He’s Latin, the kind of patient that when I learn he is sixty- one, I am surprised, he could be forty- seven. His hair is still mostly dark and his daughter- in- law accompanies him, when he comes in for a second opinion on his diagnosis. Shuffling gait and increased muscle stiffness are the two symptoms that initially warranted a physician’s visit. When the first neurologist gave him a scant ten minutes of his time, he sought a second opinion.
The disease is apparent in the lack of expression in his face. An attractive man with dark features, his face lacks the spontaneous motion typical of healthy people; even the fixed way he holds his head indicates some level of rigidity. He has had three surgeries on his back and neck due to collapsed and herniated disks and his brisk and spreading reflexes indicate the long cortico-spinal tracts running through the spinal cord were injured at a previous time. His gait also is peculiarly parkinsonian. Though he lifts his feet adequately, his torso and in particular his arms, fail to oscillate with the motion of his legs and feet. When he gets to the wall and needs to turn around, he takes several steps, rather than turning on his heel and swiveling his trunk.
The previous neurologist gave him a prescription for Stalevo. The dose was either too low to see any improvement in symptoms, or the proteins in his diet blocked the conversion of levodopa to dopamine in the brain. The specialist in movement disorders cautions the patient, telling him dietary proteins; especially those in milk interfere with the way medicine gets transported to the brain. If he is unable or unwilling to reduce the morning and lunchtime proteins, he will need to take a larger dose of the medication to see its effect upon his muscles. With this in mind, the physician writes out a chart of how to increase the dosage of medication. Every three days the patient is to increase the dose by half a tablet, at one meal. When he sees the medication is enabling him to move more freely throughout entire day, he is to cease increasing the dose, and stay at that level of medication. The doctor indicates, this is a stairway in which you can go forward and go backward, to attain the appropriate dose.
In addition to regular medications, the physician recommends the patient also use an over the counter supplement, enzyme CoQ10. Laboratory studies indicated the antioxidant at doses of 1200 mg/per day, were capable of slowing the process of disease. Though few patients can afford to buy such high levels of the supplement, they may receive some health benefits from a lower dose; the doctor indicates 300mg/day.
Other issues concern the patient. He worries about his constipation. The physician recommends changing the diet to include a large amount of fiber and copious water, as well as a stool softener. A previous MRI indicated the patient has decreased blood flow to the brain. For this, he received a prescription for persantine, which decreases the stickiness of platelets, thereby increasing blood flow. The specialist also notes that with time Parkinson’s disease affects the autonomic nervous system, which includes bowel, bladder and sexual function. He states many of his patients ask for a prescription for Viagra, and he has no problem prescribing it, as it doesn’t interfere with any of the medications and he is not taking medications to prevent angina. The specialist asks the patient to make another appointment in four months, so he can see how he is faring.
The patient arrives early, a guy in uniform pushing his wheelchair. His head looks like it is attached directly to his torso; it’s called a kypho- scoliosis. He is only sixty- six, but his body says much older. In 1995, a physician diagnosed him with Parkinson’s disease. He recalls a tremor in his right hand that improved with the Sinemet he received a prescription for. The specialist in movement disorders is skeptical he truly suffers from Parkinson’s disease. He asks the patient to recall the sequence of events that brought him to a diagnosis with the neurological condition.
He’s a bit hazing. His speech is whispery, and the three in the room bend inwards to understand what he says. Some things he is sure of. He broke his neck when he was about fifty years of age, which coincides with the time of diagnosis with PD. The physician wonders whether the weakness and subsequent atrophy of the right arm was due to the cervical myelopathy, a stroke or cardiovascular disease. However the insult occurred, his right arm is fixed in a rigid position, bent at the side of his body, with the right hand tightly caught in a fist. When the doctor asks him to straighten his arms out in front of his body, his left arm cooperates. The right arm maintains its flexed position inward, and he is unable to tap his index finger and thumb together. He reports he used to be right handed.
Some things he is clearer about. The last time the hospital admitted him, he suffered from a urinary tract infection, fecal impaction, hypertension, chronic hepatitis C, an ulcer on his buttocks, and pneumonia. It was then that the staff recognized the prior diagnosis of Parkinson’s disease. This seems to be the reason for his visit this morning, to confirm whether the diagnosis has merit and resolve whether he should be taking Sinemet, and if so, what dose.
The doctor peruses the patient’s records that appear on the computer monitor. He informs the medical student and myself the patient has undergone multiple surgeries on his spinal column, to fuse and in some places to cut the bony growths that pressed upon his spinal cord. Areas fused on the spinal cord were bound with metal anteriorly, so he will never be able to undergo an MRI.
The physician begins the physical exam noting first the patient has no cogging of his muscles. The type of stiffness he feels is spastic, unlike that seen in PD. The patient has no reflexes in either the lower or upper extremities. Wondering aloud, the doctor asks the patient whether he feels the vibration of the tuning fork, and the patient reports his left leg scarcely feels the sensation. This fact seems to confirm the patient also suffers from a neuropathy. Hopeful, the patient states he is able to walk still, with a walker. The cause of the neuropathy may have been his low- functioning thyroid, or uremia. It bothers the physician that the patient has been using Sinemet for the last fifteen years and he suffers from no dyskinesia. It indicates he does not suffer from depletion of dopamine, meaning he does not have Parkinsonism. The doctor prescribes physical therapy and the patient wonders whether he will ever be allowed out of the assisted living facility. The doctor gazes at him directly and declares he is severely compromised, has but one useful hand and is at risk of falling.
I notice the beauty in her face right away. She has an expansive aura and emanates a positive sense. Though as she sits, dyskinesia makes her turn in her chair, twisting her arms and legs and then turning her head to one side. The involuntary movements are what trouble her the most, and have been for some years. She wears a cotton blouse with cutwork, and her hair is tastefully brown so she appears much younger than the seventy- some years. She has come for her six- month evaluation.
The physician states the patient was diagnosed approximately fifteen years ago, with dyskinesia beginning during her eighth year of the illness. The patient enlightens the doctor with her regimen of medication. She takes Sinemet around the clock, waking throughout the evening roughly every two hours. The feeling of wearing- off causes her to panic, and she feels like she cannot breathe. Medication throughout the night results in poor sleep quality. The specialist feels she is over- medicated, and recommends she begin taking Seroquel at night. With several hours of sleep, the world appears a saner place. The patient also suffers from fibromyalgia, rheumatoid arthritis, and depression three other reasons the patient requires time in total body relaxation.
The physician recommends deep brain stimulation surgery in very specific situations and in this patient’s case, he thinks the intervention might bring considerable relief from the complex motor fluctuations with dyskinesias. His second recommendation is using the Neupro patch. The patch is placed on areas of the body not prone to sweating, and the area is changed daily to avoid skin reactions. Rotigitine (the generic name for Neupro), is a drug that mimics the actions of dopamine in the brain and does not require transformation into dopamine like levodopa (Sinemet). It is absorbed slowly through the skin, rather than through the intestines. It has a much longer effect and may be effective in people who suffer from motor fluctuations, or variability in their response to medication.
In addition to the patch the specialist also recommends the patient begin using a “liquid Sinemet” formula mixing her Sinemet in the morning with some vitamin C to stabilize and maintain freshness of the solution and sufficient water. The recipe is available on line. She is to sip the concoction every few hours during the day to maintain the level of dopamine at a nearly steady- state, thereby reducing the times when she may be wearing- off.
The doctor is pleased the patient has appeared with a caregiver, though she is only present four hours daily. When he spoke with the patient’s daughter, she conveyed some interest in having her mother placed in an adult – living facility, where she would get more attention. The patient reports she is quite fine, and independent on her own. The doctor recommends she return in six months time, when she can describe how well she sleeps.
He is as stiff as a plank of wood in the chair he sits in, and his voice is whispery ethereal. The wife responds when the doctor asks whether they are present to confirm a previous diagnosis. She nods enthusiastically and takes off on an explanation of their experience with a previous neurologist who put the patient on ropinirole. The physician nods and comments what he would really like to know is what the patient experienced as the first symptom that worried him and thought he should seek a doctor. The patient responds in a breathy whisper, he noticed weakness in his left side and felt he was dragging his left foot. His idea was confirmed when he detected the heel of his left sneaker had worn considerably more than the right. Then his voice changed. People on the phone have a hard time comprehending his words. The specialist admits he can see from the lack of adventitious movements, the patient suffers from a parkinsonian syndrome. He comments most people typically move about spontaneously, adjusting their legs, moving their hands and face, blinking and moving their glasses or repositioning themselves in the chair. People with Parkinson’s disease lose all these extraneous actions.
The doctor explains Parkinson’s disease may be divided into those that suffer predominantly from a rigid- akinetic form, and those whose illness is tremor- dominant. Those who partition the illness into such categories have found the rigid- akinetic form of disease typically carries a worse prognosis than the tremor dominant form, with a more aggressive course of disability and more dementia. Although the disease affects the dopamine- rich cells of the basal ganglia, causing them to die off in great numbers, the illness also affects other neurotransmitters. Noradrenalin, involved in the function of bowel, bladder and temperature regulation, also becomes depleted and patients usually are beset with problems of urinary frequency, constipation and episodes of feeling intensely hot and cold. Such problems however, are usually not part of the scenario so early in the course of illness.
When the patient has become comfortable on the examination table, the physician begins the physical exam beginning with an assessment of the patient’s eye movements. Though range of motion is full, the muscles that move the eyes show ratchet- like jerky motion, when the patient follows the pen in the physician’s hand. The good news is he is able to gaze fully upwards and downwards. There is marked cogging in the muscles of the left arm, with the left side showing more impairment than the right, and the physician comments this is what one might expect in Parkinson’s disease. The dexterity and the amplitude of movements of the left hand are also more affected than the right, though when resting his hands in his lap, there is only the finest of tremors in the left hand. The physician finds the reflexes in the patient’s legs are brisk, and spread to the other side of the body. He checks the reflexes of the arm; they are brisk as well. He comments brisk reflexes indicate the long, cortical spinal tracks, which course down the spinal cord, have lost their inhibition, in the cortex. He checks the reflex of the jaw, which is intact and normal, and speculates the patient may have some osteo- degenerative changes that are impinging on the long nerves in his spine, at the level of his neck.
The doctor draws out a chart, which illustrates the manner in which he is to add a half- tablet, every three days to the daily dosage of Sinemet. He notes the chart is a stairway in which the patient will go up, until he eventually arrives upon a dose where he feels good, and his movements are full. If he feels light- headed on a dose, he may elect to hold at that level, or even back off a stair, to a lower dose. He gives the patient and wife the chart, prescriptions for Sinemet, Seroquel for sleep and physical therapy and remarks he would like to see them back again in six months, to see how things have developed.
Six months have passed and the patient returns for a follow-up visit, to assess symptoms and make any changes in his treatment plan. Hallucinations are no longer a problem. Adding Seroquel seems to have alleviated that issue. The specialist in movement disorders notices the physician at the nursing home has added an anti-cholinergic drug to the list of medications the older man takes. The prescription will give the patient a drier mouth, so he will not drool, but it will also increase the likelihood of more hallucinations despite seroquel. In addition, it will worsen memory problems and likely result in difficulties with empyting the bladder. He writes a note in the patient’s chart, advising the medication be discontinued.
On the last visit, the physician recommended the patient have an MRI to determine whether he might have a lesion in the right parietal lobe of his brain because of spatial orientation difficulties. Today, the MRI showed moderate generalized atrophy (shrinkage) of his brain. As he lives in an assisted living facility, the patient brings a nurse along with him when he travels. On his right wrist he wears a plastic ID band.
The doctor asks whether he is sleeping better, and if the tremor he experienced continues to bother him. The patient nods his head, reporting sleeping has improved, and the movements he used to have are a bit better. The doctor replies the medication (levodopa/carbidopa) is probably competing for entry into brain with the proteins in his diet. This information sparks a response and the patient reports a blood test reported his serum albumin was low and he now takes a protein supplement, twice a day. Nodding, the physician states we will probably have to increase the dose of Sinemet, for him to see an effect on his tremor.
The doctor adjusts the patient’s chair, turning it sideways so he can access the patient as he does a physical exam. Feeling the movement of the arm muscles as he opens and closes the arm at the elbow the physician reports the patient lacks the ratchet- like movement in the joint, so typical of people with PD. Performing fine movements of the hand, the patient has more trouble with his left side, with movements being less dexterous. He is unable to copy a movement the doctor performs, but is able to replicate the actions of screwing in a light bulb, and hammering a nail into the wall; the doctor reports the patient suffers from a motor apraxia- but not an ideo-motor apraxia.
He slips the disc into the computer and waits for the image of the MRI to register on the computer. The patient comments the MRI apparatus was quite loud and the doctor replies the time he had an MRI he felt uncomfortable within the machine’s noisy core. The images of the brain show overall moderate atrophy extending into the cerebellum. The patient asks whether the MRI confirms his diagnosis of parkinsonism, and the doctor replies he thinks the patient suffers from a variant of Parkinson’s disease, Lewy Body disease which frequently presents first with the patient having hallucinations.
Brown and weathered from exposure to the sun, the patient explains the sensation in his legs and arms feels like his nerves are stretching. At night, he can’t sleep. The movement disorder specialist recognizes restless legs syndrome, and the wife agrees, she has heard the diagnosis before, adding her spouse also suffers from a neuropathy in both legs. Her dark hair contrasts sharply with her pale skin without wrinkles, and her blue eyes are surprising. With diabetes, high blood pressure, prostate cancer, eight surgeries in three years and mild cognitive impairment, the wife keeps a file folder and small notebook to track changes in medications and other things.
On physical exam, the doctor finds no rigidity in the upper body. The fine movements of his hand are wide and ample, and do not decrease in size, as they would when someone suffers from Parkinson’s disease. The patient has no reflexes in the legs, and has lost some ability to detect vibration and heat. The doctor notes he has the classic, “stocking and glove” presentation of neuropathy; meaning the patient has sensory changes in those areas. The spouse of the patient provides more information, explaining the problem extends to others in the family; both of their girls suffer from aspects of the same problem, as did the patient’s father and his grandfather.
The physician explains the problem seems to be a hereditary type of neuropathy, and there are many. He asks whether the patient has ever undergone nerve conduction studies, and the patient shakes his head, negative. What would help, he proposes, is for the patient to see a physician whose expertise is in nerve conduction. By taking a biopsy of a piece of nerve, the laboratory would be able to distinguish what type of neuropathy he suffers from, and that presents in the family in an autosomal dominant fashion. Whether it can be treated, is another problem.
Addressing the patient’s lack of sleep, the physician recommends exchanging an antidepressant, one of the older forms that has a heavy sedation affect, for the Lunesta which is habit forming and apparently of little use. He will take the new medication in the evening, along with extended- release Requip, which might alleviate some of the symptoms of restlessness in his limbs, and he provides the spouse with a few sample bottles, to try. He prints out the referral for nerve conduction studies, with another member of the faculty and states he would like them to return in six months.
The onset of tremor began only three to four weeks ago. It’s worse in the right arm, yet the patient can quiet the shaking by changing position. She states she has trouble following the events occurring in novels and feels at a disadvantage during meetings of her book club. The movement of her arms worsens under anxiety, and her children are converging at her home over the holidays. Worrying they will witness some decrease in her abilities, she feels embarrassed and self- conscious about the recent changes in her health.
A physician as well, her spouse allows her ample time to speak for herself. Presumably married for many years, she has come to lean on his judgment to relate the changes in her condition, yet she recounts an evening when she experienced a hallucinatory episode in which she found herself in a garden with flowers so vivid she might reach out and touch them. The only incidence of hallucinations she reports, the movement disorder specialist feels confident in discounting a diagnosis of dementia with Lewy bodies, in which cognitive changes and hallucinations occur simultaneously or precede other symptoms typical of Parkinson’s disease. The specialist posits tremor may come as a result of other health conditions, or as a side effect of a medication. He is especially interested in Amiodarone, and scans the web for documentation of the side effects, finding 40% of people taking the medication experience neurological sequelae, including neuropathies. At such a high percentage, he urges the pair to wean from the drug.
Physical examination reveals a hint of cogwheel rigidity in the muscles of her arms, though her head is supple and unaffected by stiffness. The dexterity of her hand movements, the specialist thinks is slightly slow. Eliciting reflexes, the doctor finds brisk responses, not typical of Parkinsonism, but suggesting damage to the brain resulting from microvascular disease brought on by long- term high blood pressure or diabetes. Disease from such a source may produce a series of small microvascular strokes, which might be evident on an MRI. To determine whether she suffers from a slight neuropathy, the doctor tests the patient’s ability to sense sharp and dull sensations, as well as vibration. Some loss of vibratory awareness coincides with decreased position sense, and holds merit, as the patient has suffered from falls. The worst of these resulted in a subdural hematoma, a bleed into the intracranial space.
In the end, the diagnosis of Parkinson’s disease can be determined by the patient’s response to levodopa. If the patient feels some amelioration of symptoms, while taking a therapeutic dose of medication without competing proteins in the diet, which would vie for the terminals into the brain, than one may surmise the patient suffers from a deficit of dopamine. The specialist in movement disorders outlines a method of increasing medication for when the patient feels ready to consider a trial of Sinemet, until then she will undergo a blood test for thyroid function, and diabetes and consult with a neuropsychologist who will scrutinize her cognitive function.
Mother the patient sits securely in the wheelchair. Her son accompanies them. Twenty years ago, a drunk driver hit him, head- on. The car crash accident left him blind, brain damaged and physically impaired. He uses a walker to ambulate. The threesome takes awhile to sit in the examination room; they find space for all the wheels, the patient’s four- pronged cane and the walker.
The movement disorders specialist begins speaking, clarifying they have come to a clinic for people with presumed Parkinson’s disease. The daughter nods, looking up from the paperwork she’s engaged in. Addressing the patient in the wheelchair, the physician sees her facial expression change only slightly when asked a question. Perhaps she suffers from slight dementia. The daughter doesn’t come to her aid, she lets the silence expand, before looking up at her and asking the same question as the doctor. Together the women agree they first heard the diagnosis of Parkinsonism four to five years ago. The doctor asks what the first indication of illness was and the silence takes over again, before the doctor explains how Parkinson’s disease usually presents with slowness, rigidity or a trembling limb. This jogs the patient’s memory and she remembers her left hand shaking. Dizziness is another symptom. The doctor explains parkinsonism doesn’t typically involve dizziness, though it may become a problem if blood pressure is too low.
Asking about her memory, the patient concedes she frequently forgets things. The daughter looks up from her work and mentions her mother “is orthostatic” and she has a medication, mididrine that increases her blood pressure, though she fails to use it regularly because her blood pressure fluctuates so much, she fears she will give her mother a stroke. Nodding his head in agreement, the doctor understands and sympathizes, stating he would do the same. Today the patient’s blood pressure was 157/90, somewhat high, though the daughter explains it has been a rough morning; her brother was eating candy throughout the house.
The patient’s notes from her last stay in the hospital are available online, and the physician states at that time, the hospital staff found patient suffered from an ulcer. This is fresh news to the daughter who was unaware tests had found blood in her mother’s stool due to internal bleeding. At the time, they had prescribed Reglan, a medication that may worsen the symptoms of PD, the doctor adds. The daughter has no recollection of ever giving her mother Reglan.
On physical examination, the physician finds cogwheel rigidity in both arm muscles, and decreased dexterity in her hands. With a history of chronic hypertension, hyperlipidemia and two surgeries in which a surgeon inserted stents in the vessels to the patient’s heart, the physician is unclear about the cause of the patient’s hyper- reflexia. The wildly swinging blood pressure may herald Shy Drager’s Syndrome or Parkinson’s Plus; two names for the same diagnosis where the autonomic nervous system goes awry, typically seen in patient’s whose blood pressure varies according to body position. It is also possible that the patient suffers from consequences of heart disease and Parkinsonism.
The physician explains an MRI will help distinguish whether the patient has suffered a series of small strokes, which would account for the increased reflexes in her lower body, and her subsequent falls. He outlines the diet he would like the patient to adhere to- a low- protein plan for the day, with the daily protein allotment eaten in the dinner meal. The change in meals will help determine whether the patient has any benefit from the medication. If they see no improvement in the rigidity and dexterity of movement during the daylight hours, then they can conclude the mother does not suffer from dopamine deficiency, and does not require Sinemet, which drops the blood pressure further. The specialist concludes he would like them to return in six- month’s time, but may see them sooner if they have problems.
His mother tongue is Spanish. He and the movement disorder physician speak with ease, though dyskinesia causes him to throw his arms and head in random motions while he sits in the chair. Animated, he rises from the chair to demonstrate how his left arm gets stuck above his head, and he can’t get it down. Rigidity is his chief concern, being worst on the left side of the body, spreading from the left arm up the shoulder, neck and encompassing his head. He recounts that side of his body feels wooden. Again he rises to illustrate how he kept his right arm from swinging when he was first diagnosed with the illness. That was seven years ago, when he was thirty- nine and working as a truck driver. Today he receives disability benefits because the illness keeps him from working.
The doctor explains that being stuck in a certain posture has a name, dystonia and it is a form of dyskinesia, which falls in the category of motor fluctuations. The patient reveals in the beginning of the illness, nobody could tell he was ill, not even his wife knew he was taking medications. The doctor comments in Spanish, that piece of time is called the honeymoon period, in his words, luna de miel. Now a dose of Sinemet will last at the longest, two hours. He reveals his abdomen, lifting his shirt, stating he can’t eat like he used too. Dyskinesia even bothers him at night when he is sleeping. He begins moving and wakens, not getting more than four hours sleep. The physician comments he is the type of patient who would probably do quite well with deep brain stimulation surgery. The doctor recommends a visit to the neurosurgeon, who also speaks Spanish.
Before seeking surgery the specialist would like to try a few other methods that might help to bring the dyskinesia under more control. He describes how patients can prepare a concoction of Sinemet and vitamin C in water each morning and sip it during the day. The vessel for the liquid must not allow light to penetrate and degrade the medication, and the mixture must be kept cool. The doctor advises him to keep the fluid in a thermos, or in the refrigerator, if at home. The doctor describes Parcopa, a fast- acting source of levodopa that gains access to the brain through the mucosa of the mouth. Patients use the method commonly in the morning when desiring to experience some effect of medication quickly, say within fifteen minutes. While under the effect of the Parcopa, the doctor urges him to prepare the liquid prescription. Lastly, the last dose of medication in the day will be a controlled release formulation of Sinemet, along with the anti-depressant Trazadone.
The patient comes from a family of considerable longevity, his father at ninety walks five miles a day. The man is healthier than he is, he comments. He works out regularly to maintain his health and the physician comments he would prefer he focus on aerobic exercise and stretching rather than weight- lifting. Studies with monkeys have shown thirty minutes of aerobic exercise daily will cause dying neurons to re- sprout. At the grocery near his home, a younger woman regularly flirts with him. He is so ashamed of his illness, that when she questions why he runs away from her so soon, he tells her he is gay.
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.