A Dystonic Illness

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The physician explains that past researchers lumped Parkinson’s disease was into two types; rigid akinetic or tremor dominant. In the days before levodopa patients evolved into a fixed dystonic posture. In fact, the PD is really a gradually progressive dystonic illness with or without tremors. Dytonia is an abnormal posture of a limb or other body part due to sustained contraction of muscles. The patient has had the disease for more than twenty years and today she sits in a wheelchair, her daughter by her side. She wears functional black sneakers though the dystonia is still evident in the position her left foot takes. The muscle spasm makes her left foot curl to the outside. Attempting to transfer to the toilet with one functional foot is difficult.

When the doctor recommended they increase the dosage of levodopa, in an effort to counter the dystonia, hallucinations became more frequent and she spent some time in a nursing home. With Seroquel the anxiety attacks have stopped, she sleeps well and is less agitated during the day. Though the patient may be faring better, her daughter’s expression is drawn tight. The physician complements the patient, telling her she looks well. The others in the room agree. At eighty three her complexion is smooth. Her skin is tightly pored, her white hair thick and styled. She has her own teeth and they are white. Though she has trouble raising her arms, her blouse is attractive and feminine.

On physical exam, the doctor notes he feels some rigidity in her left wrist, and it’s evident by the staccato way he flexes the joint. He conducts a modified Luria test, to assess her mental function and asks her to remember three numbers, after he she has said them three times. She has trouble imitating a movement the doctor performs, and he notes she suffers from a motor apraxia. The daughter notes her mother and father used to play Scrabble together, but those days are gone.

The visit progresses and the physician prints out the patient’s prescriptions , including one that may help her memory, begins explaining that the same kinds of chemical structures that are used to kill insects and as chemical weapons (acetyl cholinesterase inhibitors) have been modified to a safe medication (eg Aricept) that may improve the memory of patients with Alzheimer’s disease. The difference between a poison and a medicaton often revolves potency (or strength) and the formulation of the medicine. He expands on this, commenting the very popular notion that school children are taught to say no to drugs is deeply flawed, and that he would advocate the idea to Say Know to Drugs. He catches himself then, commenting he has had too much coffee, and that he looks forward to their next visit in six months. The daughter reaches over and shakes his hand before she unlocks the brakes of the wheelchair.

The coffee and perhaps the two other medical students have caused him to overlook the dissonance obvious in daughter’s mood. She is the soul caregiver for her mother, now. Her mother’s well- cared for appearance probably comes from her efforts, and she probably has little time for herself. She wears the strain of care giving, and it is not pretty.

Turned to Stone

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She doesn’t trust the physician or the nursing staff in the home to give her mother adequate care. Present only on specific days for several hours, the doctor attends to those who the nursing staff have trouble with. Her mother seldom raises attention, so she is overlooked. Lately, she has noticed a change in her mother, who has begun speaking about the animals that wander the facility. The daughter reports she has only seen one cat, though she is aware there may be several. The animals, she was told, are therapeutic for those who live there. The dark haired daughter stops speaking and gazes at her mother, who remains seated in the wheelchair by her side, then comments her mother always had dogs in the house. The elder woman’s eyes fix her daughter and she nods, repeating, ‘Dogs, yes…they’re chasin the chickens…and the birds are flying every which way, squawkin’ and fleein’ from the dogs.’ The doctor raises an eyebrow, but the daughter shakes her head, her silky brown hair sleek under the fluorescent lighting in the room. The doctor reminds the pair this is a movement disorder clinic. The daughter shakes her head again, not dissuaded by the physician’s comment. She notes she found him online, at the university website, and when she spoke with the secretary, she got an appointment. Though her mother has had hallucinations for some time, it’s the slowness that’s new. The nursing staff hardly notices.

The doctor scans the information sheets, noting her mother is taking no prescription medicines. He asks whether the patient ever saw a doctor regarding her hallucinations. The daughter reports her mother had a stroke several years ago, and moved to a nursing home when she and her siblings thought it would be safer than allowing her to return home with a wheelchair. About the hallucinations, the daughter shrugs stating she really isn’t sure, mother has always seen things. The physician glances at the younger woman, who shrugs, then turns and asks the patient her age, and whether she knows the date. The voice of the white haired woman is clear, high and her blue eyes scan the doctor’s features. She’s eighty-three and it’s the day after Valentine’s day, 2012. He asks about the things she sees, and she nods. He rephrases the question and asks about the animals in the facility she lives in. She nods again, reporting the dogs come through in the morning, there are eight or so. The smallest is dirty white, hairy and short. Some days the chickens wander through before them, and sometimes they’re being chased. She’s only seen the peacocks once. The morning they paraded by, several of her friends also saw them. Several times she’s seen a lioness. The doctor comes around the desk and asks for her hand. She extends her arm. Her thin skin is pale, her fingers unusually straight, while he asks whether the animals scare her. ‘No, they go on about their business. Don’t care too much for the snakes though.’ He glances at the daughter who raises her eyebrows. He moves her hand about her wrist noticing some rigidity in the movement and inquires whether she feels she’s become slower in movement. She nods commenting some days she feels she’s turned to stone. He smiles and asks her where she sees the snakes.

Across the Table

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The two people with Parkinson’s disease meet each other at the reception. Relatively newly diagnosed, she recently has taken up the trumpet. Her face is mobile, her voice is strong and she lacks any obvious sign of the illness. She comments that we can’t see the tremor in her hand, under the table.

Her son and her spouse are both physicians and they approve of her musical idea. Blowing into the trumpet will strengthen her respiratory muscles, as well as those surrounding her lips. There is a spontaneous quality about her that the man across the table lacks. He may have been diagnosed earlier, but the illness is far more apparent in his demeanor. There is so little expression in his face, people talking to him repeat themselves. He calls them on it, telling them, “ You’ve said that three times.”

With a distant cousin, he easily recalls what life was like when he was younger, the youngest of three boys, and the favorite of his father. He is eighty, now. Frequently, he loses the thread of what he’s speaking about. The cousin, seven years older tries to assist him by recalling his previous words. This mental fog is new to him and frustrating.

When the two old men walk they both have heads that thrust forward. My father watches his feet, while the cousin, Bill, gazes ahead. A previous physician prescribed Namenda for my father’s mental function. He applied the patch and didn’t like the affects. He wonders sometimes whether his change in mental acuity can be ascribed to Parkinson’s disease, or whether it’s merely aging. His wife sees the fog he functions in very clearly. She no longer gives him the accounts. He has made too many mistakes and they can’t afford the errors. He has difficulty following a recipe in a cookbook.

Both the cousin and my father have married women much younger than themselves. When the eighty-seven year old cousin drives across the United States in his mobile home, my father has been directed to not drive, due to the carpal tunnel surgery he recently underwent on his wrist. Other family members have rejoiced over the fact that he can no longer drive. He takes the bus, when he is home.

My father falls easily into the ‘depressed’ category. He has a consistent grey cloud over his head, though he may not admit it. He prefers to see himself as having a dark sense of humor. As he has gotten older he has gotten smaller. His clothing tends to hang on him, rather than expanding over his girth. This is new, too. He can eat cheese and chunks of rye bread now, without concern that the doctor will report his cholesterol too high. At eighty, each day is a blessing for those who love him.

The Fisherman

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He’s tan, robust and loves to spend time fishing off a bridge. Dyskinesia draws his jaw sideways and his hands make extraneous movements that the doctor notices. It’s past the time for his pill and the physician encourages him to stay on schedule, take the pill. His wife sits in the chair at his side. She is much more fair, her dark hair hangs past her shoulders and she carries a water bottle.

The doctor asks how things are and reads the note from the prior visit. He had recommended Seroquel to help the patient sleep at night. He tried it. The prescription was too costly for the sleep it provided and when the bottle was empty, he did not refill it. The doctor comments the company provides the drug at reduced to no cost, to those who are unable to afford the monthly bill. The patient relies on a disability check to live. He supports himself, his child and his wife. Meanwhile he recommends Mirtazipine, an anti-depressant that causes drowsiness and in the long run may improve sleep. It is also a less costly drug.

An assistant coach to his son’s soccer team, he froze for the first time, coming across the grass at the park. He felt his legs weaken and he couldn’t move. The children weren’t sure what was happening. He worried what they were thinking. His wife gazes at him and tells him not to be concerned what others think. He admits worrying gets him nowhere. It is all energy directed inward, and it brings him nothing. At home he worries about the bills. The doctor nods and comments the birds and the bees don’t worry about where they will sleep, what they will eat. The wife comments sometimes she wishes she was the dog. The dog eats and sleeps, not preoccupied with daily concerns. It’s a simple life.

The doctor goes to watch the patient’s gait in the hall and I ask how long ago her husband was diagnosed. He was thirty-five, and now he’s fifty-two. He looks forty. The doctor comments he had young-onset illness and the illness appears to be advancing very slowly. The patient worries about his memory. He speaks with his wife and can’t remember the details. The doctor, with a deadpan expression belying the humor, comments that’s because they’re married. Explaining the difference between dementia and Alzheimer’s, he tells the patient those with PD tend to suffer from failing “executive” function or the ability to plan ahead and to multi-task. He animates the meaning by answering the phone, checking the computer, sending a text, conferring with a nurse and making a call. Asking the patient to follow his movements, he conducts a Luria test and the patient has trouble learning the sequence of three hand movements. The confusion he experiences is evidence of a decline in executive function, in earlier days he would be able to knock, chop and slap with no hesitation, and he demonstrates the motions rapidly with his hand.


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He’s a tall man lying on the examination table in the dark as the doctor peers over his face, a small flashlight in hand. They’re gauging his eye’s reaction to a light beam. Is there is some sluggishness in one eye, or do they respond equally well? The Chinese doctor is present today. A young medical student leans against the wall.

The doctor tests the sensation in his ankles with a tuning fork. Asking the patient to close his eyes, he inquires whether he can feel the vibration, he hesitates wanting to feel something. He can’t feel the buzzing. He feels it in his elbows. The top drawer of the desk has safety pins, and the doctor explains he wants to discover if he can tell the difference between sharp and dull. It’s hard for the man. He wants to feel something, and he’s waits for some sensation that doesn’t come. Brisk reflexes in the lower and upper extremities, with a lack of sensation; the patient has neuropathies in both legs. Two years ago he was told he had Parkinson’s disease. He’s been taking 25/200 Sinemet three times a day for some time and feels it has little effect on his ability to walk.

In the hallway we watch his gait. He doesn’t swing either arm and he turns in a shuffling pattern, rather than swinging into a bodily twist. The physician scans the documents he’s brought with him, noting the patient suffers from a megaloblastic anemia, associated with problems of the long sensory nerve fibers causing decreases in sensations from his lower extremities. In addition significant B12 deficiency affects white matter of the brain, and along with the decreased sensation from the legs, gait and balance become a problem. The doctor wonders about this. Could it be a lack of B12? Someone should have caught that before it impacted the patient so strongly. The tests have been thorough. They’ve performed an MRI of the thorax looking for cancers… He has lost sixty pounds in the last five years. Some of that may be accounted for in the loss of his brother. They traveled the coastal highway from Texas up California into New Foundland. With the death he felt no inclination to eat. These days he’ll cook a roast and gradually eat the meat, making a meal. For an easier dinner he’ll have a chicken pot pie.

He’s happy the doctor may have found the solution to his problems. He uses words like, “Golly.” In 1955 he began working for the phone company, digging ditches. He worked his way up becoming a lineman and climbing poles. When he retired he kept going to the same physician the company used. That was the general practitioner who diagnosed him with PD.

The doctor across the desk asks him to slowly stop taking the medication. He would like him to have a blood test, a thyroid evaluation, and an MRI of the neck due to the brisk reflexes in his extremities. The physician tells him he will call him when the results of the tests come to him, and they can coordinate what they’ll do next via the phone. The pale patient stands and shakes our hands before he and the medical student make their way down the hall.

Paying for the doctor’s time

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She has short white hair and bright blue eyes. The doctor comments she doesn’t look very parkinsonian, and she smiles and says that’s good. He refreshes his memory. She was in the same seat seven months ago. She was stage one then, some mild rigidity in her left wrist and elbow, no other symptoms. Taking hefty doses of coenzyme Q10 and Azilect, or rasagiline, an MAOB inhibitor to hopefully slow progression of the illness. She doesn’t need the heavy medication yet. The model patient, she does all the right things; exercising- playing ping pong, eating a diet rich in omega three fatty acids, taking agents that show some evidence of stalling the disease, and practicing Tai- Chi.

As she speaks the doctor comments her voice volume is low. Allergies. She’s had them since she was young, and they’ve made her voice raspy. The physician comments people with PD can become quite whispery in the way they speak, he turns a bit towards the visiting Chinese physician and expounds; the reason is the intercostal muscles between the ribs as well as the diaphragm become rigid and it becomes harder for patients to expand their chests, with a full deep breath. Consequently, they often breathe rather shallowly, lessening the movements of the chest wall. He has both hands on his ribs, demonstrating the effect of rigidity on inspiration.

The doctor from China takes notes in her small notebook. The doctor comments her English has improved in the days she’s been in the clinic, she smiles and thanks him, loudly.

The patient has requested the last fifteen minutes to herself. The visiting Chinese doctor and I exit the office. Later the physician notes the patient feels anxious about others observing her. Nothing she conveys to him is inherently personal. She pays for the time, she doesn’t have to share the experience.

Dirty Dark Gray Crocs

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The average age of diagnosis of PD in the US is sixty and he’s fifty-seven. His left hand and wrist move as he enters. He’s a large man wearing dirty dark grey crocs. His wife has grey shoulder-length hair. Her face is tan, her expressions mobile as the physician speaks.

On physical exam the rigidity in the left hand and wrist are obvious. The right side has only a hint of rigidity. The patient feels his symptoms have begun in the right side, as well. He has decreased reflexes in upper and lower limbs, and has decreased sensation to the tuning fork in both ankles and hands. The doctor notes the neuropathy may be the result of long standing hypertension. The lack of sensation in the feet- the patient states both balls of his feet lack feeling- will put him at risk for walking issues. Though when he strolls in the hall, his left arm lacks a swing and his gait is wide-based, yet fluid and deliberate, a bit slow.

He has been told by two neurologists, he has PD. He’d taken the medication for a month, nightly as directed by the doctor. The physician looks at him with incredulity. Sinemet- carbidopa/levodopa is not ususally given solely at night, unless the patient is having trouble turning in bed, or for treatment of restless leg syndrome. Yet taken only once a day, the effect would be very little. The patient confirms this, the medication did nothing for him. The physician across the desk agrees, to see any affect, you need to take a therapeutic dose.

The physician takes a blank sheet from the printer and begins explaining he would like the patient to begin by only taking a half a pill a day, with each meal and escalate the dose until he is taking two and a half pills per day with each meal. In the chart he makes, it will take the patient forty seven days to reach this goal. He reminds the couple, in the staircase of increasing doses, you can go backwards, and stay on the same step. What he discourages is jumping way back to the ground. The doctor comments that if they see little effect, when at or near the ultimate dose, they need to take an additional step. They can choose to decrease the protein intake during meals, or increase the dose of Sinemet, slightly. He explains the medication to get to the brain requires active transport, and the neutral amino acids, especially in milk and cheese compete to cross the blood brain barrier.

The doctor states the patient appears to be a classic case of PD. The patient agrees, he has always felt he had the illness. The physician encourages the patient and his wife to exercise. The increased blood flow to the brain will aid in re-sprouting neurons in the hippocampus- it will be good for his short-term memory as well as his over-all health. The wife is shaking her head. They’ve bought a membership to the YMCA, now they will have to go.

Great Great Grandmother

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The patient comes in with her daughter, the tremor in her right hand visible. She clasps her hands together in her lap. Soon, her left hand waggles as well. The documentation said she takes Mirapex for her symptoms. She shakes her head no, the medication made her violently ill. Scanning through the papers she’s brought, she hands the doctor the letter written by her former physician, three years ago.

In the passage of time, she feels the tremor has spread to her left side. Without any drugs to suppress the movement, her handwriting has degraded. The doctor comments her symptoms sound like classical Parkinson’s disease. He adds the illness is not diagnosed with one symptom, you must have several of the signs and a positive response to levodopa/carbidopa. He inquires whether she has ever been prescribed Sinemet, and she recalls becoming acutely nauseated when she took it.

The doctor describes how Rasputin was poisoned by arsenic, in such a gradual manner that those expecting him to fall dead, were disheartened when his cheeks grew a ruddy red, a symptom of arsenic poisoning. In the end, the man was shot. When that failed to kill him, he was drowned. The idea; small incremental doses are much easier for the body to assimilate. Taking the medication with food, should help dissuade any nausea, but if the queasiness continues, she may want to try an anti-nausea medication, sold in Canada, but not in the US. He asserts other anti-nausea medications block or deplete dopamine stores in the body- not what one wants for a person who may have diminished dopamine at the start of therapy.

He asks about her history. Did she grown up drinking well-water? Was she exposed to chemicals, herbicides or insecticides? All put a person at risk for developing Parkinson’s disease. Originally from Tennessee, she grew up drinking well water, and worked for years in a factory making shoes. She became an LPN later. She lives with her daughter, these days and is a great great grandmother. In Tennessee she raised three of her grandchildren.

The doctor asks her to sit on the examination table, and he takes her wrist and moves it. As he gauges the reaction to movement he speaks, commenting “Yes, it’s quite rigid on the right side… less rigid on the left.” He motions to the Chinese physician, who comes closer and feels the rigidity in her movements. Face to face with the physician, the constant movement in her jaw is obvious and he comments that the Sinemet will eliminate the rigidity in her limbs, but may be less effective on her tremor. Describing the types of PD, he tells her the tremor dominant type of the illness tends to progress slower. He regains his seat behind the desk and begins constructing a chart of incremental doses of Sinemet, beginning with a quarter tablet. He quickly adds that if a quarter tablet makes her nauseated, she can try cutting the quarter in two pieces. On the other hand she may want to invest in Motilium or Domperidone, because feeling nauseated is one of the worst sensations he knows of. He would like to see them again in four to six months, and please take a card, if they have questions they can call his assistant who will discuss the questions with the doctor.

The Surgical Option

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He with his wife’s support, had prepared to undergo deep brain stimulation. He lay on the surgical table. The surgeon had installed the electrical lead within his brain when he suddenly stopped breathing. Over three minutes passed before he was revived. Apparently, they sewed his skull up and left the wires within his head. The tremor which moves both his hands goes unabated. The tremor continues with the doctor’s recommendation to try Artane, or trihexyphenidyl. The physician inquires whether he’s had vivid nightmares. The patient nods and his wife agrees, “Oh, yes.” The doctor observes the medication is doing little to calm the tremor. It has some rather nasty side effects in people older than sixty; it can interfere with short-term memory and in some men may inhibit the bladder and result in urinary retention. The doctor informs the couple, patients with frequent nightmares are also likely experiencing mild cognitive decline. He thinks it’s time to phase out the Artane, which may contribute to the muddled mind. Another medication capable of silencing action tremors is the barbiturate, Primidone. It’s sedative effects would put the patient in a very sleepy state, where performing any function with the hands might be risky. The doctor urges the couple to consider returning for a fresh surgical consultation, he believes the best solution to the tremor in his hands is still deep brain stimulation. Coming to the side of the patient the physician tests the fluidity of movement in his wrist. There is no ratchet-like movement. The patient demonstrates that slow movement of his hands calms the tremor- he takes both hands and makes deliberate circles in front of his body. The doctor enthusiastically exclaims he should try a Tai Chi class. The doctor demonstrates the measured motion of the exercises. The wife comments the previous physical therapy sessions were especially helpful. She could see improvements. He stood straighter and almost walked normally. She volunteers that their home has undergone some renovation, in order to allow her spouse movement throughout the interior. Several interior steps have been fitted with a gradually incline, so her husband can access all levels. When they are out in the world her husband prefers the walker, though when they are going long distances he uses the motorized scooter. He tries to maintain his independence. Another concern is his back. He recently underwent a set of injections to the nerve roots to dull the pain that makes standing unbearable. The pain impacts his ability to move and thwarts what motivation he has to exercise. The doctor recommends another round of physical therapy and encourages the patient to get out and walk. The bent man looks at his hands and comments he used to be an illustrator. Now he can’t even write his name. The doctor suggests wearing a set of wrist weights. People with tremor have found the added weight dampens movement. He may even find he can use his hands some. The doctor reminds them an alternative solution is to retry the surgical option.

Man with severe tremor asks for Gamma Knife surgery

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The small man has been plagued with tremor since his diagnosis of Parkinson’s disease more than twenty years ago. He comes in to the examination room with his wife and a packet of information under an arm. He has the blank visage of a PD patient. When the doctor questions what he’s brought with him though, his expression breaks and he looks almost excited. With the papers in his hands, they flutter about and his wife intercepts them. The patient takes a seat. The hands are moving and distracting him and his wife places the pages on the physician’s desk. The doctor pauses and looks at what they have brought in.

The information from the Michael J. Fox Foundation for Parkinson Research internet site and describes a study of 183 patients with essential tremor or tremor brought on by PD. The study and results were presented in a poster session two years ago, on November 2, 2009. The American Society for Radiation Oncology released a report for the press. They called the intervention, “a less invasive way to eliminate tremors caused by Parkinson’s disease and essential tremor than deep brain stimulation and radiofrequency treatments, and is as effective, according to a long-term study presented November 2, 2009 at the 51st Annual Meeting of the American Society for Radiation Oncology. “The study shows that radiosurgery is an effective and safe method of getting rid of tremors caused by Parkinson’s disease and essential tremor, with outcomes that favorably compare to both DBS and RF in tremor relief and risk of complications at seven years after treatment,” Rufus Mark, M.D., an author of the study and a radiation oncologist at the Joe Arrington Cancer Center and Texas Tech University, both in Lubbock, Texas said. “In view of these long-term results, this non-invasive procedure should be considered a primary treatment option for tremors that are hard to treat.”

The doctor shakes his head and comments that destroying a small region of the brain to control involuntary movements is not a new idea. There’s evidence that prehistoric man drilled holes in the skull, perhaps to release evil spirits or to still tremor. He explains to the patient and his wife that this method uses a beam of radiation to essentially thermo-coagulate an area of tissue, and goes under different names- Cyberknife, Gamma Knife and Synergy are a few. The target is the Ventralis Intermedius nucleus or VIM. Different strengths of radiation have been tried, with varying results.

The wife reads from the sheet in her hand, “With a median follow-up of seven years, 84 percent had significant or complete resolution of tremors. In patients with Parkinson’s disease, 83 percent had near or complete tremor resolution, while those with essential tremor had 87 percent of this degree of tremor resolution.”

The patient is not able to undergo deep brain stimulation, as he has metal bits embedded in his body and brain from his years spent in Vietnam. DBS surgery requires the patient have an MRI of the brain, something not possible for a person with metal shards, since the magnetic field may cause the metal to move, creating internal bleeding. Stereotactic surgery can be performed with the use of a CT, rather than an MRI, to position the beam of radiation.


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