Most physicians and scientists agreethat the major, irrefutable advance inParkinson's disease research in the pasteight years is the finding that a defectivegene can cause this disease in somefamilies. The second point is that we arenot dealing with a single gene. Rather,multiple genes can causeParkinson's disease, five tobe precise, andcounting. Further, thedefects in each ofthese genes can beat different regionsof the DNA indifferent families.The discovery ofthis multiplicity ofgenetic mutations isnot entirely surprisingsince the disease itself isquite variable clinically,including its wide range of onset age,rate of progression and the predominantdisabling symptoms.

The five Parkinson genes known todate are diverse in many respectsincluding their localization in thehuman genome, their size, proteinstructure and function. Some of theseare inherited in a dominant fashion,which means that if one parent isaffected, 50% of the off-spring would beaffected as well. Dominantly inheritedParkinson genes are alpha-synuclein andLRRK2/dardarin. Others are inheritedrecessively, which means that an affectedindividual must inherit two copies of thedefective gene, one from each parent.The parents could be clinically normalbecause they each have only one copy of

the defective gene and one copy of thenormal gene. Therefore, the parents areconsidered carriers but they do notmanifest the disease. Recessivelyinherited Parkinson genes are Parkin,DJ-1 and PINK1. However, in somecases, parkin mutations can cause disease

even if present as a single copy(dominantly inherited). In

addition to these genesthat are directly linked

to Parkinson's disease,several other geneticvariations in othergenes are thought torepresent suscepti-bility or risk factors

for the disease, muchlike high cholesterol is

a risk factor for heartattacks.

Based on taking historyfrom patients, only about 20% of thecases admit having another familymember with Parkinson's disease. Doesit mean the remainder 80% does nothave a genetic form of the disease, or istheir disease due to an environmentalfactor? Intense research efforts areunderway trying to address thisquestion. But in the case of at least oneof the five known Parkinson genes,LRRK2/dardarin, defects or mutationshave been found in patients with noother affected family members. Inaddition, recessively inherited geneticdefects can occur so infrequently infamilies that individual cases may notknow of another affected relative and thedisease can masquerade as “sporadic” ornon-familial. This is particularly true if

The American Parkinson Disease Association

A Quarterly Newsletter ©2006by The American ParkinsonDisease Association, Inc.

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

Vincent N. GattulloPresident

Joel GerstelExecutive Director

INDEX

Advances in Parkinson’s Disease Research P. 1

President’s Message P. 2

Power of Art and Music P. 3

Q&A P. 4

F.Y.I. P. 5-8

APDA I&R CentersCoordinators P. 9

Salvatore A. Esposito, Sr.Awards P. 9

Parkinson’s DiseaseStages P. 11

Arizona Telemedicine P. 11

A New RequipFormulation P. 12

Information OnParkinson’s Disease P. 12

Main Office:135 Parkinson AvenueStaten Island, NY 103051-800-223-2732www.apdaparkinson.orgapda@apdaparkinson.org

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

F A L L 2 0 0 6 N E W S L E T T E R

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ADVANCES IN PARKINSON'S DISEASE RESEARCHBy M. Maral Mouradian, MD

William Dow Lovett Professor of NeurologyDirector, Center for Neurodegenerative and Neuroimmunologic Diseases

UMDNJ-Robert Wood Johnson Medical School, New Brunswick, NJ

cont. on pg. 10

Dear Reader:

Today's media are saturated with scientific and medicalsound bites. In a recent National Public Radio interviewVincent Kiernan, a senior writer at the Chronicle ofHigher Education, questioned the quality of scientific andmedical stories because reporters and editors rushing forheadlines run stories based upon initial findings in journalsrather than on established results. Add to this the plethoraof medical advertising on all media and it is easy to under-stand the general public's confusion.

Scientific research is an exact and tedious journey. Theromanticized picture of a scientistworking alone in a laboratory into thenight and discovering a cure for somedreaded disease is now pure fiction.Hundreds of thousands of hours as wellas millions of dollars are involved in thesmallest step forward. Years may be spenton deciding if a fruit fly or zebra fish is abetter model to use in a particular study.

APDA knows this first-hand because ithas been a funding partner in everybreakthrough in Parkinson's disease sinceits inception 45 years ago. That is alsowhy we fund research on every level fromsummer internships giving medicalstudents PD research experience tocenters for advanced research.

This commitment to research is also the basis of our multi-year funding of centers for advanced research. Each centerreceives at least $100,000 a year for five years based uponthe progress of its work. Our Scientific Advisory Boardvoted in May to add two new centers, the University ofAlabama and the University of Pittsburgh, to our networkof six other centers at Boston University School ofMedicine, Emory University School of Medicine,

UMDNJ-Robert Wood Johnson Medical School, UCLASchool of Medicine, the University of Virginia MedicalCenter and Washington University Medical Center.

Most centers also host an APDA Information & ReferralCenter, providing seamless service from the most sophisti-cated research to day-to-day patient support andeducation. Referrals to physicians and services from our c-enters have helped people find the right means to accuratediagnosis, appropriate therapeutic plan and immediatesupport program, all in the same institution.

Centers are selected for the number andquality of their research, the credentialsof their team, the quality of theirlaboratories, and their patient-orientedresearch. Four APDA centers (UCLA,Mayo Clinic - Jacksonville, Universityof Virginia and University ofPittsburgh) are also National Instituteof Neurological Disorders and StrokeUdall Centers of Excellence.

APDA is proud -- particularly in thepresent environment of low-prioritygovernment funding for scientificresearch -- of our strong, productiveand growing network encouraging the

work and dedication of the people and institutions thathave provided the amelioration of suffering and will surelyprovide the cure for Parkinson's disease.

Vincent N. Gattullo President

P R E S I D E N T ’ S M E S S A G E

President Vincent Gattullo introduces theyoungest attendee at the annual conference in

Philadelphia last July. Charlotte Louise Weeks isthe daughter of the Atlanta, Ga. Information &Referral Center coordinator Mary Louise Weeks.

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Matching GiftsMany companies and corporations will match your tax-deducible gift and double or triple the amount contributed to

continue the APDA mission “To Ease the Burden - To Find the Cure”. Gifts can be in memory of a loved one orfriend or to celebrate a special occasion. A card is sent to the designated person telling him or her of your generosity

and thoughtfulness.

In order to benefit from the healing properties ofart and music, it is essential to create a frustration free,nurturing environment that is conductive to experimen-tation.

As I present my programs in art and music tofamily caregivers and those with physical or psychologicallimitations, I observe an exciting transformation.

Wonderful changes take place. Atfirst, skeptics approach me with commentsabout their physical disabilities or lack oftalent. Although aware of their concerns, Ireassure them that there are no grades in theclass and I won't be sending any notes home.I tell them to just relax and enjoy the ride.

As the first session begins, the group isrelatively quiet. Stress shows in facial expressionand stiff posture. After a short period of time, the roombegins to warm as the new artists are pleasantly surprised attheir accomplishments. Those attending a music class joinin by moving to the music or singing along. Lyingdormant for perhaps years was the joy of artisticand musical expression. It is as if each personis waking from a deep sleep to face a stimu-lating new day.

For many years I taught watercolorpainting to visually impaired and blind seniors.Many had never painted prior to their loss ofvision and were over 80 years of age.Although willing to give it a try, many in theclass were challenging me to make magic happen. It wasn'tmy doing, but theirs. After a few weeks, these new artistswere looking forward to attending the next session.Although many couldn't see what they hadproduced, they would hold up their work andannounce with a smile to the other participantsthat their work was superior.

Complaints about aches and pains werereplaced by laughter and discussions about artand other interests. One of my students evensaid that her doctor told her he noticed areduction in her blood pressure on days sheattended class. As their self confidence increased,this group proudly entered their paintings into many artshows along with work produced by sighted seniors. Manyin my class won awards over those with vision.

For others, music has healing powers similar to thevisual arts. As I play the piano for those with Alzheimer'sand Parkinson’s disease and others in rehabilitation facil-ities, in addition to the mental stimulation I am aware thattheir stress is reduced as is depression and anxiety.

Detachment is replaced with smiles, singing andclapping. Participation is encouraged through the use ofpercussion instruments, music appreciation, sing-a-long andgame playing. Everyone is happily surprised as just howmuch each knows about musical composition, composersand lyricists. As all the elements and musical theory come

together, the groups will often compose their ownpiece of music. Sharing their delight with theothers enhances socialization and improvescommunication and trust. Shy individuals start tofeel comfortable shouting out the answers toquestions about tunes from Broadway toHollywood.

Both music and art can be appreciated inone of two ways, passively or actively. The passive

appreciation of art and music can be achieved byattending exhibitions or concerts or reading about these artforms. Simply listening to a piece of music can have acalming influence, bring back happy memories or simply be

a distraction from life's stresses. Similarly, using oursense of vision to enjoy an artist's work, look at oldphotographs and develop a greater awareness ofour surroundings is a wonderful way to hold ontoall those special gifts life has to offer.

Actively pursuing visual art and music addsanother dimension to their healing powers.Participating in the creation of a work of art or apiece of music or increasing your knowledge of

topics related to both art and music can enhanceone's self-esteem and feelings of capability through mastery.

Art and music stimulate our minds and improveour memory. Using different media and learning to play a

musical instrument are wonderful ways to increasemental energy and keep us alert. They are idealways to achieve “flow”, or to be so involved in anactivity that you wonder where the time went.

Music and art provide the two mostimportant elements needed to promote lifelongfeelings of well-being. These elements aredistraction and purpose. Each helps remove us

from our day to day worries, our focus on loss oron feelings of isolation. Artistic and musical

expression can provide us with a sense of purpose.Whether we're painting a landscape or participating in anart show, listening to a symphony or singing in a choir, artand music are wonderful ways to encourage us to lookforward to each day with a positive outlook.

Note: This article was originally published in theNew Brunswick, NJ APDA I&R Center Winter 2006Newsletter.

POWER OF ART AND MUSICBy Sandra Frank, CSA

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4

My mother, age 79, was re-cently diagnosed with PD.Her symptoms consist of oc-

casional minor hand shaking whichshe is able to control, stooped posture,shuffle in her walk and small hand-writing, which remains clear and legi-ble. Considering the bad side effects ofCarbidopa/Levodopa medications, isthere any real need for drug therapy atthis stage?

Yes. Even a small dose of car-bidopa/levodopa can preventher from falling. You men-

tioned her posture is stooped and shetakes small steps when walking. Peopledo not die form Parkinson's disease,but from fall-related complicationswhich occur as a consequence of thebalance impairment associated withParkinson's disease.

My doctor has prescribedAzilect for me. The informa-tion provided says to stay on a

low tyramine diet, which is confusing.It says not to take soy products, butevery label of bread and crackers indi-cate they contain soy oil. One sourcesays eating pizza is okay, while anothersays not to consume tomatoes - pizzahas tomato sauce.

Rasagaline (Azilect®) is astronger inhibitor of the en-zyme monoamine-oxidase type

B (MAO-B) than selegiline. There re-mains a possibility that foods rich intyramine, certain antidepressants andnarcotics and other medications maycause high blood pressure when takinga MAO-B inhibitor. In general, it isaged foods and liquids which are richin tyramine. Your pharmacist andphysician can provide you with a listof foods and medicines which could

be dangerous.My father is 81 years old andwas diagnosed in his 70's. The

carbidopa/levodopa he takes makeshim so nauseated that he often choos-es not to take it. Has the Parkinson'spatch been approved?

Nausea is the most commonside effect of levodopa adminis-tration. That is why carbidopa

is given with levodopa - to reduce thenausea and allow more levodopa to getacross the blood-brain barrier. Some-times giving a different preparation oflevodopa-carbidopa such as Parcopa®which is absorbed on the tongue or acontrolled-release levodopa-carbidopatablet helps reduce the nausea. Therotigitine dopamine agonist patchshould be available next year in theUnited States. But a word of cautionregarding the patch- the levodopa anddopamine agonists produce nausea bystimulating an area of the brain whichlies outside of the blood-brain barriercalled the area postrema of the hypo-thalamus. The nausea is not producedby irritating the stomach. In otherwords any medication which eitherproduces dopamine (like levodopa) orstimulates dopamine receptors (likethe dopamine agonists) includingrotigitine patch may produce nausea.The only medication which blocks thearea postrema and does not cross theblood-barrier is doperidone, which isnot available in the United States.

My mother, 85 years old, hashad Parkinson's for about 25years and is now in the end

stage. Both hands are tightly clenchedand are painful. She is being cared forby hospice and no longer sees hermovement disorder specialist. HerSinemet® has been reduced quite a

bit. Is this hand problem due to themedication reduction? Is this a con-

tracture or dystonia?

Many patients have had Parkin-son's disease for over 25 years

and are still functioning very well. I dowant readers to think that this is howthey will be in 25 years. That beingsaid, your mother has dystonia andprobable arthritis contributing to thehand contractures. Botulinum injec-tions using type A (Botox) or type B(Myobloc) will help the painful con-tractures. Extra Sinemet may not helpalthough dopamine agonists, musclerelaxants (clonazepam) and anticholin-gerics (trihexane) might help.

My father has advancingParkinson's disease. His great-est complaint is the

inability to evacuate his bowels. Hehas been prescribed stool softenerswithout relief. He recently had anepisode of transient global amnesia.One of the triggers for this episodecould have been the Valsalva Manueu-ver. Can you suggest any remedies re-garding motility for their bowels?

For constipation eat lots offruits, vegetables, salads, cerealsand drink lots of water. Take a

stool softener like diculsate and a mildstimulant such as Senekot® every day.Take a strong orally administered laxa-tive (if there is no bowel movementthe next day) and you must work frombelow with enemas, suppositories anddisimpaction if there is no bowelmovement on the third day. Do allthese things in consultation with yourfather's personal physician. Transientglobal amnesia may be due to vascularor electrical (seizure) causes and is notrelated to Parkinson's disease.

&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:

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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 for

millions of persons with Parkinson’s andtheir caregivers across the United States.

FALL 2006 VOLUME XIV NO. VIIFYI EDITOR: K.G. Whitford

5

He majored in French and psychologyat the University of Kansas. Then hetaught autistic children, which didpique his interest in neuroscience. Itwas, however, a job opening at EmoryUniversity in Atlanta, Ga., in aHuntington’s disease (HD) researchgroup that presented itself when hewas a “poor struggling doctoralstudent” that hooked him onneurogenetics.

“Honestly, I didn't knowanything about Huntington'sdisease, but this job paid betterthan my teaching assist-antship,” he confesses. Addregular visits to the laboratoryby Marjorie Guthrie, whosehusband -- folk musicianWoody -- had died of HD, andher urging him to consider a careerstudying the disease. It was enough forhim to begin taking every graduategenetics class that was available in theAtlanta academic communityincluding those at Emory, GeorgiaTech and Georgia State University.

In 1980, Dr. Richard Myers arrived atBoston University as an assistantprofessor of neurology at the Schoolof Medicine as well as a lecturer atHarvard Medical School's departmentof neurology, where today he is aconsultant in genetics.

On his arrival north, he beganworking with the team that 13 yearslater would clone the Huntingtongene. Ironically a few days later, hereceived a telephone call from Drs.

Alice Lazzarini and Roger Duvoisin atRobert Wood Johnson MedicalSchool in New Jersey, who wereworking on a project examining thepossible role of genetics in Parkinson'sdisease.

“I was sort of looking around for othergene(s) to clone, so I organized the

group that had cloned the HD geneand we initiated a study into potentialgenes for PD called the Gene PDStudy.” The group has been workingon the project for eight years and hasrecruited the largest sample of familialPD to be studied - approximately 500families. The group is particularlyinterested in possible gene interactionswith pesticide exposure, and thepossibility that several genes mayinteract to create a predisposal to PD.

Though a founding fellow of theAmerican College of MedicalGenetics, published more than 170times in professional journals andauthor of 28 book chapters and non-refereed articles, Dr. Myers is not yourstereotypical cloistered ivory-towergenius. For instance:

Athletics - He swims on a localMaster's team three nights a week andis nationally ranked in the 200-yardbreaststroke. He also swims the 200-yard individual medley, 100-yardbutterfly, and “a couple other events. Ienjoy the adrenaline that you feelwhen your are competing.” Music - He has had a long interest in

blues guitar and with his wifeof 28 years, Carol Anne, whowas a keyboard major inundergraduate school, hasplayed in several bands overthe years. “That practice hasdone a number on myhearing, unfortunately, but Ihave been fortunate to playwith some very talentedmusicians and I wouldn'ttrade that.”

Not only do the Myerses makebeautiful music together, but they alsodance to it. After their youngerdaughter left for college, they took upballroom dancing and are regulars at alocal Fred Astaire studio. “We've reallyenjoyed foxtrot, tango, samba, cha-cha, rumba, and swing together.”

Then, there's the 1963 Corvette StingRay (split window coupe) inheritedfrom his mother-in-law. “It has beenfun to keep it running and to toolaround in that car on Sundayafternoons. It only gets about 12 milesto the gallon, but they didn't worryabout mileage in those days, justspeed, and it really does go! Theydon't make them like that anymore.”

RICHARD H. MYERS, PHDMember of the APDA Scientific Advisory Board …. and Accidental Neurogeneticist

Dr. Richard Myers is a success in thethink tank or the swimming tank.

cont. on page 8

Once a year chapter presidents and I&R coordinatorsfrom the northeast present the New England RegionalSymposium, which is attended by hundreds of PDpatients and their caregivers. This year the two-dayevent, titled “A Partnership for Progress,” was held inSturbridge, Maine. It included lectures, workshops,exhibits and a pre-conference program by award-winning folksinger Grace Griffith, who was diagnosedin 1998 with young onset PD and underwent deepbrain stimulation surgery in March. Among thespeakers were APDA I&R medical directors RobertHamill, MD, (Vermont), Joseph Friedman, MD,(Rhode Island) and Marie Saint Halaire, MD, directorof the APDA Center for Advanced Research at BostonUniversity Medical Center. An inspirational dimensionwas added to this year's event with the creative works ofartists from the New England Parkinson's community.

Maine's I&R coordinator Lillian Scenna reports thatthe third annual Mark Higgins Ride, though limited toone county this year rather the usual four counties, stillraised $1,200. Mark is a former master welder who wasdiagnosed at age 35 and was forced to give up his careeras well as diving for sea scallops, “but has never given upon life,” according to Lillian. “He rode his bike 80 milesa day from Presque Isle and finished in Patten, Maine intwo days.

Music therapy, the arts, and even therapeutic and recre-ational horseback riding were included in the Westcoast of Florida's “Parkinson's Disease Non-MotorAspects and Thinking Outside the Box” symposium inOctober. In St. Petersburg, coordinator Faye Kern puttogether a full half-day event that also included a PDwalker program by Julie Van-Vliet, executive directorof The Gift of Sunshine, and her canine companiongreat dane Grandalf, “Breaking the Freeze.”

Former First Lady Rosalynn Carter was the featuredspeaker at APDA's Las Vegas seminar, Oct. 4. Mrs.Carter heads the Rosalynn Carter Institute forCaregiving, created in 1987 at Georgia SouthwesternState University in Americus, and named in honor of itsdistinguished alumna. She concluded her talk withthese words, "There are only four kinds of people in theworld: those who have been caregivers; those who arecurrently caregivers; those who will be caregivers; andthose who will need caregivers."

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Midwest

6

The Circle Center Support Group of Richmond, Virginia, justlyhonored Ann Sprinks, center, for her 20 years of volunteer group

leadership. Pictured with her are group members Donna Wright andRon Kessler

Las Vegas I&R Center coordinator Jeri Giallanza has a moment topose with Rosalynn Carter following the former First Lady's address.

Two APDA Scientific Board MembersPublish New PD Research

Board Member Honored

Texas pulmonary and critical care fellow at Southwestern Medical Center, Dallas, Dr. Todd Hoopman, chose achallenging way to honor his father, Dick, who wasdiagnosed at age 40 with PD, 22 year ago and,according to his son, “chose to persevere and nevergive up hope for treatment improvements and acure….”Todd entered the Lake Placid (N.Y.) 2006 IronmanTriathlon with the ambitious goal of raising $5,000.He completed the race, a 2.4 mile swim, 112 milebike ride and 26.2 mile run within a 17-hour timelimit, in 12.38 hours and raised close to $15,000 forAPDA's work. Working with Janus Charity Challenge, an onlinefundraising program, Todd far exceeded his initialfinancial goal as well as bring honor to his proud dad.His detailed account of the race with photos is availableat www.quest4iron.blogspot.com

Dallas Physician Honors His Father By Proving HimselfAn Ironman Befitting APDA's Work

Todd with his inspiration, his fatherDick, after the race. Todd Hoopman crosses the finish line.

APDA board member Michael Melnicke, a nursing homeadministrator, ambassador, and chaplain, receivedPeninsula Hospital Center's Outstanding Trustee Awardon Oct. 28, during the Far Rockaway, N.Y. hospital's 99thanniversary ball. Among his many roles, Mr. Melnicke isthe director of the New York and Federal LawEnforcement Foundations, and is an ambassador-at-largefor the nation of Granada.

Dr. Ray Watts, neurology department chairman at theUniversity of Alabama at Birmingham, was a co-author ofa study published in the Archives of Neurology'sSeptember issue addressing a Parkinson's gene mutationand disease severity. APDA, the Department of VeteransAffairs, and an international coalition of pharmaceuticaland governmental health organizations supported thestudy of the recently discovered LRRK2 gene.

Research showing that oxygen-free radicals are damagingproteins in the mitochondria and may be one cause of PDhas been published by Dr. James Bennett, director of theUniversity of Virginia's (UVA) Center for the Study ofNeurodegenerative Diseases, with co-authors from theUniversity of Oregon and UVA, in the 10th edition of theJournal of Neuroscience.

Dr. G. Frederick Wooten, Mary Anderson HarrisonProfessor and Chairman of Neurology at the University ofVirginia, and chairman of APDA's Scientific AdvisoryBoard (SAB), last month added two major awards to hislong list of honors last month.

On Nov. 15, Robert Wood Johnson Medical School namedhim the recipient of its first Roger C. Duvoisin VisitingProfessorship in Movement Disorders, at an awards dinnerin New Brunswick, N.J. In his lecture, “Roger C. Duvoisinand the Quest for the Etiology of Parkinson's Disease,” Dr.Wooten praised the founding chairman of Robert WoodJohnson's APDA Center for Advanced Research andformer SAB chairman for his pioneering work in identi-fying a genetic link as a cause of PD.

At the APDA annual board of directors meeting four dayslater in Staten Island, NY, Dr. Wooten was presented the2006 Fred Springer Award, established in memory ofAPDA's past president of more than 20 years. The award isgiven annually to a physician or scientist who has made amajor contribution toward easing the burden and findingthe cure for PD.

Dr. Wooten is chairman of APDA’s Scientific AdvisoryBoard.

7

November Was a Month of Honors ForSAB Chairman Wooten

8

Dr. Stephen G. Reich, right, co-director of the University of Maryland Parkinson'sDisease and Movement Disorder Center and medical director of APDA's

Baltimore Information & Referral Center,received the 2006 Buddy Levenson Award forEnduring Spirit during the 13th annual MorrisK. Udall Awards Dinner in Washington, D.C.,in September. The event benefits the Parkinson'sAction Network, the advocacy agency for PD.

APDA associate director for scientific andmedical affairs, Michele Popadynec, had anopportunity to chat with Pennsylvania U.S. Senator Arlen Specter, left, after his spiritedspeech on the need for more federal funding for research.

APDA Participates in Udall Dinner

Joel A. Miele, Jr., was elected to theAPDA board of directors during itsannual meeting last month in StatenIsland, N.Y. Mr. Miele, a professional civilengineer, is a partner in MieleAssociates, of Middle Village, Queens,N.Y., an award-winning architectural,

engineering and planning firmfounded in 1929. He is a graduate ofPolytechnic Institute of New York, anda member of numerous professionalorganizations. He is a past president ofthe Queens County Chapter of theNew York Society of ProfessionalEngineers.

An active member of his community,Mr. Miele is also the past presidentand director of the Kiwanis Club ofOzone Park, N.Y., a member/coach ofthe Broad Channel Athletic Club, co-founder and vice president of theJamaica Bay Little League and memberof Community Board 10, Queens.

Joel Miele, Jr. Elected To Board of Directors

Why Consider Taking Part in a Clinical Trial?

There is widespread agreement amongphysicians and people living withParkinson's that clinical studies arenecessary to find better treatments forParkinson's disease (PD). In fact, recentsurveys have shown that 80 percent ofpeople with Parkinson's would participatein a clinical trial if one were available intheir area. Many people with Parkinson's, however,are not aware of the different types ofclinical studies available. For example,often people do not know that while somestudies test specific drugs, others focus onthe potential benefits of exercise or theenvironmental and genetic links to PD.

No matter what type of study onechooses to be involved with, the experiencecan have many benefits. By participating ina clinical study you will: •Increase your knowledge and understand-ing of PD and how it specifically affects you.

•Have access to leading healthcare profes-sionals, quality care and potentially usefultherapies. •Personally contribute to acceleratingdevelopment of treatments for PD.

In the words of Peggy Willocks, aperson living with Parkinson's and clinicaltrial participant: “When I was firstdiagnosed with Parkinson's, I wanted toknow everything about the disease thatthere was to know. Being in a clinical trialhas put me in touch with those who are atthe cutting edge of research inParkinson's.”

To learn more about clinical studiesand review a nationwide list of trials bythat are currently seeking participants visitwww.PDtrials.org or call (800) 801-9484for a free information kit.

APDA is a collaborating organi-zation with PD trials to increase educationand awareness about clinical research.

RICHARD H.MYERS, PHD(cont. from page 5)

Dr. Myers laments thatneither of his twodaughters, who are bothin undergraduate schoolmajoring in English,seems to have interest inbasic science as a career,but he finds comfort inthe possibility that,“perhaps they will writea great mystery novel,which includes forensicclues.”

But, who knows. Lookwhat happened withDad who majored inFrench.

The role of an APDA Informationand Referral Center Coordinator isboth rewarding and multi-faceted.Because of this, the 60 nationalAPDA Coordinators have theunique opportunity to offerpatients, families, health care profes-sionals, and the general communityaccess to the dynamic world of PDinformation and supportive services.In doing so, coordinators provideindividuals with a betterunderstanding of Parkinson's as wellas strategies to effectively cope withthe challenges presented by thisdisease.

APDA Coordinators come from awide variety of backgroundsgenerally from within thetraditional professions of nursing,health care, and social work. Thereare also many coordinators who alsopresent impressive expertise in areassuch as finance, public relations,academics, and community service.The experiences that coordinatorsbring to their APDA roles provide asolid complement to the responsi-bilities they take on at theirindividual Centers. Recognizing theneed to provide novice coordinatorswith a standard yet personalizedorientation to their position, theAPDA, through a generous grantfrom The Medtronic Foundation,established a pilot project in 2004to mentor newly hired coordinators.Cathi Thomas, RN, MSN (Boston,MA), and Donna Diaz, RN, MS(New Haven, CT), designed theCoordinator Orientation andMentoring Program based on manyyears of collective experiencemanaging their Centers in NewEngland.The program is administrated with

the cooperation and commitment ofa number of people. Dr. PaulMaestrone and Michele Popadynec,RN, MPS, from the national officeidentify recently hired APDACoordinators that are opening newcenters or replacing outgoingcoordinators. These orientees aremailed an APDA CoordinatorManual as well as other usefulmaterials and are informed that anexperienced coordinator/mentorwill contact them to make plans tovisit their centers. A pool ofdedicated coordinator/mentors fromvarious regions across the countryhas been selected to assist the newhires. The hands-on orientationprocess consists of a two day site-visit to the Centers by the mentors.Upon completion of the visits, thebond between the new hires andtheir mentors continues via phonecalls, emails, meetings at nationalAPDA conferences, etc. To date, 12new coordinators have beenmentored across the country.

The Coordinator Orientation and Mentoring Program offers newInformation and Referral CenterCoordinators the skills, tools, andprofessional camaraderie to becomeeffective and successful practi-tioners. Through this project, thenetwork of national coordinators isenhanced and strengthened. And,as a bonus outcome, ideas areexchanged, collaboration ispromoted, and friendships areformed. As a result, all coordi-nators, working at the grass rootslevel, help further the APDA'smission “To Ease the Burden andFind the Cure” for Parkinson'sdisease.

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APDA I&R CENTERS COORDINATORSBy Cathy Thomas, RN, MSN, and Donna Diaz, RN, MS

At the 2006 Coordinator'sConference held in Philadelphia,PA the Salvatore A. Esposito, Sr.Awards were presented to theInformation & Referral CenterCoordinators, (left to right) JeanBaker (Burlington, VT), PauletteOlsen (Minneapolis, MN) andLydia Skoog, (Great Falls, MT).The award is presented annually tocoordinators in recognition of theircontributions to APDA and efforts“to ease the burden” of theParkinson's disease patients andtheir families.

Salvatore A. Esposito, Sr.Awards

MOBILITY FORHANDICAPPED PATIENTS

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10

Advances in Parkinson’s Disease Research cont. from page 1

the disease gene manifests symptomslate in life, as is the case withParkinson's disease. These obser-vations suggest that even in theabsence of positive family historyfor Parkinson's disease, a geneticdefect can still be responsible forthe disease in come cases.

Why are these advancesimportant and why do we need tocontinue this line of research? Wehope to get two main dividendsfrom this research that would beof benefit to patients. First,discovering genes helps us under-stand what they normally do tobrain cells and how theirmutations result in nerve celldamage that underlies Parkinson'sdisease. Therefore, knowing thesegenes paves the way for numerousresearch directions to identify thedetailed steps that begin with amutation and culminate in thedisease. This strategy is crucialfor developing new drugs thattarget one or more of these stepswith the goal of blocking orslowing down the spiraling eventsof nerve cell degeneration. As anexample, knowing that excessalpha-synuclein accumulates inthe brains of Parkinson patientsand aggregates in an abnormalmanner led to the recent testingof a vaccine to try to dissolvethese clumps in laboratory mice.Such targeted therapy based onrational scientific principles carriesmany advantages. Even thougheach of the gene defects found todate appears to be responsible fora small minority of cases withParkinson's disease, knowledgegained from these genes can giveus valuable clued for the widerParkinson population. This isbecause all these genes arefunctioning in the same group ofbrain cells and, therefore, even if

we can boost the function of onegene, it may still have an impacton the survival of these cells.Thinking farther into the future,when the time comes that we canidentify the precise cause ofParkinson's disease in anindividual patient, treatment cantheoretically be targeted specifi-cally towards that patient' sunderlying cause. Clearly, we arenot at that stage yet, and currenttreatment decisions are not at allinfluenced by knowledge of anindividual's genetic status.

The second dividend of genediscovery research in general is thetesting of patients in order to

make precise genetic diagnosesand predictions. Testing for twoof the known genes, parkin andPINK1, is now available througha commercial laboratory.Unfortunately, the multiplicity ofthe genes associated with thedisease, the large number ofseparate mutations in a gene thatcan be linked to the disease, andthe rarity of these geneticmutations (except for parkinwhich is mutated in 50% of caseswith young onset recessivelyinherited Parkinson's disease),often make interpretation ofgenetic data difficult if not impos-sible. For example, a negative testof one even two genes neitherexcludes the diagnosis of

Parkinson's disease nor does iteliminate the risk of developing itin the future. In the case ofparkin testing, finding a mutationin one of the two copies alsomakes interpretation difficultsince cases of Parkinson's diseasehave been reported with only onecopy mutation, even though mostparkin mutations are recessive.Where genetic testing can behelpful at present is when a familyis studied as a group, the generesponsible for their disease iseither known or discovered in aresearch laboratory, then predic-tions can be made aboutindividual family members.

Of course, such a situationshould seriously consider ethicalissues, whether or not anindividual wants to know theirgene testing result and how she/hewould handle that information.With more research, only whenthese issues and complexities ofgenetic testing for Parkinson'sdisease are addressed satisfactorily,we can begin to considerpresymptomatic genetic testing,i.e. testing individuals who mightbe at risk of developing thedisease in the future. Such pre-symptomatic testing would behelpful for initiating preventivetherapies if and when suchpreemptive measures becomeavailable. But for now, in theabsence of such proven therapiesand the difficulties of interpretinggenetic results, wide spreadgenetic testing in clinics is notready for prime time.

Note: This article appeared in theDecember 2005 - February 2006Parkinson's Bulletin, The NewBunswick, NJ APDA I&R CenterNewsletter.

1. Signs and symptoms onone side only

2. Symptoms mild

3. Symptoms incon-venient but not disabling

4. Usually presents withtremor of one limb

5. Friends have noticedchanges in posture,locomotion and facialexpression

Parkinson’s Disease Stages

1. Symptoms are bilateral

2. Minimal disability

3. Posture and gait affected

1. Severe symptoms

2. Can still walk to a limitedextent

3. Rigidity and bradykinesia

4. No longer able to live alone

5. Tremor may be less thanearlier stages

1 41. Significant slowing ofbody movements

2. Early impairment ofequilibrium on walking orstanding

3. Generalized dysfunctionthat is moderately severe

3

1. Cachectic stage

2. Invalidism complete

3. Cannot stand or walk

4. Requires constant nursingcare

5

One of the first tools used to classify the clinical condition of a Parkinson patient hasbeen the use of the Hoen and Yahr scale. This scale has five stages here listed:

11

2

The Arizona Telemedicine system is comprised of 38sites spread throughout the state equipped with two waycameras, televisions, and an enhanced sound system.Other similarly equipped “studios” are located within theprison system, and at behavioral health sites.

Some sites, like Banner Good Samaritan MedicalCenter in Phoenix, have multiple Telemedicine studios. Inthat facility, there is a large site within the main hospitaltower; and there is also a camera in a conference room atthe Comprehensive Neuroservices Clinic, where theAPDA I&R Center office is located. The site is currentlyused for PD, ALS, and stroke consultations betweenpatients and the neurologist specialists. The hospitalhopes to expand the usage as the specialists and rural PCPsbecome more experience with this concept.

When doing a PD consult, Dr. Mahant or Dr. Samantacan control the camera at the rural site with a handheld

remote to zoom and focus on specific patient body partsto allow a better observation. They can also swivel thecamera to watch the gait of a walking PD patient, or viewanother person in the room. Some sites have a nurse ormedical assistant at the site during the consult; others haveonly someone to help the patient operate the equipment.The physicians may do 4-5 'remote' PD examinations in amorning.

Some advantages of telemedicine include the elimi-nation of travel costs and provide time savings for thepatient; and a reduction of anxiety in the patient orcaregivers who are often uncomfortable driving in Phoenixor Tucson traffic. The Movement Disorder physicians inTucson or Phoenix can offer their specialized services to awider population of PD patients throughout the state ofArizona, where there are often large distances betweenmedical facilities.

ARIZONA TELEMEDICINEBy Thomas Viviano, Coordinator APDA I&R Center, Phoenix, AZ

12

Information on Parkinson’s DiseaseSingle 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 faxing to 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. Be Active — A suggested exercise program for people with Parkinson’s disease; 25-page booklet (English, German, ltalian)

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

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

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

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

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

9. Aquatic Exercise for Parkinson’s Disease20-page booklet for patients and their families (English)

10. Next Step After your Diagnosis — Finding Information and Support23-page booklet (English)

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

EDUCATIONAL SUPPLEMENTSCaring for the Caregiver: Body, Mind and Spirit; The Family Unit; The FineArt of “Recreating & Socialization” with PD; Medical Management of PD;Vision Problems and PD; Mirapex® in the Treatment of PD; Fatigue inParkinson’s Disease; Healthy Aging, and others.

DVDManaging Parkinson’s — Straight Talk and Honest Hope.Created by the Washington State Chapter of APDA especially for newly diag-nosed Parkinson’s patients and their loved ones. Leading experts explain what PDis and how it is treated, how to deal with symptoms of the disease and some of themedications’ side-effects and how to keep a positive outlook in dealing with it.

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 GLAXOSMITHKLINE.12

New data presented by EASE - PD(efficacy and safety evaluation inParkinson’s Disease) Adjunct Study®at the Annual European Federation ofNeurological Societies Congress, showsthat use of an investigational Requip(r) (ropinirole HCL) extended releasetablet formulation to Parkinson'spatients therapy delayed "off" time byan everage of more than two hours perday when compared to placebo. The24-week study, involved patients withParkinson's disease not adequatelycontrolled with levodopa (L-dopa).The extended-release form of Requipused in the study was a 24 hour dosageformulation not yet approved by theU.S. Food and Drug Administration.Requip, in its immediate-release (IR)formulation, is administered threetimes daily and has been shown to beeffective in treating the motorsymptoms of Parkinson's disease asmonotherapy or in combination withL-dopa. GlaxoSmithKline conductedthis study as part of the clinicaldevelopment program for the investi-gational 24-hour extended-releasetablet dosage formulation of Requip.The new formulation has beendeveloped in collaboration withSkyePharma Plc.In the EASE-PD study, the mostcommon adverse events reported weredyskinesia, nausea, dizziness,somnolence and hallucinations.

A NEW REQUIPFORMULATION DECREASES“OFF” TIME IN PD PATIENTS

Materials concerning the research in thefield of Parkinson’s disease, and answers to

readers’ questions are solely for theinformation of the reader and should not beused for treatment purposes, but rather as asource for discussion with the patient’s health

provider.