David

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He gets anxious behind the wheel of the car, cursing at people who pull out unexpectedly from their hidden driveways; he grips the steering wheel tighter. When his daughter drives, he clasps the handrail by his temple and doesn’t let go until they have arrived at the grocery store. She needs to take him by the arm, because he walks slowly and will stop if she engages him in conversation. If she lets go of him she’s afraid they’ll never leave, he’ll get caught up in looking at the variety of breads, instead of just choosing the multigrain and moving on. With the three girls, he is less serious. Their energy draws away some of the anxiety he carries with him, all the time. The youngest asks him whether he likes a spread of sun-dried tomatoes. He has to adjust his hearing aid before he asks what she just said. She doesn’t mind repeating herself to her grandfather. Her face is intent and her thick eyebrows high when she’s asked him three times. He makes a face at her; sundried tomatoes are not his thing.
The daughter mentions her father’s driving to the physician, conveying her apprehension over the anxiety it causes him. The doctor asks whether he’s been involved in any accidents. She shakes her head. The father adjusts his hearing aid, and it squeals and he flinches. How often does he drive? The patient answers now that he can hear the questions, he drives several times a week, just around town to get groceries, sometimes to the hardware store, and to the senior center where he meets other chess players. The car gives him freedom. Without the car, he would be dependent on someone to take him places. The daughter sees that time coming; the patient cannot conceive of that life.
Quality of life is important, the doctor notes, as he begins the physical exam, and asks when the patient last had his medication. He takes his pills with 2% milk and coffee, Latin style, though he uses instant instead.
The daughter has urged him to try Cremora instead of milk, but he hasn’t tried it yet. She reminds him the milk protein in the coffee competes with his medication. He might have more energy to walk if he used Cremora, he nods, though she has told him before. The physician comments that he needs to try to exercise every day, if not a walk, then at least some stretching. The doctor takes an emergency call and steps outside the examination room, leaving the medical student briefly with the patient and daughter. It is silent in the room, until the student engages the two demonstrating something he has noticed in the patient. A stooped posture, he demonstrates by rounding his head and shoulders, impairs his breathing. He tells the patient he can hook a broom, or cane between his elbows, to open the chest and practice standing against a wall so that the heels, buttocks, shoulders and head all touch, then move away and stand erect. The doctor re- enters the room, corrects his posture and asks whether the senior center offers yoga. The patient smiles and admits he thinks only women attend the class.

Ten Years

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Having seen the patient repeatedly over a span of ten years he expresses his frustration when he learns she only tried the Seroquel twice, and never at a high enough dose to cause her to sleep solidly for several hours. It gave her a nightmare, she claims. At that dose, it could have no effect, counters the physician. You were probably upset about something else in your life. She raises her voice telling him he is not listening to what she has to say. While she speaks, her body contorts with dyskinesias.
The physician wants to know when the dyskinesias begin. The patient answers it depends upon when she takes her medications, and that depends on what she has done the night before. He directs her to tell him about this morning because her dyskinesias suggest she is overmedicating. She needs to stop taking the Sinemet throughout the night, and sleep continuously for several hours. If she were sleep as he recommends, she would have to wear Depends or something comparable, because she would not wake to use the toilet. The friend nods in understanding, but the patient is still upset. This is no quality of life, the physician comments, looking at the patient. You have to cut back on the Sinemet.
She tells him she feels she can’t breathe, and thinks she will die. Adamantly, he tells her patients with Parkinson’s disease do not die that way… he admits though it can be very scary. The friend asks, Is there nothing that can be done, when she feels that way?
The doctor shakes his head and tells her, there is nothing to use on a regular basis. The episodes pass, it’s like childbirth… though your anxiety about the symptoms makes it worse and heightens the feeling. Then he explains respiratory dyskinesias affect the muscles of the diaphragm and intercostal muscles between ribs, inhibiting regular movement of the chest muscles in normal breathing. The real solution is to regulate the Sinemet so dyskinesias don’t occur. And seroquel might be helpful as well.
The physician instructs her to resume making the liquid Sinemet each morning and he writes out the recipe which he tells her to sip every hour and a half, during the day. She must keep it away from light, in a thermos, in the refrigerator and pour out the excess she does not use. She understands the recipe, she has used the method before. When she tells him she has someone visiting every morning for four hours he is pleased, he adds she also needs a pet. She nods and tells the doctor about the cat who lives with her. He nods and inquires, What does the cat think about the dyskinesias?
He goes into another room, he knows when I am not feeling well, she says. Sometimes he curls up with me when I nap.

Black and White Checks

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She’s the only person wearing a hat in the waiting room. Perhaps the dress is taffeta, whatever the fabric, it’s large blocked checks; black and white with a distinct waistline. She draws the stares of other more sedately dressed patients.
In the examination room she takes a seat opposite the doctor, and folds her hands delicately in her lap. She comments she lacks her gloves, then she inspects her manicured fingernails. The physician looks over at the younger woman, who wears a dress as well, and asks what brings them to the Parkinson clinic. The older woman volunteers she has noticed her left hand shakes at times. The doctor asks when she first noticed the symptom. She looks up but her focus seems indiscriminant, she responds it’s been awhile, a year or so, maybe longer…. and she looks over at the younger woman, who nods her head and takes a notebook from a large handbag at her feet. The blond much younger woman verifies the tremor in her left hand appeared three years ago when they were on a cruise.
The physician asks about the movement: does it happen at rest? Does it improve with a glass of wine? The older woman interrupts the questioning; it improves with vodka and tonic, and the physician smiles fleetingly, turns to the younger woman, and asks what relation they are to each other. The younger woman replies she is the granddaughter and lives down the block from her Nanna. She tips her head in the direction of the elder and relates she dreads having to visit a doctor, which is why she is present. She cancelled the appointment three times before a family member agreed to attend with her. Behind the desk, the doctor nods, gazing at the women in front of him.
The patient fixes the physician with her pale blue eyes and comments she heard he was among the most highly rated neurologists in the area. The specialist smiles, commenting she may suffer from an essential tremor. Does she recall her parents or grandparents having tremor? The woman gazes above the doctor’s head and recalls her grandmother’s head and hands shook. The doctor nods and asks her to raise her arms straight out in front of her. The skin visible from the three- quarter length sleeves is pale, almost translucent, but her hands appear curiously unwrinkled, her finger joints slim and her moderately long nails painted a soft pink. The right hand jitters quickly and the left also moves, though not as dramatically. He asks how old she is and the granddaughter answers eighty- five. Asking whether she has noticed any movement of her head, the woman looks to her granddaughter, though she answers herself; sometimes she feels her head jittering like one of the bobble- headed characters. The younger lifts her eyebrows and admits she has only heard her Nanna’s voice wavering on the phone.
The physician asks the patient to sit on the examination table and she turns and stands, leaving her black woven hat on the seat of the chair. Without the brim over her forehead, her face is more visible. She wears her white hair drawn back in a ponytail at the nape of her neck. Her leather shoes have a small rubber platform and a hole where her large toenail peeks through. The doctor explains to the medical student, the muscles at the joint of her arm are supple, without rigidity. Reflexes are normal, as are fine hand movements. He asks the patient to retake her seat, scans her medical history and comments she is a healthy woman.
Essential tremor, the doctor feels secure in the diagnosis and asks how debilitated she is by the movements; do they prevent her from participating in activities? Well, No she replies. Her sphere of social contacts all have their own issues, though sometimes she has trouble applying mascara, and her writing has suffered terribly, though she has taken to communicating via email. The doctor suggests a trial of Inderol, which is effective in reducing tremor, to see whether she appreciates its benefits. She nods once and agrees.

The Golfer’s Daughter

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With some reservation, the patient allows the medical student and others to sit in during her first appointment with the movement disorder physician. She is young, petite and blond. Whether it is nerves or something else her right hand jiggles as does her right foot. The foot movement disappears when the physician asks what brings her into the clinic. Her right hand continues to shift in her lap. She glances down at her hand and tells the doctor the tremor in her hand used to appear only from time to time, but lately she has found the movement never diminishes, the way it had. She takes a breath and relates that it is hard for her to write on the blackboard, and that in desperation she has begun using her left hand, though her penmanship is worse.
Initially she attributed the tremor to nerves, and the start of the new school year, and her first year teaching third grade. She fears she has Parkinson’s disease, because her father was diagnosed with the illness when he turned sixty- two. His first symptom was a shaking right hand, and being a golfer the tremor compromised his swing.
The physician asks about other symptoms, and her face seems unsure. Her gaze takes in her torso and stops at her feet. With some hesitation, she confides sometimes her right foot taps, and she cannot control the movement. She used to tap her foot voluntarily while sitting at her desk in the classroom. Now she finds her foot will be tapping and she will suddenly become aware of its movement and will be unable to suppress the action.
As the physician asks her to move to the examination table, he asks her age. She is twenty- nine. He opens and closes her arm, holding her arm at the elbow. Then he asks her to pat her left hand on her thigh while he works the arm open and closed. Hmm. He looks at the people observing, and comments to the young woman he can feel some rigidity in the muscles on right side. He compares sides and narrates that her left side feels normal. The doctor leads her in several dexterity skills and comments the movements of her right hand seem a bit slower than the left. Then he opens the door and asks the patient to walk down the hallway so he can observe her gait. She holds her right elbow in towards her waist while her left arm swing is full.
Returning her to her chair, the physician asks how long ago did she first detect hints that something in her body might be awry, she gazes up at the ceiling and estimates it has been less than a year. He nods and remarks that people receive a diagnosis of PD when they have three of the classical textbook symptoms: tremor, slowness, and rigidity. Though many people have different presenting symptoms; a masked face, cramped small writing and low volume speech are several others. At present, she has some slowness in the movements of her right hand, as well as tremor and some rigidity. She looks into her hands in her lap as tears well in her eyes and run down her cheeks. Behind the desk, the physician comments that she may have what is called young- onset illness. He states that replacement of dopamine with levodopa should be reserved for later, but that relief of symptoms of tremor can be done with anti-cholinergic medications, like trihexyphenidyl. Also he suggests that a dopamine agonist (pramipexole) might also alleviate slowness and rigidity with a lessened likelihood of development of the motor fluctuations that are often seen within a few years when levodopa is started in young patients. She wipes her eyes, nods and states she would like to give it a try.

Family Affair

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Every chair and stool in the small room has a person in it and the nurse and social worker stand against one wall. Few patients bring so many family members, but this man has Huntington’s disease, a genetic neurological disease characterized by chorea or spontaneous uncontrollable movements, and such patients tend to have non- typical families. The patient sits in his wheelchair. His face is unshaven; he wears glasses and keeps his hands fixed in his lap between his knees.
The nurse taking his weight and blood pressure notes he has lost fourteen pounds since his last appointment in June. The patient’s sister mentions this to the physician when he enters the room. The doctor asks the patient whether he has had trouble swallowing, and he shakes his head. The ex- wife comments when she comes by with meals he has been sleeping in bed, and she thinks he has been sleeping too much, and not eating enough. The doctor gazes at the patient telling him he sleeps like a teenager, while he informs the family in the room patients with HD have increased metabolic needs. He wheels his seat in front of the wheelchair, asking the stubbly- faced man how much exercise he gets, commenting he could use an exercise routine and to consider riding a stationary bike or walking every day. The sister remarks,
Well that went over well…
The patient rolls his eyes, as the sister concedes she has tried to get him to walk around the apartment complex he lives in, to no avail.
The doctor recommends Boost, Ensure or smoothies; added calories will thwart further weight loss. The patient’s voice is unintelligible, yet the physician knows him and the remark he makes. Heavier patients with HD tend to have an easier course of illness. The physician asks about the time the patient retires to bed at night, and the patient responds when he feels tired, around one, and sometimes later. The physician nods in understanding, commenting under those conditions one might sleep later in the morning, but not until 4:00pm. He examines the list of the patient’s medications on the computer and suggests decreasing the nighttime risperidone dose by half.
On physical examination, the patient feels rigid. The doctor inquires about when he first received his diagnosis, noting he is in the rigid phase of illness, which occurs after in advanced stages of the disease when most chorea has subsided. The ex- wife and sister agree it has been ten to eleven years.
Wearing a black dress and blue glasses, the social worker comments she is beginning a support group for those with HD, and their families. They will meet in the Orlando area. She takes several email addresses so various arms of the family will be informed about future activities revolving about Huntington’s disease.

Navigating the Seas: Parkies of the Caribbean

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We are eighty or so people of the three thousand on the Navigator of the Seas bound for the Cayman Islands and Cozumel. Scheduled are two days of lectures, workshops, dinners and gatherings organized by a travel agent and small group of women from the Parkinson Research Foundation, with Doctor Sanchez- Ramos specialist in movement disorders, Mary Spremulli- speech therapist and Eman Nakshabendi- dietician.
Dressed in pirate garb with ornate boots and a tricornered hat, Larry Hoffheimer, founder of the PRF and Brian Curro the director, welcome the group and explain briefly how the conference will proceed. Shorty after, we disband to our staterooms and are soon called by the captain to participate in the safety drill. The raging pirate theme draws heads as two perspiring buccaneer vixens pass passengers waiting shoulder to shoulder in the scorching sun of Broward County and Brian Curro attends the required drill dressed in his brigand costume, appropriately sweating into his eight-inch beard which adorns his naked and quite hairy ample belly. Others less ostentatiously dressed mingle among the ship’s population, though with some knowledge of Parkinson’s disease you may notice them. Some have the Parkinson jiggle of the hand, others the forward bent posture and quick steps. Some use wheel chairs, others use walkers, most have a caregiver at their elbow, or not far away. Many blend in, their disease going unnoticed by the general population.
In the conference rooms on days at sea we are something of a family, all somehow involved in an illness that is progressive, debilitating and has no cure. After twenty minutes or so in the warm meeting room, some heads nod forwards in slumber, while family members remain attentive to the details of the physician’s lecture. Mary Spremulli gives a lecture on Methods to Improve and Strengthen Your Voice on the second day. She shows before and after video clips of several of her patients to illustrate the changes that are possible after regular work with a fifty-minute exercise class that combines voice and physical movement. Eman Nakshabendi gives a lecture on the daily requirements for optimum health and addresses other concerns like the maximum dose of vitamin D. There is a bootcamp workout and yoga for patients and at the end, a session in which all are invited to probe the panel of healthcare professionals with questions.
On the eve of the final day we gather again and under the influence of rum punch, appetizers and gold coins of milk chocolate Larry Hoffheimer thanks all for attending and reiterates the major goal of the PRF is education. He invites us to attend again, and mentions another seminar to be held in Tampa, Florida in March, 2011. Before we break apart to attend the nightly show, peruse the venues of live music or visit the casino, we vote on the most dapper pirate. Three elaborate pirate patients walk the plank strutting their swords, mustaches, patched eyes and striped trousers. The guy with blousy striped pantaloons, an ample white smock with romantically wide sleeves, eye patch and kerchief draws whistles from the crowd. He stands bent at the waist though he was tall once, he face is static as a mask and his long legs take small shuffling steps.

Is the Illness PD??

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The couple is still not sure whether the spouse benefits from taking Sinemet. His expression is immobile and he sits like a statue in the seat across from the doctor, not twitching, not blinking, not moving at all. The wife answers most questions after considering them, she raises her hand, adjusts her glasses, pats her husband on the wrist, puts her head down as she thinks. All the simple random movements people make while in conversation, the husband lacks.
The patient feels he is rigid, but on physical examination, the muscles surrounding the joints are loose and supple. The patient walks well, swinging both arms though he takes small steps and turns using two feet, rather than spinning on one foot. The physician comments patients with lower body PD, also called vascular PD retain their ability to swing their arms.
Behind the desk, the physician considers the amount of Sinemet the patient takes daily, noting it is a moderate dose. He inquires into what the spouse has for breakfast and explains that dietary proteins and Sinemet compete for uptake into the brain. In order to maximize the effect of medication, many patients need to cut back on the proteins they ingest during breakfast and lunch, and have their day’s allotment of protein rich food in the evening, when they do not intend to go to the county fair, or dancing.
The wife responds they are accustomed to eating a large breakfast with eggs, bacon and cereal, as well as coffee with milk. Near three o’clock, they have their main meal and later in the evening, they have something light. The spouse realizes this is the reverse of what the physician is advocating. The patient walks in the mornings after breakfast, and he has an exercise routine he begins at five in the afternoon; he seems not to feel especially slow or encumbered by the amount of protein he takes in.
The doctor concedes he may not have true Parkinson’s disease, but may have a variant, like vascular PD, which responds less to dopaminergic medication. The physician urges the pair to try to cut down on the morning proteins, to see whether the spouse feels some difference- less slowness and less rigidity. If he is averse to cutting back on proteins, he can increase the daily dose of Sinemet to 2.5 tablets 4 times/day. They may also try accomplishing a blend of the two strategies, decreasing proteins a bit, and increasing the Sinemet a bit, with the goal to find out whether the medication decreases the patient’s rigidity and slowness of movement. If the patient feels no benefit from the medication, there is no reason to continue taking it. Sinemet is only for the relief of symptoms; it does not affect the underlying course of any disease.

Is this PD?

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The physician prefaces the clinical visit stating the patient has an atypical type of PD. Arriving with her daughter, the patient reveals her balance has gotten noticeably worse since December, her daughter nods her eyebrows high. The physician concedes Sinemet has little affect on gait and balance.
Two years ago, the older woman was hospitalized when she had an episode of being unable to move from her bed. The daughter explains the root cause was due to a urinary infection, and her mother decompensated. After several days, she recovered use of both limbs and was walking soon after. Looking for a potential stroke, physicians ordered an MRI of the brain, which revealed two old lacunar strokes, and diffuse changes due to insufficient blood flow caused by chronic microvascular disease. The doctor behind the desk explains when these sorts of changes occur in the front of the cortex, a syndrome of lower body parkinsonism results. Slowness and rigidity affects the legs much more than the hands and arms. People with this diagnosis typically have a full arm swing, yet small shuffling steps.
The patient agrees this seems to be her scenario; her feet and legs are much more impaired than her hands and arms. The low volume of the patient’s speech causes the physician to ask whether she has always had such a light voice. The daughter nods agreeing her voice has changed, and looks over at her mother who points out that sometimes she talks too fast and people fail to understand her. The doctor nods declaring the speech pattern is similar to how patients walk, with quick small steps, and he begins to explain that Parkinson’s disease impairs sensory integration. How do we know this is true? He answers his own question, stating when a patient with PD acquires additional sensory input, for example, a therapist instructs the patient to step directly on red stripes on the floor, by concentrating on the lines and placing the foot on each one, the patient is able to pass through a doorway she previously froze in midway.
Both the patient and her daughter are uncertain Sinemet is really helping her symptoms. In prior times, the doctor states, a patient would be admitted to the hospital for a drug holiday. All the medications would be completely stopped and then gradually reintroduced at much smaller doses. It is clear then, whether Sinemet actually relieves slowness and rigidity. Instead, because drug holidays are deemed extremely dangerous, the patient can now slowly cut back on the Sinemet, by eliminating a dose every other day. The goal is to discover whether the patient suffers from a deficiency of dopamine. He warns this may take several weeks, because some dopamine terminals may retain the ability to store an excess of the neurotransmitter. At any point in the process, the patient may decide she feels more agile with the medication, and then gradually resume building towards her customary dose. Discovering what exactly the patient’s body needs means she will not be taking medication needlessly.

Two Cases

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The fabric of her black trousers drapes over the angles of her thin thighs. The nurse did not weigh her today. She is known to have her blood pressure drop, and if she stands, she’s likely to pass out. Her torso bends forwards making a large hump form in the middle of her back. The caregiver urges her to sit upright in the chair, and holds her arm on the arm rest as the doctor summarizes her medical history, and how he thinks he can help her today.

He had thought she suffered from a variant of Parkinson’s disease, multiple system atrophy, though he is unsure whether she truly fits the diagnosis’ criteria. An MRI would enlighten him, but would probably not change her medical treatment; which is largely to keep her as comfortable and content as possible. To do this he would like to increase the Seroquel she takes at night, to ensure she sleeps for several hours without waking. Her left leg no longer moves and has to be placed on the footrest of the wheelchair. Her left hand has a resting tremor, and no reflexes can be coaxed from her. She is ninety- two and her family does not want to her to have a feeding tube placed, and her caregiver says she eats well.

From behind his desk, the physician asks the caregiver whether the patient ever speaks, and she nods and confides she tends to be bossy. The woman caretaker wears a short sleeve shirt exposing the tattooed calligraphy on both her arms. She has milk chocolate brown skin and long twisted dreadlocks worn away from her face. When the patient’s stringy hair falls over her face she brushes it back over one ear.

The second patient is tall, brown- haired and looms over the doctor as she strides into the small office and sits in the far chair. Her half- sister has accompanied her today and has gone to search for the patient’s purse, which hangs from the nurse’s shoulder, who takes the patient’s blood pressure. The patient comments her sister is probably lost, and the nurse wearing wine- colored scrubs, comments she will go look for her. She hands a large chrome and leather purse to the patient and leaves the room rolling equipment with her.

While the patient and doctor speak about her illness the patient’s face moves spontaneously. She grimaces slightly and extends her head backwards. She takes the movements in stride as the doctor comments her face seems to be moving more than formerly, and the patient adds she has noticed more movements of her face and f

When having a pedicure, the man at her feet had problems; her feet, ‘flapped around’. Switching the subject, she confides she was upset the staff at the VA failed to inform her that her husband, would not die right away after being diagnosed with rapidly progressive ALS. She began planning his funeral. She planned the funeral for fourteen months before someone enlightened her he would probably outlive her.

The half- sister who is tanned, slender and six years older appears, smiling. Her hair is cropped short and she wears a bright pink bow on the right side of her curly head. She explains she and her sister had different fathers, though they once all lived in Detroit. It was a different city then. The patient tells us she could take the bus all day. There was an amusement park and a theater; it was a proud city on the lake and a river.

The physician recommends speech therapy and Risperdal which will dampen the patient’s chorea, and she seems amenable to both. The physician inquires if the nurse coordinator has any cards the patient might carry, which say she has Huntington’s Disease- explaining her staggering and other symptoms, if she is stopped by the police or worried neighbors while walking her four dogs.

Patient from Boston

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The patient is from Boston and she pronounces the word head with two syllables. She wears her grey hair short around her face and the frames of her glasses are stylish and complement her eyes. Her spouse is small and Italian. He wears a hearing aid in his left ear, a turquoise polo shirt and he speaks loudly with the accent of a hitman. She scans the three women observing and tells them not to get old. She is seventy- five, but has the energy and demeanor of someone younger.
She says she has trouble eating, and adds perhaps that’s not a bad thing; referring to her rounded shape. The doctor asks exactly what seems to be the problem, because the typical parkinsonian tremble occurs at rest, not when engaged in activity. That sort of tremor is an action tremor, or an essential tremor, what Katherine Hepburn suffered from. He asks her to perform several dexterity measures, and her tremor appears slight, hardly incapacitating. The physician points at her and tells her she is not being honest with him and she concedes, that she feels the tremor is larger than it perhaps appears.
Though she currently takes two and a half pills of Sinemet three times a day, she feels little effect from the medication. The doctor asks what she eats for breakfast, and she tells him she had a bowl of cereal with milk. His eye brows shoot up and he exclaims the amino acid building blocks of proteins in the milk compete with the levodopa for access from blood to brain. That may be why she has noted no benefit from the medication. If she is uncertain whether her medications are working, she should attempt a purely vegetarian diet for a week or two, with as little protein as possible to see if the levodopa is working to alleviate her symptoms. A second solution is to increase the dosage of Sinemet (levodopa/carbidopa). He tests her arms and feels some cogwheel rigidity in the muscles. She writes a sentence for him to demonstrate the state of her penmanship, and her handwriting is miniscule. Yes, the physician nods, her writing is typical of someone with Parkinson’s.
The doctor asks the spouse whether he sees any improvement in his wife’s symptoms and he shrugs. He comments later she has told him she feels unable to move from her chair, and the physician nods and states initiation of movement is hard for those with PD, though when they get moving it becomes hard to stop. She mentions she exercises every morning and the other day performed thirty-one repetitions of sitting to standing. The physician praises her for exercising and encourages her to continue, telling her that is the best thing she can to for herself. He writes a new dosage schedule to increase her medication and arranges for a followup visit.

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