Contrasting Patients

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.

Linen

A white blouse, natural undyed linen skirt and huarache sandals; the patient's appearance hints at affluent comfort. Her height, shoulder length white hair and the pleasant proportions of her face require the attention of those around her. Making eye contact with those passing in the hall, her facial expression does not change. Dyskinesia gently rocks her head from side to side. The husband is shorter and rounder. Her legs are long, perhaps a model's legs in younger years.

The doctor inquires into her health, commenting on the movements of the head. He has never seen her so mobile. They are in Sun City now, their winter place. But New York beckons. Their return North means physical therapy with a previous therapist who worked on her neck and shoulder. Years ago a surgeon placed metal plates to stabilize the cervical vertebrae of the neck, but the excess motion of dyskinesia creates pain that moves through her shoulder and down the left arm. The doctor comments deep brain stimulation can readily improve the unwanted movements. She comments she takes a blood thinner, Coumadin and avoids green leafy vegetables for their wealth of vitamin K- a blood coagulator. No, surgery is not an option for her.

As the doctor types information into the computer system the pace of his words slow. She reaches into her bag for the diary, where she has recorded her physical condition for the past month. There are days when she froze repeatedly, other days when she was "on" and forgot to take the medication. The doctor re-emphasizes the times when symptoms are known to worsen; with stress, any colds or flu, dental work...From the occurrence of movements and the time since the last pills the physician deduces she suffers from peak dose dyskinesia. If she cut back her dose a bit, relied more on agents that prolong dopamine's affect, or spaced the doses out more through the day she might experience less dyskinesia. The husband shakes his head, commenting a large party is approaching and his wife worries.

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.

Shakes and Pain

Six month follow- ups help the doctor and patient stay on top of shifting symptoms, though more frequent appointments are possible. The doctor has said he likes movement disorders because there are no emergencies. Though the first incident of freezing may feel catastrophic to the patient, it passes. They are bumps in the road. Sometimes the journey is lightened by sharing it.

The Parkinson's disease coordinator speaks with the patient about attending possible support group meetings in his area. He responds, stating not all patients want to talk about their problems. Not deterred, she explains the sessions will be run according to group preference. Some people may want lectures, others may just want the social time.

The shooting pain in the left knee is new and it worries him. It never occurs when he's doing Tai chi and it moves up, not down, as the doctor would prefer. Pain moving downward may emanate from the spine, a bony prominence can easily impinge on the fibers of a nerve, sending scintillating pain down through the leg. That's not it. This is pain moving up towards the thigh and it's fast, not throbbing and deep as the pain patients with PD describe. Both his mother and father are diabetic...The patient climbs onto the examination table and the physician tries to replicate the sensation. Both legs have bruises at the lower mid- shin. The tightness of the muscles in the patient's legs is extreme; the doctor comments he would like him to continue with physical therapy.

Parkinson's disease in this patient is evident in the constant tremor of his hands. Six months ago, it was not as prominent as it is today. He describes shaving, his right hand wavering towards his cheek. The doctor recommends wearing wrist weights to dampen the movements, the patient nods. Tremor is one of the hardest symptoms to suppress, and he takes a distinct drug to soften the constant shaking. Yet he walks well, with head and shoulders erect, an arms swing, and ample step size.

Test Pilot

A German patient and his Austrian wife have recently moved from Iowa, and need a new neurologist. His voice resonates in the small room with only a hint of German lilt left. He has the voice for radio, but he is a test pilot. The doctor is in education mode conferring to the patient all things related to Parkinson's and discusses the personality type others have given to the stereotypical sufferer. Well controlled, averse to adventure, given to detail and methodical work, the patient admits that describes himself.

The wife describes the onset of symptoms a few years ago; trembling in a hand that in time involved the foot as well. Today there is little evidence of any symptom. The doctor feels some cog- wheel rigidity in the muscles at the elbow joint on the left side otherwise the patient's symptoms are very well disguised by medications- Mirapex and Sinemet. The movement disorder physician commends the patient's management, he is doing the right things- exercising daily... He would add something thought to slow illness- perhaps coenzyme Q10 or deprenyl.

The doctor conducts a physical exam. Performing the finger to nose task, first with the right hand and then left, I note the patient's hands. His skin is taught and smooth, unlined and young- looking. He is in his sixties and he has the hands of a young man. The wife has skin appropriate to someone of her age, and a flare for fashion evident in pale pink clogs with an open toe and well- cut red hair. She is un-intimidated by the doctor and presses him on why he speaks so much of animal research.

The patient's gait is flawless and his arm swing full and loose. 'Maybe I don't have PD...' the patient comments as the physician emphasizes how well his symptoms are covered. The doctor doesn't give the comment any reply. All witnessed the wife mimicking the tremor of the hand, and how the movement eventually affected the left foot. If he doesn't have Parkinson's he has something close enough.

Tied In

The patient, a former internal medicine physician sits in a standard wheelchair, his wife on a yellow plastic seat at his right. The movement disorder doctor arrives as the medical student asks the principle reason for the visit. There are no other seats in the small hot room. I sit on the red hazardous waste garbage, an administrator hoping to learn the issues of Parkinson's is already standing. The Dr. stands, wearing a woolen- looking jacket leaning against the examination table until the soft voice of the patient forces him to relocate the wife's bag. He sits much closer in another yellow chair. The patient's words are so hard to wait for, he twists in his seat while the syllables are freed from his stuck mouth.

Hallucinations are what brings them in. He sees two or sometimes three women caring for him; the wife gives no other specifics. She doesn't define what she means by caring. Sometimes he hallucinates seeing his wife. How he knows the visions are hallucinations is murky; he doesn't reach out and try and touch them, he just knows they aren't real...

The doctor conveys REM sleep interrupts into daylight hours when the patient's sleep cycle is fragmented. He's not sleeping enough. The remedy is Seroquel, or the generic quetiapine in the tiniest dose, half of a 25mg pill. Because the prescription is supposed to allow for 6 hours of sleep, the patient will need to wear diapers at night. It may take several nights to find the correct dose needed to provide a six hour sleep window; the patient will need to wear soft restraints tied to hospital bed, to keep him from walking around in a groggy state and falling.

The doctor describes a personal scenario of his own. His mother needed restraints to keep her from walking around at night. A mother's care, and a spouse's care are two different fruits. The doctor proposes the wife tie her husband into his bed, so he will not be able to get up until she unties him in the morning. Restraints and a hospital bed- two items Medicare will pay for, and home health for instructions on how to use the nighttime devices. The wife leans into her husband, speaking softly and clearly.
"A hospital bed, a hospital bed, OK? " She doesn't mention the ties.

Hard Times

The sun lights the waiting room but the fluorescents are on overhead anyway. The woman next to me eats Pringles from a long red can as the young couple across the aisle fill in sheets of paperwork on a clipboard. I try not to look at his face; the right side is significantly swollen with a line of black stitches running the length of his nose. He wears his black sweatshirt hood over his head, not wanting to be noticed. A girl with pigtails and shiny black boots ambles around the thighs of an man at the check-in desk. He signs to her, looking down, his lips move in words, repeating the sign again. His hair is grey. He is unshaven, wearing beige linen. As they pass me I notice his daughter's hearing aid is bright green behind her left ear.

The patient appears in the waiting room with his son. His steps tentative, he walks with both arms bent, shuffling and trailing behind his son. The son cuts his mother off, encouraging his father to speak at the beginning of the visit. The father describes a fall in the shower, where he split the head of his humerus. His voice is light, feathery. His face reveals no emotion. The wife takes up the thread as the patient stalls. She is freckled with dark red hair. She speaks adjusting her gaze to the people in the room, describing her husband's last day at work, when he said he couldn't do it anymore. He gave up practicing medicine afraid he'd make a mistake, and a patient would suffer.

They have no health insurance. The spouse is hoping to get a full time position with health benefits in the company where she works, leaving the husband alone at home. With no patients to occupy his mind, a painful arm and limited contact with others, his depression has darkened. The physician behind the desk talks about decompensation; how a urinary tract infection, cold, flu or broken arm will intensify the Parkinson's disease. Pain amplifies the symptoms of PD, making sleep elusive and scarce. Without sleep patients are prone to hallucinate. As he goes through the physical exam, the clinician emphasizes he believes in providing pain medications to patients in pain, it's what the prescription is for. Later, the ailing doctor can wean himself. The right hand of the broken arm is swollen from disuse. The other doctor encourages the patient to use his hand; squeeze a ball, move individual fingers.

He would like to order physical therapy, but he knows the patient has no insurance and no Medicare. He encourages the patient to exercise, perhaps with a stationary bike, citing a recent study where the benefits of exercise on the brain were sizable. The wife gathers the prescriptions to leave, rising from her chair. Her coloring and substantial body mass contrasts sharply with the angular knees that poke from beneath the taupe trousers of her husband. Indeed, he has lost twelve pounds in the two weeks since the last appointment. What will he weigh when he returns?