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: is an educational consortium listing all clinical trials seeking participants, and past trial outcomes. 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.



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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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.”


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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



Posted by & filed under Weekly Journal.

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





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