PD patients who have vivid nightmares and even visual hallucinations. Addressing his voice problem, the doctor comments a speech therapist would be able to work with him to increase volume and the clarity of his words. The man nods, he will add this to the vast span of time he has open in his afternoons.

Illness from the Islands

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A psychiatrist in the Virgin Islands treated the patient for fourteen years. When the movement disorder specialist looked at the list of medications, he was impressed and satisfied with the regimen. Only after the patient had fallen, spent a week in the hospital then been transferred to a rehabilitation facility where he spent most of his time in bed, did his health appear to be threatened. A family member commented he couldn’t lift himself up from a lying position, when he first arrived in the States. With family care and physical therapy, he appeared at the clinic using a walker.

Seeking to know more of the patient’s history, the doctor asked about the first symptoms of illness. Tremor began in the right hand and after two years or so, spread to the left hand. The doctor commented two types of PD are generally recognized, the tremor dominant type and the rigid, akinetic kind. He commented the patient is lucky to have the tremor dominant type, though the illness is more apparent, it also progresses more slowly. On physical examination, the physician noted the patient was quite stiff in the neck and torso, but an increased level of Sinemet would relieve some of this. Happy the patient was having physical therapy, he recommended therapy continue until Medicare refused to cover the cost.

In addition to gradually increasing the level of Sinemet, for which he drew out a chart for the family, the doctor suggested the patient begin using the medication, Ditropan at night. The drug increases the bladder’s holding capacity, so one can sleep an entire night without the urge to urinate. On the cautious side, when given with other drugs, specifically Artane, it may increase a patient’s risk of acquiring a bladder infection. The physician warned the patient and family to be aware of this, and cut the patient’s dose of Artane to avoid possible problems. An adequate dose of Seroquel at night would ensure the patient falls asleep and remains so until the following morning. He stressed the patient avoid daytime napping and make an effort to exercise daily.

The doctor, not feeling rushed, as he allocates an hour for new patients, digressed a bit on medications. Artane, he stated, is one of the oldest drugs given to those with PD and is quite effective for tremor. To its detriment, the medication can interfere with short-term memory in patients over the age of 60, worsens constipation and interferes with bladder function. Sinemet, so named for sin emesis- Latin for without vomit, has three potential side effects- nausea; that’s why it’s best to take the drug with food, it can cause drops in blood pressure, and it may bring on hallucinations, especially in patients not sleeping well at night.

The physician urged the patient continue taking Mirapex and amantadine as he had previous been instructed. After the change in dosage of Sinemet, which would take approximately a month to fully accomplish, they could tweek the doses of other medications. In addition, he advised the patient to avoid protein- rich foods throughout the day, eating instead a diet rich in fruit, vegetables, and carbohydrates. Eating foods that lack amino acids enables Sinemet to act effectively and reduce symptoms of illness. At dinner, with the idea the evening will be quiet, spent reading or watching television and not line dancing, the patient should take the daily requirement of protein. The neutral amino acids in protein will interfere with the transport of levodopa from blood to brain, so the patient is apt to feel slower and not have the same response to medications, as when taken without protein during the day. To manage the illness effectively, it seems best to plan ahead of time what foods to eat at a particular meal. The doctor stressed he would like the patient to return in three months time, but that if problems arose to call his assistant, and he provided them a card with the appropriate office number.


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