the american maintaining hope

n my work as the Coordinator of theLos Angeles APDA Information and

Referral Center at Cedars-Sinai Hospital, Ihave the opportunity to talk with people di-agnosed with Parkinson’s disease (PD) andtheir family members every day, and one ofthe most significant aspects of our contact of-ten centers on the subject of “hope”. Some-times it is spoken, and often unspoken, butthe question of hope is always present insome way.

Living with PD is challenging, both phys-ically and emotionally for the person whohas been diagnosed, as well as for familymembers. In difficult times it becomes vitalto have something to hold on to, and in myopinion, one of the best things is hope. Be-cause having hope can be such a powerfultool to assist with coping, it is certainly worthfurther exploration and understanding.

Defining HopeAccording to the dictionary, hope is: “A

desire accompanied by expectation of or be-lief in fulfillment; also expectation of fulfill-ment or success.” Richard Lazarus, a psy-chologist who has done a great deal of studyand writing on hope, defines it this way: “Tohope is to believe that something positive,which does not presently apply to one’s life,could still materialize, and so we yearn for it.Although desire is an essential feature, hopeis much more than this because it requiresthe belief in the possibility of a favorable out-come.”

The fact that having the diagnosis of PDbrings with it so much uncertainty, and be-cause you don’t know absolutely for surewhat will happen next, this creates the possi-bility that something good may happen, andthat possibility makes room for hope.

No one’s future is absolutely foretold, sowhile there may be reason to fear, there is alsogreat reason to hope.

Hope as a Coping ProcessMaintaining a hopeful attitude can be an

extremely helpful coping strategy. First itproduces action. Studies have shown thathope can galvanize efforts to seek improve-ment of an unfavorable situation. Withouthope we are unlikely to act on our own be-half. Hope combines yearning for somethingbetter with the belief that our actions couldhelp to bring about the outcome we want.

Hope is why people seek informationabout Parkinson’s disease and its treatment.Hope is why people become actively in-volved in getting the best treatment possible.Hope is why people exercise, concentrate ongood nutrition and focus on stress manage-ment. Hope is why people connect witheach other for support or do advocacy workor enroll in clinical trials. Hope is why peo-ple don’t give up, even in some of the mostdifficult situations. It keeps us engaged withlife.

The second way that hope aids coping isthat it serves as a vital resource against de-spair. The best defense we have against de-spair and the depression that accompanies itis hope.

Cultivating HopeBecause hope partly involves our thought

process, it is possible to make very deliberate,conscious decision to be hopeful. Now thismay not happen overnight, and it may notwork every single day, especially if you’re hav-ing a particularly bad day, BUT… it is worthtrying to focus on maintaining an overallhopeful attitude as much as possible. n

The American Parkinson Disease Association

A Quarterly Newsletter ©2005by The American ParkinsonDisease Association, Inc.

Paul Maestrone, DVM,Director of Scientific and Medical Affairs, Editor

Vincent N. GattulloPresident

Joel GerstelExecutive Director

INDEX

Maintaining Hope P. 1

President’s Message P. 2

Rasagiline, a New Drug P. 2

Drooling & Its Treatment P. 3

Q&A P. 4

F.Y.I. P. 5-8

Hospital Hazards P. 9

Drugs Trials —The Placebo Effect P. 10

Getting off to a Good Start P. 10

Is the New Medicare DrugBenefit Right for You? P. 12

Educational Material P. 12

Main Office:135 Parkinson AvenueStaten Island, NY [email protected]

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

F A L L 2 0 0 5 N E W S L E T T E R

Maintaining Hope

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By Linda O’Connor, LCSWCoordinator APDA I&R Center, Los Angeles, CA

Dear Reader,It has been the best of times and the worst of times for APDA dur-

ing the past few months.

Like thousands of Americans, we were affected emotionally seeing thesuffering of our fellow citizens as Hurricane Katrina ripped apart theGulf Coast and hurricane damaged Florida, but were also affected di-rectly, unable to contact or hear anything about our New Orleans I&R

Center at the LSU Medical School. After a few days word came from our newest Center atVicksburg, Mississippi. Though without communications, water or power, it was intact. Mean-while, Carla Cothran, in Birmingham, Alabama, was aiding in evacuee relief while addressingthe exacerbated needs of her regular constituency. We finally learned that Dr. Jayaraman Raoand Maureen Cook were safe and had opened a temporary site in Baton Rouge, La., and thatBrenda Allred, of the Vicksburg Center, after locating her patients listed as “missing persons,”was distributing flyers and press releases along the Mississippi Gulf Coast, offering assistance forpeople with Parkinson’s.

We are so very proud of our APDA family members who, despite their own obvious personalconcerns created by a such an horrific act of nature, never lost sight of their mission to help theirParkinson patients, but also their community.

On a happier note, this year marks the milestone of APDA having its own national headquar-ters. On September 14, after 39 years of operating from several, and often cramped and inade-quate offices, and without any interruption in service, the national staff moved into ParkinsonPlaza, its new three-story office building located at 135 Parkinson Avenue on Staten Island, justa short distance from where the first Chapter was founded. Having its own facility will mean asavings of more than $100,000 each year in rent, and build equity for the organization.

We are most grateful to numerous foundations and individuals who supported us with grantsand bequests, especially the Richmond County Savings Foundation, which contributed a lead$200,000 grant.

We dedicated the building on November 20, following the annual meeting of the national boardof directors.

In other action this fall, APDA and the Michael J. Fox foundation (MJF) collaboratively savedthe only PD state registry in the country by picking up funding of the Nebraska Parkinson’s Dis-ease Registry. The registry was begun six years ago by the Department of Health of the State ofNebraska following the campaign of former APDA Chapter president Bill Kopepski, but thestate suspended funds in 2004. APDA’s Creighton University I&R Center director, Dr. JohnBertoni, has been very involved in the program, and at the recommendation of the ScientificAdvisory Board, the executive board voted unanimously to join with MJF to fund the contin-uation of the registry.

Sincerely,

Vincent N. Gattullo President

P R E S I D E N T ’ S M E S S A G ERASAGILINE, A NEW DRUG

Rasagiline is a potent second genera-tion monoamine oxidase-type B(MAO-B) inhibitor, which has been de-veloped by Teva Neuroscience in part-nership with Eisai, Inc. This drug acts ina similar fashion to selegiline (Eldepryl)and is anticipated to receive FDA ap-proval and become available in theUnited States in the near future.

Rasagiline acts by inhibiting anenzyme (MAO-B) that degradesdopamine in the striatum, therebyincreasing dopamine function inthe brain. In laboratory tests rasag-iline is 15 times more potent thanselegiline. Several trials make thisan appealing Parkinson’s disease(PD) drug.

The TEMPO trial looked at 404 pa-tients with newly diagnosed PD. Par-ticipants were randomized into twogroups receiving rasagiline or placebofor the first six months of the trial. Allpatients received rasagiline for the sec-ond six-month period. At the end of12 months, patients who were in theearly rasagiline group were statistical-ly better on a PD rating scale thanthose who were on the placebo forthe first six months. This study strong-ly suggests that rasagiline is an excel-lent drug to use in early P.D. for po-tential neuroprotective effect andmild symptomatic benefit.

The PRESTO trial showed thatrasagiline lessened motor fluctuationsand decreased “off” time in patientsin mid to later stages of PD.

The LARGO trial included 454 pa-tients on carbidopa/l-dopa who hadmotor fluctuations. The group treatedwith rasagiline had significant im-provement in their gait (freezingspells), a troublesome symptom ofmany patients. Moreover, patients onrasagiline also showed significant im-provement in tremor, including thosewith severe tremor. This drug there-fore, offers potential benefit in boththe early and late stages of the disease.

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rooling, also known as sialorrhea,is a common symptom of

Parkinson’s disease (PD) occurring in upto 80 per cent of patients. Excessivedrooling canbe a nuisanceto patients,and it is some-times embar-rassing. Apartfrom this,h o w e v e r ,drooling cancause aspira-tion pneumo-nia (swallow-ing of droolinto the lungs)or skin irritations or infections if left un-treated.

Drooling in PD patients is causedby pooling of saliva in the mouth be-cause of difficulty swallowing due tomuscle stiffness. The difficulty inswallowing results from the effects ofPD on muscles that are used to movefood down into the stomach; it is notcaused by the production of increasedsaliva.

Early in the course of PD thedrooling may not be severe and mayhappen mostly during sleep, in partdue to gravity. Later, however, it maybecome more frequent and may causemore problems.

There are a few treatments optionsfor drooling in patients with PD.One approach is to increase the doseof the anti-Parkinsonian medicationthat the patient is already taking, inhope that better control of movementwill result in less pooling of saliva andless drooling. Another approach is totreat with drugs that block acetyl-choline, an important chemical mes-senger in the brain and body. Increas-ing medication doses and/or adding

another type of drug, however, canproduce side effects. This is especial-ly true when using anti-cholinergicmedications in the elderly popula-

tion. Third, there arenon-drug approachesthat include changingsleeping position andeating.

A relatively new ap-proach is to use botu-linum toxin type A(Botox®). Botulinumtoxin blocks the releaseof acetylcholine, pre-venting the injectedmuscle from excessivecontraction and move-

ment. Botox has recently received alot of attention for its use as a cos-metic enhancer, but it has long beenused for the treatment of spasticityand other movement disorders.

Botulinum toxin type A has notyet been approved specifically for thetreatment of drooling in patients withPD, but several clinical trials havesuggested thatit may be bene-ficial. A recent,well-controlledstudy conduct-ed in Germanycompared dif-ferent doses ofbotulinum tox-in type A andplacebo. Injec-tions were giv-en into eachparotid gland,one of theglands that pro-duce saliva.Drooling was reduced by approxi-mately 50 per cent in the patients re-ceiving the high-dose injection.

Overall, two-thirds of patients treatedwith any dose of botulinum toxintype A improved in terms of theamount of drooling. Because theamount of drooling was very high,the authors note that even a 50 percent reduction left many patientswith considerable drooling and im-pairment.

More research is being done to de-termine whether and to what extendbotulinum toxin type A might bebeneficial for drooling in Parkinson’sdisease patients.

Another form of botulinum toxin,type B, is also under study as a treatmentfor drooling in Parkinson’s patients.

A recent study by Dr. Ondo andcolleagues at Baylor College of Medi-cine compared the effects of a singledose of type B toxin injections intothe parotid and submandibular glandsto placebo injections in the same areason drooling and swallowing.

As was the case for the type A tox-in, type B toxin significantly reduceddrooling. Most patients in the botu-

linum toxin group rat-ed the improvement asdramatic, marked ormoderate, whereas pa-tients in the placebogroup generally report-ed no change.

These findings arepromising but difficultto compare to the typeA studies because ofdosing differences aswell as differences ininjection location andprocedures.

Additional studies willbe needed to examine

the effects of different doses of type Btoxin on drooling and on unwantedside effects. n

DROOLING & ITS TREATMENT

D

By Daniel Truong, MDMedical Director

APDA I&R Centers Long Beach, Fountain Valley, Laguna Hills, CA

4

My husband hase x p e r i e n c e depisodes of faint-ing lately. Hisblood pressure is100/60 in the

doctor’s office. At times it is higher. Noone knows why he faints. He is takingSinemet 25/100 and Requip 4 mgthree times a day. Can you help?

It is verycommon tohave wide-spread fluc-tuations inblood pres-

sure sometimes leading to fainting. PDmay lead to a degeneration in the auto-matic controls on blood pressure. Themedications may drop blood pressure.In a patient with wearing-off or on/offfluctuations, the blood pressure maydrop when the medications are work-ing and the muscles are relaxed and risewhen the medications are not workingand the muscles are rigid. In addition,your husband may be dehydrated. Iwould try to reduce all medicationswhich drop blood pressure — such asdopamine agonists Requip, Mirapex,and Permax — and try to manage himon controlled release and immediaterelease Levodopa-Carbidopa prepara-tions. Comtan may also be helpful.ProAmatine and Florinef could beadded to increase blood pressure. Re-member to monitor potassium levelsif Florinef is used. Keep him hydrat-ed. Monitor the blood pressure seat-ed and standing. Try to keep the sys-tolic blood pressure over 100 when hestands.

My wife did verywell on Permaxand is now fa-tigued on Mi-rapex. Her doctoris afraid of using

Permax because of the potential ofheart problems. Can we go back to us-ing Permax?

I have pre-scribed Per-max since1984 and Ihave neverseen a pa-

tient develop heart valve problems.This is a potential effect of the entireclass of drugs derived from ergotamine,which includes Permax and Parlodel.As long as she does not have heart valveproblems to begin with and anechocardiogram is done periodically,there is much less of a chance of Per-max inducing a heart valve problemand she can return to taking this med-ication. Permax is stronger and has lesssedation and psychosis potential thanMirapex and Requip.

My husband hasdeveloped a ten-dency to be ob-sessed aboutcleaning thegarage and base-ment. He will be

awake during the night worrying aboutfinances even though there is no prob-lem. He is also obsessed with sex andgambling. He is on Mirapex 1.5 mgand Stalevo 100 three times a day.What should I do?

Mirapex andRequip causelimbic stimu-lation, and al-though they

are helpful in elevating mood and mo-tivation, they can cause psychosis. Psy-chosis includes obsessions, paranoia,delusions and hallucinations. There isalso a potential for being easily angeredand aggressive. These medicationsmust be reduced and discontinued ifnecessary to alleviate these symptoms, orthey will increase. Seroquel or Clozarilare frequently helpful in reducing thesymptoms.

My brother hashad PD for sevenyears. He had re-cently developedconfusion. Hesometimes forgets

what day it is. He leaves his keys in oddplaces and cannot find them. He is onStalevo 150 taken four times a day andEldepryl. Is this Alzheimer’s disease?

PD patientscan developd e m e n t i a .This impair-ment in cogni-tive skills such

as attention and memory must be dis-tinguished from psychosis. In this caseI would discontinue the Stalevo and El-depryl, use immediate-release Sinemetand place him on either Aricept or Ex-elon. Namenda could be added as well.He should refrain from driving untilhis cognitive skills have improved.n

&Questions AnswersEnrico Fazzini, DO, PhDAssoc. Prof. Neurology New York University, New York, NY,University of Nevada, Las Vegas, NV,N.Y. Institute of Technology, Old Westbury, NY.

Q:A:

Q:

Q:

A:Q:

A:

A:

In 1971, Philip Mayer Good, ajoyous 7-year-old who loved tovisit Oglebay Park — the nation-ally famous, city-owned 1600-acre park in Wheeling, WV —died after a year-long illness. Hisdeath devastated his parents andtwo younger brothers, Jay andPaul, but Laurance (Larry) andBarbara Good were determinedto turn their loss into a lasting andloving memory of Philip’s spirit.

The strength of character andflexibility that brought Larrythrough Philip’s death came tothe fore again four years ago whenhe was diagnosed with Parkinson’s.Despite his soft voice and “annoying”gait problems, he has been for the past10 years the full-time director of de-velopment at Wheeling Hospital, a270-bed acute-care facility; he drivesto work, gardens, exercises daily andswims almost every day.

Having had 38 years’ experience asthe senior vice president of merchan-dising in a respected 100-year-old re-tail business, Larry earned his CEBS(Certified Employee Benefits Special-ist) and five additional designations in-cluding CLU (Certified Life Under-writer) and ChFC (Chartered Finan-cial Consultant), and became affiliatedwith a prestigious employee benefitsfirm. This segued into his currentwork in health-care development.

But Barbara’s and his true love —beyond their family itself — is the zoo.In “A Thumbnail Sketch of the Histo-ry of Oglebay’s Good Zoo,” Barbarawrote in 1979, “Remembrance of him(Philip) created the spark and the in-spiration for this facility — and still

does.” As a committee member of the es-

teemed and dynamic Wheeling ParkCommission, Larry learned — duringPhilip’s illness — of the plan to build a10-acre zoo in the next decade. It wasthen that the Goods committed theirresources, their energies and their love.Their funds were magnified by themany memorial contributions made asan outpouring of love at the time ofPhilip’s death. The sum was matchedby the Wheeling Parks System TrustFund and subsequently doubled againby coveted and federal grants awardedby the Appalachian Regional Com-mission and the Bureau of OutdoorRecreation.

With the site being moved to alarger-than-originally-anticipated 30-plus-acre location, ground was brokenand the Good Zoo was off and run-ning. In 1974, Joseph Bissonnette, theformer director of the Pittsburgh Zoo-logical Society, joined the staff, as didPenny Miller, who is now director ofthe only accredited zoo in West Vir-ginia, and who is especially proud of

its endangered species program’ssuccess — including the birth of22 rare red wolf pups.

Barbara remembers how Jayand Paul (both under 10 years atthat time) saved their allowance infour Mason jars, dividing theirmonies among religious school(charity), savings, spending, andthe zoo. “The zoo jar always hadthe most in it at the end of eachweek,” remembers Larry. InPhilip’s memory more than 6,000individuals and families addedtheir contributions to the boys’$34 — the latter being the mon-

ey which created Good Zoo Friends,the support arm of the zoo with an ini-tial membership of more than 10,000people.

To this, Larry and Barbara addedanother significant contributionwhich funded several one-of-a-kindexhibits including the incomparablemodel-train exhibit, the outdoor trainwhich takes zoo visitors on a 2-mileride through the complex (comple-menting the 2 miles of walkwaysthroughout). The additional moneyenabled the zoo to be a year-round fa-cility, inspiring the Benedum Founda-tion to endow it and establishing it asthe Benedum Planetarium Theaterwhose director, Steve Mitch, has beenthere since its inception.

In order to document the story ofthe zoo, Barbara and Larry commis-sioned the internationally-acclaimedand Wheeling-based filmmaker, EllisDungan, to photograph the variousstages of its growth and in the late ‘70s,they co-wrote and produced “GoodZoo and How It Grew”, a 12-minute

Barbara and Laurance Good look in on newborn naked mole-rats at an exhibit at the Good Zoo in Wheeling, West Virginia.

F.Y.I. is a guide to the efforts and successes of the hundreds of volunteers

and staff who work daily to help ease the burden and find a cure and formillions of persons with Parkinson’s andtheir caregivers across the United States.

FALL 2005 VOLUME XII NO. IVFYI EDITOR: K.G. Whitford

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GOOD PEOPLE MAKE GOOD THINGS HAPPEN

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Mark Higginshas done itagain! The Sec-ond Mark Hig-gins Ride fromPresque Isle toF a l m o u t h(Maine), Sept6 - 10, raisedmore than$5,000 for PDresearch andlots of aware-

ness including television coverage allalong the 300-mile route. Averagingabout 70 miles a day, Mark, who wasdiagnosed at age 35, and for the past16 years has defied his doctor’s 5-10-year prediction until total disability,took up cross-county and downhillskiing, kayaking, climbing, hiking andflying ultra-light airplanes. He alsohiked 350 miles of the AppalachianTrail three years ago. “He wanted todo the entire 2,160 miles from Geor-gia to Maine, but his wife Debbienixed that,” reports Falmouth Coordi-nator Lillian Scenna, “so he settled tostop in Virginia.”

Things are busy and productive inneighboring Massachusetts, wheremore than $100,000 was realized bythree very successful summer events.The annual walk at the Reebok Inter-national Headquarters raised $68,000in June and two months later the 10thAnnual Putt at the Sandy Burr Coun-

try Club raised another $30,000 withthe help from NFL, NHL, and Amer-ican Baseball League celebrities. The“Summer of the Arts Exhibition”rounded out a busy summer for CathiThomas and Laura Bridges of theBoston I&R Center, still leaving themtime for the Annual Winchester Sym-posium addressing, “Non-pharmalog-ical Approaches to Caring for PD.”

Dr. Cheryl Waters, movement disor-der specialist, researcher and authorfrom Columbia University, NYC, dis-cussed “Parkinson’s Disease: ExcitingAdvances & Emerging Treatments” atConnecticut’s Lecture/Luncheon Se-

ries and Annual Awards Ceremonylast month. The Chapter also awardedRobert Mandelkern its Volunteer ofthe Year Award and Andrew Spagno-letti the Caregiver of the Year Awardduring the luncheon.

The Long Island Chapter did it againwith a bigger and more successful“Paws for Parkinson’s” walk. Morethan 300 people and 120 furry friendsraised approximately $20,000. Presi-dent Viginia Cravotta told the NewYork Times that it was a pet day withtalent and dog costume contests and anagility course, and that all participatingdoggies got a thank-you card afterward.

Mark Higgins with hiswell-earned trophy aftercompleting more than 300miles on his bike ride fromPresque Isle to Falmouth.

Multigenerational walkers circled the Reebokheadquarters to raise dollars for PD research.

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APDA is literally a family affair inthe Memphis, Tenn. home ofPatrick and Gina Cici — and espe-cially 20-month-old Nicolas Cici.

Gina has been the Memphis I&Rcoordinator since 1998, her hus-band Patrick has been presidentof the Mid-SouthTennessee Chaptersince April andNicolas has been,since the I&R coor-dinator confer-ence in Maine in2003.

According toPatrick, a policeofficer for Mem-phis suburb ofBartlett, member of its SWATteam, and vice president of the lo-cal police association, he becamepresident in order to see his wifemore. Gina, however, reports thatthere is more to the story.

After the Chapter president re-signed and the vice presidentpassed away, it looked as if tem-porary dissolution was inevitable.But Patrick went to the rescue.“Pat knows a lot of people in thearea and asked if he could give ita shot to keep the Chapter alive

until new officers could be enlist-ed,” says Gina. “Of course, wewere delighted.”

And Nicolas? Well, Patrick wason Naval Reserve duty in Sicily in2003, and Gina, who hadarranged for care of their two

daughters, Sa-vannah and Na-talie, now 7 and 4r e s p e c t i v e l y ,thought thatMaine would bea nice secondhoneymoon. “Patflew in from Sicilyand met me inMaine and wehad a week be-

fore the conference.” That yearGina returned to Memphis withthe Salvatore Esposito, Sr. Awardand, unknowingly, the to-beNicolas.

When Gina announced in Octo-ber, two months after the 2005Presidents’ & Coordinators’ Con-ference in New York City, thattheir fourth child was on the way,the obviously question was, an-other APDA baby? But no, thenew Cici is expected May 30, thuspost conference. n

Memphis I&R coordinator Gina Cici only has eyes for Mid-South Tennessee

Chapter president Patrick Cici.

APDA IS ALL IN THE FAMILY IN MEMPHIS TENNESSEE

Here is the story of a support groupthat bonded so well that it created apre-support group meeting meeting.South Florida coordinator GigiGilcrease reports that Milton Shapirofounded the “Parkinson Dutch LunchBunch” that meets before the month-ly meeting wearing their APDA tee-shirts to increase awareness in theircommunity and enjoy good food,good conversation and their long-last-ing friendship.

Welcome to APDA’s 61st Chapter lo-cated in Madison, Wisconsin. ScottGlendenning, is the president.

There were no low-carb fanciers at Di-anne Dallmann’s Pancakes for theParkinson’s event in New Ulm, Min-nesota — just lots of dough. Approx-imately 200 pancake eaters showed upat Applebee’s restaurant in New Ulmin June for free pancakes and raisedmore than $3,000 for the Chapter.Dianne’s husband Gary, a retired col-lege professor and coach, has stayedactive since being diagnosed at age 50.Coordinator Paulette Olsen says thesyrup on the pancakes was the front-

page coverage in the NewUlm Journal adding valu-able publicity about PD. Midwest (Illinois) Chap-ter President Mary AnneOstrenga is still reveling inthe success of the Sept. 10walk-a-thon that raisedmore than $70,000. “Wehad a spectacular day, withmore than 800 partici-pants. What a fabulous

turnout, the spirit of the people at-tending was fantastic,” she reports,and is busy planning next year’s event,Sept. 9, 2006.

The 2005 Chicago area supportgroup leaders’ workshop and lunch-eon on Halloween addressed “Alterna-tive Medicine: Helpful, Harmful orHocus-Pocus?” The event, held at theHighland Park Hospital, exploredwellness lifestyles and alternative ther

apies as adjunctive treatment to tradi-tional medical treatments.

St. Louis TV and radio personalitiesand community volunteers added tothe success of the local chapter’s “Broad-way On The Runway” in September.Coordinator Susan Levin says morethan 200 donated items including ahandmade Victorian dollhouse madefor a very successful silent auction.

The Los Angeles Chapter’s 1920s-themed “Charleston Club and Casino”held at Hollywood’s historic WattlesMansion was a grand success with roar-ing ‘20s music and silent auction itemsincluding a vacation in France. n


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THE REAL BEAUTY OF THIS SPA DAYIS THAT PD RESEARCH BENEFITS

Last year Carol Lenz of Bell-port, New York, entered andwon the Ms. Senior NewYork pageant and went onto be a finalist in the SeniorMs. America pageant in LasVegas. Carol was diagnosedwith PD in 1994 and has ded-icated her time, talents andefforts to raise funds for

Parkinson’s research and awareness about the disease. In July, she hosted a Body & Mind Spa Day at her home to benefit

APDA research. More than 70 friends and friends of friends spent thebeautiful morning learning massage techniques, practicing Yoga, havingtheir tennis techniques evaluated by the Bellport Country Club tennispro, exercising and learning movement routines before luncheonaround the pool.

Above, Carol, center, posed with Ethel Bennett, NY State Pagent Di-rector, Marie Mango, Ms. Senior NY State 2003; Maureen Smith Setton,NYS 2001 and 1st runner up in national competition; Sandy Greco, Ms.Senior America 2003-2004; Terri Stevens, NYS 2002 and Marleen Schuss,State co-director.

On page 8 Carol shares, “one of the most moving moments of mylife,” during the Senior Ms. America Pageant. continued on page 8

The Journey of a Dream RealizedBy Carol Lenz

The gift of unconditional love hascarried me to magical places. Places Icould only have dreamed about. Withall the love, devotion and commitmentof so many cherished friends, my lifehas been so enriched. I can hardly be-lieve how fortunate I am. With eachnew experience I feel like a little girlwith a basket filled with golden retriev-er puppies.

This glorious journey began twoyears ago with an article in the localnewspaper about Ms. Senior New Yorkand the exciting opportunities I mightexperience by entering the state pag-eant contest. This sounded like a per-fect distraction for me at the time. Theaudition, the rehearsing, the prepara-tion was exhausting but wonderful. Ienjoyed every minute of it from thejudges’ interviews to the actualperformance. Meeting and work-ing with all the other contestantswas an invaluable experience, andas I stood there among all the oth-er contestants and heard my namecalled as the winner, I literallyfloated upstage to be crownedMs. Senior New York 2004.

Nov. 24, 2004 — The Nation-al Pageant in Las Vegas. Unfath-omable gowns, stage makeup, re-hearsals, galas, dances, dinners,film crews backstage, state sashes,crowns, past queens, state and na-tional directors. What a week!

Can you imagine one day I’mat home, unpacking groceries,picking up the dry cleaning, read-ing a book for my book club,stopping at the toy store to buymore trucks for my 2-year-oldgrandson, going to our Fridaynight movies and making plansfor the holidays with our children,and the next moment I’m clickingmy heels twice, closing my eyes,and there I am in my white suit,

sash and crown holding the micro-phone on the plane to Las Vegassinging the medley for the nationalpageant. Forty dear friends joined me.I called APDA’s Las Vegas chapter andthey came to add their support. Howcan it get any better? It can, and it did.National Pageant week with all itsscheduled responsibilities was fun, ex-citing, educational and exhausting.

A typical morning:Arise at 5:45 - 6:00 a.m. — shower,

hair and makeup7 - 8 a.m. — breakfast with all the

state queens8 a.m. - noon — rehearsals, talent,

philosophy of lifeNoon - 1 p.m. — lunch. After

lunch, competitions, meetings and in-terviews with judges and alternatingtalent and philosophy of life.

I was very tired but very happy. MySinemet and Requip were cooperating

and doing their jobs. The last day ofcompetition, however, as we were lin-ing up for our parade, the Sinemet andRequip suddenly went on strike withno warning and no time for negotia-tions. They just walked off the job andleft me stranded without anydopamine — I froze. Unlike the Titan-ic, I was surrounded by every one ofthe state queens telling me in one clearvoice, “We will help you. You can doit. It is very important to each andevery one of us that you get up, andwe’ll walk out together.” With all theirhugs and kisses and prayers, we were onour way: they physically picked me up— two queens in front and two behind— and literally held me up as we goton stage. After awhile, my pills finallykicked in.

The gift of true friendship is that ittakes us by the hand and reminds us thatwe are not alone in this journey of life! n

documentary narrated by Barbara.In a recent zoo book entitled A

Guide To America’s Best, Allen Nyhuiscalls the Good Zoo one of the top tenchildren’s zoos inthe United States.

In 1975, 10 yearsafter the births oftheir sons, theGoods were blessedwith two daughters— Jenny, who re-sides in Colorado,and Heidi, who livesin New York.

Larry and Barbara bring a thriving46-year partnership to their new chal-lenges. He lives his active life, and shedoes likewise. As a professional musi-cian, she has a busy career, performingher popular cabaret shows, doing wed-dings and parties, being a featured en-tertainer at Oglebay as well as directorof music and cantorial soloist at theircongregation, Temple Shalom. Larry

takes tremendous pride and joy in herand her music and says “she is one ofthe finest cabaret singer-pianistsaround, with successful shows at The

Kennedy Center, inParis, and whereverthe muse calls.”Barbara says thatshe doesn’t see herParkinson’s caregiv-er role as a new ordifferent role be-cause, “every loving

wife is always a care-giver.”

Larry, who thinks it’s funny thatone of his medications directs “shakebefore taking,” continues to beguilepeople with his sense of humor. WithBarbara, their busy, interactive family,their memories and never-ending loveof life, he is meeting his PD diagnosiswith the same courage and strengthwith which he has met his other chal-lenges. n

Good People Make Good Things Happen continued from page 5

The Goods enjoy the zoo dedicated as a memorial to their son Philip Mayer Good.

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The Real Beauty of This Spa Day Is That PD Research Benefits continued from page 7

ost people make an assumptionwhen they check into a hospital,

they can trust its staff to take good care ofthem. But mistakes do happen, some-times with serious or even fatal conse-quences.

A doctor, practicing for 35 years, did-n’t realize how dangerous hospitals can beuntil he was hospitalized for an angio-plasty three years ago. An artery rupturedduring the procedure, and he had to haveemergency open-heart surgery to repairit. Then the doctor caught a nasty staphinfection from an unsanitary catheter.To top it all off, the doctor developedphlebitis in his arm from repeated needlesticks. The swelling took months to heal.

This experience is not unique. Some-thing similar could happen to you, butyou can protect yourself if you knowwhat to watch out for.

Identity Mistake. Being mistakenfor another patient occurs more of-

ten than you might imagine. Once youget your room assignment, ask if anotherpatient in the ward has a last name that’sthe same as, or similar to, your own. Ifso, ask to be moved to another ward.Such a request might raise a few eye-brows, but your life may be at stake.

As soon as you move into your room,post a sign with your name and roomnumber directly over your bed. Ask afriend or family member to spend asmuch time with you as possible through-out your hospital stay, asking questions,insisting that you get proper care, etc.Your “patient advocate” should make itclear that he/she expects to be consultedon all treatment decisions. This persist-ence could save your life.

If you’re having surgery it’s not un-heard of for surgeons to operate on thewrong side of the body, take out thewrong organ, etc. To avoid such errors,meet with your surgeon the night beforesurgery. Discuss the procedure in detail,including the exact body part being op-erated on. For absolute safety: be sure,a few hours before surgery, to use a felt-tip pen to write CUT HERE on the in-

cision site.Catching an Infection. One in fivepeople catches an infection while

hospitalized. Each year 80,000 patientsdie as a result of such nosocomial infec-tions. Staph infections can be deadly, es-pecially if you come down with one ofthe antibiotic resistant strains.

What is the high incidence of hospi-tal infections due to? Dirty hands andmedical equipment are the usual culprits.Only one out of four doctors consistent-ly washes his/her hands between pa-tients. An even smaller portion washtheir stethoscopes between patients, somuch that the American Medical Associ-ation has issued a warning about “KillerStethoscopes”.

Wash your own hands frequently, andinsist that all doctors and nurses washtheir hands before touching you. Be po-lite, but don’t worry about offendinganyone.

Alert the staff immediately if yourroom seems dirty or if you run out ofsoap or paper towels. Make sure that anyequipment that comes into contact withyour skin has been swabbed with alcohol(or covered with a fresh disposable covershield). This goes for stethoscopes, ther-mometers, otoscopes, infusion pumps,hemodialysis equipment and urinarycatheters.

Because Intensive Care Unit (ICU)beds are so close to one another, infectionrisk is always greater in an ICU than in aprivate or semiprivate room.

Getting the Wrong Medication. Anurse might inadvertently give you

the wrong drug, or give you the rightmedicine at the wrong dose, wrong timeor by the wrong route.

Each year, tens of thousands of hospi-tal patients die as a result of such med-ication errors and account for 40 per centof all adverse drug reactions in U.S. hos-pitals, according to a Harvard study.

Defense Measures: Learn the names,dosages, and correct administrationroute of any drugs prescribed for you.Check this information with the nurseeach time you’re given a medication.Learn the dosing schedule, too. Nursessometimes fall behind schedule and haveto be reminded.

If you’re given a pill or liquid (or in-travenous fluid) that differs from whatyou’ve been getting, double-check withthe nurse before taking it.

Alert the nurse at once if you experi-ence any untoward reaction to a drugsuch as pain or a burning sensation,shortness of breath, dizziness, confusion,tightness in your chest, numbness oritching. If you have any allergies, be surethey’re listed on your medical chart.

Security. With all the hospitalstaffers, patients, family members,

delivery people, etc., roaming the hospi-tal, it’s difficult for hospital security tokeep track of everyone.

More than half of all hospital violenceoccurs in the emergency room (ER).One in three ER patients is armed, one infour is on some kind of illicit drug.While in the ER, don’t talk or stare atanyone who is tense, loud or belligerent.Quietly alert a security guard or desk at-tendant. Hospital parking lots can bedangerous, too. If you feel nervous, ask ahospital security guard to escort you toand from your car. If you’re staying in ahospital room, inquire ahead of timeabout security arrangements. Before go-ing to sleep, make sure that the bathroomlight is on and that the nurse call buttonis within easy reach. n

Adapted from “How to Get out of the Hospital Alive”,published in the December 2001 Issue of the VermontParkinsonian.

HOSPITAL HAZARDS

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medication may have several effectson a patient. Some effects may bedirectly related to the medication’s

effect on the body’s functions, which iscalled the pharmacological effect.

Another effect of a medication maynot be linked directly to the medicine’spharmacologicaleffect. This iscalled the placeboeffect. A placeboeffect can be ob-served when apharmacologicallyinactive substanceis administered.

What is theplacebo effect,what does the placebo effect have to dowith the process of developing new treat-ments or new medications in controlledclinical trials, what is the importance ofthe placebo effect for clinical trials inParkinson’s disease?

The word placebo comes from theLatin verb “placere,” that means, “toplease.” Placebo is an inactive treatmentand the placebo effect is the effect (usual-ly beneficial) resulting from the adminis-tration of an inactive substance. When apatient receives any treatment (whether itis active or not) there may be a beneficialeffect experienced by the patient just be-cause there is an expectation of benefit.Placebo effects can result simply fromcontact with doctors or other health careproviders, even in the mere act of inter-viewing or examining a patient. Theremay also be beneficial effects of additionaltreatment or improved care provided dur-ing the clinical trial of a new medication.

In addition to expectation of benefit,other contributors to this improvementin patients’ symptom scores may includethe tendency for patients to enter trialswhen their symptoms are worse, and

“bias” in the rater’s scoring of patientssymptoms.

The beneficial effect resulting fromthe act of receiving treatment may bequite powerful and long lasting. For ex-ample, in some studies of asthma andpain, there was improvement of 30-40

per cent in sub-jects given place-bo (inactive)medications. Thebeneficial effectof receiving anytreatment is notlimited to med-ications, as theexpectation ofbenefit alone

may lead to improvement in symp-toms after surgical procedures as well.

The placebo effect can interfere withthe assessment of whether a new medica-tion or treatment is really beneficial.Therefore, when new medications aretested, they are commonly compared toan inactive treatment (placebo); this is aplacebo-controlled trial.

When neither the patient nor the ex-aminer knows whether the patient is re-ceiving active treatment or placebo, thetrial is referred to as “double-blind.”When the subjects are assigned to activetreatment or placebo groups by chance,this is called a randomized trial. Ran-domized, double blind, placebo-con-trolled trials offer the most effective wayto control for the placebo effect and havebecome the “gold-standard” in clinicaltrial design for assessing new drugs ortreatments. For a new medication ortherapy to be considered effective, it mustbe shown to be better than a placebo in adouble-blind, randomized, placebo-controlled trial. Sometimes therapiesthat are thought to be effective are no

Talking with Charlie Lund abouthis 18 year effort to stay on top ofParkinson’s disease brings to mind asailor charting a course. He sets outon course, knows and applies therules, makes small changes from timeto time, but in the end, he maintainsthe course!

From the first day Charlie learnedhe had PD, he embarked on a plan.He reports he was blessed to have awonderful neurologist to get him offon the right foot, saying with en-couragement, “We can treat it!”“He gave me hope!” Charlie ex-claims, “and I became his star pupil!”

Charlie says that living well withPD is no secret. It requires a positiveattitude, regular exercise, great sup-port, and good management of themedications. Charlie uses a video-tape to do a 45 minute daily exerciseat home and then rides his bike out-doors, weather permitting. Threedays a week he goes to the fitnesscenter to work out on the bike, swimin the pool, and relax in the hot tub.

Charlie feels that exercise is vital.Long ago he heard several physicaltherapists give a talk on Parkinson’sdisease. Upon hearing them com-ment that the people they see in thenursing homes arrive so decondi-tioned that it is difficult to initiate ex-ercise at that stage, Charlie vowed tostay ahead of the Parkinson’s bykeeping fit. His daily workouts havekept him going.

Charlie attributes support frommany people to his successful lifewith PD — support from his doctor,from his wife and his support groups.Charlie and Patricia have attendedtwo Parkinson’s support groups near-ly every month since he attended hisfirst one in December of 1998. Be-cause they are so powerful for him,he even remembers the date whenhe went to his first group. “I enjoy it!

GETTING OFF TO AGOOD START

Drugs Trials — The Placebo Effect

By J. Stephen Fink, MD, Ph.D.


A


I learn things!” He feels people whojoin a support group realize thatthey are not alone. They learn howto take a positive attitude and to“exercise, exercise, to stay ahead ofthe disease.”

Charlie also “gives back” by beinga spokesperson for Parkinson’s dis-ease. “I am always willing to helpout. I like to move forward, and Imake a lot of friends that way.”

Lastly, Charlie is inspired by hisfriends. They meet for coffee everyday, take interest in him, and tell himhow well he is doing! n

Originally published in the Fall 2004 issue of theMinnesota Messenger, the APDA Minneapolis I&RCenter Newsletter.

GETTING OFF TO AGOOD START

continued from page 10

better than placebo when tested inthis type of trial.

Long lasting placebo effects havebeen reported in Parkinson’s disease.In some medication trials improve-ment in motor scores of 20-30 percent in patients assigned to the place-bo group has been observed for up to6 months. Similarly, improvementand deterioration in Parkinson’s dis-ease patients have been observed afterthe introduction and discontinuation,respectively, of placebo medication.

Placebo effects appear to be partic-ularly evident in the clinical trials ofsurgical therapies. In the doubleblind, clinical trial of human fetaltransplantation in Parkinson’s diseaseconducted by Fahn, Freed and col-leagues, the control group received an“imitation” surgical procedure. Sever-al of the patients in the control grouprated themselves improved one yearlater. Similarly, 30 per cent improve-ment in motor scores in the placebocontrol (imitation surgery) patientswas observed in the double-blind trialof porcine mesencephalic tissue. Inthis trial, improvement in the controlgroup lasted at least 18 months,longer than had been previously ob-served in clinical trials of medications,suggesting that placebo effects may bestronger in clinical trials of surgicaltherapies.

What causes the placebo effect? Itis not possible to test adequately forplacebo effects in laboratory animalexperiments because animals are notknown to have responses to placebo.It has been assumed that the placebo

response is not mediated directlythrough a physical or chemical effectof treatment. However, a remarkablestudy by Jon Stoessl and colleaguesdemonstrated that the placebo effectin Parkinson’s patients was accompa-nied by a release of brain dopaminefrom the remaining midbraindopaminergic cells. This suggests thatthe improvement in motor functionthat is observed in the placebo groupsof clinical trials in Parkinson’s patientsmight be due, in part, to actualphysiological changes in thedamaged brain dopamine nerve cells.

In summary, the placebo effect isimportant in the testing of new med-ications for Parkinson’s disease. It dic-tates the design of clinical trials of newmedications by the inclusion of place-bo groups. The placebo effect mightbe considered to “benefit” thoseParkinson’s disease patients who joinclinical trials and are assigned to theplacebo group, as they may demon-strate improvement in symptoms. In-deed, some of this improvement insymptoms in the placebo group mayactually be due to beneficial changesin brain dopaminergic nerve cells.

This perspective underscoresthe often-spoken adage at Parkin-son’s disease centers: “One of the bestthings to do when a patient first learnsof the diagnosis of Parkinson’s diseaseis to join a clinical trial.” Among themany benefits of such participationmay be the placebo effect! n

Adapted from “The Placebo Effect in ClinicalTrials” by Stephen Fink, MD, Ph.D. in theSummer 2005 Young Parkinson’s Newsletter.

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Drugs Trials — The Placebo Effect continued from page 10

For early disease, there is mildsymptomatic improvement and neu-roprotection, for late disease there islessening of tremor and freezingspells. n

Abstracted from the Fall 2004 Parkinson’s Source, theAPDA Pompano Beach, FL I&R Center Newsletter.

continued from page 2

RASAGALINE

Designed to bring the Parkinson’scommunity together, this conferencewill enable patients and caregivers to:• meet leading doctors, scientists andresearchers from around the world• talk with PD advocates about newresearch, clinical trials, coping andhow to afford family care • meet other patients, caregivers andfamilies struggling with PD.

For more information call World Parkin-son Congress, at —1.800.457.6676 or goto www.worldpdcongress.org

THE WORLD PARKINSON CONGRESS

WASHINGTON, D.C.FEBRUARY 22-26, 2006

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Information on Parkinson’s Disease

Materials concerning the research in the field of Parkinson’s

disease, and answers to readers’ questions are solely for the

information of the reader and should not be used for treatment

purposes, but rather as a source for discussion with the

patient’s health provider.

Single copies of the following publications may be obtained free of charge by writ-ing 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, Japanese)

7. Good Nutrition20-page booklet (English), new edition

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 Disease20-page booklet for patients and their families (English)

11. My Mommy Has PD... But It’s Okay!20-page booklet for young children.

EDUCATIONAL SUPPLEMENTSHospitalization; 34 Helpful Hints; Living Will; Helping Your Partner;Adapting to a Nursing Home; Comtan (Entacapone); The Treatment ofParkinson’s Disease: Question and Answers; Comtan: Extending the Benefitsof Levodopa; Comtan (Entacapone) Tablets and the Quality of Life in Pa-tients with Parkinson’s Disease; Caring for the Caregiver: Body, Mind andSpirit; The Family Unit; The Fine Art of “Recreating & Socialization” withPD; Medical Management of PD; Vision Problems and PD; Mirapex® in theTreatment of PD; Fatigue in Parkinson’s Disease.

APDA WORLDWIDE WEB SITEwww.apdaparkinson.org for PD I&R Centers, Chapters, Support Groups,Education and Information Material, Meeting Dates, Publications, MedicalAbstracts, Clinical Trials, etc.

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

THE PRINTING AND DISTRIBUTION OF THIS NEWSLETTER WAS PARTIALLY SUPPORTED BY A GRANT FROM GLAXO, SMITH, KLINE.12

Starting January 1, 2006, Medicarewill begin offering a new prescrip-tion drug benefit (Part D).Medicare prescription drug planswill only be available through pri-vate companies. Questions to con-sider before enrolling in a plan —as well as information about howthe new benefit will affect existingcoverage — can be found onMedicare Interactive, now avail-able on the American ParkinsonDisease Association Website.

Companies have great flexibil-ity in how they can structure indi-vidual plan benefits. The monthlypremium for the new drug benefitwill average roughly $35. Mostplans will have deductibles (rang-ing from $0 to $250) and requiremembers to pay co-payments orcoinsurances. With all plans, after$3,600 has been spent out-of-pocket — including the premium—Medicare will pick up 95 percentof the cost of prescription drugs.

Enrollment has begun andsigning up after May 15, 2006could bring a penalty fee.

Whether you should enroll inthe new benefit depends onwhether you have prescription drugcoverage now, and the quality ofthat coverage. For more informationto help you make an educated deci-sion, go to Medicare Interactive atwww.medicareinteractive.org/apda,or call 800 333 4114. n

IS THE NEWMEDICARE DRUGBENEFIT RIGHT

FOR YOU?

the american maintaining hope

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