Who Cares? -“Success Strategies for Parkinson Caregivers”

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Mtait

WHO CARES?

“Success Strategies for Parkinson Caregivers”

 

By MARILYN TAIT

Parkinson Educator, Motivator & Advocate

Executive Director, Parkinson Research Foundation

SPEAK UP!  “Keep Talking When No One Wants to Listen”

 

The non-stop highs and lows of caregiving put you on an emotional roller coaster whether you like it or not.  Unfortunately, the emotions often associated with caregiving are far from calming.  Anxiety, frustration, anger, loneliness, depression and fear can make for a rough ride.

 

Uncontrollable mood swings can take the joy from the day and rob you of a peaceful night’s sleep.  It’s common for long-term caregivers to feel the increased pressure of rising demands but for the good of all you must remain calm. The key is to let your feelings out a little at a time before you explode.  The fastest and easiest way is to keep opening your mouth.  There will never be a better time to talk too much!

 

  • Share your thoughts with family members and friends whom you can trust with your feelings.  Identify those who will listen objectively while offering sound advice and sincere concern. Gain strength and emotional support from those in your life who love you enough to listen.
  • Right your feelings by writing them down.  Journaling is an easy and effective way to release negative feelings the minute they pop up.  Write at random.  If your feelings are important enough to matter, they are important enough to write down.
  • Keep the line of communication open between you and your loved one.  Do not hold negative feelings in because it’s easier to say nothing.  No one can read your mind.  If you want others to know what you are feeling, tell them.
  • Talk to yourself.  Rely on the one who cares the most and is always ready to listen.  When you’re down, pick yourself up with praise and positive affirmations.  Always pat yourself on the back and silently take a bow.
  • Seek counseling when the emotional impact of caregiving knocks you down and you can’t get up.  If you try in vain to deal effectively with your feelings, do not hesitate to make an appointment with a professional counselor who can provide the necessary resources and emotional support you need.

 

Message from Marilyn…

 

If you cherish your sanity, speak up!  There is no good reason to harbor your feelings.  As a caregiver, think about what you are dealing with, physically and emotionally, and love yourself enough to open up and let your feelings out.  Your mission is to maintain a positive relationship between you and your loved one.  The caregiving challenges you face together, every day, have the ability to negate the finest relationship.  To protect what you love the most, keep talking no matter what!

Personal phone calls

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written by Kate O’Neill

She’s called several times before he pounds in her number to phone her from the car.  The drive to the afternoon Wednesday clinic takes some time.  He returns patient calls.  The matter was private, she gave no information to the secretary, only that she needed to speak with him, urgently.  The patient has several other ailments in addition to Parkinson’s Disease, as well as a psychiatric history.  Several months ago she had a severe crisis and spent weeks recuperating in a rehabilitation unit.

He calls with some reserve, hoping the matter can be resolved easily and that he won’t have to pull over.   She answers the phone in a breathy salute.  She’s been painting again.  The newest regimen of medications enable her to be much more productive, though she fears there is an awkward side effect; something embarrassing.  The doctor reassures her dopamine agonists are portrayed somewhat scandalously, the true percentage of patients adversely affected is really quite low.  The woman on the other end of the line interrupts him as he digresses about the safety of dopamine agonists.  She fears her marriage is in jeopardy, should she act on the urges she’s felt.  A particular male model has caught her eye.  He has been sitting for her drawing class.  She knows the whole scenario is outrageous, but she finds herself thinking about the young man throughout the day.  Using a class sketch, she works to paint him.

Painting is her reward for folding laundry and washing dishes.  She treats herself to his image every day, looking forward to that time, when she can be with his likeness, alone.  Her spouse is happy to see she has returned to her vocation.  She’s mortified with herself and fearful of confiding in her spouse.  Could the medication, the dopamine agonist be the culprit, causing her to fixate on the young model?

There is a break in their conversation, when the doctor considers the matter.  She can’t see him raise his eyebrows or slightly shake his head.  He launches into an explanation of punding- a term given to what some patients do, repetitively, though their actions are usually sorting or re-arranging, not painting.  A sense of satisfaction comes with the chore.  The doctor urges her to speak with her spouse or her therapist.  She tells him her therapist thinks it is a positive sign and she’s rather die than share her secret with her husband.

Another day at the office

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written by Kate O’Neill

The doctor has various clinic days.  On Wednesday afternoons he travels south to Sarasota, to the Parkinson Research Foundation new suites “Parkinson Place” on Cattleridge Drive, where he sees patients.  Monthly at the same location he fields questions at the open forum, “Ask the Doctor ” luncheon; where people afflicted with Parkinson’s disease and their caregivers are provided  lunch and their queries discussed.  Other days he sees veterans at the James Haley Veteran’s Hospital on Bruce B. Downs.  Thursday afternoons he sees patients at the University of South Florida Movement Disorder Clinic.  On board the yearly cruise, sponsored by the Parkinson Research Foundation, he speaks about the illness and any new breakthroughs in research.

Though patients traditionally make appointments through the scheduling desk, some bold patients learn of him and email him directly.   Such was the case of a 41 year old man from California.  His letter arrived from cyberspace in the font reminiscent of an old typewriter, thin and scrappy.  Though his name is confidential, his case is typical for those with young- onset illness.

Are you or anyone else in this country – or Canada – doing clinical ANY clinical trials on GDNF-enhancing therapies, or anything else that addresses the issues of Parkinson’s, that I could participate in? It would be awesome if there was something in Northern California, but I am willing to travel if necessary. I am also willing to receive experimental treatments. In addition, are there any physicians you could refer me to who are treating with GDNF-enhancing therapies, or whom you would recommend for a comprehensive and holistic approach to Parkinsonism?

He had his first symptoms at 31 years of age.  By definition, he has early-onset Parkinson’s disease.  Though he was a runner, he doesn’t say whether he’s still as active as he once was; running a 50 mile stretch, once.

The physician is reticent to provide advice through the internet, with no face to face meeting where he might feel the rigidity of the patient’s elbows and wrists, have him lift his shoulders to observe the movement of the muscles connected to the trunk, and observe the gait in the clinic’s hallway.  No insurance policy would cover medical information given without a physical examination.  The average patient takes the standard route to access the doctor;  an appointment allocated to have the doctor in the room, where you might ask any question.  This man across the country bypassed those more common paths.

The information sat with the doctor, who turned it over and over again.  He considered whether to reply.  Finally he did, knowing this person sought his wisdom, and feeling that he should share what he knows of the disease.  The doctor  urges him to forget surgery, but exercise, regain that old hobby,  the trot.  By increasing one’s heart rate to the maximum for one’s age, the body begins to rebuild, as it does the brain generate growth factors which enhance survival of neurons, indeed the neurons fibers begin to sprout (at least in the brains of parkinsonian monkeys treated by vigorous exercise).  The doctor wonders whether he still has the link that shows monkey on the treadmill, running though they’ve been afflicted by a man-made unilateral parkinsonism.  Yes, that is what the patient needs to see.

Slowly Slipping

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written by Kate O’Neill

The doctor comments on the number of people gathered along the wall and sets the paper cup of coffee on the desk. Not wanting to begin treatment with levodopa, as the patient was forty-two years of age, the doctor recommended a dopamine agonist.  It’s been almost two and a half years since that initial diagnosis.  In the seat inside small room, the patient allows the medical students and visiting Chinese physicians to attend his examination.

The doctor sinks into his chair as he asks the man how he is, and what his major concerns are.  He is tall and slim and flashes a smile of brilliant white teeth.  His dark hair is flecked with grey.  Wearing a business suit and tie, he concedes he still hasn’t told the people he works with.  The doctor nods, supporting his decision.

He worries his mind is not as sharp as it was.  Representing a client in court, he objected to the treatment given to his client by the prosecutor.   Thinking the other attorney was a jerk, he approached the judge and his mind went blank.  Failing to remember what he wanted to say,  he turned away, excusing himself.  Other episodes of spontaneous voids- like holes in cheese, have happened before.  In earlier years they never occurred while he was at work.  He fears such instances may compromise his clients, his reputation and ultimately his earning potential.

Nodding, the doctor  states if that is his primary concern it’s worth exploring.  A colleague performs  neuropsychological testing.  She may be able to determine whether he has any underlying cognitive deficits, and if they conform to any known pattern- Alzheimer’s disease or dementia with Lewy bodies. . .  Some patients have both Alzheimer’s disease and PD.  Even though we try our best to attribute all the symptoms to one disease, and here he cited his mentors favorite quote: “God may plague you with as many illnesses as he cares too.”  When  the patient agrees without enthusiasm, the doctor mentions many well- known figures have had PD, and they’ve managed to maintain their positions and leave their mark on history.  Janet Reno, for instance was able to be a competent  attorney general.  The Pope traveled the world proselytizing for the Catholic Church. . .Francisco Franco and Adolf Hitler both contended with Parkinson’s disease, but the terrible suffering they caused could not be attributed to the disease.

The doctor volunteers the patient may try relying more on junior staff.  By avoiding center stage, he would diminish the chance of finding himself caught without words.  The patient gazes at his hands briefly and agrees.  He thought he might be able to get by for another ten years before making changes in the structure of his work.  Presently, he employs no junior staff.

The doctor encourages him to continue a physical regimen of exercise.  He gives him a referral for cognitive testing and reiterates making small changes to decrease daily stress.

 

My father was diagnosed with PD age 88; can vitamin B complexes be harmful?

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Given that your father’s PD was diagnosed at age 88, it is possible that he has a form of parkinsonism known as “lower body Parkinsonism” in which the primary problem is with gait and balance and with lesser involvement of the arms and hands. It tends to occur in older individuals and doesn’t respond to dopamine replacement (ie levodopa/carbidopa).   It would be important to know if his signs and symptoms slowness of movement, rigidity, and tremor improved with levodopa/carbidopa.  If so then he likely does have Parkinson’s Disease despite the very late age of onset.  If his symptoms haven’t gotten better on levodopa/carbidopa, then it is likely he has lower body parkinsonism. I suggest he have an MRI to determine if he has the neuroanatomical correlate of lower body parkinsonism, namely microvascular lesions in the sub-cortical white matter of the brain.

Regarding your question about vitamin B complexes, they are not an impediment to treatment.  You should know that in the early days of levodopa therapy (1960s), before carbidopa was added to the formula, most of the drug would be metabolized in the gut and liver by an enzyme known as peripheral decarboxylase, that relied on vitamin B6 as a co-enzyme.  To decrease the breakdown of levodopa by this enzyme, physicians recommended that patients taking levodopa avoid vitamin B6.  However, ever since carbidopa was added to levodopa (brand name Sinemet) to interfere with the decarboxylation of levodopa, patients are able to take all the B vitamins without any difficulty.

Questions and Answers Final Day at Sea

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Questions and Answers Final Morning: Saturday March 2, 2013

Written by Kate O’Neill

It’s 9:30 in the morning, time for the question/ answer panel with Dr. Sanchez- Ramos, Linda McDonald, Marilyn Tate, Mary Spremulli and Leymis Wilmot.

PRF chairman Larry Hoffheimer asks about interest in repeating  the cruise on the current route- or whether people prefer to have another departure port-  Eastern and Western Caribbean cruises- not every ship has conference facilities adequate for the group.

Christina speaks about her history, beginning fund-raising for the PRF.   Previously she had been a representative for drug companies.  Knowledgeable about bake sales, she reveals fundraising for a non-profit organization is new to her.

What sort of environmental issues contribute to acquiring PD?  Many toxicants  in our environment increase our risk for PD- by poisoning mitochondria which in turn leads to demise of dopaminergic neurons.   Most studies linking toxicants and PD are based on epidemiological studies and associations can be described, but never a cause and effect relationship.  Certainly some toxicants can be shown to cause death of dopamine neurons in animal models.  There is a well known example of a toxicant, MPTP, which when taken intravenously can cause death of dopamine neurons and a PD-like disease.  MPTP is a contaminant of an underground drug synthesis of meperidine (Demerol) which was sold on the black market as a heroin-like drug.  The i.v. drug abusers who used this substance developed PD. This observation led to the search for similar toxicants.

Visual issues- Most commonly visual problems are described as blurring of vision and difficulty scanning lines while reading.  The most likely explanation, for blurred vision is difficulty in focusing for near vision because of anti-cholinergic medications used to treat PD.  Double vision occurs because of asymmetric rigidity of the extra-ocular muscles.  These muscles develop a “cog-wheel” rigidity which makes scanning of the visual field choppy.  Another visual problem, difficulty seeing during dusk is due to depletion of dopamine stores in the retina resulting in decline in contrast sensitivity.

Progress of PD- may bechoppy or gradually progressive:  Stage one involves one side of the body- spreading to the opposite side- patients are usually able to differentiate between such times

Tremor dominant PD usually has a milder course of Illness, generally

PD with Lewy bodies: Lewy Bodies are the pathological hallmark of PD.  Lewy bodies are intracellular and are found initially in the front and back of the brain (olfactory bulb and medulla).  They gradually spread to midbrain and at that stage the illness becomes clinically manifested.  A clinician cannot see Lewy bodies in life because it requires post-mortem microscopic analysis of brain tissue.         Diffuse Lewy body disease presents with dementia and florid hallucinations, most patients that respond to dopamine replacement have Lewy bodies within their brain cells, hence Parkinson’s Disease can be diagnosed with certainly.

Protein in diet and PD.  Levodopa can only enter the brain by active transport across the blood/ brain barrier.  Diet usually becomes an issue after some time- Sustecal and Ensure are rich in amino acids (the building blocks of proteins) and other proteins.  A type of amino acid (the neutral amino acids) enter the brain via the same transport system as levodopa (which is also a neutral amino acid).  So taking levodopa/carbidopa around the hours of digestion of a protein meal will impede dopamine transport into brain and result in failure to experience the benefits of levodopa (ie the patient will remain off or if on will shut off).

Mediterranean diet rich in fruits and vegetables may have less risk of acquiring PD-  must be practiced early in life to have an effect- diet though is not sufficient, you must exercise

What sleeping medicine would you recommend?  NONE. Sleep hygiene becomes important in PD to obtain the best possible sleep- this stresses darkness at night (no lights on at night), exposure to bright light or sunshine during the day, and if something is needed first try diphenhydramine (Benadryl) – or melatonin.  Regular sleep varies tremendously, but seek to get three cycles of three, ninety minute phases- this may require something to inhibit the bladder, so one is not waking to pee every three hours.

When do you change doctors?  Dr.  passes microphone to Marilyn-  who recommends someone who is able to manage your illness, serve you well, listen to you when you’re not well- Seek someone who will be a medical companion, someone you can trust.

How do you know where a good one is?  Look for referrals, someone board-certified, trained in Movement Disorders- though not all are able to have this- someone who has focused on the disease.  Movement disorder society has a listing of all physicians, this directory should be available online, and at the PRF.

Drug trials looking for participants: PSG.org is an educational consortium listing all clinical trials seeking participants, and past trial outcomes.  NIH.gov also lists all clinical trials in the US.

Current belief about exposure to general anesthesia- The doctor equates anesthesia with taking off and landing a jet airliner-  it’s the riskiest part of surgery.  During the recovery period from surgery symptoms of PD are exacerbated and sometimes the patient never returns to the pre-operative baseline.  Intubation poses a high risk for swallowing problems- post operation

Hospitals in themselves are high-risk environments: We used to admit patients more frequently for drug- holidays TOXIC ENCEPHELOPATHY- where all meds. were stopped, to reset patients who seemed to be not deriving benefit from medications. Stopping meds put people at risk for malignant hyperthermia- high fevers and muscle breakdown.

Is it important to inform one’s neurologist if the patient is going into the hospital?  Dr.  agrees most hospital staff do not know how to care for patients with PD-  all meds must be continued until you are unable to take fluids. MAO inhibitors- should be stopped beforehand.  Once the patient is allowed to swallow food and liquids, oral medications can be restarted.

Tiredness during the day-  Resting during day is fine, if person is still sleeping throughout the night.  If the patients sleep well through the night but still is somnolent all day, a trial of Modafinil- a drug used for narcolepsy- may be tried.

Azilect is given in early PD to slow progression of the disease.  It can also be used to increase “on” time since it is an inhibitor of dopamine breakdown and hence allows the dopamine to remain a bit longer.

Constipation and PD- movements of gut is slowed- not helped by levodopa, must rely on old-fashioned remedies- fiber, water, ducolax, miralax

Competition is always good in healthcare- different pharma companies producing therapeutic compounds give patients choices, a good thing.  Similarly the many non-profit foundations dedicated to PD compete for funding.  How is that a good thing?  Investors in Michael J. Fox: Foundation from movie and TV industry provide  significant funds for research.  How much does the Fox organization supply for research?  It is certainly much less than NIH provides.  Marilyn notes that PRF is unable to raise funding amounts similar to the Fox organization- but the strength is that PRF addresses the quality of life of patients, today.

 

 

Empowerment at Sea

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Empowerment:  Marilyn Tate

Written by Kate O’Neill

-As long as you have a choice, you have control.

Marilyn is speaking of empowerment-The more you move, the better you will be.

-I care about the disease, but not so much.  I care more about what the illness does to you. A lot of people look to you.  Who has a sense of worth?  WHO HAS A SENSE of WORTH?  Lie to me, raise your hands.

A few hands rise.

-The best thing I can do for you is to lighten you up.  I can lower the bar, so you can get over it.  The world is a better place because you are in it.  So what have you done for the world?

After lunch, the session begins at 1:30.  The ship rolls more than it did this morning.  Behind me, the wood paneling creaks.

Upstairs a patient browsed through the selection of t-shirts marked 50% off.  Marilyn’s talk might have benefited her.  -The challenges in life are what make you great.  Everything you need is inside of you.. maintain the honor, respect in your relationship and you’ll be fine.  The Parkinson Research Foundation has a website to reach you…

Marilyn speaks about her history caring for cancer patients.  Fifteen years ago she began working in Neurology.  She tells the crowd care-giving is a selfless endeavor, done from love.  There are no manuals.  Without time off, or pay, loved one’s jump in, without much thought.  The timing of the illness is never right. The illness arrives without invitation, like a mother-in-law.  There is no indication of when she will leave.

You can’t control much in life, but you can decide on how you will respond to the disease.  No matter how you cut it, there are two sides, you must give up the past.  Engage in the present, hold on to what is precious.  Never waste a day worrying about tomorrow- that you won’t be able to tell your wife you love her, or walk.

How does PD make you feel?

Audience- angry.

Anger can overwhelm you.  There are three of you- you, your caregiver and the disease.  You have to accept the disease- you can have the illness, but the disease doesn’t have you.  Anger needs to be contended with, and it’s OK for a while but you need to get passed it.

Hope- hang on to it- it may be all the person has.

Gratitude- What are you grateful for?  Your caregiver.  Your life.  Get your hands up!  You have blessings. Sit down and make a list of what you are grateful for.  Caregivers must take care of themselves, first.  What is the number one mission for the caregiver?  In Marilyn’s laws- this is to maintain the esteem, the self-respect and dignity of the competent adult- not to jump in and treat them as a child.

Communication is huge.  Silence is the worst enemy.  Don’t miss an opportunity to convey your appreciation for that person.  If you have nothing positive to say, then keep the mouth shut. Marilyn’s favorite type of communication is non-verbal: a smile, a pat, a kiss.  Communication- conveying material needn’t use words.  Sometimes words are inadequate, and a pat or a touch gives more.  Why is it so important to put on a positive face?

There is caregiver’s book to conduct- you need not be a shrew.  Your job is to empower, not to perform every task.  Empowerment is yours alone.  What does quality of life mean to you?  Does it mean free of disease?  No, it certainly does not.  For Marilyn it means the ability to do what she  can for those she  loves the most.

 

Healthy Steps 2

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Healthy Steps 2 led by Linda McDonald

By Kate O’Neill

A circle, we have bubbles in the tiniest test tubes- they create diminutive rounds of blue and purple sheens.  They rise and reach the smallest purple lights overhead.  ”TINY BUBBLES”- the song waves as they float on the air, gently falling.  Linda instructs us to kick them and catch them- moving arms and legs.  Linda picks up the vessels as we moan because she’s onto something new.  Several orbs hang above our heads as Linda continues speaking.

Neck stretches to side and center as several people wander in, in pairs. Shoulders rise and lower with gestures- as LInda says, “I don’t know, and I don’t care.”  She’s wearing a shear blouse of peacock colors as she stretches to the left.  Palms clasped, we stretch to ceiling and bend to the side, and then the other way. Music is cha-cha like, and the ship rolls gently beneath our seats.  The last teeny bubble wanders by.  The music goes on- as shoulders roll circles before shaking them out.  Legs next, we raise and lower, remaining tall in chairs.  Heads drop to chest and then make circles.

Linda describes the motions she’d like us to practice- as the ship rolls again.  The vibrations of the sounds we made in Voice Aerobics impact our organs-

The Alexander Technique: Linda describes ways to rise from a chair using the weight of the head.  Not to watch the feet- as it pulls the body downwards.  Imagining the head is attached to a pulley that pulls one at an angle forward- not directly upward.  Placing one leg slightly in front of the other- one foot is backwards against the leg of the chair, the other more extended.  We try, voices expound, the task seems easier.  Linda tells us we exhale on the exertion- this is how she climbed the stairs to her home when she was weak from three bouts of cancer therapy.  She shows us how to exercise with newspaper- scrunching it to combat arthritis- a woman volunteers Tiger Woods scrunches newspaper to maintain his hand strength.

It’s four o’clock and we have balls in hand.  The small movements are as important as the gross ones- handwriting relies on these.  Psychosocial skills are as important as the larger ones- like drinking water.  Too many people are sent to the hospital from problems arising from dehydration.  We work with balls, squeezing from side to side, after extending and contracting fingers.  The music-big band, like Lucy Ball dominates the air.  We shake shake, shake our hands then stop-  like a mad orchestral conductor.  Mirror imaging- We follow Linda, as she moves to Moon River- a cool-down.  Done with partners- people smile and move- steady movements vary with sudden bursts of action.

 

Dance Workshop 2 on Freedom of the Seas

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Dance Therapy with Leymis Wilmot on Freedom of the Seas

By Kate O’Neill

The attendees gather into a circle- she encourages them to respond in a call and respond session-

BEST: Body, Energy, Space and Time

We begin with a breathing exercise, placing the hands on the belly as we inhale then exhale. Placing hands on rib cage, it expands, next we place hands on the sternum as we inhale and exhale.  “Don’t Worry about a thing, every little thing gonna be all right…. ” The words flow as people extend their arms as birds, swinging to the beat.  Even higher, reach, opening wide, give yourself a hug- she urges

Spinal arches and then rounding.

I think some may benefit from an assistant that travels between those that don’t seem to get the movements.

No caregivers feel the need to reiterate her commands.  The arms fly through the air, clasped arms wiggle the torsos to the beat of the music-  changing to a Latin song that’s faster, the Spanish words probably lost on all.  They gather, then melt from side to side as that music fades.

Are you sitting up nice and tall? Breathing?  Rock, paper, scissors, shake it out- both hands.  Deck of cards- she imitates passing out cards, rotating her torso forward.

Percussive piece of the class: heels drop to floor, hands pat thighs, hands clap….

In front the woman cues her spouse, “Move your shoulders!”- her voice a sharp whisper.

The tempo increases then falls as the heads of the foundation watch with bemused faces.

All movements are seated- as a voice like Tony Bennet begins to sing, “Thinking of you and the way you look to night. You’re lovely…. ”

Lateral stretch, add an elbow, pull the arm over-

In front a man wears a blue t-shirt with orange letters spelling FROG: fat, retired, old guy.

They give themselves a hand with Leymis’ urging.  Breaking for water, Christina makes several announcements. The second half will be done standing, for those able.  This is to begin with the ballet moves done behind their seats, one hand securing the top for balance.  People swirl about, moving behind chairs.

“I had the time of my life… “ the music is loud over her voice.  Tapping feet, to the back, then raising up on the balls of the feet and down.  I hear a guy behind me moaning , as he smiles.  His wife is in front of him, performing the actions as well.  In front, the woman helps her spouse raise his right hand over his head.  His limbs are deeply tanned, perhaps by the Florida sun.

Leymis describes the next section- as preparation for the Mardi Gras event that will happen tomorrow- She used to conduct a jazz dance class at Tulane, and these musicians are the real thing- true New Orleans artists.  Most people are up now.  Caregivers have given up their hesitation.  They clap as their right shoulder make circles. A wave of arms flies about and they clap, ready for the parade tomorrow.  The cool down begins, sitting.  “Somewhere over the rainbow” Judy Garland- they create a wave oscillating among the circle. “Birds fly over the rainbow, why oh why can’t I?”  Inhale and exhale and give yourself a hug.

 

Dance Workshop on Freedom of the Seas

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Dance Workship on Freedom of the Seas

By Kate O’Neill

Allow the ribs to kiss, Leymis instructs. Elbow, wrist, hand; we’re embracing the waves today.  Dance begins, everyone’s  in a circle, in several aisles.  Most people sit.  Some caregivers stand.  Eleven in the morning after Dr. Sanchez- Ramos’ hour, people are ready to move, not think.  Arms cross in front of the body, sitting tall, arms spiral all the way backwards.

This crowd is mostly white-haired, pale-skinned.  Leymis’ shiny black hair, her traffic-cone colored t-shirt contrasts.  The program she performs is especially for patients with neurological illness- if not specifically for people with PD.

Inhale, exhale; people crane their necks forward and back.  They go to Egypt- hands in prayer above the head, circling heads below

Rock paper scissors, shake it out.  Now slicing with hands and arms then circling and reaching high and then slicing down.  Everyone moves as one, patting, clapping, right.  Synchronized movements at her command- her voice audible without the microphone that is to her side.

The music is jazzy, background with a distinctive beat-  She calls the right or left- hand or foot.  “Strangers in the Night, we’d be sharing love before the night is through…. Something in your eyes was so inviting…” the words risqué – a tune probably familiar to this generation.  The ship moves beneath the seats, gently.  Filtered lighting, small canister fixtures impale the ceiling- Leymis allows everyone to have a moment of slow interpretive dance, find an ending pose.  Closing the eyes, singer exhales da, de da, de da and the sound fades.

The interactive piece of the class, Leymis asks all to state how they feel and, combine the sentiment with a movement depicting the emotion.  Everyone greets the person, copying the motion.  Think of the three words and the three motions.  Leymis asks all to perform the movements and shout out the words. “Shake it out”.  Those wishing to stand may- and the music continues as she perform a plie-  these ballet moves are done holding onto the chair back, or not.  Big band music- For Once in My Life- swings out, they are drumming, making jazz hands.  New Orleans music, the singer gravelly-voiced, All On a Mardi- Gras day… now twist twist twist…. Shake it out.

Most people perform the motions easily.  Only a few sit and watch.  One man wearing a short-sleeved, orange button down shirt stands, arms at sides.  Attentive but seemingly off- his wife bends without hindrance.  “Somewhere Over the Rainbow” Judy Garland sings. Some voices follow her’s.  Motions are delicate, gentle as the song ends.  All clap.

Christina reminds all to be back by 1:30 after lunch.

 

 

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