Healthy Steps Day 1 on PRF Cruise

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Healthy Steps, Day 1 Workshop by Linda McDonald

By Kate O’Neill

Linda McDonald speaks about the lymphatic system, and it’s function in our body- to move the toxins through and out of our bodies.  Though the program Healthy Steps was designed for cancer patients, she’s confident it’s helpful for people with PD.

“Tiny Bubbles” plays from the audio-  music in the style of Frank Sinatra.  She asks those to stand and sway to the music as they blow-  blowing is to open the chest, lungs.  She asks all to blow upward, extending the neck and spine.  Now we put our right ear to our shoulders, on the left.  Deeply breathing all move both shoulders upwards and around.  We are reaching and holding, focusing on slow movement with deliberation, not aerobics.  The amplifier on her microphone fails as she swings her arms in circles, asking, “ Can you hear me? “  She reassures all that if they can only get so far, it’s fine.  We perform a second set.

In the back, I hear caregivers reiterating the commands she makes to patients.  A woman tells her spouse, “You have to exercise”.  She’s not smiling, but intense.  Linda asks for the music to slowly fade, telling all  they have just opened their lymphatic system.  Asking how they feel- the responses are: opened up, tired, looser.

The program called Healthy Steps began in the early 80’s.  Formulated by a family with a dancing  background, for their mother afflicted with cancer whose course of illness looked bleak.

Linda’s set of helpers  passes out blue plastic plates.  The helpers move without hesitation or encumberment.  She asks all to stretch out their arms, holding the plate above their heads.  Imagine a fan- dance; blue and red plates waving through the air, Linda gives directions- having discarded the microphone.

The music from past eras crescendos up and down, then ends.   A slower tempo begins as a horn blows.  Two couples in particular- their wives coach their spouses, encouraging and reiterating commands.  The fellow with marked camptocormia- a severe bend of the spine throws him forward over his thighs, has trouble extending his arms above his head.  The woman who told her husband he must exercise more laughs as the helpers distribute bamboo sticks among the attendees.  All extend their arms up to the ends of the stick working on range of motion.  The music lowers to soft as Mary’s voice gives commands to raise and lower their sticks.  A hush falls over the room as they work.

Linda has her left hand on her hip, speaking of the people in Korea, who use the technique.  She shares her background is in dance.  Again, she discards her microphone- she wants to demonstrate a move in which the patient holds onto an object and balances, raising one foot, shifting body weight from side to side- “Weight transfer is a subtle thing” .  She asks people to work on this.  Weight transfer is essentially walking, focusing on shifting weight- step, step, fast step, fast step.  She encourages people to play music in their homes; the rhythm should even help eating.

“It doesn’t even have to be the big things”.  She asks people to think of their feet and ankles- to strengthen their ankles and move their toes and feet.

With a partner behind her she takes a stick in both hands.   She holds them horizontally extending them so her arms extend and retract, their steps coordinated. They are connected through the two sticks.

“You are made in the likeness of God.”  “You are a finely tuned instrument of….The mind is mightier than he tallest mountain” “You are great.  Begin to harness the power inside that will make you even greater.”  The affirmations are given after she’s asked all to close their eyes, or simply listen.  She says she looks forward to meeting them all.

The time runs out and Marilyn reminds us what activities are in store.  An agile white haired woman helps her spouse from his seat, instructing him to put his arms around her neck.  He stands and she shifts him into his wheelchair.  It’s time for lunch.

PRF Cruise: Vignette from Voice Aerobics On Board

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Voice Aerobics on Board Freedom of the Seas

by Kate O’Neill

Mary Spremulli, our outstanding, dynamic Voice Aerobics instructor posed and answered a series of questions in her enlightening session on voice and swallowing difficulties in PD.  She then led the class in a series of exercises.

Why Does PD cause swallowing problems? It is an inter-related system- changes in the vocal folds make them stiffer, the tongue gets less coordinated, losing strength. Patients have reduced sensory awareness and all these issues lead to swallowing disorders.

People with PD may swallow too late in the respiratory cycle- swallowing while exhaling.  We intuitively know that breathing takes precedence over swallowing- one catches the breath before being able to drink.

Why exercise breathing muscles?

Pursed lipped breathing traps air in the lungs, slowing down breathing, promoting a slower more rhythmic  exchange of air.

Parkinsonian face: we make judgments about people by their facial expression.  Studies of nurses observing people with PD found they perceived people as unapproachable and less friendly.

What can I do to strengthen my own voice?

Therapy never ends- we exercise forever, so to can we augment our voices- hence Mary began voice aerobics.  She’s created several products- a DVD, CD  and playing cards-

Voice aerobics is a whole body approach incorporating basic exercise and voice therapy.  It’s a home-based program.  Even patient’s with Lewy-body dementia are able to practice the exercises- focusing heavily on posture.

Self-education and self-empowerment- puts the control of symptoms in patient’s hands

Though the illness focuses on the loss of movement, communication commonly suffers as the voice comes under the affects of illness.  When the voice is focused on, patients are more able to be present.

Mary Spremulli begins Voice Aerobics- a voice exercise program.  Everyone shifts to face the screens on the other side of the room.   Mary’s wearing a microphone that drapes to her mouth, so her hands are free.  She wears a red t-shirt, Bermuda-length navy shorts, white socks and tennis shoes.  Her flawless skin gives no hint of her age.

-Everyone has a DVD in their bags

All people have been given two devices: a breather- strengthens the muscles- respiratory muscles, and an expiratory tool to improve respiration- thereby decreasing the probability of inspiring things other than air.

She describes the 57 minute program on her DVD.  This afternoon we will do 10 minutes or so of the program.  These exercises are relaxing- Breath work begins with posture.  Sitting up straight in seats, we inhale and exhale with pursed lips: exaggerating the rounded lips: breathing out is twice as long as the breath in.  Exhaling now with a shh sound- tightening the abs. This time we resonate making a hmm sound as we exhale. This time, we inhale as arms come chest level, holding the stretch. Inhale with hands clenched, rising with breath.

The screen shows Mary in a classroom full of white haired people wearing gym shoes.

We are making E sounds as we raise and lower our shoulders- she notes she would like to see our teeth as we ascend and descend from low to high notes. Now O sounds as arms rise out from our shoulders, going up and down.  These warm up exercise stretch the vocal cords. Hands and arms rise in a ahh

-Look friendly- Mary coaches, prodding all to smile as we emit and e-sound.

Program Two is to power up the voice.  Mary’s instructed us to focus on the movement of the voice- moving.  We mimic her sounds. . .  much like choir practice.

Mary prompts us to perform the sounds when engaging in daily activity- not having to break for a distinct time to do voice practice.  Leg lifts: as the leg rises the voice goes up higher notes.  Voices fill the conference room; heads dip as she does. Vowel sounds next; exaggerating movement of the face. These are to the beat; eiou: sounds like some American Indian  folk song- performed with motions, there’s a drum beat on the DVD, and the recorded version wishes us- Happy Trails

The cool down means shoulder rolls and stretches with slow inhales and exhales, adding glides while moving upwards, then downwards. Shoulders are tied to the voice- stretching our vocal cords then shortening them. We rotate with hands clasped from left to right. Oh, Oh me, Oh my, Oh no. Ohm.

On the DVD, class members wear blue t-shirts.  Mary concludes with pursed lip inhales and exhales.  We are strangely invigorated.

 

 

 

Change Agent

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BY: MARK GORDON | DEPUTY MANAGING EDITOR

Retired Washington, D.C., lawyer Larry Hoffheimer long sought to mitigate risk for clients.

Yet his new venture is a six-figure gamble that he can successfully help people with Parkinson’s disease get more out of life. Hoffheimer’s novel approach, through a Sarasota-based nonprofit he founded, Parkinson Place, differs significantly from traditional methods that focus on medical treatment and scientific research.

The idea behind Parkinson Place is to provide a community center open to anyone with Parkinson’s, a chronic brain disorder that can lead to tremors and difficulty moving. The center, which Hoffheimer says cost about $100,000 to open, offers free classes, lectures and seminars, on topics from voice aerobics to dancing with Parkinson’s. It also offers daily camaraderie, both for people with Parkinson’s and their caregivers.

“There is no destination site like this anywhere,” says Marilyn Tait, executive director of the Parkinson Research Foundation, a Sarasota-based nonprofit that oversees Parkinson Place. Tait has worked in the Parkinson’s field for 15 years. “We really push education and awareness.”

Tait and Hoffheimer’s long-term vision is to build a franchise-like expansion model, where Parkinson Place can be duplicated outside the Sarasota-Bradenton region. “Other communities will want to have similar Parkinson’s destination spots,” Hoffheimer says. “The exhilaration and acceptance we have gotten in the (Sarasota-Bradenton) area is both motivating and gives us validation.”

Parkinson Place opened in September, on the first floor of a two-story office building off Bee Ridge Road, just west of Interstate 75. The 7,500-square-foot office was previously a cardiac research center.

Tait and Hoffheimer say a place like Parkinson Place fills a void in the medical community. The center also has a dual purpose, says Hoffheimer, in that it gives potential donors to the Parkinson Research Foundation a tangible focus-point for giving. An edge like that is crucial in the competition to grab fundraising dollars.

“There are a lot of Parkinson’s organizations that have been around for 50 years,” says Hoffheimer. “Plus, there is also Michael J. Fox, who has raised millions of dollars.”

Adds Hoffheimer: “I had no bait.”

Parkinson Place is now that bait. The glistening facility is designed with a Zen-based feel and includes a 2,000-square-foot lecture hall. The holiday season, further, provided several chances for Parkinson Place to host showoff parties for health care organizations that were also awareness-building opportunities. Says Hoffheimer: “Now we have a crown jewel to raise money around.”

Hoffheimer founded the Parkinson Research Foundation in 2005. The organization had $2.46 million in revenues in 2011, up 83.5% from $1.34 million in 2010, according to its IRS 990 form. Some of those funds were put toward Parkinson’s educational programs and conferences.

The funds were also used to help raise more funds — a fact that earned the foundation a low score from Charity Navigator, a prominent nonprofit grading organization. Charity Navigator noted the foundation’s fundraising expenses in 2011 were 63.7% of its total expenses, which is considered on the high side.

Hoffheimer doesn’t dispute the ratings, though he does quarrel with the ratings system, which he says penalizes organizations that spend big to get bigger. The foundation, in the past, has contracted with national mail-based donation solicitation groups to raise money. “It’s an expensive way to raise money, but there is no way around it,” says Hoffheimer. “I’m not apologetic.”

Hoffheimer has been involved in Parkinson’s disease research and outreach for 30 years, going back to his legal career. A onetime federal prosecutor, Hoffheimer was also a health care attorney and lobbyist, with clients including the Mayo Clinic. He worked for several Parkinson’s and brain research groups, which is how he developed his passion for the cause.

Hoffheimer’s cause, and passion, is now to get the word out about Parkinson Place. “Once we get people here,” says Hoffheimer, “we know they will come back.”

Aroma

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The examination room reeks of cat pee, the residual aroma from the previous patient who lives  alone with many cats but is too incapacitated to maintain hygiene.   Her very clothing was impregnated with cat urine   Now that the cat lady had gone, the nurse stands by the door waving it open and closed while the aroma inside weakens.  Examination rooms are small cubicles without windows.  The fluorescent lighting makes most people appear slightly green.  The next patient and her spouse find their seats in front of the desk as the physician apologizes for the smell.  The patient shakes her head, she can’t smell, but her spouse can and he smiles.

She’s called every other day for several weeks.  The nurse coordinator gave her a last minute appointment, when she thought a face to face meeting with the doctor might diminish her calls.  There are many concerns she’s eager to convey but her dyskinesias send her head and arms into motion.  The doctor puts up a hand and asks her to relax.  The next thirty minutes belongs to her.  Her shoulders seem to drop.  In front of him, the doctor has the handwritten notes of every call.  He spaces them out on the desk and tells the patient, every time she calls the nurse coordinator tracks him down and expounds on her latest complaint.  He looks at her meeting her gaze and she nods listening.

‘When the shower is too hot, what do you do?  You turn down the hot water.  I cannot turn the water for you.  You must do it yourself.  If you have too much dyskinesia, cut back on the Sinemet.  Take half a pill instead of the entire dose.  You do not have to call in for permission, simply do what you need to do…’

The  husband wears a green golf shirt and is tall and pale.  He interjects she’s reluctant to take the Seroquel at night.  She prefers to use the toilet when she wakes, and calls to him to help her out of bed. Her plea for help wakes him so neither of them sleep continuously through the night.

His tone of voice changes as he strongly explains sleeping six hours or so makes a difference in quality of life.  Fragmented sleep makes daytime less enjoyable; fatigue follows and she is apt to nap.  Her sleep cycle degenerates further, and she may begin to hallucinate, dreaming while she is actually awake.  Seroquel will allow her to rest.  She should not wake, and if she does she should take another half-pill, until she sleeps for six hours without waking.  If she feels anxious during the day, she may take a quarter of a pill.

She speaks then, not hindered by his tone.  Worried the patch isn’t work properly, she complains the square piece lacks sufficient stickiness to adhere to her skin.

‘Are you holding it on for at least thirty seconds?  The directions say it must be at least that long.  You can’t expect to take it off, either.  Put it on after you shower.  Have your husband help you.’

Having stated her problems and had the physician’s attention, she’s relieved.  The dyskinesias are gone.  She thanks him as she stands.  He comes around the desk and she hugs him spontaneously, while her spouse stands with his hand on the doorknob.

written by Kate O’Neill

 

Jealousy

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A personal letter to the doctor precedes the six month’s appointment. In it the spouse describes the ongoing issues which might be difficult to discuss or take up an extended amount of time.  The doctor read it several times before calling the patient’s home to speak with the husband.  The physician was concerned the family might own firearms.

The patient was convinced her spouse was having an affair with the woman in the adjacent apartment.  The doctor feared the patient might act on her suspicions.  The husband relieved him somewhat, they possessed no arms.  The wife however had verbally assaulted the neighbor during an aqua aerobics class they both attend, accusing her of sneaking into their apartment during the night, to bed with her spouse.  She hurled the flotation buoys at the neighboring woman, before the instructor was able to calm her.  The neighbor woman fled, shouting about her lawyer.  Several days later a letter from the lawyer appeared.  The attorney had filed for a restraining order and warned the couple about continued harassment.  The spouse detailed the events in the letter.  Her paranoia concerned him, as did her ability to lash out at the woman next door.  They had been cordial to each other until the event in the pool. He feared she might fixate on someone else in their life.

In the examination room, the patient appeared composed. With white, shoulder-length hair a subtle tremor shook her index finger and thumb of her right hand.  The nurse noted she had lost five pounds since her last appointment, and she answered she had been too heavy.  While her spouse sat erectly, she slumped, shoulders curling inwards, her gaze drifting into her lap.  She straightened a bit when the doctor asked how she fared.  She was well, nothing very much to report on her condition.  The husband and the physician exchanged glances.  The doctor asked what about her illness concerned her the most, and she replied easily she’d been sleeping poorly.  Nodding, the husband agreed, adding he’s found her awake watching old movies.  The patient spoke over his last words, ‘Montgomery Cliff in A Place in the Sun. . . he adored Elizabeth Taylor.  Young and beautiful, who wouldn’t?’  She directs the question to her spouse, her voice breathy, yet strong.

The new medication the doctor recommends will help her sleep.  When she’s sleeping at least six hours through the night she’ll have less anxiety during the day and the episodes of paranoia will fade.  Her facial features give no indication that she’s felt anxious or paranoid.

written by Kate O’Neill

 

 

 

Lying Awake

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The elevator is full and I step in as the doors close behind me.  The elevator opens on both sides surprising the people in front when the carriage stops.  It’s the third floor.  People step out, some gazing expectantly looking for signs to indicate the direction of the neurology clinic.  The woman in front of me carries her purse nestled beneath an arm.  She walks with little natural sway moving her legs with the slightest rotation in her hips.

She recognizes me from the elevator and allows me to sit in on her first visit to the doctor.  She’s a snowbird; in Florida to escape the snows of the Minnesota winter.  Divorced with grown children, this is the first year she’s heeded her desire to escape the cold North winds.  The clinic is far, but she has all day.  She’s renting an RV in a community called Southern Trails, to the east of the city.  The neighborhood of golf carts and plastic patio furniture has a pool and regular events for residents.  So far, she’s satisfied with the arrangement.

In St. Paul she sees her family doctor who prescribed Sinemet for her Parkinson’s disease.  Because her insurance would cover it, she made an appointment to see a movement disorder specialist to discover if there is something else she might do to improve her condition.  From across his desk, the doctor scans her paperwork, noting the years since her diagnosis, then inquires, ‘What would you say gives you the most difficulty?  How is your sleeping, swallowing, speaking?  Have you ever fallen?’

She brushes her hair from her cheek slowly, and smiles then gazes up the wall past the doctor.  ‘No I haven’t fallen, though I thought I might.  But I’ve never slept well.  Even when I was a girl, sleeping with my sisters, I would listen to them breathing or snoring and wonder why I lay there awake.’

‘How about physical activity?  How active are you?  I encourage all my patients to exercise regularly, every day for at least twenty minutes.  Coming out from behind the desk the physician asks the patient to step up onto the examination table.  She sets the bag on the floor and stands before taking small steps in a circle towards the table in back of the room.  While asking the woman to gaze at his nose and follow his finger as he moves it sideways, he notes her eye movements take small staccato steps, rather than flowing.  Explaining to the medical student at his side, he notes Parkinson’s disease affects all the muscles in the body, even the small muscles governing the eyes.  While he manipulates the wrist of the patient and then her elbow, he asks her to shrug and her shoulders barely rise.  She walks down the hallway as the doctor and medical student watch; no arm swing, small shuffling feet, she bends forward and returns to her seat.

In the room again, with the door closed the doctor gives her his impression.  She is slightly under medicated and would benefit from an agent that would extend the effects of Sinemet, either that or slightly increase her dosage.  If she is opposed to increasing her medications she could try abstaining from proteins during her daylight meals and saving her proteins for dinner, when she can anticipate feeling slower.  He explains Parkinson’s disease is an illness treated solely for its symptoms.  Researchers have yet to come upon an agent to slow progression, or reverse the die off of dopaminergic cells.  If sleep is her major concern he would recommend Seroquel, in a small dose.  She nods in affirmation.  ‘If you can make me sleep, I would be grateful.’

Written by Kate O’Neill

Incapacitating Dyskinesia

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Kate O’Neill

Her blond hair hangs thick and heavy as dyskinesia moves her head in random angles.  Her arms and shoulders continue to move as  she sits finally in the chair facing the physician.  It takes her several moments to settle; putting her bag at her feet and readjusting herself in the seat.  The doctor comments on her dyskinesia and asks when she last took her medicine.  It was several hours ago.  Her limbs move as she speaks, reporting she also has dyskinesia when her medicine is working well.  ‘How many hours a day are you free from them? ‘ the physician asks.  Her answer is lost in her movements, but the doctor seems to understand her anyway.

Diagnosed with Parkinson’s disease eight years ago, the dyskinesia has gotten worse.  Other medications added to her daily regimen have done little to control her movements.  Behind his desk, the doctor advises decreasing the dosage of Sinemet she takes.  The patient tells him she’s tried and has experienced episodes of tightness in her chest; her hands rest against her body momentarily and she explains she feels like she can’t get air into her lungs.  She feels like she’s going to die, because she can’t breathe.  The doctor nods.  He tells her the illness she has affects all the muscles in her body, even the small muscles that expand and contract between her ribs; the intercostals.  He checks the computer for her age while he asks whether she’s thought about having deep brain stimulation.  Mentioning he seldom recommends his patients consult a neurosurgeon, she would be an excellent candidate.

She’s thirty-eight.  She gave up working two years ago when her dyskinesia began to interfere with work.  A banker, she had a lot of public contact.  Several clients asked her manager about  her health and she recognized she would have to make a change.  The bank offered to place her in a position with less public contact, but she preferred to leave entirely.

The neurologist gives her the card for the neurosurgeon and asks her about other things; is she sleeping well?  How is her diet?  Her arms elevate and her head twists and it’s hard to imagine her feeding herself.  A caregiver comes in every day to assist her with daily tasks.  The doctor comments she’s lost ten pounds since her last visit.  He would like to see her walk in the hallway.  She’s never fallen, though she’s come close.  Walking seems to dampen the random motions of her upper body, and the doctor complements her stride.  Exercise would be good for her, he tells her.  She allows him to write her a prescription for physical therapy, as he urges her to think of the future.  Assisted living provides hot meals.  She reaches across the desk and shakes his hand before she leaves, her motions somewhat milder.

Peru

Posted by & filed under Weekly Journal.

by Kate O’Neill

She pushes her mother in the wheelchair into the confines of the small examination room.  The daughter speaks as soon as her weight hits the front of the chair.  She places one hand on the desk in front of the doctor, who gazes up at her from the forms in front of him.  Explaining the appointment was her idea, her mother is visiting from Peru and rarely sees a physician.  The mother has become increasingly slower over the last months; she was amazed at how she’s changed.  Ages ago she was told her mother had Parkinson’s disease.  The old woman in the chair shakes her head.  All medications make her ill, the daughter explains.  She doesn’t want to take any pills.

The physician faces the daughter, shaking his head.  Parkinson’s disease has no cure.  Treatment is directed solely to relieve the symptoms; slowness, rigidity and sometimes a tremor.  Most treatments are in the form of medications;  by supplying the brain with the neurotransmitter it lacks patients are able to move in a way they had previously. The daughter nods and admits her mother refuses to take any medications.  She asks about any other things they might do- surgery perhaps?  The doctor explains surgery is effective for patients suffering from dyskinesia; the random writhing movements patients are unable to control and come as a side effect from using dopamine for between several years.  The white-haired woman in the wheelchair shakes her head exclaiming something in Spanish.  Her voice is soft and whispery and the bend in her back makes her voice address lap.

The doctor spreads his hands and states, ‘There’s nothing I can do for you.  Parkinson’s disease is managed with medications; we address the symptoms.  They are helpful for many patients, but your mother doesn’t seem to want to try them.’  The daughter stares across the table at the physician and silently looks at her mother.  The hunched woman crunches a white tissue in her gnarled hands and the daughter nods and stands.  The nurse comes through the door with a folder, and the doctor shakes his head stating there is no charge for this appointment, he can do nothing for the patient.  The daughter takes her mother’s wheelchair and nods to the nurse, her eyes on the floor in front of her.

Greek Translation

Posted by & filed under Weekly Journal.

By Kate O’Neill
Two patients in addition to those scheduled have arrived in the last half hour.  The department of Neurology allocates thirty minutes for people returning for a follow-up appointment.  New patients are granted an entire hour.  The scheduling error has the doctor in a mildly irritated state.  The nurse coordinator pokes her head in the room indicating two patients are competing for his attention for the next appointment.  The double booking was done by the university secretarial staff, who was unaware of the length of time given to the doctor’s patients.
                  The new patient, who has waited twenty-five minutes arrives with his grand-daughter.  The patient is Greek.  His language, and his parkinsonism make his speech difficult to understand.  The black-haired girl comes along to translate his words.  She begins speaking as soon as they enter the small space.  Her grandfather has been cared for by his regular doctor.  When his problems became more severe the family sought an appointment with the movement disorder faculty.  The doctor explains his new patients normally receive an hour, but today’s situation is unusual as two others are waiting to see him as well.  The doctor shakes off his aggravation with the wave of a hand and asks, “What brings you to the movement disorder clinic this afternoon?”
                  The young woman gazes at him, stating, ‘Yes, but this isn’t our problem.  We have insurance and pay for our time.’  The doctor nods and sits as the grandfather speaks Greek in a whispery voice.  The girl bends in towards him, translating his words.
                  The main problem is he gets stuck every night.  Nodding, the doctor scans the paperwork.  Medications are listed, as well as the dose.  What does he mean by stuck?  The doctor explains patients with Parkinson’s disease suffer from freezing episodes.  The daughter translates, he has episodes of freezing but that’s not his current concern.  His right leg gets stuck inward and it occurs in the middle of the night while lying in bed.  The doctor nods and comes around the desk.  He tells the granddaughter he must check the rigidity of the man’s muscles, to see how well the medication is working.  As he moves the limbs of the bent man in the chair, he speaks about three common ailments people with PDtend to suffer from.
                  Tremor is the initial symptom in many patients, and he illustrates moving his hand in a fine jiggle.  The girl nods, she’s seen the tremor.  The left foot of her grandfather also jiggles.   Dyskinesia.  He repeats the word when the girl looks at him questioning.  The word describes the somewhat writhing-like movements patient’s endure.  Occurring after several years of treatment with levodopa, the unusual actions are caused by medication, a side effect.   The grandfather shakes his head.  What the physician pantomimes is not his problem.  He stands carefully, pushing off the arm rests of the chair, then turns his right leg inward so the toes of his foot meet the instep of his left side.  Standing, he speaks Greek and makes a face indicating with his hands the pain he experiences.  Nodding at the old man, the doctor comments, “A lot of pain.”
                  “Much pain, too much” and he retakes his seat.
                  “Dystonia.”  Explaining that it’s a muscle cramp that forces the limb into unusual sustained postures.  The doctor concedes they can be quite painful, and afterward leave the tissue sore.  He thinks if her grandfather switches his evening dose of medication to a sustained release variety, he may find some relief from the episodes.  The girl translates this and the man gives a thumb up.

Camptocormia

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Kate O’Neill

The patient’s hair is thin and he has it combed across the bald patch on top.  He’s been dyeing it.  It can’t possibly be so dark.  The hunch in his back makes him much shorter than he once was- that fold in the back is called camptocormia.  It’s as if his torso was ironed to his thighs, an unfortunate situation brought on by Parkinson’s disease.  Trying to walk while bent in half is hard.  He must strain his neck backward to see forward.  Gravitational forces drive him downward but hisliving spirit doesn’t submit.  Drinking from the water fountain is easy, he’s already bent.

Maybe if he had sought medical attention at an earlier age his posture would not have changed so.   The doctor doesn’t commit to being able to stall the bend of camptocormia.  Some patients seem to develop the bend in half, whether they seek treatment or go without.  Physical therapy and attention to posture would surely have some affect; perhaps a wife who consistently urges him to stand up straight would have helped.

The patient himself has no complaints when the doctor asks about his latest concerns.  It’s hard to hear his speech.  The end of his sentences are addressed to the floor.  His voice has that whispery quality familiar to patients who’ve had the illness for some time.  Asking about his activities, and his ability to swallow the doctor mentions he’d like him to see a speech therapist.  What he has to gain is not simply louder speech.  The therapist will work on breathing and probably recommend some exercises.  It’s hard to see any reaction in his face.  Seconds later the patient tells those in the room that he has enrolled in the local gym, and has been attending three days a week.  It’s been a few months now and the gym has become one of his weekly obligations.  He’s met several older members who also find exercise helpful.

The doctor rises to perform the physical examination as the medical student asks whether he joined a YMCA.  They have specific classes, ‘Silver Sneakers’ specifically for retirees.  The patient turns his head  while the doctor checks the flexibility of his elbow joint and tells the young man standing leaning against the wall, that he’s joined an LA Fitness, the closest gym to his home.  Flushing pink the young man nods his head.  The doctor asks whether he knows the place and he nods, it’s where he met his girlfriend.  The social worker smiles, she also has a membership there.  ‘A popular place.’ the doctor remarks, then commends his commitment to physical activity.

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