The doctor says the worse you sleep, the more likely you are to hallucinate under the influence of the anti-parkinson meds. The patient took a sleeping pill a friend gave him, a valium, and slept like a baby. The physician explains those drugs are fine for the short-term. Taken repeatedly they lose their efficacy, and over time people become dependent on them; without the medication they feel anxious and irritable. Being depressants, people with Parkinson’s disease should avoid drugs that depress the nervous system; they tend to worsen the depression that accompanies PD.
He’s forgetting a lot of things. He had a girlfriend who cooked for him, but she left him.
“And you’ve forgotten her.” The doctor comments. I can’t tell if he smiles.
He doesn’t want to take Seroquel, it gives him a headache. The doctor urges him to give the medication a chance, he has not yet found the right dose that will help him sleep. The patient comments his mother takes it also, and she hallucinates all the time. Explaining the medication is given to decrease hallucinations and promote sleep, the physician says doses can range from 25 mg up to 600 mg. Everyone has to discover their own requirement, between getting a solid night’s sleep, and being excessively sleepy the following morning, or not sleeping at all. He asks whether the drug comes in a generic, and the doctor nods, though the generic quetiapine fails to be listed among his choices to prescribe.
He isn’t able to work. His mind is failing and he has noticeable tremor in his left hand. The hand flails about the physician’s desk like a dying fish. He has to wait two years until he can apply for complete disability though he was diagnosed with PD a year ago. Concerned about paying his bills, he doesn’t want to declare bankruptcy. The Seroquel is expensive.
The doctor types while he asks the patient what sorts of things he does during the day. Wearing a baseball cap and white athletic shoes, the patient says he rides his bike in the neighborhood. The doctor nods commending the activity telling him he needs to exercise daily.
He drives two and a half hours from Sebring for his appointments, but he’s content to do so, it’s only every six months. As he leaves the doctor assesses the muscles in his upper body, noting they feel fluid. In the hallway he walks with a bilateral arm swing, if it wasn’t for the tremor of his left hand he might appear normal.
Unlike others who come in to the movement disorder physician to have a consultation and their medications adjusted, the couple comes in because they are seeking complete medical care from the government, due to exposure to Agent Orange. Rather than being sprayed, or having to wade through sprayed greenery, as alot of Vietnam veterans did, the patient lugged a backpack through the swamps of Georgia, that had been defoliated with Agent Orange, to simulate the environment that awaited them. Cuts from barbed-wire allowed the toxin to enter his system. Years later he began experiencing the first signs of early- onset Parkinson’s disease, cramps in his feet that caused his toes to curl in.
They are soft spoken but direct and come with all their documents and MRIs. The patient is a tall man, though his mannerisms bring Michael J. Fox to mind, it may be his fluid dyskinesias and the way he clenches his jaw. He has been seen by several well-known physicians, their notes are in his chart. An experimental study in which he underwent neurosurgery and implantation of dopamine-rich cells from the retina gave him about a week where he needed significantly less medication.
He is sixty-two. His children have married. As he leaves the office the effect of his medication is waning. He is cautious rising from the chair, and as he moves through the doorway, he takes short shuffling steps on the balls of his feet. His arms are out seeking the walls, should he fall. The doctor comments he could use the wheelchair and the medical student helps the patient into the seat.
Notes: Agent Orange got its name from the orange identifying stripe on the side of the 55 gallon drums of herbicide. The Rainbow Herbicide program of the department of defense included an Agent White and Agent Blue, though the Orange was the most common. From 1961 to 1971 the United States military sprayed more than 19 million gallons of herbicides on four military zones in Vietnam to rid the land of tropical foliage. Prior to that, the department of defense tested various quantities of herbicides throughout many southern states.
After several months, a couple returns for a follow up appointment. The physician comments on the wife’s Boston accent. He calls it endearing, when she tells him where she’s from. Months ago he instructed the patient to cut back on drinking milk throughout the day. The proteins compete with levodopa entry into the brain where it is transformed into dopamine. Concerned about his weight loss, the patient takes a nutritional supplement as well. At an appointment with his barber, he found he was unable to rise from the chair; he had drunk an Ensure before the haircut and the proteins made the medication ineffective. The doctor explains again a vegetarian diet for daylight hours will allow him to function optimally. The woman reinforces the doctor’s comments about food. No ice cream during the day.
The wife reports that he hasn’t been taking the Seroquel at night. Now he sleeps in a bedroom by himself, where she no longer is bothered by his thrashing at night, and speaking loudly in his sleep. The physician shakes his head and states that he needs the Seroquel because his sleep architecture is awry. He will be more rested when the quality of his sleep improves. Enhanced sleep quality creates a more rested person with more energy to perform tasks during the day.
The wife notes she thinks the quality of her spouse’s life is pretty poor. He watches TV and dozes throughout the day. He comments he would like to get out in the yard and work, yet he lacks the vitality to do so. Shaking his head in assent the physician states people with PD can experience apathy, or an acute lack of motivation that is apart from depression.
On physical examination the doctor finds the patient’s limbs loose and supple. As the pair leaves the spouse walks warily, his feet spread wide under his lightening frame, his arms wide, ready to grasp something, should he fall.
She is blond and well tanned. Her spouse wears green trousers a matching polo shirt. They have been married for forty nine years, which explains some of their dynamics. The husband scoffs at his wife and rolls himself to the side of his chair, away from her. She conveys he has lost some memory. The wife knows the facts and conveys them easily without stammering. She answers many of the doctor’s questions, when she sees her spouse stuck on a syllable. Like the small steps the feet take, the person with PD may have problems articulating thoughts- both repeat a motion, though little change occurs.
The doctor asks about the schedule of medications, and the wife replies that her spouse may forget a dose when occupied, so the schedule is constantly changing, though he strives to take his pills every three hours. The doctor rips a page from the pad of paper on his desk and begins constructing a table that would make up a medication diary. He states he can be of little use unless he is aware of how the patient responds to his medication; how long it takes for the pills to take effect, whether he experiences dyskinesias, and when they occur. He asks the wife to attempt the diary for a period of two weeks, so that he can see where patterns emerge. Email it to me, he says. With that information they can modify the daily course of drugs.
She is pleased that the physician has discouraged the two doses of night- time medication. The doctor insists the patient must have six hours of sleep nightly, at least. To make this a possibility he recommends the drug Seroquel, to be taken in gradually increasing quantities until the patient finds he is sleeping through the entire night. An enlarged prostate means the man must rise to urinate several times in the night; Depends may be needed when the quality of sleep improves.
Diagnosed with the illness fifteen years ago, the gentleman underwent deep brain surgery a year and a half ago. The physician asks whether they have seen an improvement in symptoms, and the wife shakes her head, doubtful. Then she notes her spouse no longer has tremor at all. While he demonstrates his gait in the hallway outside the office, the patient’s arms swing freely. The arm swing, the wife notes is also much better, he used to carry his right arm next to his torso. He takes the same amount of dopamine replacement.
After the physical exam the wife mentions her spouse fell in a field and she was unable to help him to his feet. They had to wait for some time, until another person appeared to assist. She worries he will fall again and wonders whether the physician can help them acquire a motorized scooter. The doctor writes the couple a prescription for physical therapy, which is the agent that has the power to aid them. The patient comments to the physician he is unlike other doctors, he has given them some time.
The patient arrives with her grand-daughter who reports she is the caretaker. Her grandmother speaks only Spanish and her hearing has deteriorated. At home she uses a walker to get through her house, outside she uses a four-pronged cane.
In 2007 she was told she had Parkinson’s disease, and received a prescription for Sinemet and Comtan. The physician asks whether she feels some improvement of her symptoms with the dosage she takes. The older woman is noncommittal. The dosage is quite low and she only takes it three times a day. The physician asks what her presenting symptoms were, that led her to seek a doctor, five years ago. She reports some tremor in her right hand, and that she had fallen twice; once in the bathroom, another time when getting from the bed.
The doctor enlightens the grand-daughter that few people who come to see him for the first time, when they are eighty-four truly have Parkinson’s disease. The illness is most often diagnosed when people hit their sixties, though it’s possible that someone who abhors the doctor might defer the first visit for a few years. If most people put off the visit until they were in their eighties, they would arrive in a stooped posture, a whispery voice, masked facial expression and all movements would be slow and rigid.
Her grandmother sits upright in the chair, with an expressive face and a natural quality to her speech. Testing her arms and wrists for rigidity, the doctor feels the muscles surrounding her joints are supple and loose. He tells the caregiver he thinks she suffers from lower-body parkinsonism; a type of illness brought on by microvascular disease caused by long-term hypertension. In patients with this sort of problem, they rarely see any affect from medication until the dosage is quite high. He begins making a schedule for increasing the dosage of Sinemet until she takes two and a half pills four times throughout the day. Increasing the dosage by half a pill, the schedule will take more than two months to complete. He also suggests the patient have an MRI of the brain, and prints out a prescription to have the test done. Encouraging the patient to exercise on a stationary bike may be tricky. She suffers from two degenerative disks in her lower spine and her left knee pains her constantly. The doctor feels she must continue to take the pain medications, though exercise may allay some discomfort and will help increase her general health.
With straight red hair, cut and curled at the ends, the grand-daughter straightens several locks of her hair, as they leave. She comments if her grandmother catches sight of herself in a mirror, she would be horrified and question why she let her be in public in such disarray, asking her aren’t you supposed to care for me?
“After a Medicare beneficiary surpasses the prescription drug coverage limit, the beneficiary is financially responsible for the entire cost of prescription drugs until the expense reaches the catastrophic coverage threshold”.
At the monthly visit to the pharmacy my father got a bill for two hundred nine dollars for his Parkinson’s drugs. He was used to paying thirty dollars. He had fallen into the doughnut hole, the time where insurance no longer covers a fraction of the cost of medications. He believes the month is arriving earlier this year, which is possible as the cost of drugs only goes up, which makes arriving at the sum of $2,840, the amount spent by the patient plus the amount spent by the insurance company, occur prior to last year.
However, things could be worse. In 2010 the government sent $250 checks to seniors who had hit the doughnut hole during the 2010 calendar year. In 2011 when patients fall into the doughnut hole they will pay fifty percent of the retail cost of brand name medications. Though there is nothing to dissuade drug companies from jacking up their retail prices. Generic drugs receive a seven percent discount. I doubt my father knew he was actually getting a discount on his drugs.
There is also a program for those who need ‘full help’. Such programs offer smaller copayments for medicine and no doughnut holes. Those on limited incomes can receive ‘extra help’ from the government. Drug costs in 2011 for most people who qualify are about $2.50 for each generic and $6.30 for each brand-name. Qualified Medicare individual beneficiaries must have a monthly income of $923 or less. For a married couple the monthly income limit is $1,235.
Don’t most eighty year olds have limited incomes?
On the far side of the coverage gap, there is another shore. Your toes touch those sands when you have spent $4,550 of your cash. Your insurance retakes your hand, and you pay five percent of the retail cost of medication. The doughnut hole is slated to vanish completely by 2020, nine years from now. Whether my father makes it to the date is questionable, we can only hope.
He sits straight in the chair, his hands clasped in front of himself, his elbows resting on the chair’s armrests. The wife confides that she’s quite alarmed by the change in her spouse over the last two and a half months. They are an attractive couple, tall and handsome with dark hair. To look at the spouse there appears to be nothing wrong. Only when the physician asks the patient to perform a set of three discrete movements with his hand, does it become apparent he is unable to learn three simple gestures. His hands shake, his arms quiver. His face focuses and watches his hand and it’s obvious he is attempting to learn the sequence, but has a lot of trouble.
The patient is not yet sixty and was diagnosed with PD in the last three years. The difficulty he has learning is profound and not typical of the standard patient with the illness. Though cognitive function is affected in Parkinson’s disease, it is more likely to occur later, after ten years, or more. The process is gradual and begins with general slowing of thought. Patients with PD retain the ability to learn, though it may take them longer.
The pramipexole the patient takes contributes to his muddied mind. The dosage is escalating and with it the patient is more paranoid, more anxious, more forgetful and more preoccupied with sex. The spouse relates her husband may set a glass of water down and then not find it. He is unable to fix simple things like the towel flapper and doesn’t attempt to fix the computer any more. He got in the car and drove through his neighborhood lost.
The physician would like the patient to undergo neuropsychological testing. The pattern of his cognitive deficits may point to whether the patient suffers from Lewy Body Disease, Alzheimer’s or other dementia. He recommends the patient begin taking Namenda, Exelon or Aricept to slow the process of mental decline. Seroquel he recommends for sleeping, with instructions that the patient up the dose until he arrives at a dose that will allow him to sleep 6 hours without interruption.
The cost of Seroquel has been prohibitive. The patient is completely disabled and the spouse works to pay the bills. Three more medications are not what she hoped for. The doctor gives her several sheets of paper, commenting they may qualify to receive drugs free. The wife thinks not, her salary is not paltry but goes completely to pay their financial obligations.
When the physician saw him five months ago, the patient was worried about his cognitive function and being able to work fulltime as a veterinarian. Today he’s concerned about his right hand. He makes more errors when typing and his handwriting has become increasingly smaller and cramped. The doctor comments patients sometimes complain of sensory changes in their hands but to him tingling and numbness sounds more like carpal tunnel syndrome than Parkinson’s disease. He offers to have the patient referred for sensory evaluation, if he thinks it is a serious problem.
He no longer works fulltime, but substitutes for others when they go on vacation. He finds the days where he was able to fill clinical rooms with patients, and go between rooms easily, have passed. He now finds he must concentrate on the animal on the examination table, and see clients one at a time. Though he has paid his insurance company for more than thirty years he is having a difficult time getting them to compensate him for the disability he has. The physician assures him that when they eventually acquire his medical records, they will see in the notes that he has trouble with frontal lobe functions; in planning and executing sequential tasks. From the viewpoint of pet owner, one hopes that more than thirty years of work in his field has given him a foundation of knowledge that will not be easily swept away.
Assessing his physical symptoms, the doctor notes the muscles surrounding the wrist and elbow are loose and supple, and that he clearly is benefiting from his medications. The patient confides when he skips a dose during the day he gets a dystonic cramp in his foot during the night. Reviewing medications, the patient notes Azilect, an MAO-B inhibitor has risen in cost to twelve dollars per pill. The medication potentiates the effect of Sinemet. As a coincidence, the drug representative has just left an arm load of samples on the physician’s desk. The doctor breaks the cellophane tape from the turquoise boxes and gives the patient half of the samples.
Prior to the patient’s arrival the drug rep. spent several minutes enlightening the physician that the blackbox warnings Azilect used to carry have been determined to be unfounded, and are no longer listed as potential problems.
In the past, the black box warning stated that “Azilect at any dose may be associated with a hypertensive crisis/“cheese reaction” if the patient ingests tyramine-rich foods, beverages, or dietary supplements or amines (from over-the-counter medications). Hypertensive crisis, which in some cases may be fatal, consists of marked systemic blood pressure elevation and requires immediate treatment/hospitalization”. However, this adverse effect has been shown to be extremely unlikely when patients use the low doses recommended for slowing progression of PD or to improve the effects of levodopa/carbidopa.
The doctor has also prescribed the dopamine agonist pramipexole (Mirapex) because the medication acts whether or not the patient has a meal that is high in protein. Lastly, the doctor emphasizes the patient would benefit from regular cardiovascular exercise and stretching. The patient notes he has just renewed his gym membership.
The patient suffers from akathisia, an unbearable feeling of inner restlessness that manifests in movement. Whether the person shuffles the feet back and forth, or repeatedly rises and sits from the chair or paces in place, remaining immobile is nearly impossible. The symptoms may arise as a side effect of medications. Neuroleptic antipsychotics (the major tranquilizers) especially the phenothiazines, thioxanthenes, butyrophenones, piperazines, antiemetics and stimulants are known to bring about the problem. People with Parkinson’s disease, and Huntington’s disease may suffer with the condition.
The patient describes rage, feeling like he must fight against the world. He doesn’t want to meet people for lunch, go for a walk, leave the house or exercise. He feels he constantly maintains equilibrium by practicing anger management. He gets no relief, and he states he’s worn down by the constant agitation, anxiety and feeling of coldness. Whatever the physician has tried is not working. He needs a new solution as fast as possible.
The doctor recommends Seroquel at night to calm him down and to improve sleep and to maintain it for at least six hours, straight. When the patient finds he is sleeping six hours, then he is taking the correct amount, until then he should gradually increase the medication. He also recommends taking it in smaller doses, during the day, working up to taking it four times, spread throughout daylight hours.
After changing the state of the patient’s akathisia, he would like the patient to schedule his days with an assortment of activities. Getting out of the house, getting exercise and meeting others should be included in a weekly agenda. Until the patient reaps some benefit from Seroquel, he is likely to be at risk of suicide. The nurse coordinator speaks separately with the spouse of the patient, encouraging her to be the one who controls access to medications. The patient stands heads above the physician and his spouse. Northern European, perhaps Norwegian Viking genes have endowed the patient with the height and strength to inflict serious bodily injury on someone, should he become upset. His teary wife is not the only one hoping for a quick change in circumstances.
The muscles of your jawbone go berserk, so that you bite the inside of your mouth and your jaw locks and the pain throbs. For hours every day this will occur. Your spinal column stiffens so that you can hardly move your head or your neck and sometimes your back bends like a bow and you cannot stand up. The pain grinds into your fiber … You ache with restlessness, so you feel you have to walk, to pace. And then as soon as you start pacing, the opposite occurs to you; you must sit and rest. Back and forth, up and down you go in pain you cannot locate, in such wretched anxiety you are overwhelmed, because you cannot get relief even in breathing. Jack Henry Abbot, In the Belly of the Beast (1981/1991).
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.