Es Dificil

Posted by & filed under Weekly Journal.

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.

Two Men and a Mute

Posted by & filed under Weekly Journal.

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.

Hushed

Posted by & filed under Weekly Journal.

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.

Dad- a Clinic Day without PD Patients

Posted by & filed under Weekly Journal.

My father used to be 5’10″, now he’s 5’6″ or so. With my high heels on, I am as tall as he is. He’s got that hunched over Parkinsonian posture. I tried to fix it by putting my shin near his spine and pulling his shoulders back. He shouted at me. I couldn’t get him to extend his chest at all, his shoulders and pectorals have very little ‘give’.

At home, he has a regular exercise routine, but the day I saw him he and his generation opted to eat dinner in the hotel restaurant, rather than walk the block and a half to the grill and microbrewery. When we did walk together, I took his arm, hoping that a little support would encourage a more spirited pace. Usually it failed, but at least he could hear me. He stops when he talks. I acquired the habit of either not talking, or monopolizing all the words, so we could continue moving.

Apathy comes. He is content to read the paper all day, drinking black coffee. I hear he does little housework and does not help with chores. When these things are pointed out, he shrugs his shoulders. My Dad has always favored well-cooked meat. At the hotel restaurant, he requested well- done bacon; it looked like jerky, he was delighted. He ate his bacon with dry toast- also well- done. I informed him the protein in the meat would affect how well his medications worked. He has never been science – oriented, he is an English and History teacher. I told him about neurotransmitters and how dopamine and proteins compete for the same sites, but I don’t think he knew what I was saying, except that I thought the bacon was a bad choice.

Ages ago, I found a map of Wyoming or North Dakota with a town bearing our family surname. I showed it to him at the hotel breakfast.

“Yeah, I knew about that.” He wasn’t impressed.

On certain nights of the week when his wife works late, he cooks dinner. It can be a contentious event, apparently. Dad would not disclose what was for dinner on a recent night; he’d already had one argument about it. He likes meat and potatoes and tolerates a vegetable. How do the bowels of this man work? He lives primarily on bread and meat, and drinks no water, just black coffee during the day.

I am the delinquent one, the daughter who has never visited him, and he is nearing 78. At the end of our visit, I hug him and tell him I love him. He may have become apathetic, but he is teary to see his three daughters leave.

Hope is Hard to Kill

Posted by & filed under Weekly Journal.

The patient hoped there was something in her a neurosurgeon could fix, to alleviate the tremor of her left hand. Unfortunately, she lived with several poorly aligned vertebrae in the cervical area and the doctor could see no reason on the MRI for a tremor. He wasn’t the first physician to tell her this. Two neurosurgeons and a neurologist confided they saw no cause for tremor on the images of her brain and upper spinal column. Still hope is hard to kill. Clinically, the tremor she endured would be classified as mild, yet because it was her arm and hand, she conceived the movement as pronounced and problematic.
An older woman- she thought herself so, her birthday three years before the physician behind the desk, she suspected her tremor might be part of aging. The doctor assured her she was not old, and tremor is not a natural consequence of increasing age. He pointed with both hands to his head of dark hair shot through liberally with graying streaks, encouraging her to change her thinking on that matter.
With a Latin surname, a Florida speech pattern and the pale eyes and skin, I assumed she was a descendant of an original Florida family, but I was wrong. She still used the name of her former husband. Her manner so mild, I feared she would cry, outnumbered in the examination room by the clinical coordinator, the physician and myself.
The specialist recommended amantadine for the tremor, two pills a day- one at breakfast another at dinner or before bed. The drug has other properties as well as reducing tremor; it is anti- viral, so patients experience less flu and colds while taking it. While Azilect might stabilize symptoms, it is also an MAO inhibitor and possibly problematic, as one must avoid certain foods- aged meats, cheeses, and certain other drugs. He also strongly advised an antidepressant to lighten the cloud she carries over her head.
The MRI mages produced an unusual finding, a calcified meningioma: a very slow- growing tumor of tissue involving the tissue of the meninges. The doctor fished into the large envelope searching for a report to see what the radiologist concluded, and confirmed his own diagnosis. Women apparently have a greater quantity of such tumors.
Small, round, light splotches speckled the brain on the MRI. The doctor gave this a medical term, “leukoareosis”. Apparently, leaky blood vessels in the brain show up on MRIs due to their excess fluid, a natural consequence of high blood pressure. They also, cannot be blamed for instigating the tremor of the left hand.

Cotton and Linen

Posted by & filed under Weekly Journal.

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

Undaunted

Posted by & filed under Weekly Journal.

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.

Test Pilot

Posted by & filed under Weekly Journal.

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

Rigid and Akinetic

Posted by & filed under Weekly Journal.

He is a model of rigid akinetic Parkinson’s disease, as opposed to the tremor dominant type. A compact man with a receding hairline of thick wavy and whitening hair, his nose is hooked. The skin of his face is pale and wraps his cheekbones tightly. He admits he’s never suffered from tremor, a good thing when welding. He’s an artist, primarily a sculptor. He calls himself an art teacher. The doctor asks to see his work, noting he appreciates art. All sorts of toxic substances- manganese, cobalt and solvents increased the risk he would acquire the illness. Today he is either
under- medicated or does not have PD. He sits like a rock in the yellow plastic chair. As he speaks he moves his mouth, but he doesn’t fidget, scratch, blink or shift his weight. He shoots his left eyebrow up, once.

The patient and the doctor begin their words at the same time, more than once their voices overlap. When a pronounced delay in response sends the room to silence, the wife tries to help by reminding her spouse of the sequence of events. It has been six or seven years since the diagnosis, the initial symptoms are hard to recall. Still symptoms, diagnosis and treatment began within a period of a year. Not good, in the opinion of the physician…He can’t recall feeling any improvement with medications. The specialist declares the patient is inadequately medicated or doesn’t respond to levodopa.

He begins drawing a chart, describing how to increase the dose of Sinemet from one pill, four times daily to a possible maximum of ten pills daily. The idea is to increase the dosage, then observe the response the body makes on the following two days. Always increase the dose by half a pill, in a staircase fashion, halting progression if feeling nausea. If nausea continues at that dose, then step backward a half pill. The object is to discover what the correct dose is to alleviate most symptoms. Fluidity of movement, increased arm swing in walking, loosening of joints are as three aspects for possible improvement.

The doctor hands the patient the medication progression chart, requesting he return in three months. He is not free, yet. Both patient and spouse agree to provide their blood for a study searching for possible biomarkers in PD. This entity in blood would change along with the progression of illness, providing another source to document disease progression. Physicians determine the progression of illness by physical exam, but it gets tricky when patients rely on medication to be fully functional. Visual scanning techniques can also document loss of dopamine in the substantia nigra, but the procedure is costly, and dopamine-producing cells dwindle naturally with aging before producing parkinsonian symptoms.

Contrasting Patients

Posted by & filed under Weekly Journal.

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.

Close

Your Name (required)

Your Email (required)

Subject

Your Question