1

The American Parkinson Disease Association

A Quarterly Newsletter ©2004by The American ParkinsonDisease Association, Inc.

Paul Maestrone, D.V.M.,Director of Scientific and Medical Affairs, Editor

Vincent N. GattulloPresident

Joel GerstelExecutive Director

INDEXLoneliness P. 1

President’s Message P. 2

Study about Children of Parents with PD P. 2

Learning and Memory in PD P. 2

Water Therapy P. 3

When the PD PatientNeeds Surgery P. 4

F.Y.I. P. 5-8

Q&A P. 9

Caregiving P. 10

Educational Material P. 12

Main Office:1250 Hylan Blvd., Suite 4BStaten Island, NY 103051-800-223-2732www.apdaparkinson.org

West Coast Office:10850 Wilshire Blvd.Los Angeles, CA 900241-800-908-2732

irtually everyone is lonely fromtime to time, but chronic loneli-

ness is a matter of more serious psy-chological dimension.

Most people have no trouble describ-ing what loneliness feels like.Emptiness, tightness of the throat, anx-iety, feelings of “deadness inside” areamong the phrases that recur whenpeople talk about their lonely feelings.The trouble people do have is locatingthe sources of their loneliness.

The most commonerror is that peoplewho feel lonely blamethemselves for theircondition. In fact,usually it is some sit-uation or externalproblem that causesthe loneliness, ratherthan some inner, psy-chological reason. Noone is “geneticallylonely” or “naturallylonely.”

Social forces have a good deal to dowith being alone, the most commoncause of loneliness. Being alone is, ingood part, the product of the highdivorce rate and the fact that wivesoutlive husbands. It is also a product ofour culture’s emphasis on “self-suffi-ciency” and independence.

It is a popular fallacy that old peopleare the most lonely members of oursociety. Just the opposite is true.Research shows that young people aremost lonely as well as the most unhap-py, the most often bored and the lowestin self-esteem of the entire population.Seniors are the least lonely because they

become wiser and psychologically stur-dier as they age. It’s also possible thatthe unhappy, lonely people die sooner,leaving the more optimistic, cheerfulones to survive and be counted.

Another fallacy is that women need menmore than men need women. Fact:Indications are clear that men tend to bemore dependent on women. One reasonis that women are far more skilled thanmen at establishing intimacy and at cre-ating nurturing relationships.

What to do about loneliness.Some of the means people use toadjust to loneliness can actually exac-erbate the problem; solitary drinking,taking tranquilizers or other drugs, orwatching television. This is particular-ly insidious (because ostensibly harm-less) such diversions can reduce thecapacity to be alone and introspective.It’s no accident that in a study of highschool students, the ones who had thelowest social status and self-esteemwere the ones who watched televisionmost often. Television tends to serve asa substitute for social life, not a routeinto it.

VS P R I N G 2 0 0 4 N E W S L E T T E R

Continued on Page 3

LONELINESS

2

Dear Reader,

Spring is finally upon us, though it took a while tomake up its mind in the Northeast.

It is no surprise that this season of blossoming flowersand opening windows is the time chosen for gradua-

tions, weddings and religious rites of passage. It is an occasion of life, renewaland hope. That is probably why, consciously or not, APDA makes its researchgrant awards. It is the period of hope and commencement to future success.

APDA received more than 100 applications, the highest number in our histo-ry, this year from scientists and researchers committed to finding a cure. OurScientific Advisory Board has met to review the requests, and the ExcusiveCommittee of the Board of Directors will review its recommendations andannounce the fellowships and grants soon, always with the hope that amongthem is the research, which will at least ease the burden and, it is hoped, leadus to a cure.

We are proud to be able to say that APDA has funded every major scientificbreakthrough in Parkinson’s disease thus far, and continues to seek the mostpromising research to expedite the eradication of Parkinson’s disease. We havecontributed more than $28 million to research and patient services thus farand will continue to raise funds and awareness to fulfill our mission.

We also recognize and applaud the efforts of our national network of 64Chapters and 57 Information & Referral Centers who celebrated April asParkinson Awareness Month. Walk-a-thons, proclamations, symposia, confer-ences, special events and seminars filled the events calendars of newspapersacross the country as volunteers and healthcare professionals gave hours oftime and an abundance of talent to bring the APDA message of hope anddetermination to millions of people.

The symbiotic relationship of research for the future and support for thepresent is one of APDA’s greatest strengths, making it unique among otherorganizations. We are proud of our work, but even more proud of the peoplewho are responsible for it.

In the laboratories, on the dance floor, in the classrooms, in the parks and inthe newspapers, our APDA army will ultimately win this war againstParkinson’s disease.

Sincerely,

Vincent N. Gattullo

STUDY ABOUTCHILDREN OF

PARENTS WITH PD

P R E S I D E N T ’ S M E S S A G E

Participants are still being soughtfor the study “Quality of Life ofChildren of Parents withParkinson’s.” Volunteers will besent a questionnaire booklet forcompletion, and asked to returnit in a pre-paid envelope. Thebooklet should take about onehour to complete.

The goals of the study are to col-lect and provide information forboth families and health care pro-fessionals, as well as developstrategies to promote a goodquality of life for children whohave a parent with Parkinson’s.

All family members are eligible toparticipate, including children age11 or older, as well as grown chil-dren who have left home. For moreinformation contact David Morleyat The Sobell Department of MotorNeuroscience & MovementDisorders, Institute of Neurology, 8-11 Queen Square, London, WCIN3BG, United Kingdom; or phone44207 8373611 ext. 4114; or emailD.Morley@ion.ucl.ac.uk. ■

LEARNING ANDMEMORY IN PD

Dr. Filoteo of the San Diego VAHospital is conducting researchinto Parkinson’s disease’s impacton learning and memory. He isseeking volunteers who havebeen diagnosed with Parkinson’sdisease and have no other neuro-logical problems. Participants willbe asked to go to the VAHospital in La Jolla, Calif. toreceive memory and attentiontests. There is no compensationfor this study. If interested,please contact Dr. Filoteo’s lab at(858) 552-8585 ext. 5593. ■

3

Continued from Page 1

Learn the benefits of solitude byundertaking some of its moreactive forms, such as journal writ-ing, letter writing or reading. Suchactivities contribute to your senseof personal strength and your levelof awareness, and they enhanceyour sense of creativity. These areall vital contributions, since lowesteem is a central factor in loneli-ness. It’s important to learn thepositive benefits of being alone; it’sa mistake to spend time with peo-ple to cope with feelings of empti-ness. Surrounding yourself withpeople you don’t like is just as badas stuffing yourself with food inorder to cope with loneliness. Theyare narcotics, not solutions to theproblem of the void you feel.

Remember that the way in whichyou perceive being alone is thedecisive factor in whether you feellonely. People who equate loneli-ness with being alone are the oneswho end up actually feeling lonelyin solitary circumstances. There are,after all, many people who havebeen living alone all their lives, yetare among the least lonely people.

Consider how to establish moreintimate ties with other people.This is, above all, the prime factorin avoiding feelings of loneliness.Such feelings reflect that you haveinsufficient or inadequate personalties in your life. ■Article abstracted from the VermontParkinsonian, January 2004.

Lonelinessce packs, hot and cold compresses,medicated baths and other forms of

water therapy were mainstays of med-icine for centuries.

Today, high-tech medicine has eclipsedwater-based treatment, even thoughhydro therapy is still recognized aseffective in several European countriesand its use is covered by nationalinsurance pro-grams. Thesetreatments —safe, inexpen-sive and easy touse — remainvaluable toolsfor easing dis-comfort causedby commonailments.

MedicatedBaths We all know how relaxing awarm-water bath can be; however, noteveryone realizes that even greaterbenefits can be reaped by adding nat-ural ingredients to the water. Add acup of apple-cider vinegar to the bathwater, and splash a handful over yourshoulders, back and chest. That willinvigorate you when you’re fatigued.It also helps restore the skin’s germ-killing natural acidity, which is con-tinually washed away by bathing.

To soothe poison ivy or sunburn,add two cups of vinegar to your bath.

A bran bath eases itching, soothesdermatitis or other skin irritations,and eliminates scaly patches. Sew sev-eral handfuls of wheat or oat braninto a cheesecloth pouch. Soak thepouch in hot water for several min-utes, then place in a tub filled withtepid water. Squeeze the pouch untilthe water turns milky.

Pine Extract One cupful of pineextract in a warm bath helps openclogged pores, speeds healing of rashesand relieves muscle fatigue. Be carefulnot to confuse pine extract with pinecleanser, a detergent, which will irri-tate the skin.

Salt Massage This energizing tech-nique tones tissues, relieves stress andfatigue, and can help you ward off acold. Sit on the edge of a tub filledwith warm water. Pour salt into acupped hand. Slowly add water to thesalt until you make a thick paste.Using firm, circular motions, rub thepaste over your body. Then rinse offthe paste with a brief soak in the tub,

or sponge itoff with coldwater. Be care-ful not to rubsalt on sores,cuts, etc.

Cold-WaterTreading Fillthe tub ankle-deep with coldwater. Holdingonto a firmly

anchored rail, march in place for afew seconds or minutes as long as youcan comfortably tolerate. Then rubyour feet briskly with a towel. Donetwice daily, this technique creates aremarkable sense of well-being and isgreat for relieving exercise-related legcramps. Some believe that it buildsresistance to diseases as well. Cold-night treading promotes sound sleep,yet it has an eye-opening effect whendone in the morning.

Compress To prevent or relieveheadache pain, fold a washcloth inhalf, dip it in ice water and wring itout. Place it on your head or neck.Re-wet it every few minutes to keepit cold.

To relieve a sore throat or laryngi-tis, fold a cotton cloth in thirds, wet itwith cold water and wring it out.Wind it once around the neck andfasten with a safety pin. Over thecloth, wrap a wool scarf. Leave thiswrap in place as long as you like.With the cold trapped against theskin by the wool, the body continuesto divert more warming blood to thearea, helping break up congestion. ■Abstracted from the Vermont Parkinsonian, Jan ‘04

WaterTherapy

I

4

pecial consideration must be givento those individuals with Parkinson’s

disease (PD) who require any type ofsurgical intervention. The stress thatsurgical procedures can impose affectsPD management, and although mostpatients with PD will not encounterdifficulties, knowledge of potentialproblems may help to preclude theirdevelopment. If problems do arise,being forewarned will allow promptrecognition, treatment and resolution.

In the paragraphs that follow, I willaddress the questions most frequentlyasked by patients who are about toundergo surgical procedures. Thesequestions (and answers) will alsoaddress some of the potential complica-tions seen in PD patients undergoingsurgical procedures. I will not addressquestions related to neurosurgical pro-cedures used to treat PD.

Q) When should PD medications bediscontinued prior to surgery and howsoon can they be restarted after surgery?A) It is my practice to encourage mypatients to continue taking all PDmedications up to 3 hours before sur-gery. The exception to this is selegiline(Eldepryl®), which I discontinue 2-3weeks before surgery in order to avoidany possible interaction with certainnarcotic analgesics.

PD medications are restarted as soonas the individual can swallow safely.Unfortunately, there are no dopaminergicPD medications that are available foradministration via intravenous, intramus-cular or by rectal routes. If the patient isrecovering from gastrointestinal surgery, Irecommend giving the medicationsthrough a nasogastric tube which shouldbe clamped for about 30 to 45 minutesafter the medicine is delivered to allowabsorption. It should be noted that anti-cholinergic drugs (such as Cogentin®)are currently available in intravenous for-mulations, and apomorphine (a potentdopamine receptor agonist) should alsobe available in the near future.

Q) What are the dangers in delaying therestarting of dopaminergic medications?A) Post-operative recovery can be diffi-cult under any circumstances, howeverwith the additional burden that PDimposes, resumption of optimal motorfunction as soon as possible is of para-mount importance to minimize any ofthe following potential problems:

First, delay in reinitiating PD med-ications will compromise motor func-tion, including those of the respiratory(breathing) and pharyngeal (swallowing)muscles. Compromise of respiratory

muscle function can lead to poor coughand restriction of movement of the res-piratory muscles (limiting deep breaths).Additionally, swallowing problems candevelop or worsen without PD meds,thus increasing the risk of aspiration.These problems, taken together withthe decreased ability to move, about,will make the common post-operativecomplication of pneumonia much morelikely without PD medications.

Secondly, the rigidity and bradykine-sia brought on by lack of PD medica-tions leads to decreased movement andthereby increases the post-operative riskof developing blood clots in the legs(deep venous thrombosis) related to thesluggish blood flow. Mobilization, amajor goal following surgery of anykind, is made considerably more diffi-cult without medication, thus furtherdelaying rehabilitation. Finally, a rarebut potentially life threatening condi-tion known as neuroleptic malignant

syndrome (NMS) must be a concernwhenever dopaminergic drugs areabruptly discontinued. In NMS, mentalstatus changes, rigidity, tremor, fever,and autonomic instability can lead to alife threatening condition. If recognizedearly, treatment can be life saving.

Q) Should a PD patient do anythingspecial pre-operatively to maximize thepossibility of a good recovery?A) Of course, obtaining general medicalclearance prior to surgery is the standard.

Additionally, I recommend thatsome patients undergo a for-mal video swallowing evalua-tion as well as obtain pul-monary function tests so thatbaseline measurements can beobtained and thus appropriateplanning for potential postop-erative difficulties be instituted.Also, common medicationsthat may alter bleeding need tobe discontinued such as vita-min E, aspirin and GingkoBiloba. Maintaining good

hydration, appropriate nutritional sta-tus and optimizing overall condition-ing before surgery maximizes thepotential for a good recovery.

Q) What medications should be avoid-ed following surgery?A) Needless to say, all drugs that blockdopaminergic function need to beavoided. Post-operative nausea isextremely common and medicationssuch as Reglan®, Compazine®, andPhenergan® are often considered firstline medications to treat this problem.By their very nature all of these medica-tions will worsen PD symptoms andshould therefore be avoided. If treat-ment of nausea and vomiting isrequired, the drug of choice for PDpatients is Zofran®. Zofran’s mecha-nism of action does not involve alteringdopaminergic function, and the drugcan be given intravenously as well asorally.

When the PD Patient Needs SurgeryMichael Rezak, MD, Ph.D., Director APDA I&R Centers, Glenbrook Hospital, Glenview, Ill.

S

Continued on Back Page

While Chapters, Centers andSupport Groups across the countrysponsor “Stamp Out Parkinson’sDisease,” events throughout theyear to raise funds and awareness ofthe disease, numerous groupschoose April, which is NationalParkinson Awareness Month, fortheir events.

Last month proclamations, semi-nars, symposia and walk-a-thonstook place from shore to shore.

Richard M. Daley declared April11 World Parkinson’s Day inChicago by mayoral proclamation.

Mall walks were popular inLeesburg, Fla. and Reno Nev.,where the Lake County SupportGroup and Reno/Carson/TahoeI&R Center sponsored walks.Atlanta Chapter also went indoorsat the Concourse Office Park for itsannual walk-a-thon, which last yearraised more than $35,000 for PDresearch. the APDA SupportGroup of Asheville, NC, held anafternoon walk.

On April 15, San Diego’s I&RCenter, had its Spring Symposiumat the Scottish Rite Center, withthe appropriate title, “How toMake PD Less Taxing.” TheLubbock Tex. Center presented“Coping with MovementDisorders: Treating the Mind andBody,” an educational symposiumfor patients and caregivers, on April

16, in Lubbock, and “OvercomingObstacles: Living with MovementDisorders,” on April 24, inBrownwood, Tex.

On April 17, the Vermont I&RCenter sponsored an educationseminar for PD Awareness, theWashington State Chapter con-ducted “A Dance for Parkinson’sDisease Awareness” at theWintergarden in Bellevue, Wash,and the Rhode Island Chapterheld a symposium “Living HealthyWith Parkinson’s,” at MemorialHospital in Pawtucket.

APDA was co-beneficiary of TheYoung Parkinson DiseaseAssociation’s (YOPA) “an Eveningof Musical Magic,” hosted by NewYork Giant star linebacker Harry

Carson, in Martinsville, N.J., onApril 23. The next day theMinnesota Chapter and Centerhosted a walk in the ComoLakeside Pavilion in St. Paul, whileat the Texas A&M University cam-pus in College Station the BrazosValley Parkinson Association spon-sored a 5K run/walk.

Two groups, Greater Los AngelesChapter and Suffolk County,opted to utilize their location’s nat-ural water sites as settings for theirwalks. The formers was held inSanta Monica’s Palisades Park alongthe Pacific Ocean and the LongIsland, NY group chose BelmontLake, and expanded the event intoa Family Fun Day with Disneycharacters, face painting, an auc-tion and raffle. ■

F.Y.I. is an informational guide to the efforts and success ofthe hundreds of volunteers and

staff who work daily to help ease theburden and find a cure and for

millions of PWP and their caregiversacross the United States.

SPRING 2004 VOLUME XI NO. II

5

FYI EDITOR: K.G. Whitford

APDA Director Appointed to Federal CoalitionAPDA executive director Joel Gerstel has been appointed to represent theParkinson’s disease community on the Transportation SecurityAdministration’s (TSA) Disability Coalition, a division of the U.S. Departmentof Homeland Security.

The coalition includes representatives from more than 35 groups andorganizations to provide insight into the needs and concerns of personswith disabilities being screened at airport checkpoints while meeting strictsecurity codes. The panel’s input will be incorporated in the TSA’s Screeningof Persons with Disabilities program, policies, procedures and screenertraining that is given to more than 50,000 screeners nationwide.

Joel has headed the national organization since1996 and invites inputfrom the APDA’s nationwide network of Chapters, Information and ReferralCenters and 200 affiliated support groups, the Young Onset ParkinsonAssociation, with which ADPD has an agreement of mutual cooperation,and from PD patients and their families to communicate what persons withParkinson’s disease find a problem. ■

Parkinson Awareness Month Spurs Events Across the Country

The University of Pittsburgh’s foot-ball team is the Beast of the East,and the city is known as the gate-way to the West, so we are choosingthe former in locating it geographi-cally. More important is that theChapter had two major eventsrecently. I&R Center medical direc-tor Dr. Susan Baser was the keynotespeaker at the Parkinson OutreachProgram, April 3, at the Boyce ParkSki Lodge. The evening programincluded her lecture, food andsnacks, karaoke, Jugglin’ JoeWagner and a hamster race. BoycePark was also the site for thenational walk-a-thon on May 15.

The event was called “All ThatJazz,” but it turned into all thatcash for the UCLA Center forAdvanced Research in September.Coordinator Susan Daniels reportsthat the Chapter’s first major fund-raising event was an evening of din-ner and dancing with a live andsilent auction at the Long BeachAquarium of the Pacific, co-spon-sored by the Long Beach YachtClub. Dr. Marie-FrancoiseChesselet, the center’s director,thought the best part was the checkfor $50,000 supporting researchbeing done there to explain the roleplayed by the subthalamic nucleusof the brain in treated and untreat-ed PD. “Clarifying the functionalconnections among the parts of thebrain most affected in PD, couldpave the way for the developmentof new treatments for people withthe disease,” says Susan. TheChapter has a symposium sched-

uled for June 19 at the Long BeachMemorial Medical Center.Mark Siegel, acting president of theGreater Los Angeles Chapter, led agroup attending the California StateAssembly’s hearing to create a stateParkinson’s registry. The Chapter isalso busy getting signatures to qual-ity the stem cell initiative for thestate’s November ballot. May 28, isthe last day.

It was a full day for those whoattended the Idaho Chapter’s annu-al seminar on April 7, cosponsoredby the I&R Center and St.Alphonsus Medical Center in theBoise Holiday Inn, according tocoordinator Nichole Whitener.Neurologist Dr. Stephen Asher pro-vided medical and research updatesand topics on voice therapy, care-giver support and nutrition preced-ed lunch. In the afternoon partici-pants had a choice of 45-minutebreakout sessions that includedbiofeedback, therapeutic massageand an introduction to the ChiGung, the ancient Chinese practicebased on gentle movement and nat-ural breathing.

The St. Louis Chapter salutedboard member Debbie DalinGuyer for developing the “LIL”Monitor to encourage peoplewith PD to speak louder and tocontinue benefiting from theLSVT voice enhancement pro-gram. Because altered loudnessperception is a symptom, personswith PD may begin to speakvery softly without realizing it.The monitor is a calibrated,

lightweight, portable, battery-operat-ed device about the size of a garagedoor opener, which is illuminated inresponse to voice volume. Through aseries of lights, which change colorfrom orange to red to green as theuser’s loudness level increases, theuser can visually self-monitor his/hervoice volume and adjust it accordingly.

Debbie named the monitor for hermother, who has PD. Anyone inter-ested may call her at 1-800-489-1888.

Lydia Stevens, Arkansas I&R Centercoordinator, notes that the April 24thsymposium, “Managing Parkinson’sDisease Symptoms” in the RogersActivity Center kept a full house ofattendees occupied all day. Presentedby the Arkansas

NorthwestIn the

SouthwestIn the

WestIn the

EastIn the

SouthIn theIn theSouth

MidwestIn the

6

NorthwestIn the

SouthwestIn the

WestIn the

EastIn theIn theEast

SouthIn the

MidwestIn the

NorthwestIn the

SouthwestIn the

WestIn the

EastIn the

SouthIn the

MidwestIn theIn the

Midwest

NorthwestIn the

SouthwestIn the

WestIn theIn theWest

EastIn the

SouthIn the

MidwestIn the

NorthwestIn theIn the

Northwest

SouthwestIn the

WestIn the

EastIn the

SouthIn the

MidwestIn the

Dr. Marie-Françoise Chesselet, center, director of theAPDA Center for Advanced Research at UCLA, happilyreceive the symbolic check representing $50,000 from(left to right) Susan Daniels, I&R coordinator forLaguna Hills, Fountain Valley, and Long Beach; KarenSherman, Long Beach Yacht Club; Cecilia Ezekiel andMike Bell, co-presidents of the Orange County Chapter.

continued on page 7

The “Lil”Monitor was

developed by St.Louis Chapter

member DebbieDalin Guyer and

named in honor of hermother.

Chapter and St. Mary’s Hospital, theday included a continental breakfast,Dr. David Davis explaining “What isPD?” and “Non-surgical Treatmentsof PD,” a luncheon, lectures on diet,exercise, musical therapy, assistivedevices, and a silent auction.

The South Florida Chapter andI&R Center filled the Saturday witha picnic, fun walk, prizes, facepainting and entertainment at theTradewinds Park in Coconut Creek,reports Daphne Persaud. Meanwhilethe Suncoast Parkinsonians Chapterpresident Ginny Bernard was lead-ing a similar morning with refresh-ments, prizes, clowns, face paintingand more in Largo’s BarringtonSenior Living Community Center.

The Yellow Pages want you to letyour fingers do the walking, but theSouthern Nevada Chapter wantsyou to let your letters do the PR.Geri Giallanza, Las Vegas I&RCenter coordinator, reports thatChapter board member FlorenceKunstman suggested developing asmall adhesive label that could beapplied to outgoing mail thus rais-ing awareness of PD and the APDAwhere the mail went in the world.The Chapter and I&RCenter are offeringthe eye-catchingred, white, bluestickers in full 24-label sheets for$2.50 for personal orbusiness mail or as gifts.The labels can be ordered by checkor money order payable to APDA atPO Box 81884, Las Vegas, NV89180-1884. Allow two to fourweeks for delivery. ■

NorthwestIn the

SouthwestIn theIn the

Southwest

WestIn the

EastIn the

SouthIn the

MidwestIn the

7

continued from page 6

Chapters — At the Heart of APDA

When Salvatore Esposito Sr. began his efforts to benefit Parkinson’sdisease in 1961, he in fact began the first chapter of what wouldbecome a national organization. Neither did he realize that by2004 that organization would have contributed to every pioneer-ing PD research breakthrough and create an unparallel network ofpatient and caregiver assistance across the country.

Today APDA’s 64 chapters, working cooperatively with I&RCenters and support groups, are at the heart of the national oper-ations, raising funds for research, sponsoring regional conferencesand symposia, cooperating with I&R Centers and providingresources for support groups.

All volunteers, chapter members also implement and carry outall necessary reporting and donor acknowledgement functions.Many are or have family members who have PD, but many more,like the founding Espositos, are motivated by the desire to “Easethe Burden and Find the Cure” for the progressive, debilitating dis-ease that afflicts more than 1.5 million Americans.

Chapters work closely with support groups and, in fact, manynew chapters have begun as affiliated support groups, though anygroup that wishes may affiliate as a chapter. The first step is to callthe national office and receive the guidelines.

The Chapter and I&R Center relationship is also a close one, witheach supporting the other particularly in fund-raising and educa-tion efforts.

Symposium Results in Research Collaboration

Anyone who doesn’t believe in the positive results of networkingmight want to talk with Drs. Malcolm Stewart and Michael Rezak,medical directors of the Dallas and Chicago I&R Centers respective-ly, who met at an APDA symposium last year.

In the course of casual conversation, they began to discuss theirindividual research objective, to establish markers that will identifythose individuals at an increased risk of developing PD in thefuture, only to learn it was the same. The neurologists invited eachother other to look at the research to date, and though their cen-ters are separated by almost 1,000 miles, the casual conversation ledto formal collaboration.

Their area of research involves screening first generation PDindividuals, using the results of a comprehensive battery of bloodtests, sleep studies, neuropsychological evaluations and brainscans, genetic tests to establish identification markers, which if thedisease occurs, can serve as early indicators for future generationsthereby allowing early neuroprotective therapy.

Drs. Stewart and Rezak’s collaboration not only avoids duplica-tion, but also provides a larger pool of research subjects. ■

PROFILE:

What do you call a FulbrightScholar, inventor with severalpatents for veterinary medicationproducts, author of 50scientific papers, andformer research leader ata major American phar-maceutical company?

We call him Dr. PaulMaestrone, APDA’sdirector of scientific andmedical affairs, whosupervises all 57 I&RCenters nationally, isthe liaison with theScientific AdvisoryBoard, and for the past18 years has edited thequarterly newsletter, anddirects the production ofall educational materials.

Born in Italy’s northernmost lakeregion, Gianpaolo (Paul)Maestrone was graduated magnacum laude from the University ofMilan and at age 23 an assistantprofessor at his alma mater whennamed a Fulbright Scholar, whichbrought him to the United Statesaboard the Italian liner Saturnia in1953. During the crossing he metSophia Esposito, who was return-ing home from an Italian vacation.The meeting became what Dr.Maestrone calls a “48-year-longshipboard romance.”

But love wasn’t that simple. Paulattended Iowa State University,where he trained in veterinarymicrobiology, environmentalhygiene and diagnosis of viral dis-eases — all which would serve himwell in his future research career.He returned to Italy and askedSophia to join him to become hiswife. She liked the proposal but

had other location ideas.

She won, and they were married onStaten Island in 1956,thus beginning Dr.Maestrone’s Americanresearch career — firstas a research associateat New York City’sAnimal MedicalCenter where heestablished and super-vised the microbiologydiagnostic laboratoryof Speyer AnimalHospital. He movedto E.R. Squibb inNew Brunswick, NJ,as senior researchmicrobiologist andfrom there toHoffmann-LaRoche’s

Animal Science ResearchDepartment in Nutley, NJ, wherehe started as a senior microbiologistand retired 20 years later asresearch leader to join APDA.

Beyond his APDA contributions,he has been a pioneer in interna-tional development for PDresearch, and three years ago wasawarded the Italian government’stitle of Commendatore in recogni-tion of his numerous scientific con-tributions. Among these is his rolein establishing the World ParkinsonOrganization, which now numbers25 countries, and his support ofthe Associazione ItalianaParkinsoniani, which since itsfounding in 1990 has grown to 18chapters across Italy and 20,000members. His knowledge of fivelanguages proves a great resource.

Dr. Maestrone considers himself ajack-of-all-trades and likes to spendhis free time reading, pursuing hisphotography interest and with hisfamily, which includes son Frank,daughters Liz and Elena, and sevengrandchildren. There is also thenewest family member, Louie, ayear-old teacup Yorkshire terrier. ■

Paul Maestrone, DVM

Dr. Maestrone with hisCommendatore medal present-ed by the Italian governmentin recognition of his interna-tional scientific contributions.

Associate Director of Scientific and Medical Affairs NamedMichele Popadynec, RN, MPS, has been appointed Dr. Maestrone’s associ-ate. After earning her RN from Kings County Hospital Center School ofNursing and a Bachelor of Science degree from St. Francis College, both inBrooklyn, she was awarded a Masterof Public Service from the NewSchool University, Manhattan.

Ms. Popadynec, who was born inNanticoke, Pennsylvania, has been apediatric surgery intensive care unitstaff and head nurse at Kings CountyMedical Center where she also servedas associate director of quality man-agement. She has held various posi-tions in critical care, research andquality assurance at the BrooklynVeterans Administration Center,Brooklyn, and was the Department of Medicine administrator at SUNYDownstate Medical Center, Brooklyn, a title she most recently held atNorth Shore University Hospital, Manhasset, New York. ■

Ms. Popadynec, administrative assistant HeatherDuffy, and Dr. Maestrone organize more than100 fellowship and grant applications.

8

9

My 72-year-old hus-band with PD forsix years was doingwell on Sinemet

25/100 four times a day (at 8 AM,11AM, 2 PM and 5 PM), but he devel-oped a kidney stone and needed to gointo the hospital for removal of thestone. While in the hospital, theSinemet was given every six hours, anda new doctor added Mirapex. My hus-band became confused and rigid. TheMirapex was stopped and Requip wasadded along with Comtan. My hus-band is even worse. Now he is bloated,not eating, complaining of stomachpain and diarrhea. What do I do? Whatwent wrong? He was mildly forgetfulbut now he seems demented and hisPD has worsened.

Anotherdisconnectexists

between neurologists who treat manypatients with PD and those that do not.By the book — Mirapex and Requipare good dopamine agonists and benefi-cial in treating PD. By the book —Comtan extends the duration of L-DOPA and is beneficial in treating PD.But a neurologist with a great deal ofexperience in treating many, manypatients with PD would have realizedthat the hospital was not giving yourhusband the Sinemet at the three hourintervals that was most effective, thatphysical therapy and NOT bed restwould have been very important, thatMirapex and Requip have a great dealof hallucination potential in the elderlywith dementia, and that Comtan pro-duces many more gastrointestinal side

effects than can be explained simply byits enhancement of the potency of L-DOPA. Put your husband back on hisold schedule and get him out of thehospital as soon as possible. If you needto do anything right now, I would sug-gest to increase the Sinemet temporari-ly. If he needs any new PD medica-tions, Permax is a dopamine agonistwith less hallucination potential thanMirapex of Requip.

In the Winter 2003-04 Newsletter thefirst question in theQ&A was similar to

what my wife is going through, butwith some differences. She turns 75years of age next month and has hadParkinson’s disease for about 10 years.She was first placed on Sinemet25/100 3-times a day, Eldepyrl(Selegiline) 5mg tabs twice a day. Shestarted to have problems again and themedication was changed to Sinemet50/200 3-times a day. Problems per-sisted, and her medication waschanged to Sinemet CR 25/100 4-times a day. She then began, what Icall “dancing-like movements.”Medication was added, this timeSymmetrel (Amantadine) 100 mg capsand her ankles began to swell, bluesplotches appeared all over her legs,her hair began to fall out, her face wasflush and she complained of being hot.Her doctor told her to stop theSymmetrel to see if that was the cause.Three days after going off the medica-tion, she fell once a day for 3 days.Her ankles and feet were still swollen.She went back on Symmetrel. Theabove symptoms returned and herdoctor told her to stop taking theSymmetrel. She has now started to

clasp her hands together and at night,shakes so much that I am awakened.She hasn’t fallen so far, but she hasproblems moving to some degree.What can we expect next?

Your ques-tiondemon-strates the

disconnect between research onParkinson’s disease and the everydaytreatment of patients suffering fromParkinson’s disease. Current research isfocused on the causes of the accumula-tion of alpha-synuclein (which seemsto be the culprit in causing cell death),methods of delaying the progression ofcell death and surgical interventions,which except for subthalamic deepbrain stimulation, are experimental,unproven and dangerous. Meanwhile,while waiting FDA-approved therapiesthat will take many years to get to thelocal pharmacy, tens of thousands ofpatients such as your wife are seekingthe advices of skilled clinicians to helpthem to survive in reasonable goodshape, until the “cure” is available.

In this case it is obvious thatAmantidine helped your wife but shedid have side effects from this drug.Many of Amatidine’s beneficial effectsare due to its action as an anticholiner-gic drug. Simply reduce theAmantidine to one pill a day, whichshould reduce the side effects and add asmall amount of another anti-choliner-gic medication such as trihexane orbenztropin which will have the samebeneficial effect of Amantidine withoutthe side effects. If the side effects of theAmantidine persist, you could discon-tinue it but keep on the other anti-cholinergics. Sinemet may need to beincreased, if she worsens. ■

Q:&Questions Answers

A:

A:Q:

Enrico Fazzini, D.O., Ph.DAssoc. Prof. Neurology New York University, New York, N.Y.,University of Nevada, Las Vegas, NV,N.Y. Institute of Technology, Old Westbury, N.Y.

efore making any decisions aboutwhich personal — care needs you

should assume, ask your loved onewith what he/she would like help. Itmay be help with eating or helpbathing (i.e. a healthcare profession-al). Or, your loved one may not wanthelp at all.

It is a good idea to get sometraining before you begin;

ask your local hospitalabout training classesfor:1. Transferring (mov-ing to and from a bedor toilet).

2. Incontinence (loss ofbowel/bladder control)

management.3. Nutritional needs (ideas and supplements)

The caregiver’s credo should alwaysrule your activities:A) I have the right to take care of

myself. This will allow me to takebetter care of my loved one.

B) I have the right to seek helpfrom others, even thoughmy loved one mayobject. I recognizethe limits of myskills, time,endurance, andstrength.

C) I have the rightto take pride inwhat I am accom-plishing, and toapplaud the courage itsometimes takes to meet myloved one’s needs.

D) I have the right to reject anyattempt by my loved one tomanipulate me through guilt,anger, or grief.

Some suggestions follow for specificcare needs, such as:

Dressing:• Have him or her sit down while

you help with dressing.

• Use Velcro-closure sneakers, zip-pers instead of buttons, and slip-pers with non-skid soles to makedressing easier.

• Suggest that your loved one wearsweats or other action clothes.They’re easy to care for and com-fortable.

• Make sure slippers, socks, or shoesare always worn.

Moving:• Tell your loved one what you’re

going to do.• Stand with your feet apart and

balance your weight evenly withyour knees bent and your backstraight.

• Bend and straighten with yourknees, not your back; let your legscarry the weight.

• If you turn, pivot — using smallsteps with your feet; don’t twist.

Walking:• Let your loved one hold

onto you. With his or herarm around your waist

first, you can offersupport by then put-ting your armaround his or herwaist.

• You can offer eitheryour arm to lean on or

your hand to hold.• Encourage your loved one

to pick up his or her feet.• A four-pronged cane works well

for support assistance.

Bathing:• Recognize that your loved one

may not need to shower or batheevery day. You can wash parts ofthe body, as needed.

• If your loved one is unsteady, you10

C A R E GB

CAREGIVING...Cathleen Lear, Elizabeth, N.J.

I find caregiving to be one of thehighest forms love can take. Thegeneral public might look atcaregiving as taking care ofsomeone confined to home,bedridden or in the terminalstages of illness. With Parkinson’sDisease, (PD) it is not so.

Caregiving for someonewith PD is compatiblewith life. It is theday to day adjust-ments which areneeded, thepatience to do allthe things neces-sary to live withinthe constraints of thedisease, the stares ofthose insensitive souls whoseem fixated on the gait, thetremors or some other manifes-tation of PD, the on-off times,those moments when he/she justcan’t “kick in,” or the otherthings which must be put onhold because of circumstanceswe cannot control. Caregivinghas to do with sublimating yourown needs while taking greatcare of yourself, doing at leastone thing everyday for Y.O.U.,educating yourself, being ableto find the best doctor who willpartner with both of you or hav-ing the courage to move onuntil you do. Being an advocatefor both of you, providing thegreatest gift your love can give,that of never, ever doing forpersons with PD what they cando for themselves. If you allowthis to happen because it is easi-er for you to do it or because ittakes less time for you to do it,you are laying the foundationfor the one you love to becomea victim. Caregiving may be cry-ing rivers for what was, ranting

Continued on Page 11

11

I V I N Gand raving at the unfairness of itall, those valleys of despair fromwhich you must climb out, angerat what has been lost and howto deal with the challenges andperhaps even denial of reality.

But it must also include dwellingon the positive: Savoring thoselittle victories that medicationwas taken on time and workedso that there is little “off” time.It is pulling into a handicappedparking space during peak shop-ping times when the only park-ing is miles away. It is the loveand respect our children havefor their father. It is being ableto dance at our children’s wed-dings, watching Bill play withour granddaughters, being partof a support group with otherswho truly understand. It is therespect of family and friendswho realize that there arechanges in Bill’s body but not inhis mind.

It is realizing the importance oflaughter in our lives. Laughing atourselves, watching “BringingDown the House” again andagain, anticipating the laughterthat erupts during those outra-geous parts of the video. It isbeing able to meditate to bring

calm to an otherwise difficultmoment. It is in the

knowing what weknow that gives usstrength and hopeand courage togive care.

Caregiving is anevolving learning

journey where weare taught to cope

with the changes in thefabric of our lives. ■

CAREGIVING...Continued from Page 10

may want to buy or rent a showerbench or chair. Or install grab bars.

• Keep a sense of humor and aneasy-going approach tobathing.

• Assemble all yourequipment first,including a no-tears shampoo.Make sure thewater is warm,not hot. Rinseyour loved one,gently soap, and rinseagain. Have him or herlean forward for a shampoo.

• Respect your loved one’s right toprivacy. A towel or robe can beworn until the last minute.

Loss of Bowel or Bladder Control:• Clean your loved one’s skin as

soon as it’s soiled.• Use absorbent pads and/or briefs

with a quick-drying surface.• Cover the mattress with a rubber

sheet; use a mattress-protectingpad on top of the sheets.

Bedsore:• Bedsores are serious ulcers that

begin with reddened skin, butthey can eventually penetratemuscle and bone.

• Keep skin as healthy as possiblewith a good diet.

• Inspect skin at least once a day;bathe when needed for comfort orcleanliness.

• Prevent dry skin with lotionand/or cornstarch.

• Don’t massage bony parts of thebody; tiny injuries can occurunder the skin.

• Don’t let body areas rub together(e.g., separate knees when lying onthe side with pillows or wedges).

• Change position 1. Every hour while sitting, (every

15 minutes if the person can’tshift weight);

2. Every two hours while lyingdown.

• Use a mattress cover of sheepskinor eggcrate foam.

• Use a seat cushion ormattress that contains

foam, gel, or air (or,waterbed).• Avoid the use ofdonut-shaped cush-ions. They can decreaseblood flow and cause or

worsen an ulcer.• Lift, don’t drag, the per-

son across the mattress.• Ask your pharmacist or doctor torecommend a product for bed-sores. Protect the skin with acream or ointment.

Other Hints:• Stock a compartmentalized pill-

reminder container a week at atime.

• Buy a baby-monitor intercom(you can find one at electronicsstores).

• Try headphones for TV or radiolistening, especially if your lovedone is hard of hearing.

To Preserve Independence:• You and your loved one can move

to a smaller home, apartment, ormobile home.

• Live with assistance from visitingnurses, home healthcareaides, adult day care,meal delivery, trans-portation, and choreor minor-repair help.

• Home-share withanother older personor with a college stu-dent.

• Ask a banker aboutfinancial options like housesales, leasebacks, and reversemortgages. ■

Foot Note: Abstracted from the VermontParkinsonian January 2004

Information on Parkinson’s Disease

The material contained herein concerning the research in the field of Parkinson’s disease and answers to readers, questions are solely for the information

of the reader. It should not be used for treatment purposes, but rather as a source for discussion with the patient’s own physician.

THE PRINTING OF THIS NEWSLETTER WAS FUNDED BY

AN EDUCATIONAL GRANT FROMGLAXOSMITHKLINE

When the PD PatientNeeds Surgery

Single copies of the following publications may be obtained free of charge bywriting to the national APDA office or by calling the toll free number 1-800-223-2732 or Fax 1-718-981-4399.

EDUCATIONAL BOOKLETS1. Basic Information about Parkinson’s Disease

4-page brochure (English, Chinese, Spanish)2. Parkinson’s Disease Handbook

Symptoms, causes, treatment, 40-page booklet (English, German, Italian, Portuguese, Spanish, Russian)

3. PD “n” Me-Coping with Parkinson’s disease, 70-page booklet (English)

4. Be Active — A suggested exercise program for people with Parkinson’s disease, 25-page booklet (English, German, ltalian)

5. Be Independent — Equipment and suggestions for daily living activities, 32-page booklet (English, German, Italian, Spanish)

6. Speaking Effectively — Speech and swallowing problems in Parkinson's disease, 34-page booklet (English)

7. Good Nutrition in Parkinson’s Disease26-page booklet (English,Italian, Swedish)

8. Young Parkinson’s Handbook78-page booklet (English)

9. How to Start a Parkinson’s Disease Support Group24-page booklet (English, Italian)

10. Aquatic Exercise for Parkinson’s DiseaseA 20-page booklet for patients and their families (English)

EDUCATIONAL SUPPLEMENTSHospitalization, Helpful Hints, Living Will, Oral Health Care, TheFamily Unit, Helping Your Partner, Nursing Homes, Long Term CareInsurance, Recreation and Socialization in Parkinson’s Disease, ComtanQuestions & Answers, Use of Comtan in the Treatment of Parkinson’s disease, PD and the Emergency Room

CARELINK(A cooperative APDA - GSK project)You can now contact the APDA Information and Referral Center closestto you by dialing the toll free number 1-888-400-APDA (2732)

APDA WORLDWIDE WEB SITEwww.apdaparkinson.org for PD I&R Centers, Chapters, Support Groups,Education and Information Material, Meeting Dates, Publications,Medical Abstracts,Video Library, etc.

WORLD PARKINSON DISEASE ASSOCIATION WEB SITEwww.apda.org/ A weekly updated source of world news

12

Post-operative confusion and agita-tion is another situation wheredopamine blocking agents are oftenemployed. Older neuroleptic drugssuch as Haldol® and closely relateddrugs should be avoided. The newerso called “atypical neuroleptics” suchas Risperdal® and Zyprexa® alsohave a deleterious effect on the motorsymptoms of PD. The drugs of choicefor the treatment of post-operativedelirium are Seroquel® andClozaril® both of which are veryeffective and usually have insignificantnegative effects on PD symptoms.

Q) Why are so many people withPD confused after surgery?A) Post-operative confusion (deliri-um) is usually due to a number offactors in the PD patient. Certainly,as the age of the patient increases,post-operative mental status changesbecome more likely. Additional fac-tors that may play a role in post-operative delirium include pre-exist-ing dementia, anesthetic and painmedications, change in environ-ment, and the unfamiliar medicalstaff. Optimal management of thissituation requires treatment of thedelirium without compromisingmotor function. Thus, as notedabove, by using drugs such asSeroquel® or Clozaril® mental sta-tus can often be treated withoutlowering PD medications which canthen preserve motor function. Theapproach of lowering PD medica-tions to treat post-operative mentalstatus changes usually results inmarked worsening of motor statusand places the patient at greater riskof aspiration, blood clots, pneumo-nia and further deconditioning, allof which retard recovery. ■

Continued from Page 4