SPRING 2007 NEWSLETTER

1 Parkinsons Disease in Women

2 President’s Message

2 Subspecialty Neurologic Externship

3 A Patient’s Experience With ClinicalTrials

4 Q&A

5-8 F.Y.I

9 The Direction of PD Research

11 Metronome Therapy

12 Information on Parkinson’s Disease

INSIDEMain Office:Parkinson Plaza135 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

The American ParkinsonDisease Association

A Quarterly Newsletter ©2007 by The American Parkinson Disease Association, Inc.

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

Vincent N. GattulloPresident

Joel GerstelExecutive Director

Until recently little has been written regarding theeffect that gender has on the development andmanagement of Parkinson's disease (PD). Current

research has focused mainly on the impact that sex hor-mones have on the development of the disease. Less hasbeen written on the impact that Parkinson's disease has onmenstruation, pregnancy and menopause. This article willreview the most recent information on both the affect thatParkinson's disease has on women and the impact that gen-der has on Parkinson's disease.

While PD is usually thought of as a disease of the elderly,approximately 3-5 percent of women diagnosed with thisdisorder are under the age of 50. A large number of thesewomen are still experiencing regular menstrual cycles. Stud-ies that have reviewed the effect of hormone fluctuationsand menstruation on PD have noted an impact of the men-strual cycle on disease control. During menstruationwomen described increasing Parkinson symptoms, decreas-ing medication responsiveness, and increased “off ” time.They also complain of increased fatigue, cramps and heav-ier menstrual flow. This can lead to occasional humiliatingself-care issues because of worsening dexterity. Premenstru-al symptoms of depression, bloating, weight gain and breasttenderness also appear to increase in intensity in womenwho note a variation in their symptom control with men-struation.

Usually these symptoms improve after menstruation, butwill reoccur with each cycle. A small sample of women inthe studies used birth control pills. They reported that theyhad less intense fluctuations in their symptom control, butmore research needs to be done before recommendations

can be made. However, it is important to recognize thatthese fluctuations occur so that women can be prepared forthe changes in control. The use of regular exercise and re-laxation techniques can help decrease symptoms and im-prove coping abilities.

There have been only a limited number of pregnancies inwomen with PD reported. The data have been divided intothe impact that pregnancy has on Parkinson's disease andthe effect that Parkinson's disease has on pregnancy. Thereis an increase in both motor and non-motor symptoms dur-ing pregnancy although it is rarely significant enough toimpact the women's overall level of functioning. Non-mo-tor symptoms (such as fatigue, constipation and depres-sion) seem to improve after delivery, but any progression ofmotor symptoms(rigidity, slowness of movement andtremor) usually persists. While data has shown that increas-ing length of estrogen exposure (the amount of time frompuberty to menopause) decreases the risk of developing PD,increasing amount of time spent pregnant seems to increasethe risk of developing PD. This seems contradictory butmay be due to differences in the effect that estriol (the preg-nancy form of estrogen) and estradiol (the menstrual formof estrogen) have on the disease.

The main concern of pregnant women with PD is the riskof birth defects from antiparkinson's medications. Thedopamine agonists, bromocriptine and pergolide, are con-sidered relatively safe during pregnancy, but make it impos-sible to breast feed because they block milk production.The remainder of the antiparkinson's medications carries a category C rating, meaning that animal studiessuggest some risk but human studies are not available or

PARKINSON'S DISEASE IN WOMENBy Susan M. Rubin, MD

Clinical Instructor and Director of the Women's Neurology Center at Glenbrook Hospital, Glenview, Illinois

(cont. on pg.11)

APDA SPRING 2007

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President’s Message

VINCENT N. GATTULLOPRESIDENT

With calendar years and different fis-cal, religious and cultural years, it issometimes a challenge just to knowwhat time zone you are occupying. AtAPDA we of course, begin the calen-dar year with a resounding “HappyNew Year,” while our fiscal year be-gins Sept. 1 and ends Aug. 31. Witha nod to the Chinese Year of the Pig(which began Feb. 18), and in recog-nition of the Jewish Rosh Hashanahand Christian Advent in Septemberand December respectively, I some-how think of our Parkinson's year asbeginning in April, and as we go topress with this issue, we are in themiddle of celebrating in style.

Each April our awareness and re-search fund-raising efforts grow - atribute to the thousands of chapterpresidents and members, I&R centercoordinators, support groups and vol-unteers who make up our nationalnetwork. Through walk-a-thons;awareness days; local exhibits and re-gional symposia; state, city and town-ship proclamations; and collaborativesupport of our advocacy and fellow PD organizations, APDA is in the forefront of efforts to eradicate thedisease and support those already di-agnosed.

It is also the time - I think appro

priately - that our Scientific Advisory Board convenes to discuss and recom-mend research funding for the com-ing year - fiscal year, that is. These 15eminent physicians and scientists vol-unteer their time and knowledge toassure that the funds raised by ourgrassroots partners are used to theirmost promising potential.

So, April, the month of Dr. JamesParkinson's birthday and the officialParkinson's Disease AwarenessMonth, is a special, high-energy timefor us at APDA, and in the comingmonths we will report the successes ofyour efforts and the research that hasbeen selected to be supported.

On a sad note, I share with you thepassing of John Haugen, APDA treas-urer for the past seven years. John wasa quiet, compassionate and charitableman whose loss will be felt not onlyby APDA but also by the many otherorganizations he served and peoplewhose lives he touched. Our sympa-thies go to his wife, Sophia, and hisfamily.

Vincent N. Gattullo President

SUBSPECIALTYNEUROLOGICEXTERNSHIP

Banner Good Samaritan MedicalCenter in Phoenix, AZ is pleased

to announce an opportunity forphysicians to enhance their knowl-edge of Parkinson's disease. (PD) Thenew Subspecialty Neurologic Extern-ship in Parkinson's disease will be sup-ported by a grant from the ArizonaChapter of the American ParkinsonDisease Association.

The course will allow hands-on ex-perience with patients, as well as pro-vide time for attendees to ask ques-tions of the neurologists and thera-pists who comprise the course faculty.

Trained in Movement Disorders,faculty neurologist Padma Mahant,MD and Johan Samanta, MD seeParkinson's patients in their privatepractice, and at the Good SamaritanNeuroservices Clinic. They are alsothe Medical co-Directors of theAPDA Information & Referral Centerin Phoenix.

According to Dr. Mahant, “This anoutstanding opportunity for physi-cians to fine tune their skills, while ex-periencing the most up to date thera-pies and research. We appreciate thesupport of the APDA and the effortsof their program coordinator, Tom Vi-viano, in helping to attain CME certi-fication for the externship, as well asin developing promotional materialsfor this new teaching tool.”The course is free of charge to U.S. li-censed neurologists, and offers 5.5category 1 CME credits to attendees.Interested professionals can contactTom Viviano at the Phoenix APDAI&R Center by calling 602-239-3542for more information.

By Tom Viviano,Coordinator APDA I&R CenterBanner Good Samaritan MedicalCenter, Phoenix, AZ

Dear Reader,

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A PATIENT’S EXPERIENCEWITH CLINICAL TRIALS

BY JEAN BURNS, Person with PD, PD Advocate for the Parkinson's Action Network and Volunteer for Arizona-APDA,

I was diagnosed with Parkinson'sdisease (PD) in January 2003. I im-mediately tried to find out everythingI could about the disease. I learnedthat it is progressive and incurable,but I kept telling myself there must besomething I could do to fight it. Itwas then that I stumbled across “clin-ical trials” as I searched the internet.

I found a listing of clinical trials forPD and located the ongoing studiesin my area. I focused on one in par-ticular with the potential to be neuro-protective because it had shownpromising results in primates. It hadalso shown to be safe in the initial trialon humans.

The key criterion to join the trialwas to not have begun any PD med-ications. While my doctor had urgedme to start on PD medicines, I hadrefused to take any because my symp-toms were not yet debilitating.

I printed out the trial informationand made an appointment with myneurologist. When I showed him theinfo he read it with interest. He's nev-er heard of the trial, but said that Imet the profile. He asked that if I didsign up for the trial, to let him know.

I found it interesting and alarmingthat he hadn't known anything aboutthe clinical trial. Why hadn't he?Here was a trial with great promise -to slow or stop the progression of PD!If I got the drug, and it worked, I'dhave the opportunity to get it yearsbefore the general population - yearsduring which the progression of thishorrible disease would be slowed down,or even stopped.

So why hadn't my doctor informedme about clinical trials? I thought itshould have been an option for mytreatment. Why had I been the one toinform him?

In 2005, the Advancing Parkinson'sTrials campaign conducted a HarrisPoll to determine why so few peoplewith Parkinson's (PWP) participatein clinical trials and identify whatbarriers there were keeping PWPfrom participating. There were somesurprising results from the poll:

Nearly all (95 percent) of the pa-tients who were surveyed agreed thatclinical trials for Parkinson's are nec-essary to find better treatments, yetonly 11 percent reported their doctorever suggested participating in a trial.

Of those PWP surveyed who wereaware of trials, only 11 percent hadreceived information about trialsfrom their doctors.

About 40 percent of the PWP sur-veyed had learned about trials fromsupport groups, and 27 percent hadlearned about trials from other PWP.

Only 14 percent of primary carephysicians, 21 percent of neurolo-gists, and 18 percent of PWP sur-veyed indicated that they were some-

what or very satisfied with theamount of information availableabout clinical trials for Parkinson'sdisease. Only one percent of PWPsparticipated in clinical trials.

The current number of PWP whoparticipate in clinical trials and stud-ies is far short of the number that re-searchers anticipate will be neededover the next two to three years fornew trials. Because of a growing con-cern within the Parkinson's commu-nity about low levels of participationin trials, PDtrials was created.

PDtrials is an educational effort ini-tiated by a consortium of nationalParkinson's organizations, led by theParkinson's Disease Foundation. Itspurpose is to increase informationand awareness about clinical trials.The Web site, www.Pdtrials.org, is anexcellent source for people with Park-inson's to find current information aboutclinical trials.Volunteer for PDtrials. You may see

me at a local event handing out pam-phlets from PDtrials, and answeringquestions.

There are many types of clinical tri-als for PD:•Neurorestoration: These trials focuson ways to restore the brain cellsdamaged by Parkinson's disease.•Neuroprotection: These trials focuson slowing down or stopping the pro-gression of brain cell loss.•Movement symptoms: These trialsfocus on tremors, rigidity, freezing at-tacks, difficulty walking, loss of finemotor control, and balance prob-lems.

(cont. on page 10)

APDA SPRING 2007

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Questions & Answers

BY ENRICO FAZZINI, DO, PhDAssoc. Prof. NeurologyNew York University, New York, NY,University of Nevada, Las Vegas, NV,N.Y. Institute of Technology, Old Westbury, NY.

Q: Six years ago I was diagnosedwith Parkinson's disease. Currently Iam taking Requip 4 mg, Sinemet25/100 and Comtan 200 mg fourtimes a day. At night before bed Itake one Sinemet 50/200 and oneComtan 200 mg. Recently I haveexperienced shortness of breath anddifficulty breathing during “off ”episodes. I am unable to move atthis time. What should I do?

A: During your “off ” episodes yourmuscles become rigid. This includesthe muscles of your chest wall. Youmay experience restricted breathingwhen this occurs. You need to doone of the following: take your dosescloser together, increase the Requip,add another medication such as se-legiline or rasagiline, and/or paystrict attention to the timing of yourmeals and doses. Consult your doc-tor for the best option consideringyour specific medical history.

Q: I am an 82 year old retiredphysician who has been diagnosedwith Parkinson's disease now for thepast five years. Up until last July mysymptoms were relatively mild, butsuddenly in late July the symptomsbecame severe and progressive. Myneurologist tried several differentcombinations and dosages of med-ications, but none seems to be veryhelpful. I received your winternewsletter this past week and read itthoroughly and found it most inter-esting. My neurologist has me onStalevo 100 mgm six times a day: 7am, 9:30 a.m., noon, 2:30 p.m., 5

p.m., and 7:30 p.m. If I am awakeduring the midnight period, he hasme take Sinemet 25/100. One ofyour articles says that some cases re-quire as often as three hour dosages.I am taking a Stalevo every 21/2

hours. So, does my dosage seem tooclose together? I have mild nausea,which I attribute to the dopamine inthe medication. My most trouble-some symptom is twitching of myleft leg - this may last for a long peri-od. My question is this: since mylast dose of Stalevo is 7:30 p.m. andmy first dose is 7 a.m., there is a gapin medications of almost 12 hours.Surely this causes a low level of med-ication during the night. It seemsthat the dosage should be spread outmore evenly for the 24 hour period.I would appreciate your comment onthis.

A: Neurotransmitters and hormonespeak in the morning upon awaken-ing and slowly decrease during theday. Sleep has a rejuvenative effecton your brain. Medications aredosed in such a way as to mimicwhat occurs naturally. Medicationshelp you to move and you shouldhave this benefit during the daywhen you are active. Excess medica-tion may lead to insomnia, excessivedreaming and even hallucinationsand we, therefore, want to avoid dos-ing late at night. In other words, it iscommon to take Parkinson's diseasemedications during the day and toavoid taking them from the eveninguntil the next morning.

Q: My brother has Parkinson's. Sofar the only noticeable sign to me ishis slowness of movement. He is un-der doctor's care. My question is: Isit possible for PD to cause extremeleg pain? My brother has this whenhe walks or stands for any length oftime. He was in the past told it wasnot related to PD, however, the painis increasing, and there are no an-swers as to what it could be. He justfinished extensive testing with allkinds of specialists at Lahey Clinic inMassachusetts. In the end, they sim-ply said they have no idea what iswrong with him. The only thing heis aware of is that one of his proteincounts is extremely low. He is nowgoing to have that tested.

A: Leg cramps are extremely com-mon in patients with Parkinson'sdisease and often occur on the sameside where the Parkinson's diseasesymptoms started. Young patients(onset less than 50 years old) are es-pecially vulnerable. The crampsconsist of the big toe turning up, thelittle toes turning down and the en-tire foot turning inward. Thecramps may occur during timeswhen medications wear off, but canalso occur when the medications areworking too much. Attempts mustbe made to stabilize the medications(start or increase dopamine agonists,take less immediate-release Sinemet,add Comtan, rasagiline/selegiline,controlled-release Sinemet and addanticholinergics and/or benzodi-azepines. Botox/Myobloc injectionsmay also help.

SPRING 2007 APDA

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F.Y.I.F.Y.I. is a guide to the efforts and successes and recognitionof the hundreds of volunteers and staff who work daily tohelp ease the burden and find a cure for millions of personswith Parkinson’s and their caregivers across the United States.

BY K.G. WHITFORD

The VA'sCommitmentto Veteranswith Parkinson'sDiseaseBY REBECCA MARTINE, APRN, CS, BCChairperson, National VA PD ConsortiumAssociate Director of Education,Philadelphia PADRECC

In 2001, the Department of Veterans Affairs (VA) setupon its mission to revolutionize services for the ap-

proximated 40 thousand veterans afflicted by Parkin-son's disease (PD). The first tier of this campaign fo-cused on the establishment of the Parkinson's DiseaseResearch, Education and Clinical Centers(PADRECCs). Six Centers of Excellence were foundedat the Philadelphia, Richmond, Houston, West Los An-geles, San Francisco, and Portland/Seattle VA MedicalCenters. Each PADRECC is designed to deliver state-of-the art clinical care, pioneering research, and educa-tional programs to an expansive geographic region. In-ternationally recognized movement disorder specialistsand researchers staff these Centers. In 2003, thePADRECCs introduced the National VA Parkinson'sDisease Consortium in an effort to promote PD aware-ness across the universal VA Healthcare System. Thisinitiative has focused on professional networking, men-

torship, and training. The Consortium is currently com-posed of more than 225 members, including physicians,nurses, pharmacists, social workers, physical and occu-pational therapists, and other allied health professionals.Membership is free and encouraged for all VA providers.The Consortium Center Network was subsequentlylaunched in 2006 as a means to broaden the impact ofthe PADRECC mission. These 41 designated Centersgrant veterans convenient access to specialized move-ment disorder services by spanning the length of thecountry. The PADRECCs and Consortium Centersnow create a hub and spoke model of care that is highlyinnovative and effective. All veterans enrolled in the VAHealthcare System are eligible for services at aPADRECC or Consortium Center. Additional infor-mation on these programs, including directions on howto obtain an appointment, can be found at www.parkin-sons.va.gov or by calling 1-800-949-1001 x2749.

PADRECC Coordinating Centers:215-823-5800 x2238415-221-2485Consortium Coordinating Center:215-823-5800 x2238

Ed. note: APDA makes its educational materialsavailable free of charge at all PADRECC centers.

Pergolide (Permax®and generic)is being voluntarily withdrawn in the UnitedStates because of concerns that heart valve disease may result from long-termuse of the drug. This announcement was made by the United States Food andDrug Administration (FDA)on March 29, 2007.This withdrawalwill be grad-ual, allowing patients and physicians to switch patients to another treatment.

Pergolide Withdrawn From US Drug Market

When ground was broken for the LouRuvo Brain Institute in Las Vegas re-cently, APDA executive director Joel

Gerstel was among the invited dignitaries includingthe governor and former governor of Nevada, congress-

men, council-men and LasVegas MayorOscar Good-man.

The world-renowned ar-chitect FrankGehry de-signed the $50million facili-ty focusing onresearch andtreatment of

Alzheimer's, Huntington's and Parkinson's diseases, ALSand memory disorders, and will be the new home ofAPDA's Las Vegas Information & Referral Center whencompleted in 2009. Dr. Zaven Khachaturian, a leadingAlzheimer's authority, will head the Institute, which in-cludes a medical advisory board that includes Nobel Lau-reate, Dr. Paul Greengard, of the Rockefeller Institute, andDr. Ronald Peterson of the Mayo Clinic, who cared forformer president, Ronald Reagan during his last years.

Gehry, whose iconic designs have been described as,“not being able to be ignored - applauded or derided - butnot ignored,” worked 11 months before presenting hisrendering of the 60,000 square foot multi-functionalbuilding last year.

The concept of a center for scientific research began adozen years ago at a dinner to honor Las Vegas business-man and philanthropist Larry Ruvo's dad, Lou Ruvo, whodied of Alzheimer's, and has evolved into one of the city'slargest fundraisers.

Science Daily (SD) recently reportedon the work of Subhojit Roy, MD,PhD, a neuropathologist and research

associate at the University of Pennsylvania, and APDA2006 post-doctoral grant recipient. Dr. Roy's novel video-

APDA SPRING 2007

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imaging system has allowedresearchers at the university to observe the transport of theprotein alpha-Synucelin moving along axons, importantin the understanding of PD. According to SD, “Under-standing this process of axonal transport is important forstudying many neurodegenerative diseases.” In 1990,APDA funded research led to the discovery of alpha-Synucelin at the Robert Wood Johnson Medical Center,New Brunswick, N. J.

Teams from 10 schools across Long Island, N.Y. par-ticipated in Mattituck (N.J.) High School's varsitywrestling team's “Takedown Parkinson's Wrestling Tour-nament” recently. Coach John Roslak has been sponsor-ing the event for several years and – with his mom, whohad PD and is the annual walk-a-thon's top fundraiser, –has raised thousands of dollars for PD research.

Linda O'Connor, Cedars-SinaiMedical Center (Los Angeles) I&Rcoordinator was featured in an inter-

view about serving PD patients in nail salons. Linda'shands-on advice appeared in “Nailpro” magazine's Febru-ary article, “What You Should Know About Parkinson'sDisease to Best Serve Your Clients”.

The biggest question for those attending the SeattleChapter’s fifth annual Magic of Hope auction/dinner waswhich of the many items to bid on. On the auctioneersblock at the St. Demetrios Orthodox Greek Church waseverything from a seven-day cruise to a night patrollingSeattle with the Police K-9 Division, with a country clubgolfing day, a three-day resort getaway, and a privatewine/hors d’oeuvres tasting for 45 of your closest friends.

A University of Wisconsin, Madison,theatre class and Lee Silvers Voice Ther-apy therapist Sherri Sleazy have worked

together to produce 'Parkinson's Playhouse," a two-actplay addressing the communications problems faced byPD patients. Coordinator Jessica Hahn is seeking fundingto have the two-hour, “no-holds-barred” production,which includes an audience-participation discussion,videotaped and converted to a DVD. After its successfulfirst night at the university, there is discussion of taking iton the road throughout the state.

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APDA executive director, Joel Gerstel, had a mo-ment to chat with world-renowned architect

Frank Gehry at the Las Vegas groundbreaking.

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F.Y.I.

A MESSAGE FROM THE APDANATIONAL YOUNG ONSET

CENTER DIRECTOR

It is my pleasure to join APDA asthe director of the new Young OnsetCenter.

I have a somewhat unusual combi-nation of education, training and ex-perience, all of which have preparedme for exactly this role. I am a Li-censed Clinical Social Worker withmore than 10 years experience work-ing with individuals of all ages andtheir families. Before receiving myMaster of Social Work degree, Iearned a Bachelor of Arts degree incommunications and worked in ad-vertising and marketing for eightyears.

My professional experience will behelpful in identifying and understand-ing the particular concerns youngpeople with PD face and also in devel-oping new programs and services thatwill address those needs. It is my ob-jective that every person who receivesa young onset PD diagnosis will at thesame time be told about our Centerand leave the physician's office know-ing he or she is not alone.

Please keep in mind that anyone,anywhere is encouraged to contact us.If we are not the appropriate place, wewill connect you with the APDA In-formation & Referral Center in yourregion. In fact, that is one of our cen-ter's primary functions - to connectpeople with local resources.

I'm looking forward to your call. Julie Sacks, MSW, LCSW

877-223-3801

Because of the growthand identified needs ofthe young onset Parkin-son's disease (PD) pa-tients, the AmericanParkinson Disease Asso-ciation (APDA) has cre-ated a national youngonset center at Glen-brook Hospital, Glen-view, Illinois, to increasenational awareness ofthe many services avail-able to the younger PDpopulation. Julie Sacks,MSW, LCSW, is the di-rector.

APDA opened thecountry's first YoungOnset Information &Referral (I&R) Centerin 1991 in Santa Maria,Calif. Arlette Johnson, aParkinson's patient,served as its coordinator

until her retirementfour years later. Duringthat time, she initiatedprograms and servicesspecifically for youngerPD patients and theirfamilies including thefirst dedicated PDyoung onset Web site.In 1994, the center wasrelocated at GlenbrookHospital and named theArlette Johnson APDAYoung Onset I&R Cen-ter with Michael Rezak,MD, PhD, its medicaldirector and SusanReese, RN, LCSW, itspart-time coordinator.

Dr. Rezak, who is thedirector of the Move-ment Disorders Centerand Functional Neuro-surgery Program atEvanston Northwestern

Healthcare, will serve asthe new center's med-ical director.

Ms. Sacks has exten-sive clinical and admin-istrative experience as asocial worker and hassuccessfully developedprograms and supportfor their growth. Shealso brings experience inadvertising and market-ing and will use bothwith current technologyto increase awareness ofPD and its effects onyounger people. She hassupervised master's levelsocial workers and hasthe professional experi-ence to understand andsupport the psychoso-cial challenges youngpeople with PD mayface.

APDA OPENS NATIONAL CENTER FOR YOUNG ONSET

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LONG TERM CARE IS A CONCERN OF PD PATIENTS

While there are many technical definitions, long-term care is basi-cally the help needed to get through the day for an extended periodof time – months and even years. It can include skilled medical carebut more often involves help with daily activities such as walking,toileting, bathing, eating and dressing.

Long-term care can be given at home, in the community, in con-gregate settings, and in nursing homes, and more than 40 percent ofpeople receiving such care in this country are under age 65. Ameri-cans spend more than $123 billion each year in formal long-termcare, a number that is increasing by $2.6 billion every year.

Today, publicly available options for funding long-term care forParkinson's disease patients are severely limited. Very few privatehealth insurance plans cover it and Medicare does not cover mostnursing-home stays and pays less than 2 percent of long-term careexpenses. Medicaid is part of the welfare system, and is only avail-able after spending down your assets to state-required levels.

For information about long-term care insurance available for pa-tients with Parkinson's disease diagnosis contact apda@apda-parkinson.org.

F.Y.I.

TWO NEW CENTERS BRING I&RNETWORK TO 62

APDA's Information & Referral Centernetwork grew to 62 centers recently withthe opening of newcenters at the Uni-versity of Kentucky (UK) School ofMedicine, Lexington, and the Universityof Texas Health Center, Tyler. JohnSlevin, MD, director of the UK school'smovement disorder clinic, is the medicaldirector, and Renee Wagner, RN, is thecoordinator. The Texas center is beingdirected by George Plotkin, MD, PhD,with Kelly Pierson, a clinical trial re-search specialist, coordinator.

In St. Louis, Deborah Guyer, a certi-fied speech pathologist and formerAPDA St. Louis chapter member, has re-placed Jan Meyers as I&R Center coor-dinator at Washington University.

If there are people unaware of thechallenges and heartaches that Parkin-son’s disease brings to a family, it is notthe fault of APDA chapters, I&R cen-ters, support groups and volunteers.

Parkinson’s Disease AwarenessMonth was filled with APDA activi-ties from coast to coast, from Maine’sfifth annual Parkinson’s AwarenessConference in South Portland to a 5Kwalk and fun run in San Diego.

Connecticut ‘s Lunch & LectureSeries featured “The Ten Command-ments of Coping with Parkinson’s Dis-ease,” and “Parkinson Disease Management & Research Update” with lunch in between.

Seven governors proclaimed April Parkinson’s Awareness Month in their states: Mike Beebe (Ark.); Edward Ren-dell (Pa.); Jodi Rell (Conn.); Charlie Crist (Fla.); George Perdue (Ga.); Deval Patrick (Mass.) and Tim Pawlenty(Minn.). Chicago (Ill.) Mayor Richard Daly, Tulsa (Okla.) Mayor Kathy Taylo, and Little Rock (Ark.) Mayor JimDayley issued city proclamations. In addition dozens of townships, boroughs, and congressional proclamationsacross the country were issued and reported in local media.

IS FOR AWARENESS IN THE APDA ALPHABET

What a difference a year makes. Georgia coordinator Mary Louise Weeks believes strongly intaking her child to work, making Charlotte Louise Weeks probably the youngest person to

have had two visits with a governor before her first birthday.

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The last decade in Parkinson'sdisease (PD) research hasseen a major shift in emphasis

from the study of ways to amelioratesymptoms toward ways in which toprotect neurons from early death. Inorder to protect neurons we mustfirst understand what are the causesof cell death in Parkinson's disease.

There are two major candidatesfor this causative role, genetic factorsand perhaps environmental factors.

Genetic factors are so far morefirmly established as causes con-tributing to the onset of Parkinson'sdisease. To date there are mutationsin five genes that are known to be as-sociated with PD. These genes are al-pha synuclein, Parkins, PINK 1, DJ-1, and LRRK-2.

Mutations in these genes, howev-er, account for only a small numberof patients and we must find otherfactors that play a role in the majori-ty of patients.

It is likely that the most importantgene found so far is the alpha synu-clein gene. When one looks underthe microscope at the brains of pa-tients with Parkinson's disease, thehallmark of the pathology is a cell

marker called the Lewy body. TheseLewy bodies contain large amountsof the protein called alpha-synucleineven in patients who do not have amutation in the alpha synuclein gene.It looks as if aggregates or clumps ofalpha-synclein (termed protofibrils)may be toxic and responsible for celldeath in Parkinson's disease. Parkin-son's disease can therefore be consid-ered a synucleinopathy, that is a dis-ease of abnormal accumulation of al-pha synuclein in the brain. This accu-mulation appears to the central defectthat causes Parkinson's disease in mostpatients. Looking at ways to decreasealpha synuclein protofibrils in PDpatients may be the key to neuropro-tection and to slowing the progressionof the disease.

A number of different mecha-nisms may be playing a role in celldegeneration by affecting alpha-synu-clein.

1. There is a mechanism of cell de-generation that has been described as“programmed cell death,” also calledapoptosis. Aggregates of alpha-synu-clein directly and indirectly increasecell death by apoptosis. By using drugsthat interrupt the pathway that leads

to this type of cell death, we might beable to achieve neuroprotection.

2.The parts of cells called mitochon-dria (which produce the energy todrive the cell) have decreased activityin the brains of patients with Parkin-son's disease. The specific part of themitochondria that is affected is calledcomplex I. Decreased activity of mi-tochondria leads to increased aggre-gates of alpha synuclein and therebyincreases cell death rates by apoptosis.Drugs that can increase complex I ac-tivity may slow the progression ofParkinson's disease by keeping theenergy metabolism at a normal rate.They are the basis for directing newtreatments.

3. Biochemical reactions calledoxidation reactions have been shownto increase the rate of cell death bycausing increased aggregation of al-pha synuclein in the parts of thebrain involved in Parkinson's disease.Drugs that reverse or slow these oxi-dation reactions may therefore slowthe progression of the disease. Suchdrugs (called antioxidants) are avail-able but so far none has been proveneffective in slowing the progression ofdisease.

THE DIRECTIONOF PARKINSON’S

DISEASE RESEARCHBY JACOB SAGE, MD,

DIRECTOR, APDA CENTER FORADVANCED PARKINSON'S RESEARCH

UMDNJ-RWJMSNEW BRUNSWICK, NJ

(cont. on page 10)

APDA is the country's largest grass roots organization serving the Parkinson's community. It is a 501©(3) not-for-profit organization and receives no governmental or public funding. Each year APDA contributes more than $2.5 mil-lion for research and more than $2.5 million for direct patient and caregiver support through the generous supportof individual and corporate donations. You can be a partner in easing the burden and finding a cure with a tax-de-ductible gift to the American Parkinson Disease Association, Inc. Call 1-800-223-2732 for details.

APDA Is America's Largest Grass Roots PD Organization

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•Non-movement symptoms: These fa-tigue, depression, difficulty in speaking,and loss of facial expression, visionchanges, and a diminished sense ofsmell. •Genetic: These trials investigate possi-ble hereditary connections to the diseaseand often take place over long periods oftime.

There are always new clinical trialsstarting. If you check www.Pdtrials.organd don't find one today that is a matchfor you, check back in a couple ofmonths. There may be something newby then. Don't give up! Remember thatno new treatment (and no cure) will beavailable until it has completed clinicaltrials. Please consider joining one.

My own clinical trial story unfortu-nately ended in disappointment. Afterhaving participated for two years, the tri-al was abruptly halted because it hadfailed. The people who got the drug ac-tually deteriorated slightly faster thanthe people on the placebo! (I learnedthat, I had received the lowest dose of thedrug rather than the placebo.)

These results illustrate there is no guar-antee about positive results when youjoin a clinical trial. Even though I haddone extensive research prior to joiningthe trial, learning the drug had showngreat promise-it failed.

Regardless of the trial's failure, I amphilosophical about my participation. Ifthe drug had worked as hoped, I'd havebeen jubilant, as would have been mycomrades in the trial. As it turned out, Iwas glad I had been taking the lowestdose. In the end, the experience won'tkeep me from joining future trials. I'lldo the same extensive research and takemy chances.I hope to see you soon to talk to youabout PDtrials. Adapted from the APDA Arizona ChapterWinter Newsletter, January 2007

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4. There are increased depositsof iron in the brains of patientswith Parkinson's disease. Heavymetals are known to increase theaggregation of alpha-synuclein. Find-ing ways to decrease brain iron dep-osition, therefore, may slow the celldeath rate.

5. Dopamine itself may increaseaggregation of alpha-synuclein and,therefore, finding more effectiveways to increase dopamine levels inthe brain may be helpful in slowingdisease progression. Researchers arebeginning to focus on the fact thatPD is not just a disease of thedopamine system of neurons but isa widespread disease involvingmany neuronal groups and systemsin the brain. Clinicians have beenacutely aware of this fact from thebeginning. Patients with PD notonly have motor difficulties butalso may have significant problemswith depression, concentration,and other cognitive functions suchas decision making processes, con-stipation, autonomic functioningin areas as wide apart as blood pres-sure control and sexual function,skin changes, sleep and more. Theemphasis, therefore, is now shiftingto finding causes of cell death ingeneral and not just looking at celldeath in dopamine producing neu-rons. Some of the other gene mu-tations listed above may play a part

in a more widespread role of keep-ing cells alive or causing them todie. There is some evidence for ex-ample that the DJ-1 gene may becrucial in keeping cells from enter-ing the death pathway (apoptosis)and mutations in the gene maysome how facilitate entry into thecell death pathway and in this waymay contribute to the onset of PD.How might this knowledge of genemutations be put to use in treatingPD? Recall that genes produce pro-teins and abnormal genes produceabnormal proteins which may in-fluence events in many cell in thebrain. Even if we are unable to fixthe gene defect itself, we might beable to use drugs or other strategiesto counter-effect the abnormal pro-tein. For example, if the effect of anabnormal protein were to decreaseenergy efficiency in brain cells, wecould possible devise ways to getaround the defect and increase en-ergy metabolism and thereby keepthose cell alive. In fact, one possibleuse of stem cells might be to pro-vide agents that bathe brain cellswith the necessary growth factorsto keep them alive. This strategywould have a more generalizedbeneficial effect than would thestrategy of merely providing cell re-placement for cells already lost.Based on some of the argumentspresented here, there are severalneuroprotection studies currentlyin progress and more beingplanned. These studies enroll pa-tients in the early stages of diseasebut if successful they will undoubt-edly help all patients with PD.

Adapted from the Summer 2006Newsletter of the APDA NewBrunswick, NJ I&R Center Newsletter.

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APDA SPRING 2007

THE DIRECTION OF PARKINSON DISEASE RESEARCH A PATIENT’S EXPERIENCE

SPRING 2007 APDA

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Interactive Metronome Therapy(IM) is a new technology used as atreatment tool for Parkinson's pa-tients, but it is actually based on anold concept - the metronome. For anyof you who have ever played piano,you know that the metronome is a de-vice used to keep time-tick-tock, tick-tock… if you think about it, doingthe same task over and over again at aperfectly consistent interval requires alot of concentration and energy. WithInteractive Metronome therapy, aParkinson's patient is trained to dojust that - to keep time by performingrepetitive tasks such as clapping theirhands or stomping their foot at regu-lar intervals. The IM signals the pa-tients with a cowbell-like ring to letthem know if they are either fallingbehind or going too fast in their task.While these tasks might appear sim-plistic, the Interactive Metronomemeasures accuracy down to the mil-

lisecond and it is surprising how chal-lenging it really is to achieve a perfect score!

The goal of Interactive Metronometherapy is to improve symptoms ofParkinson's patients struggling withissues such as rate of processing, at-tention, impulsivity, speech, and cog-nition. There appears to be a positivecorrelation between the increased ac-curacy of patients in their IM therapysessions and their improved Parkin-son's symptoms.

Michael Lobell, MD, a Tucsonphysician and Parkinson's patient cur-rently undergoing IM therapy, atteststo its efficacy with diminishing hisParkinson's symptoms. He said, “Thereason that I came to HealthSouthinitially was for impulsivity. Since Ibegan my speech therapy, my entireoutlook has changed. My impulsivityis better and my speech patterns areslower. The Interactive Metronomeseems to be an effective and important

tool.”While IM therapy is relatively new,

it is gaining popularity worldwide.There are more than 2,000 IM-certi-fied therapists in more than 1,500clinics, hospitals and universities inthe U.S. and abroad. It has also re-ceived media attention by the CBSEarly Show. CNN News, and USNews and World Report. The Interac-tive Metronome therapy is an optionfor patients who are seeking new waysto complement their existing treat-ment regimen without adding newmedications.

A typical course of treatment withIM is 10-12 sessions and each sessionwill last approximately one hour.

For further information on wherethe therapy is available, call 877-994-6776, ext. 230.

Adapted from the January 2007Winter Newsletter of the APDA Ari-zona Chapter

METRONOME THERAPY-AN EFFECTIVE TREATMENTTOOL FOR PARKINSON'S PATIENTSBY KRISTINE BROWN,HealthSouth Rehabilitation Hospitalof Southern Arizona, Tucson, Arizona

have not confirmed that risk. The data on levodopa with orwithout carbidopa suggest some risk in animal studies, butthere were no reported birth defects in newborns in thesmall number of pregnancies reviewed. Amantadine is theonly antiparkinson's medication that has resulted in heartmalformations in babies with first trimester exposure.There were no reports of major malformations with the useof Selegiline (Eldepryl) and there are data available so far onthe COMT inhibitors.

Women with PD do not have trouble with fertility butcan have changes in self-image that lead to social avoidanceand difficulty with sexual intimacy. This can lead to de-creased pregnancy rates and sexual dysfunction. Women

who do become pregnant must then face the challenge ofcaring for a child postpartum. The American ParkinsonDisease Association offers resources and helpful staff to pro-vide information and support regarding pregnancy and par-enting issues related to PD. Establishing a support systemand planning are critical to being an effective parent, espe-cially if you have a progressive disease.

It has been noted that women are more likely to developParkinson's disease later than men and usually when theyare postmenopausal. Basic science research with rats hasshown that there is an increase in the slow decline indopamine producing cells coincident with menopause. Useof hormone replacement in rats that have had their ovaries

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Single copies of the following publications may be obtained free of charge bywriting to the national APDA office or by calling the toll-free number 1-800-223-2732 or faxing to 1-718-981-4399, or contacting any of the 62 APDAInformation and Referral Centers.

EDUCATIONAL BOOKLETS1. Basic Information about Parkinson’s Disease

Brochure (English, Chinese, Spanish, Portuguese, Russian)2. Parkinson’s Disease Handbook

Symptoms, causes, treatment; 40-page booklet (English, German,Italian)

3. Be Active - A suggested exercise program for people with Parkinson’s disease; 25-page booklet (English)

4. Be Independent- Equipment and suggestions for daily livingactivities; 22-page booklet (English)

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

6. Good Nutrition - 20-page booklet (English)7. Young Parkinson’s Handbook - 78-page booklet (English)8. How to Start a Parkinson’s Disease Support Group -

24-page booklet (English, Italian)9. Aquatic Exercise for Parkinson’s Disease - 20-page booklet (English) 10. Next Step After your Diagnosis - 23-page booklet (English)

Finding information and support11. 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; TheFine Art of “Recreation & Socialization” with PD; Medical Managementof PD; Vision Problems and PD; Treatment of PD; Fatigue in PD;Healthy Aging.

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 whatPD is and how it is treated, how to deal with symptoms of the disease, someof the medications’ side-effects and how to keep a positive outlook in dealingwith it.

APDA WORLDWIDE WEB SITEwww.apdaparkinson.org for PD I&R Centers, Chapters, SupportGroups, education and information material, meeting dates, publica-tions, medical abstracts, clinical trials and research application guidelines.

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 NOVARTIS PHARMACEUTICALS.

Materials concerning the research in the field of Parkinson’s disease, and answers to readers’ questions are solely for the information ofthe reader and should not be used for treatment purposes, but rather as a source for discussion with the patient’s health provider.

removed seems to reverse that increase. How-ever, studies in women have had contradicto-ry results showing only partial or no benefitfrom hormone replacement. This may be thetiming of the hormone replacement, since theanimal studies have shown a difference in ben-efit based on the timing of the hormone sup-plement. Rats who received hormone supple-ments within 10 days of having their ovariesremoved had no increase in the loss ofdopamine producing cells, while rats that didnot receive estrogen until 30 days later didlose cells more rapidly. They did not see anybenefit from the supplements in the rats whoreceived them later.

The few studies that have compared the im-pact of hormone replacement therapy on dis-ease progression have been mildly positive.Women on hormone replacement reportedmore “on” time and lower UPDRS scores thannon-estrogen users. Unfortunately the num-ber of women studied is too low to supportthe use of hormone replacement in womenwith Parkinson's disease at this time. The ben-efits still need to be weighed against the risksrecently reported in the Women's Health Ini-tiative study.

In conclusion, we are beginning to under-stand the impact of sex hormones on the de-velopment and progression of Parkinson's dis-ease. Recent studies suggest that there is an in-verse relationship between lifetime estrogenexposure and the risk of developing Parkin-son's disease. It has also been shown that fluc-tuations in hormone levels will result inchanges in disease control and result in theneed for changes in symptom managementduring menstruation, pregnancy andmenopause. Hopefully, we will gain furtherunderstanding in the future which will lead tonew treatment options for women withParkinson's disease.Adapted from the Winter 2005 issue of theAPDA Young Onset Information & ReferralCenter Newsletter in Glenview, Illinois.

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Information on Parkinson’s Disease