The American ParkinsonDisease Association (APDA)was officially recognized as a

not-for-profit organization by the

State of New York in 1964. APDA isunique in its dual mission of provid-ing information, education and sup-port directly to Parkinson's patientsand their caregivers, and also as amajor contributor to pioneeringParkinson's disease (PD) research.

Since its inception, APDA hasbeen a funding partner in every sci-entific breakthrough in understand-ing the cause and progress towards acure for PD. Included in thatresearch was the pioneering work ofDr. Roger C. Duvoisin, a chairmanof the APDA Scientific AdvisoryBoard (SAB) that pinpointed thelocation of a gene responsible for PDat Robert Wood Johnson MedicalSchool, New Jersey, in 1997.

APDA's funding methodology isdriven by its SAB, composed by 16of the country's leading physiciansand scientists, experts in Parkinson'sdisease and movement disorderresearch diagnosis and treatment.Now chaired by G. FrederickWooten, MD, department of neurol-ogy at the University of VirginiaMedical Center, the board includesrepresentation from leading researchand medical centers across the coun-try including the UCLA MedicalSchool, Emory University School ofMedicine, the Mayo ClinicJacksonville, the University ofWisconsin, the UMDNJ/ RobertWood Johnson Medical Center,Boston University School of

Medicine, Washington University,Johns Hopkins Medical School, theUniversity of Alabama and theUniversity of Chicago. The board’scomposition is designed to representexpertise in all areas of PD researchproviding a knowledgeable panel toevaluate the more than 100 grantapplications submitted for fundingeach year.

APDA support is offered toencourage research at all levels. NineCenters for Advanced Research acrossthe United States (Boston UniversitySchool of Medicine, EmoryUniversity School of Medicine,UCLA School of Medicine,UMDNJ-Robert Wood JohnsonMedical School, the University ofVirginia Medical Center, theUniversity of Pittsburgh, theUniversity of Chicago, the Universityof Alabama, and the WashingtonUniversity Medical Center) receive amulti-year $125,000 annual award,and their scientific activity isreviewed and evaluated at the SABmeeting each spring.

The George C. Cotzias, MDMemorial Fellowship, named after apathfinder in the pharmacologicalexploration of brain functions and inthe treatment of PD with levodopa, isa three-year annual award of $80,000to assist promising young neurolo-gists in establishing careers inresearch, teaching and clinical servic-es relevant to the cause, prevention,

1

SPRING 2008 NEWSLETTER

The American ParkinsonDisease Association

A Quarterly Newsletter by The American Parkinson Disease Association, Inc. ©2008

1 The APDA Inc., 44 Years Later

2 President’s Message

4 Q&A

5 F.Y.I.

9 Senior Living Options

10 Weight Loss in Parkinson’s Disease

11 Sleep and Parkinson’s Disease

12 Educational Material

INDEX

National HeadquartersParkinson Plaza135 Parkinson AvenueStaten Island, N.Y. 103051-800-223-2732www.apdaparkinson.orgapda@apdaparkinson.org

National Young Onset CenterGlenbrook Hospital2100 Pfingsten Rd.Glenview, Ill. 600261-877-223-3801www.youngparkinsons.orgapda@youngparkinsons.org

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

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

Joel GerstelExecutive Director

Vincent N. GattulloPresident

SPRING 2008 APDA

The American Parkinson Disease Association, Inc.

44 YEARS LATER

cont. on page 3

APDA SPRING 2008

2

President’s Message

Dear Reader:

In the worst of times/bestof times scenario, we are certain-ly not at either extreme, but atleast economically, leaningtoward the former. No one ishappy about lean economictimes, and least of all not-for-profit organizations, which

depend upon the generosity of others. To make matters worse, in today's not-for-profit area

are the stories of abuse in some organizations. While a verysmall minority, these instances of fraud and downrighttheft violate the public's trust and make the headlines thattaint-by-association the good work done by the many.

Americans gave $295 billion to philanthropy in 2006,2.3 percent of the gross national product, and most ofthose gifts, Bill and Melinda Gates and Warren Buffett notwithstanding, came in small donations. Americans aregenerous when they can afford to be, but today's WallStreet news and the realities at the supermarket and gaspump are already beginning to affect the amount of dis-posable income in most families.

Because APDA receives no government or publicfunding and is dependent upon the generosity of individ-uals, and to a lesser extent, corporations and foundations,we are particularly sensitive to the moral and economic

phenomena of our times. We wear our Better Business Bureau and other voluntary and regulatory credits asbadges of honor.

Regular reports to our contributors and accountingcompliance procedures through our board of directors cre-ate transparency and a testimony to our integrity. Westrive every day to meet our mission to: “Ease the Burden - Find the Cure” for Parkinson's disease.

Now especially, we want all our supporters to knowthat we are aware of the sacrifice you may be making tocontinue your generosity. APDA is always appreciative ofevery gift whatever its form a multi-million dollar estate,a $10 dollar memorial for a loved one, a charitable giftannuity, or the $5 bill that recently came to our nationalheadquarters. The slightly yellowed envelope contained ashakily written note: “I know this isn't much, but I wantto have a part in finding the cure for this terrible disease.”

It is based upon that kind of generosity and hope thatwe weather the present storm and look forward to the bestof times ahead.

Vincent N. Gattullo President

The March issue of the Physical TherapyJournal reported the results of an APDA-funded research grant. Dr. Leland Dibble,who was awarded a research grant, publishedhis findings with Dr. K. Bo Foreman andphysical therapists Jesse Christensen and D.James Ballard titled, “Diagnosis of Fall Riskin Parkinson (sic) Disease: An Analysis ofIndividual and Collective Clinical BalanceTest Interpretation.” The study comparedthe accuracy of PD-fall/risk-diagnosis usingone test result rather than an interpretationbased on a collection of several tests results.

APDA GRANT’S FINDINGSPUBLISHED

APDA FUNDING SUPPORTS TWOSTATES’ PD REGISTRIES

Washington has approved a state Parkinson’s disease reg-istry. The one-year project initiated last month is being fund-ed by a $275,000 appropriation and is being administered bythe department of health.

The registry is an extension of a voluntary statewide data-base directed jointly by the University of Washington and theVA Puget Sound Hospital in Seattle, and partly funded by theAPDA’s state of Washington Chapter.

APDA is committed to the collection of such data, whichare vital parts of many scientific research studies. In collabora-tion with the Michael J. Fox Foundation, APDA is presentlysupporting the country’s first state-supported registry inNebraska, which after two years and valuable data collected,was suspended because of a shortage of state monies.

SPRING 2008 APDA

3

diagnosis and treatment of PD andrelated neurological movement disor-ders. It is considered APDA's mostprestigious individual award.

Established scientists affiliatedwith research or academic institutionsand presently not working on PDresearch are eligible for the Roger C.Duvoisin, MD Research Grant. Thegrant carries a two-year, $80,000annual award.

Other funding is available asresearch grants ($50,000 for one year)for young investigators to pursueresearch in PD; post-doctoralresearch fellowships ($35,000 for oneyear) available to post-doctoral scien-tists whose research training holdspromise into new insights in patho-physiology, etiology and/or treatmentof PD; and medical students summerfellowships designed to provide astipend to medical students to per-form supervised laboratory or clinicalresearch in PD. The fellowship is$4,000.

At its meeting in May 2007, theSAB recommended more than $3.5million in grants, which was unani-mously approved by the executivecommittee of the national board ofdirectors.

Equally important and uniqueamong U.S. PD organizations is theAPDA mission to support and edu-cate the country's 1.5 millions withParkinson's disease and their care-givers. Recognizing the devastatingeffects of the illness upon the patientand the family, a support programwas launched to motivate patients inmaximizing their strengths, minimiz-ing impediments and achieving andmaintaining their full potential for aslong as possible.

Through a network of chapters,which raise awareness and funds;Information & Referral centers, each

staffed with a medical director and acoordinator; and more than 1000support groups, APDA provides acomprehensive support and educa-tional system for patients and care-givers. There are presently 56 chap-ters and 62 I&R Centers located inmajor healthcare and academic facili-ties across the country, making it thelargest grassroots PD organization inthe United States.

In 2007, APDA opened thecountry's first full-time nationalyoung onset center to serve theunique challenges of young peoplefaced with the progressive, degenera-tive disease. The center's director isJulie Sacks, a clinical social workerwith more than a decade of experi-ence working with individuals of allages and their families. The center islocated in the Chicago, Illinois areaand serves the entire country. Its Website is www.youngparkinsons.org.

APDA also maintains a dedicatedI&R Center for U.S. Armed Forcesveterans and their families. Located inReno, Nevada, the center's mission isto disseminate information aboutservices available to veterans with PDin their home communities and toserve as a resource for informationabout government benefits availablefor Parkinson's disease patients.

Education is a primary functionof the organization and is providedthrough a quarterly newsletter, whichis mailed to more than 200,000 peo-ple internationally. A series of publi-cations includes multi-page bookletswritten by experts in specific fieldssuch as symptoms and medications,support, physiotherapy, speech prob-lems, and nutrition. Many of theseeducational materials have beentranslated into other languages and allare available free of charge.Educational supplements dealing

with specific subjects related to PDare issued as the need may arise.

“Managing Parkinson's - StraightTalk and Honest Hope,” is a DVDcreated for the newly diagnosedpatient and his/her loved ones.Leading experts explain what PD isand how it is treated, how to dealwith symptoms of the disease, someof the medications' side effects andhow to keep a positive outlook indealing with it.

APDA works collaboratively withother US Parkinson's organizationswith similar objectives including theParkinson's Action Network, anational advocacy association basedin the nation's capital, PD Trials, aWeb-based service to inform patientsof existing clinical trials and toencourage participation and theMichael Fox Foundation to support aPD registry in the state of Nebraska.

Encouraging global cooperation,APDA was the co-sponsor, with theItalian Parkinson Disease Association,of the World Parkinson DiseaseAssociation, organized in November1998. Today, 26 national affiliatesfrom six continents work cooperative-ly to disseminate the latest informa-tion about the progress of PDresearch, therapy, and all vital infor-mation about the disease within theircountries. Dr. Paul Maestrone,APDA director of scientific and med-ical affairs and a WPDA founder, isthe president of this association.

APDA is proud of its diverse con-tributions to the Parkinson's patientsof the United States and of foreigncountries and the dedication to pur-sue its mission to “Ease the Burden -Find the Cure” for Parkinson's dis-ease.

This article was compiled from theofficial history of APDA.

The American Parkinson’s Disease Association, Inc.,44 YEARS LATER cont. from page 1

APDA SPRING 2008

4

Questions & Answers

BY ENRICO FAZZINI, DO, PhDAssociate Professor NeurologyNew York University, New YorkUniversity of Nevada, Las VegasN.Y. Institute of Technology, Old Westbury

Q: I have had tremor in my right armfor the last two years. Do Parkinson'sdisease patients progress at differentrates?

A: Yes. The older you are at diagno-sis the slower the progression. Tremorpredominant patients with tremor intheir non-dominant side (left armtremor in a right handed person)have less disability over time thanpatients with no tremor and onlyrigidity. Most patients do very wellfor 10-13 years at which time theyloose enough dopamine productionto become more sensitive to the med-ications. At this time they developtroublesome “on/off ” fluctuationswhere the medications work toomuch or too little with less time theycan function normally. Gradually,balance and/or cognitive functionbecome more and more impaired. Ihave some patients with PD for 20years who have these “on/off ” fluctu-ations but are still leading near nor-mal productive and enjoyable lives.Note that there are types of PD inwhich balance impairment is presentat the onset, medications do notwork, and the disease progressesmuch more rapidly. These forms ofparkinsonism are luckily much lesscommon than regular typical PD.

Q: I have had PD for three years. IfI take more Requip I get flushed anddizzy. I am also on Azilect. Mirapexdid not help. Should I start Sinemet?

It is getting more difficult to walkand take care of myself.

A: It is my belief that it is durationof disease and not duration of thera-py with L-Dopa, which leads to thetroublesome side effects of L-Dopa.Nevertheless, Sinemet should be usedin low doses and medications likeRequip and Azilect maximized.

It seems as if you have increasedthe Requip and Azilect as much asyou can. You should start low doseSinemet. You can keep the Sinemetdose low by adding Comtan.

Q: Neupro is off the market and Idid not do well on Mirapex andRequip. I am already on Sinemet25/250 four times a day and I haveperiods in which the PD symptomsworsen and other periods when I amjumpy and swaying. What should Ido?

A: In terms of dopamine agonisttherapy, we are in worse shape nowthen we were in 10 years ago becausePermax and now Neupro have beentaken off the market. Permax in highdoses (over 3 mg/day) leads to anincreased risk of heart valve damage.The Neupro patch has been found tobe defective – Neupro crystallizeswithin the patch leading to decreasedeffectiveness. Dopamine agonistsdirectly stimulate the areas of thebrain that need dopamine and theiruse stabilizes the response toSinemet. You can add Azilect and

Comtan and reduce the Sinemet to1/2 tablet every three hours duringthe waking day.

Q: What causes your voice to diminish?

A: Hypophonia is a term that describeslow voice volume. It is one of thesymptoms of PD. You can still speakclearly, but you must make a greatereffort to project your voice and useyour mouth, tongue and lips better.What was automatic like speech andwalking now must be more deliber-ate. Some patients also slur or stuttertheir words together. This is calledpallilalia and may be a sign of toomuch medication. You must slowdown when this happens. Finally,some PD patients (especially afterdeep brain stimulation) have a thick,cramped speech. This is dystonia andmay respond to medications such asArtane and Klonopin. You shouldhave speech therapy.

Q: Can you have Parkinson'sDisease and Alzheimer's Disease atthe same time?

A: You can develop cognitiveimpairments with PD. This usuallyshows up as difficulty with concen-tration and attention. Some patientshave severe cognitive impairments atthe onset of PD. We call this diffuseLewy body disease. Medications usedto treat Alzheimer's disease such asExelon or Aricept and even Namendamay help the cognitive impairmentsassociated with PD.

If you casually met Laura Marsh at a party, youwould never guess her profession. The vibrant youngwoman with a quick wit and ready smile might be mis-taken for a kindergarten teacher or public relations pro-fessional. Few, however, would guess that she is a nation-ally respected expert on neuropsychiatry and psychiatricdisorders related to Parkinson's disease (PD) at JohnsHopkins University School of Medicine.

But if not your stereotypical egghead, Dr. Marsh hasalways been an academic achiever receiving her BA fromOberlin (Ohio) College with highest honors, and MDcum laude from the Ohio State University College ofMedicine, Columbus. Her association with JohnsHopkins Hospital began with a postdoctoral internshipin internal medicine and psychiatry residency. Advancedstudies took her across the country and to Europe beforeshe returned to Hopkins in 1998. Today, in addition toher academic positions, she is an attending geriatric psy-chiatrist in the hospital's Department of Psychiatry andBehavioral Sciences and the director of the clinicalresearch program of the Johns Hopkins/NIH Morris K.Udall Parkinson's Disease Research Center.

Dr. Marsh is a prolific author, whose curriculumvitae lists more than 30 pages of publications includingarticles in scientific journals, editorials, book chapters,abstracts and co-editorship of the book, Psychiatric Issuesin Parkinson's Disease – A Practical Guide.

Dr. Marsh's interest in psychiatry began in highschool when several seemingly ordinary classmates, tragi-cally, committed suicide, and others developed severemental illnesses. Each case was different but raised thequestion for her as to what had caused their problems.She began wanting to become a basic scientist studyingbrain disorders but knew that wasn't her calling when themice she was studying in a project on alcohol dependencebecame so aggressive that their brawls caused her night-mares.

A winter term working with schizophrenia researchersin Bellevue Hospital, New York, revealed her love ofworking with patients. Her focus on neuropsychiatry, thestudy of psychiatric disturbances in patients with neuro-logical disorders, began when she was in England andSweden on a Thomas J. Watson Fellowship. The NationalInstitutes of Health, major pharmaceutical companies andnational organizations have funded her research.

She began using psychiatric disturbances in condi-tions like PD or epilepsy as models for understandingproblems in the general population. She has found herniche as a psychiatrist, working in the area of PD, wheremotor, cognitive, and psychiatric aspects of disease arelinked in every individual and need to be taken into con-sideration when providing care to patients and their fam-ilies. Over time, however, given the high rates of psychi-atric and cognitive disturbances in PD patients, one ofher goals has been to improve the recognition and treat-ment of psychiatric conditions by non-psychiatric clini-cians to diagnose and treat their patients for psychiatricdisturbances, especially depression.

“In particular, we need to do a better job identifyingearlier, and throughout the course of PD, who has psy-chiatric and cogitative problems. It is important that wediagnose patients as soon as they show signs of a mooddisorder, because treating depression in a PD patientactually reduces unwarranted disability,” she says. “If wewait until they see a psychiatrist, the problem is probablylong overdue for attention.”

Her time now centers on a family that includes a hus-band, 7-year-old and 13-year-old daughters, an almostall-black cat and working full-time. Most of her hobbies,such as playing viola in community orchestras, cooking,sewing, and vegetable gardening percolate in and out astime permits, but she always makes time to sew the nec-essary Halloween costumes. She also tries to combinesome fun work and family activities such as working atthe Ask the Doctor booth at the Parkinson's Unity Walk,which provides a good excuse to take the family to NewYork City for a weekend.

SPRING 2008 APDA

5

F.Y.I.BY K.G. WHITFORD

F.Y.I. is a guide to the efforts and successes and recognition of the hundredsof volunteers and staff who work daily to help ease the burden and find acure for millions of persons with Parkinson’s disease and their caregiversacross the United States.

MEET LAURA MARSH, MD SCIENTIFIC ADVISORY BOARD MEMBER

Dr. Laura Marsh and her 7-year old daughter, Dorothy,enjoying the activities at last month's Unity Walk in NYC.

APDA WINTER 2008

6

Fifteen eminent research scientists and physicians were evalu-ating funding recommendations for research grants during the2006 meeting of APDA's Scientific Advisory Board. Titles such as“Evaluation of Cerebrospinal Fluid Alpha-Synuclein as aBiomarker for Synuclein-opathies,” and “The Mechanism ofRedox Regulation of the Parkinonsonism Associated Protein DJ-1”were among those considered and then along came R-8, “CanDance Improve Functional Mobility in Parkinson's Disease?”

The premise? Tango lessons, specifically the Argentine tango,can be a tool to balance and mobility improvement in Parkinson'spatients. Truth be told, a scientific eyebrow or two was raised.

While an unusually non-scientific title, R-8, however, madethe cut and was funded. Dr. Gammon Earhart, WashingtonUniversity School of Medicine (St. Louis, Mo.) assistant professorof physical therapy, published the successful results in the Journalof Neurologic Physical Therapy and captured the imagination ofthe consumer health media,including the New YorkTimes.

MedicineNet.com led astory: “Not only is the tangoa dance of romance and pas-sion, it also helps improvebalance and mobility in peo-ple with Parkinson's dis-ease.” The story went on toexplain how a group of 19Parkinson's patients, abouthalf of whom were random-ly assigned to do 20 one-hour tango classes, registeredmuch better results in theBerg Balance Scale measur-ing mobility and balance than the other half of the group who hadstrength and exercise sessions designed for Parkinson's patients.

“Some participants were skeptical at first because they hadn'tdanced in years or because they thought their disease would inter-fere,” Dr. Earhart reports. But she notes that the moves of thetango, including turning, dynamic balance, movement initiation,moving at different speeds and walking backward, accompaniedwith the social aspect of dancing rather than tedious exercise,resulted in greatly improved functional mobility for all the partic-ipants. Madeleine Hackney, a predoctoral trainee in movementdisorders is working with Dr. Earhart.

So, while R-8 didn't have the traditional scientific ring to it, itdid prove that you can't judge good research by its grant title.

With a sense of great loss, APDA reports thedeaths of three benefactors in recent months.

Texas businessman and member of APDA'sboard of directors for three years: Marvin Marksdied Feb. 15, in Dallas. For many years Marvinsupported the fundraising projects APDA'sNortheast Texas Chapter, which has established aMarvin M. Marks Award to be given annually toan outstanding volunteer.

Nancy D. Barker, a registered medical techni-cian and phlebotomist who lived with PD for

It Takes Two to Tango, But an APDA Grant ToProve Its Benefits for People with PD

Twenty-eight “creative and inspirational” peo-ple living with Parkinson's disease (includingAPDA's Iowa coordinator, Sam Erwin) are profiledin Teva Neuroscience's new book, “Proud HandsPersonal Victories with Parkinson's/A Show ofHands.” The book includes a foreword by actress,author and singer Holly Robinson Peete, who withher former NFL player husband, Rodney, createdthe HollyRod Foundation to support those withPD and their families. It was launched at theParkinson's Unity Walk in Central Park, April 26.Proceeds will be given directly to APDA to supportresearch, people living with Parkinson's disease,their caregivers, and Parkinson's education.

The book is being sent as a gift to all APDAcontributors of $15 or more. Information is avail-able on the Web site www.apdaparkinson.org.Contributions by check may also be sent to APDA,135 Parkinson Ave., Staten Island, NY 10305 andshould indicate “Proud Hands” on the envelope.

TEVA NEUROSCIENCE'S BOOKBENEFITS APDA MISSION

IN MEMORIAM

F.Y.I.

(cont. on page 7)

Actress Holly Robinson Peete, left, helping to launch"Proud Hands Personal Victories with Parkinson's/A

Show of Hands" last month.

7

WINTER 2008 APDA

A Message From the National Young Onset Center

From its inception, APDA has recognized the essen-tial role support programs play in the lives of peo-

ple living with PD, patients and their families.Younger people with PD, however, tend to shy

away from traditional support groups choosing insteadfrom the explosion of Internet social networking sites.These “virtual” support groups have many advantagesincluding no geographic limitations. While this allowsfor a larger pool of support, young people who onlyparticipate in virtual support systems are missing out onan opportunity to create more personal face-to-facerelationships.

APDA's National Young Onset Center recognizesthat young people with PD have different primary con-cerns than people diagnosed later in life, and do notalways feel comfortable in traditional support groupmeetings largely composed of older people. Because ofthis, we are working to increase the number of APDA-affiliated support groups specifically for the youngonset population.

I recently received a call from someone interested in

starting a young support group. She had been diag-nosed in her 40's, and never had the kind of local sup-port a young onset group could have provided. Arecently retired nurse with both a professional and per-sonal perspective of PD to share, she had decided nowwas the time for her to establish the first YOPD groupin her area. Please, consider following her lead! If youare young, or were diagnosed young, and are lookingfor a new and meaningful way of giving and receivingsupport, consider starting a YOPD support group inyour area. The National Young Onset Center can helpyou get started (send you materials, notify people inyour area, publicize your meeting time/location), or canrefer you to a group near you. For more information,contact us at 1-877-223-3801.

While support groups usually have a leader, membersare often involved in establishing the structure and for-mat, and groups tend to be as diverse as their member-ship. So whether you are starting one or joining one, asupport group can be a powerful and empowering expe-rience and the possibilities for support are endless.

IN MEMORIAM

F.Y.I.

more than 27 years, died Jan. 22, inFalmouth, Maine. She and her hus-band, Carl, dedicated their timeand talents as advocates for peoplewith PD from the time of her diag-nosis. Carl has served as presidentof APDA's Maine Chapter, whichhas established 14 support groupsacross the state.

Ronald M. Dillon died atGeorgia War Veterans NursingHome, Augusta, Oct. 17, 2007after a 30-year courageous battlewith PD. A Korean War veteran, hewas the Georgia Chapter presidentfor six years, introduced the firstwalk-a-thon on the grounds ofWesley Woods, a senior living com-munity in northern Georgia, andraised many thousands of dollarsfor PD research and education.

(cont. from pg. 6)

APDA SPRING 2008

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F.Y.I.

New Jersey's annual spring confer-ence, “Living Well with Parkinson'sDisease,” attracted more than 200people on March 29. Eminent

physicians from neighboring states (Dr. Michele Tagliatiof Mt. Sinai Hospital, N.Y.C. and Dr. DanielWeintraub of the University of Pennsylvania), werejoined for the all-day conference by Leslie Gordon, RN,who shared the secrets of The Humor Project, Inc. andStacie Mishler, director of the Parkinson Unity Walk.

Maine coordinator Lillian Scenna was among thosegiving testimony to the state legislature in support ofLD1975, “An Act to Promote Awareness of Parkinson'sDisease,” earlier this year. The bill called for increasedtraining for emergency and public safety workers regard-ing proper assessment and care of persons with PD, espe-cially in crisis situations. Last month the Maine Chapterin partnership with MaineHealth presented the sixthannual Parkinson's Awareness Conference, “Brainpower,”in Falmouth.

The New Hampshire I&R Center's April 19 semi-nar “Improving Parkinson Disease Treatment ThroughInnovation and Research”, emphasized the “how” ratherthan the what in PD research and treatment. Among thetopics were: how Innovative surgery is used to relieve PDsymptoms; how current laboratory research deepensunderstanding the causes of PD; and how clinicalresearch helps in evaluating new treatments. The pro-gram at Dartmouth-Hitchcock Medical Center inLebanon included participants in discussions to under-stand better the decision-making process of patients'choices.

Movement authority John Argue,APDA Scientific Advisory Boardchairman, Dr. Frederick Wooten,and Dr. Abu Qutubuddin from

the Southeast Parkinson's Disease Research educationand Clinical Center (PADRECC) addressed the annualParkinson's Disease Community Education Days. Theannual event sponsored by the Richmond (Virginia)Metro APDA Chapter, I&R Center of Charlottesville,and PADRECC attracted more than 250 people.

Paula Houston, APDA's Louisiana coordinator, hada different approach to promote PD awareness last

month – the centerpaid for those withPD to attend theParkinson's exercise classduring April, almost doubling attendance. The rationaleis that a “free” month of exercise will whet their appetitesand they will continue.

Brenda Allred was blown away figuratively at theturnout for the Jackson, Mississippi symposium lastmonth mostly because it was almost blown away literal-ly by an 80-mile a hour tornado the previous day. Withno electricity or phones, Brenda and the speakers forgedahead in “winds worse than we had during Katrina,” and120 people arrived for the all-day event.

Tucson I&R coordinator, Dr.Cynthia Holmes, presented“Parkinson's Disease - Update,”one course in the University of

Arizona's Mini Medical School series. The series of fiveevening lectures presented by the College of Medicineincluded health issues dealing with organ transplants,prescription drugs, PD, basic research and hand injuries.

Last month's Washington StateChapter's Education PatientCare Program included valuable

information on medications and non-motor manifesta-tions and physical therapist's Ann Zylstra's easy-to-remember message by its title alone, “Exercise Can Help,But Only If You Do It!”

PGA golfer Steve Stricker was soimpressed with Greg Kopan's$5,000 donation to APDA'sWisconsin Chapter, that he con-

tributed an additional $10,000. Greg competed in theMadison Ironman Triathlon in Madison in honor of hisbrother-in-law, Dale Carlstom. Stricker's gift was a por-tion of the charitable proceeds from the 2007 PresidentsCup at the Montreal Golf Club, a unique event with nopurse or prize money. Players instead choose charitablecauses.

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SPRING 2008 APDA

By Annemarie SchwarzkopfAPDA Georgia Chapter President

SENIOR LIVING OPTIONS

Recently, there has been a proliferation of senior housing communities. Families have many choices when the need for a senior housing facilityarises. With so many new options in senior housing, we would like to take the time to review some of these with our readers.

Independent Living CommunitiesIndependent communities cater to seniors who are very independent and with few medical problems. Residents livein fully-equipped private apartments. A variety of apartment sizes are available from studios to large two bedrooms.Fine dining services are offered with custom-designed meal packages. Often, residents can choose to pay for a spec-ified number of meals per day. Frequently, there are numerous social outings and events to choose from for enter-tainment.Also Known As: Retirement Communities; Congregate Care; Retirement LivingPayment Sources: Mostly private pay; some government funded through HUD section 202Price Range: $1000-$2500 per month

Assisted LivingAssisted living communities are designed for seniors who are no longer able to live on their own safely, but do notrequire the high level of care provided in a nursing home. Assistance with medications, activities of daily living, mealsand housekeeping are routinely provided. Three meals per day are provided in a central dining room. Residents livein private apartments that frequently have a limited kitchen area. Staff is available 24 hours a day for additional assis-tance. Most assisted living communities provide licensed nursing services. The hours vary greatly, so be sure to askwhen you can visit. Social activities and scheduled transportation are also available in most communities. A specialunit for Alzheimer's residents is available in some, but not all of them.Also Known As: Assisted Care Community Payment Sources: Mostly private pay; some accept MedicaidPrice Range: $1800 - $3500 per month depending on the size of apartment level and level of assistance required;Alzheimer's care ranges from $2800 - $3800 for a shared suite

Nursing HomesNursing homes provide around-the-clock skilled nursing care for the elderly who require a high level of medical careand assistance. Twenty-four hour skilled nursing services are available from licensed nurses. Many nursing homesnow provide short-term rehabilitative stays for those recovering from an injury, illness or surgery. Long-term care res-idents generally have high care needs and complex medical conditions that require routine skilled nursing services.Residents typically share a room and are served meals in a central dining area unless they are too ill to participate.Activities are also available. Some facilities have a separate unit for Alzheimer's residents. Also Known As: Convalescent Care; Nursing Center; Long Term Care FacilityPayment Sources: Private pay; Medicare; MedicaidPrice Range: $4000 - $8000 per month

Residential Care HomesResidential care homes are private homes that typically serve residents who live together and receive care from live-in caretakers. These homes offer assisted care services for seniors who want a more private, home-like communi-ty. Assistance with activities of daily living such as bathing and dressing are typically provided. Amenities and nurs-ing services vary greatly among homes. Ask about their services when you tour. Also Known As: Board and Care Homes; Group Homes; Adult Family HomesPayment Sources: Private pay; Medicaid in some instances Price Range: $1500 - $3000 per month depending on the services and level of care provided

(cont. on page 10)

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APDA FALL 2007

Parkinson’s disease (PD) affectsdopamine, norepinephrine, and

the cholinergic systems. As a resultindividuals have a decreased sense ofsmell, they may have less motivationto eat, and their hunger centers maybe less active. Swallowing may alsobe more difficult. Tremor or dyski-nesias may also increase an individ-ual’s metabolic rate. Stiffness andslowness may make meals morearduous, and decreased gastric emp-tying and constipation may con-tribute to weight-loss problems. Inone recent study subjects with PDwho were older, had visual hallucina-tion and memory problems, were athighest risk for weight loss.

Another study recommended tomonitor the weight in individuals

with PD, by keeping close track andhaving a log of weights taken at leastmonthly. This will ensure thatweight loss is noted and lifestyle anddietary modifications can be made.

Physical exercise to stimulateappetite and to enable maintenanceof muscle tone is important to pre-venting weight loss. In addition, ade-quate hydration with 6-8 glasses ofwater a day is advised. This may alsohelp with decreasing constipation.

Individuals who are fatiguedwith eating three larger meals a dayshould have 5-6 smaller meals.Taking PD medications 30-60 min-utes prior to meals will ensure opti-mum absorption and effect in timefor meals. Choosing high-caloriefoods and supplementing with

shakes or other nutritional supple-ments may also stabilize or increaseweight. If you have swallowing orchoking difficulties, a swallow studyand speech and swallow therapy maybe needed.

PD is best managed with ahealthy diet, exercise and close mon-itoring of medications to optimizequality of life.

A well-balanced diet is impera-tive to a healthy lifestyle. Guidanceabout specific nutritional recom-mendations is available in the APDAGood Nutrition and Parkinson’sDisease booklet.

This article was originally pub-lished in the Fall 2007 newsletter ofthe Boston APDA I&R Center.

WEIGHT LOSS IN PARKINSON’S DISEASEBy Anna D. Hohler, MD

Assistant Professor of Neurology, Boston University Medical Center

While obesity reaches epidemic proportions in the United States, neurologists are concerned that individuals with Parkinson’s disease(PD) may be losing too much weight. Two studies published last year confirm an association between PD and progressive weight

loss and outline the likely reasons for this effect.

Respite CareRespite care provides a temporary break for caregivers by allowing a resident to have a short-term stay in a com-munity that can meet their needs. Many assisted living communities and nursing homes have a respite care pro-gram. Residents typically stay from a week to a month, depending on their situation. They receive all of the serv-ices of the community. Respite stays may also serve as a “get acquainted” period for the senior. Many residentsfind that they enjoy their stay and decide to move in soon after the short-term visit. Respite programs are avail-able for assisted living and Alzheimer's residents. Also Known As: Short-Term Stay ProgramsPayment Sources: Private pay; Medicaid in some instancesPrice Range: $75 - $100 per day

Home CareHome care allows older people to remain in their own homes while receiving the assistance they need to help themremain independent. Typically, home care involves providing assistance with activities of daily living ADLs orinstrumental activities of daily living (IADLs) such as transportation, paying bills, making appointments and sim-ply being there to provide companionship and emotional support. Home care services range from once a week to24 hours a day depending on the needs of the client. Also Known As: Home Health Care; In-Home Personal Care Payment Sources: Private pay; Medicare/Medicaid via certified home health agenciesPrice Range: Typically an hourly fee

Senior Living Options cont. from page 9

This article was originally published in the Atlantis APDA Fall 2007 newsletter.

Disturbances of sleep are one of the more commonproblems experienced by people withParkinson's disease (PD), affecting up to 75 per-

cent of patients. In fact studies suggest that sleep is evenmore of a problem for patients with PD than it is for thegeneral population or those with other medical conditionswho are of similar age.

Typical sleep problems seen in PD include difficultyfalling asleep and staying asleep, muscle stiffness andtwitches during sleep, vivid dreams, sleep walking, andwaking up with morning headaches. Sleep apnea (periodsof not breathing during sleep), REM behavior disorder(acting out your dreams in your sleep, often at the risk ofinjuring yourself or your spouse), excessive daytime sleepi-ness, and sleep attacks (sudden onset of sleep) are alsoquite common among people with PD.

The link between PD and sleep difficulties is notclearly understood. It is possible that many of the neu-rodegenerative changes that occur in PD may directlyaffect the sleep-wake cycle, leading to sleep disruption.Many of the brain neurotransmitters that help to regulatesleep (like dopamine, norepinephrine, serotonin, andGABA) are also damaged to different degrees in PD.Furthermore, motor difficulties, such as inability to movein bed, dystonic movements and pain from leg crampsmay all interfere with sleep.

While dopaminergic replacement therapy mayimprove sleep in patients experiencing nighttime motordysfunction, it may also disrupt the normal sleep patterns,as these drugs may be stimulating to some patients. Sleepattacks have also been associated with nearly all availabledopminergic drugs, especially pramipexole (Mirapex) andropinirole (Requip).

If you are having sleep difficulties, it is very importantto discuss your symptoms with your doctor. The first stepto appropriate treatment is to ensure proper diagnosis.Doctors may order a formal overnight evaluation in a sleepclinic (sometimes called a sleep study) to identify specificcauses of insomnia such as sleep apnea or restless leg syn-

drome. The next step is to treat the specific sleep disorderthat is identified. For example, medical conditions such assleep apnea have specific treatments that have been foundto be helpful. Any depression and anxiety should also beidentified and treated as these concerns are quite commonin PD and nearly always interfere with sleep.Optimization and adjustment of dopaminergic replace-ment therapy are also critical to successful treatment ofsleep disturbance.

The intermittent use of sleep medications may alsohelp patients to fall asleep faster and stay asleep longer.Daily exercise, relaxing before bedtime, keeping regularsleep hours (i.e., going to bed and getting up at the sametime everyday), and avoiding excess time in bed, daytimenaps, caffeine or alcohol in the evening, and large eveningmeals may also be helpful. And most importantly, indi-viduals suffering from insomnia should only use their bedfor sleep (and sex!) and not for other activities such as pay-ing bills, watching TV, or trying to solve the problems ofthe day.

This article was originally published in the NewBrunswick, NJ APDA I&R Center in Winter 2006-2007.

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FALL 2007 APDA

SLEEP andPARKINSON'S DISEASEBy Roseanne DeFronzo Dobkin, PhDAssistant Professor of PsychiatryUMDNJ - Robert Wood Johnson Medical School, New Brunswick, NJ

A new study in patients with earlyParkinson’s disease demonstrates thatStalevo® (carbidopa, levodopa and enta-capone) gives better symptom control andgreater improvements in activities of dailyliving in patients with early Parkinson’s dis-ease, than carbidopa/levedopa, the mostwidely-used current therapy. The results ofthis study were presented last month at theAmerican Academy of Neurology AnnualMeeting in Chicago.

STALEVO IN EARLYPARKINSON'S DISEASE

APDA SPRING 2008

Single copies of the following publications may be obtained free of charge by writing to the national APDA office or bycalling 1-800-223-2732, faxing to 1-718-981-4399, or contacting any of the 62 APDA Information and ReferralCenters.

BOOKLETS1. Basic Information about Parkinson’s Disease Brochure (English)2. Parkinson’s Disease Handbook - Symptoms, causes, treatment - booklet (English, German, Italian)3. Be Active - An exercise program for people with Parkinson’s disease was recently published by the AmericanParkinson Disease Association and is ready for distribution. This comprehensive educational booklet was writtenby Terry Ellis, PT, PhD, NCS, Tami Rork, PT, MSPT and Diane Dalton, PT, DPT, OCS of the Center forNeurorehabilitation, Sargent College, Boston University.

The “Be Active” booklet contains exercises specifically designed for people with Parkinson’s disease. In addi-tion, it describes helpful hints to improve day to day mobility. Maintaining an active lifestyle is important forenhancing overall well-being. More and more studies are demonstrating the benefits of exercise for people withPD. The information in this booklet will help people with Parkinson’s disease get started on an exercise programand stick with it! The “Be Active” booklet provides the Parkinson’s community with the tools they need to getstarted on a journey towards improving health and wellness.4. Be Independent- Equipment and suggestions for daily living activities - booklet (English)5. Speaking Effectively - Speech and swallowing problems in Parkinson’s disease - booklet (English)6. Good Nutrition - booklet (English)7. Young Parkinson’s Handbook - booklet (English)8. Aquatic Exercise for Parkinson’s Disease - booklet (English) 9. My Mommy Has PD... But It’s Okay! - booklet for young children. (English)

The Next Step After Your Diagnosis: Finding Information and Support-Booklet can be obtained by calling 800-358-9295 and requesting booklet AHRQ Publication No. 05-0049

SUPPLEMENTSThe Family Unit; The Fine Art of “Recreation & Socialization” with PD; Fatigue in PD; Healthy Aging; Keys forCaregiving; Medications to Be Avoided or Used with Caution in PD; Neuro-Opthamology and PD; MedicalManagement of PD and Medications Approved for Use in the USA and others.

DVD’SManaging Parkinson’s - Straight Talk and Honest Hope.Created by the Washington State Chapter of APDA for newly diagnosed Parkinson’s patients and their loved ones.

A DVD, No AHRQ 07-M025 “Next Step After Your Diagnosis/Tips for Taking Medication Safely” can beobtained, free of charge, from the Agency for Healthcare Research and Quality by calling 800-358-9295, or 888-586-6340 (hearing impaired only) or by e-mailing www.ahrq.gov

APDA WEB SITEwww.apdaparkinson.org for PD I&R Centers, Chapters, Support Groups, education and information material,meeting dates, publications, medical abstracts, clinical trials and research application guidelines.

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

Materials concerning 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.

THE PRINTING AND DISTRIBUTION OF THIS NEWSLETTER WAS PARTIALLY SUPPORTED BY A GRANT FROM NOVARTIS.

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Information on Parkinson’s Disease

Educational Material