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.

B12?

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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.

Diagnosed in 1992

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She was diagnosed with Parkinson’s disease in 1992. Today her husband pushes her in a wheelchair. Her body is alive with movement. Her torso stretches diagonally across the seat, her arms twisting at her sides. At times her legs extend straight out from her hip joints. The motion doesn’t dissuade her from speaking. Her voice is strong, not whispery. Her questions and comments reveal the clarity of her mind.

The husband pulls his chair up to the physician’s desk and takes several sheets he’s folded, from his pocket. The first lists the medications his wife takes. The doctor explains the patient has symptoms that are difficult to treat. The dyskinesias she endures occur at peak dose and end dose. They occur randomly while she is on and off. The doctor presses the husband to document his wife’s movements throughout the day, for two weeks. While he prepares a chart he describes the “on” and “off” states to the caregiver. The husband questions the state his wife is currently in- though she writhes in motion, her muscles are rigid. Forty minutes later, her movements are more contained. Her feet rest on the floor and the muscles at her wrists and elbows are supple.

She is slender. Whether she was always so slim is questionable. The doctor asks whether she has trouble eating and she responds she must cut her meat into very small pieces. Her peach-colored blouse looks like linen and is carefully ironed. Her skin is olive, her hair dark and she smiles.

The doctor says they must slowly cut back on the Sinemet. The patient will become increasingly more rigid, but they plan to replace the decreasing medication with ropinirole, until the Neupro patch arrives in July. The dopamine agonist brings on less dyskinesia. The physician directs the spouse to decrease the Sinemet, so that in two weeks time she has weaned herself from the medication. At the same time he is to continually increase the ropinirole until she is taking seven pills daily. Though the Neupro patch may provide some relief for her dyskinesias, she is a suitable candidate for neurosurgery. Such patients typically have complex motor fluctuations, as does the patient’s wife. The doctor turns the sheet of paper over and draws a diagram of the surgery. He describes the electrodes that send signals to the brain. The wires run under the skin down the neck and connect to a battery pack that is worn in the chest. Bilateral surgery requires two packs, that are hidden beneath the skin on either sides of the torso.

The doctor prints out refills for the prescriptions, a consult with the neurosurgeon and a request for physical therapy with attention to breathing exercises. He asks the caregiver to call in two weeks and report on how his wife fares without Sinemet, and only ropinirole to control her symptoms.

Petite with dystonia and PD

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The patient is petite, delicate and dresses fashionably. She used to wear high heels when coming to her appointments. Then she fell twice. Today she wears red flats.

The symptoms of Parkinson’s disease are curtailed by the three times per day allotment of Stalevo, and the dispersible levodopa she places on her tongue every morning. The pain, pulling and burning in her dystonic trapezius is almost more than she can bear.

Dystonia is a condition in which sustained muscle contractions cause twisting and repetitive movements or abnormal postures. Dytonia can be an early sign of PD and can also develop as a complication of levodopa treatment of PD Treatment of dystonic muscles is difficult and has been limited to minimizing the symptoms, since no cure is available.

Some dystonias improve with levodopa and wax and wane with the dose of medication. The current patient suffers continually from the acute muscle spasm, regardless of timing with her medication. The muscle contraction lies between her shoulders, her upper back, and neck. It does not lessen. For two years she has carried the muscles cramps. Relief for her comes in Botox shots applied to the muscles of her back and neck. The shots themselves are painful. In order to get the correct muscle, the needle must be inserted, then reinserted, until the firing muscle is targeted, and then the botox is released. Individual muscle cells must take up the paralyzing venom and after several days the muscle is finally soothed into smooth flat tissue. The botox shots are usually given at three months intervals. Today the patient states her pain is substantial, yet the spasms have not drawn her head to one side. When she stands to walk, one shoulder is noticeably higher. Her arm swing is limited. Her next botox appointment is still several weeks away.

About 15% of patient receiving botox eventually build anti-bodies to the medication, which reduces or completely blocks the beneficial effects of botox. In these cases patients can use the alternate toxin, called type B. There is always the possibility that botox may flow into other, nonspasmotic tissue. In such instances, the paralyzing agent may cause her head to sag. She may experience muscle weakness; as some portion of the muscle fibers have been immobilized.

Aside from the dystonia, the doctor encourages her to take two of her 15 mg. mirtazapine pills. The drug is an antidepressant and taken at night, improves the quality of sleep. Her spouse is looking into acupuncture for the burning pain the dystonia brings.

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