early all persons with Parkinson’sdisease (PD) eventually develop

motor fluctuations, changes in the effectof PD medication, usually levodopa/car-bidopa (LD/CD or Sinemet®), over thefew hours between doses. This can inter-fere with work schedules, outings or socialevents.

The time when the medication is work-ing is called “on” and the opposite is “off.”Many people with PD experience invol-untary movements (dyskinesias) or hallu-cinations during the “on” state. This usu-ally is a sign of excessive medication ac-tion, not a sign of the “off ” state. The rea-son for the fluctuations is that the brain ofpeople with PD over a period of yearsslowly loses its ability to store levodopa be-tween doses and must rely on whateverdrug has been supplied within the previ-ous couple of hours. About half of peoplewith PD experience fluctuations by thefive-year point in their illness regardless ofhow long they have been receiving med-ication. In most people with fluctuations,the benefit of a dose of LD/CD lasts 2 to4 hours and then wears off slowly over aperiod of an hour. The next dose may takean average of 30 minutes to start working.

There are several possible solutions tothis problem:

Push the LD/CD doses closer together,creating one additional dose per day.

Advantage: It does not add anoth-er item to the medicine chest.

Disadvantage: Does impose the burdenof remembering more dose times per day.

Add entacapone (Comtan®) towhichever LD/CD doses are likely to

wear off too soon, up to six per day. Thisdrug slows the body’s ability to excreteLD/CD.

Advantage: Can be tailored to the indi-vidual’s wearing-off pattern.

Disadvantages: Gastrointestinal side ef-fects such as abdominal pain, gas or diar-rhea in some patients.

An alternative drug with the same basicaction is tolcapone (Tasmar®), which istaken one to three times a day, not neces-sarily at the same dosing times as LD/CD.It works better than entacapone but cancause liver damage in very rare cases andrequires blood tests as a precaution.

Add or increase the dosage of adopamine receptor agonist such as

pramipexole (Mirapex®) or ropinirole(Requip®). Older drugs in this class arethe now infrequently used pergolide (Per-max®), and the almost no-longer-usedbromocriptine (Parlodel®).

Advantages: These drugs not only helpfluctuations, but also have their own an-tiparkinson effects to add to those ofLD/CD. They are less likely to causedyskinesias than adding LD/CD.

Disadvantages: The agonists are expen-sive, they are more likely to cause halluci-nations in elderly or demented patients

The American Parkinson Disease Association

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

Paul Maestrone, DVM,Director of Scientific and Medical AffairsEditor

Vincent N. GattulloPresident

Joel GerstelExecutive Director

INDEX

Motor Fluctuations P. 1

President’s Message P. 2

Lecture in Honor of Roger Duvoisin, MD P. 2

Alternative Therapies & Parkinson’s Disease P. 3

Q&A P. 4

F.Y.I. P. 5-8

Parkinson’s Disease in Women P. 9

Foot Cramps in Parkinson’s Disease P. 11

PD & The NebraskaTelehealth Network P. 11

Educational Material P. 12

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

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

S P R I N G 2 0 0 6 N E W S L E T T E R

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MOTOR FLUCTUATIONS

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continued on page 10

By Lawrence I. Golbe, MD APDA Center for Advanced Research

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

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Dear Reader,This is an exciting time of the year for APDA; it is when we make

our contribution to research. In our next issue, we will report to youthe institutions and the scientists whose work has been found promis-ing by our Scientific Advisory Board in our quest toward finding thecure for Parkinson’s disease. This year more than $3 million will be al-located, bringing APDA’s total contribution to research over the $30million mark.

How we achieve this is quite amazing.

APDA does not receive any government or public funds. With limited exception, our revenuecomes from individual donations in the form of responses to mailings, memorials, celebrationgifts and bequests. Yes, occasionally these gifts can be quite large, especially by people who re-member APDA in their wills, but by and large, it is the culmination of thousands of smaller do-nations from around the country that add up and make it possible for APDA to support the re-search programs in institutions like UCLA, the University of Virginia, and the Robert WoodJohnson Medical School.

As technology grows and people find it easier to make donations using their credit cards, thecomputer and Internet have become responsible for more individuals’ donations. Via our Website, www.apdaparkinson.org, a donation may be made with complete security with just threemouse clicks.

But direct mail remains our largest source of support, and as a result, all manner of letters cometo my desk. Some people ask to be added to our mailing list and some want to be removed;some people don’t want to receive gifts, while others ask if they can obtain more. Some peoplewrite to compliment us on our work or comment on a story in the newsletter, and some havesuggestions for future stories. I answer every one possible (if they have a return address or tele-phone number), because we at APDA truly believe that we are here to serve our contributors aswell as patients and caregivers and healthcare providers.

And, to publicly answer a common question, no, we do not lose money on gift mailings. Oneof our most successful mailings costs a little more than $1 to send, and the average contributionfrom it is $25, equating to an additional $50,000 dollars for research — or one research grant— the grant that may provide the data that does find the cure.

We ask for your patience.

So, please enjoy our gifts to you. If you don’t like them, please remember that maybe there aremany people who do, and they may be a key to eradicating this awful disease.

Sincerely,

Vincent N. Gattullo President

P R E S I D E N T ’ S M E S S A G ELECTURE IN HONOR OFROGER DUVOISIN, MD

UMDNJ - Robert Wood JohnsonMedical School has announced the es-tablishment of an endowed lecture inhonor of Roger C. Duvoisin, MD, thefirst chair of the School’s Department ofNeurology and an expert in Parkinson’sdisease and other movement disorders.

As chair of the Department, Dr. Du-voisin created one of the nation’s bestand largest movement disorders cen-ters, which was designated a Center ofAdvanced Research of the AmericanParkinson Disease Association (APDA).Dr. Duvoisin also served as chair of theAPDA’s Scientific Advisory Board andreceived the first APDA Contursi award.

Each year an expert in movement dis-orders will be chosen as the Roger C.Duvoisin Visiting Professor by a com-mittee of the Neurology DepartmentMovement Disorders faculty andasked to lecture on a relevant topic inmovement disorders. The first lecturewill be in November 2006.

The first recipient of the visiting pro-fessorship will be G. Frederick Wooten,MD, the Mary Anderson Harrison Pro-fessor and chair of Neurology at theUniversity of Virginia (UVA) in Char-lottesville. Dr. Wooten was chosen be-cause his contributions to Parkinson’sdisease and other movement disordersclosely parallel Dr. Duvoisin’s.

Dr. Wooten succeeded Dr. Duvoisin aschair of the Scientific Advisory Boardof the APDA, and leads the MovementDisorders Center at UVA, also a Centerfor Advanced Research of the APDA.

The endowed lecture, establishedthrough the Foundation of the Univer-sity of Medicine and Dentistry of NewJersey, is supported by a permanentlyrestricted gift of $100,000 raisedthrough donations from Dr. Duvoisin’sfamily, colleagues, friends and pa-tients.n

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What does “alternative medicine” reallymean?

“Alternative” is a term that implies anon-Western medicinal approach. It of-ten refers to Eastern (traditional Chinese,Japanese, Indian “Ayurvedic”) methodsof evaluation and treating physical con-ditions. Many therapies can fall withinthis category, but the more commonones include acupuncture, herbal thera-pies, homeopathy, manual therapies(massage, Reiki) spiritual healing, natur-opathy, mind-body exercises (yoga, taichi) and vitamin/enzyme supplements.The term “integrative,” “holistic” or“complementary” are preferred instead of“alternative” because these imply an ad-dition or combination of these therapieswith established Western medicine ap-proaches (dopaminergic drugs, brain sur-gery, rehabilitative therapies) into a com-prehensive program for the individualperson with Parkinson’s disease (PD).

What herbs are safe to take and areproven to help people with Parkinson’sdisease?

The herbs macuna pruriens, a plantthat contains levodopa, can reduce someof the motor symptoms of Parkinson’sdisease. Other herbs and many other“over-the-counter” supplements such asvitamins, enzymes and amino acids areloosely regulated by the Food and DrugAdministration. This means that thequality, purity and content of any ofthese supplements are dependent uponthe manufacturing company. Almostnone of these have been properly studiedfor the treatment of PD. As a consumer,you should contact the manufacturer di-rectly with questions about the purityand safety of the product as well as con-sult a licensed specialist (i.e. herbalist, nu-tritionist) for advice before taking anysupplements. Some herbs and supple-ments can interact with prescribed med-ications or cause unwanted side effects.

Should people with Parkinson’s diseasetake Co-Q10?

Co-Q10 is not a proven treatment forParkinson’s disease at the present time.Co-Q10 is a vitamin-like substancefound within the energy source of everyliving cell (the mitochondria). It hasbeen shown to occur at lower levels inpersons with PD.

A recent double-blind study showedpersons with PD who took Co-Q10 300mg 4 times a day (1200 mg total dailydose) scored 44 per cent better on motorscales than the persons who took theplacebo pills over 16 months. This was asmall study and whether Co-Q10 trulyhelps reduce motor symptoms or mightdelay the progression of PD is unknown.Future studies are needed to help to bet-ter understand this. It was found to beharmless to the patients who took it inthe study.

What vitamins should people take if theyhave Parkinson’s?

There are no proven vitamins thatspecifically help reduce the motor symp-toms of PD. One theory of the cause ofParkinson’s proposes an excess of electri-cally charged particles called free radicals.Antioxidants, such as vitamin C (500-2000mg/day) help to reduce these freeradicals, and therefore this is a vitamin tobe considered for taking.

Does exercise really make a difference?Exercise of any kind that does not in-

crease one’s risk of falling is always rec-ommended to increase endurance, im-prove delivery of oxygen to the brain,heart and muscles, increase musclestrength and mass, and improve coordi-nation, balance and flexibility. Exercisessuch as yoga and tai chi focus on themind-body connection and improve bal-ances and mobility for persons withParkinson’s disease.

Can creatine help increase strength? Yes, creatine is an over-the-counter

powder like substance that many athletestake because it helps supply phosphorusto muscle cells so they can make moreATP, the main energy source for all cells.Recommended doses are 1 teaspoon perday mixed with a liquid. People whotake creatine feel stronger and often no-tice an increase in muscle bulk. There arealso some medical studies reporting im-proved thinking and memory in personswho took creatine daily. It is not too ex-pensive, costing only about $5-10 for amonth’s supply. Check with your treat-ing physician before taking it to be sureit is safe, especially if you have kidneyproblems.

What holistic therapies could be triedand where could a knowledgeable doctorbe found?

It is important to try therapies that fityour personality, schedule and budgetand are readily available. You will needto spend some time and effort to educateyourself about a particular therapy beforedeciding whether it may help you. Youwill need to find a licensed specialist forthe particular therapy you are consider-ing. Some doctors who are more orient-ed toward holistic therapies include doc-tors of oriental medicine (D.O.M.),doctors of osteopathy (D.O.), natur-opaths, homeopaths, licensedacupuncturistsand herbalists. n

Adapted from an arti-cle by Jill Mariama-Lyons, M.D. pub-lished in the Spring -Summer 2005 Issue ofthe Cedar-Sinai Med-ical Center APDAI&R Center Newslet-ter.

Alternative Therapies & Parkinson’s Disease

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My husband issleepy all day andgetting slower.The slownesscomes in the latemorning andthen again afterlunch. His doc-

tor told him to take his medicationsfour times a day but he only takesthem three times a day and some-times he forgets to take the thirddose. Why is he doing poorly?

In order totreat Parkin-son’s diseaseand to beable to pre-dict whenthe medica-tions will

work at their best, it is absolutely im-perative that you wake up and go tosleep at the same time, eat yourmeals at the same time, keep thelunch protein low and take yourmedications at the same time everysingle day. For example, wake up at7 am, take your medications, eat alight breakfast at 7:30 am, take yourmedications at 11 am, eat lunch(minimal protein — chicken, beef,fish, turkey, ham) at noon, take yourmedications at 3 pm, eat dinner at 5-5:30 pm and then take your medica-tions at 7 pm and go to sleep at10:30/11 pm. EVERY DAY. Oncethis is done, your doctor can makeeffective adjustments in the medica-tions.

I heard aboutnew discoveriesin genetics re-garding Parkin-son’s disease. IsParkinson’s dis-ease genetic?

Most pa-tients withParkinson’sdisease doNOT havean identifi-able genetic

or environmental cause which isknown. However, almost half of thepatients with young onset disease(onset below the age of 40) and atleast half of the patients with astrongly positive family history dohave gene defects that have been iso-lated. Some of the young onset genedefects go under the names Parkin,alpha synuclein and PINK-1. Thesedefects have to do with the transportand release of dopamine inside thecell that makes dopamine and thesensitivity of those cells to poisoning.

The gene that has been isolated inelderly onset family history positivepatients is LRRK2, which works as afacilitator of chemical reactions in thedopamine neuronal system. In gener-al if you have a parent and a siblingwith Parkinson’s disease, your chancesof getting it are about 25 per cent. Ifonly one parent has PD, your risk ofgetting PD is only about 5 per cent.The risk, in the general population ofhaving PD is about 0.3 per cent.

My motherhas tried toavoid startingL-Dopa be-cause she heardit will onlywork for ashort period of

time. She wants to take it only whenshe needs it but she has had PD forover 11 years and she is getting to thepoint where she can barely take careof herself. Should she take it now?

It is the du-ration ofdisease (thelength oftime thatone has PD)and NOT

the duration of therapy with L-Dopawhich leads to the inability of L-Dopato work. It is true that you should usethe minimal amount of L-Dopa that isneeded to have most of it supplied asextended-release L-Dopa with eitherentacapone or selegiline and youshould take as much dopamine ago-nist (pergolide, ropinerole orpramipexole) as can be tolerated. Im-mediate-release L-Dopa does notwork as smoothly after three to fiveyears as it does when the diagnosis ofPD is first made, but it does continueto work and if you wait too long tostart it, it may never work smoothly atall. I believe in getting a patient asgood as possible once treatment is ini-tiated and then doing everything pos-sible to keep the patient symptomsfrom progressing. n

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

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A:

Q: Q:A:

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At UCLA’s David Geffen School ofMedicine it is Dr. Marie-FrançoiseChesselet who brings Parkinson’sdisease research together. Dr. Ches-selet, who was born and educated inFrance, is chair of the school’s de-partment of neurobiology, and di-rects APDA’s Advanced Center forParkinson’s Disease Research. In ad-dition, she directs two centers sup-ported by the National Institutes ofHealth (NIH) - the UCLA MorrisK. Udall Center for Excellence forParkinson’s Disease Research (sup-ported by the National Institute forNeurological Disorders and Stroke), and the Center forGene Environment Studies in Parkinson’s Disease (sup-ported by the National Institute for EnvironmentalHealth Sciences).

After earning her MD and PhD degrees from theUniversity of Paris VI, and completing an internship atthe Hospital de l’Hotel Dieu in Paris, Dr. Chesselet ob-tained a position at the College de France in Paris andsubsequently went to the Massachusetts Institute ofTechnology and the NIH as a visiting scientist. A decadeago she left her faculty position at the University ofPennsylvania and moved west to accept the position ofCharles H. Markham Professor of Neurology at UCLA.

Dr. Chesselet, who is the author of more than 100publications and recipient of numerous honors, is par-ticularly interested in the molecular mechanisms ofneurodegenerative disease. Over the years, she has used

wide ranges of techniques to studythe functional anatomy of the basalganglia, their development, andtheir response to a variety of brainlesions including the cell loss thatoccurs in Parkinson’s disease.

Currently her lab uses mousemodels of Parkinson’s disease to studythe progression of the disease in mam-mals and develops tests that can beused to evaluate new therapies. Shehas already discovered several drugsthat improve the behavior of mousemodels of Huntington’s disease andhopes to use a similar approach to de-

velop treatments for Parkinson’s. As director of the Parkinson’s research centers at

UCLA, she fosters collaboration among all the partiesin bringing research “from the bench to the bedside.”These include geneticists and epidemiologists who areidentifying new risk factors, molecular biologists andneurobiologists working on new drugs, engineers andneurobiologists improving surgical approaches, and theprivate sector and neurobiologists striving to developstem cell therapies.

It is a good thing that Dr. Chesselet enjoys travel be-cause she does it extensively to promote the exchange ofideas among Parkinson’s disease researchers. She is anavid reader and arts lover. She and her husband, TerryReisine, take great pride in their 18-year-old sonDavid’s photography talent, and his arts major studiesat the University of California in Santa Cruz. n

Dr. Marie-Françoise Chesselet directsAPDA's Advnced Center for Research at

UCLA Medical Center, Los Angeles.

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

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

SPRING 2006 VOLUME XII NO. VIFYI EDITOR: K.G. Whitford

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MARIE-FRANÇOISE CHESSELET, MD, PH.DSCIENTIFIC ADVISORY BOARD MEMBER

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The World Parkinson Disease Asso-ciation (WPDA) elected Paul Mae-strone, DVM, to be its president atits meeting in Washington, DC,Feb. 22. Other officers are GianniPezzoli (Italy), scientific coordina-tor; Joel Miele (U.S.), vice president;

Andre Hovine (France), treasurer;and Sam Grossman (Brazil), legaladvisor.

Elizabeth Braun (U.S.), and JoelGerstel (U.S.) were elected secretaryand vice president for North Ameri-ca, respectively.

WPDA is a coalition of 26 coun-tries committed to improve thequality of life of Parkinson’s patientsworldwide through education.Among its goals are to broaden pub-lic awareness of the disease, establishguidelines for a “continuum of edu-cational program” for patients, en-courage the standardization of diag-nostic procedures and medical andsurgical therapies, and support re-search. It is based in Milan, Italy.

Dr. Maestrone, who is APDA’s di-rector of scientific and medical af-fairs, was a principal in founding theWPDA in 1998 and has served as itsgeneral manager since. n

WORLD PARKINSON DISEASE ASSOCIATIONELECTS DR. PAUL MAESTRONE PRESIDENT

It wasn’t quite cherry blossom timein the nation’s capital, but one weekafter the largest recorded snowfall inthe East, participants of the week-long string of Parkinson’s-relatedevents, were happy with the Febru-ary sunshine.

APDA was represented at theParkinson’s Action Network Sum-mit (Feb. 19-21), the World Parkin-son Disease Association meeting(Feb. 22) and the World Parkinson’sCongress (Feb. 22-26). n

APDA IN WASHINGTON, DC

APDA director of scientific and medical affairs Dr. Paul Maestrone, second from left, with members of the World Parkinson Disease Association after his election as president in Washington, DC.

Joel Gerstel and the late Sen. Morris Udall’sdaughter had a photo op during the PAN Summit.

Associate director for scientific and medical affairs,Michele Popadynec shares information with a

visitor to the APDA booth at the World Parkinson’s Congress in Washington, DC.

APDA exeutive director Joel Gerstel shares a lighter moment with the heads of other Parkinson’s disease organizations at the Parkinson’s Action Network (PAN) Summit in Washington, DC. From the left arePAN executive director Amy Comstock, Michael J. Fox Foundation executive director Debbie Brooks,

and Parkinson’s Disease Foundation executive director Robbin Elliott.

Look out Montpelier City Hall! OnJune 3, APDA will take to rockingthe day away, raising funds for PDresearch in 100 rocking chairs to beplaced on the Statehouse lawn. Basedon the premise that few people withPD can run a marathon or ride abike, the Vermont Chapter invitesparticipants to rock for a cure. BruceTalbot from the Vermont Chaptersays there will be “mini” satelliteRock-A-Thons at locations through-out the state. Information is availableby calling 802-827-9950 or atparkinsonsvt@surfglobal.net.

The Massachusetts Chapter wasamong 30 health-related organiza-tions to sponsor “Making HealthConnections,” a first-of-its-kind fo-rum addressing how chemicals in theenvironment may be linked with dis-eases and disorders. Organizers calledfor legislation to reduce toxic chemi-cals in the environment to protectpublic health.

Congratulations to APDA’s newWisconsin Chapter and I&R Center.Coordinator Jessica Hahn reports itsfirst walk-a-thon raised more than$13,000 and reaped newspaper andtelevision coverage in Madison aswell.

There’s not much skiing going on in

Pittsburgh in June, but APDA willbe walking on the 3rd at the BoycePark Ski Lodge in Monroeville. Theannual walk-a-thon will include abuffet lunch for registered entrantswith a pre-luncheon talk by Dr. Su-san Baser, the I&R Center director.If sailing sounds even more appeal-ing, the eighth annual Three RiversCruise and Seminar is scheduled forSept. 13. It’s a four-hour cruise thatincludes PD updates, Q&As, and ashipboard buffet lunch. Reservationsfor both may be made by calling412-441-4100.

Vince Gill, one of country music’sfinest singer-songwriters, performedto a sellout crowd at the ParkinsongNashville, benefiting APDA’s MiddleTennessee Chapter in January. Thiswas the second event of its kind withan artist reception in the CountryMusic Hall of Fame Museum rotun-da, with an auction of a signed Gib-son Les Paul guitar. Chapter presi-dent Fabio Fallico hailed the eventfor creating public awareness as wellas raising funds.

Dallas is gearing up for its seventhannual Parkinson’s golf classic. Theall-day event, which includes not justgolf but also a silent auction, recep-tion and educational fair, and Mexi-can buffet at the Brookhaven Coun-try Club, is one of the NortheastTexas Chapter’s most popular events.

More information is available at 214-378-2732.

The rain wasn’t going to ruin theirparade in California! Last month theGreater Los Angeles Chapter had amost successful walk, despite fourdays of torrential rain. n

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There will be at least five new faces at thisyear's coordinators’ annual meeting inPhiladelphia in July.

APDA’s newest I&R Center at Banner GoodSamaritan Hospital in Phoenix is being co-directed by movement disorder specialistsDrs. Johan Samant and Padma Mahant.Thomas Viviano, who has a degree in bio-logical sciences and secondary education, isthe coordinator. In addition, Tom has beena pharmaceutical representative and execu-tive director of a medically oriented not-for-profit organization.

The Stanford, Calif. Center happily wel-comed Martha Gardner, RN, BSN, aftermore than a year without a coordinator.Martha is a healthcare professional withbroad interests and background, most re-cently providing patient care in an interme-diate ICU. She also has experience in patientassessment, teaching and communications.

Kristine Twomey, RN, BSN is replacingCheryl Thelen in Neenah, Wis. Kristine’s ex-perience includes performing telephonetriage with neurological and neurosurgicalpatients for a neuroscience group, patientassessment and patient and family educa-tion.

In St. Louis, where Susan Levin was coordi-nator for more than 20 years, Jan Meyer isbeginning her tenure. Jan, in addition toher people and organizational skills, bringsyears of experience in project development,public relations and creative programs.

While not really new to APDA, KathleenPear, LGSW, is in a new role as interim co-ordinator in Baltimore. Kathy is a clinical so-cial worker with emphasis on providingservices to clients and their families. n

APDA WELCOMESFIVE NEW

COORDINATORS APDA chapters, centersand support groups across theUnited States did their part inmaking April 2006 a mostsuccessful Parkinson’s Aware-ness Month. Across the coun-try governors, mayors and lo-cal officials presented procla-mations to heightenawareness of the dis-ease and recognize theefforts of all those whoare working to ease theburden and find thecure.

In Mississippi, Gov.Haley Barbour issueda proclamation, as didMayor Johnny Dupreein Hattiesburg, Mayor RogerHerrin in Purvis, and MayorNancy Chambers in Forest.Coordinator Brenda Allredalso reported statewide newsstories including a feature arti-cle in the Vicksburg Post.

Tennessee mayors KeithMcDonald of Bartlett, TerryJones of Millington and Dr.

Willie Herenton of Memphisall proclaimed April as Parkin-

son’s Disease AwarenessMonth.

Gov. Sonny Perdue had aprivate meeting with GeorgiaChapter president CarolPalmer, I&R Center coordina-tor Mary Louise Weeks, andGlen Rapp, representing early

onset patients for his signingof a proclamation.

Maine coordinator LillianScenna not only received wordfrom the president of the statesenate, Beth Edmonds, that aproclamation was beingsigned, but also was invited tobe present when the Parkin-son’s Joint House and Senate

Resolution was passed. In Texas, Mayor Ron

Silva issued a procla-mation from the city ofCollege Station, andDallas Mayor LauraMiller delivered herproclamation to DallasChapter PresidentBeth Moody and FredGreene, APDA’s thirdvice president. Mayor Kennedy

O’Brien added recog-nition of APDA’s con-tributions to the resi-

dents of Sayreville, N.J. in hisproclamation. n

PARKINSON’SAWARENESS ACTIVITIES

Georgia’s governor signs proclamation.

Shannon Massey receives proclamation from Mayor McDonald.

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ntil recently little has been writ-ten regarding the effect that gen-

der has on the development and man-agement of Parkinson’s disease (PD).Current research has focusedmainly on the impact thatsex hormones have onthe development ofParkinson’s disease.Less has been writ-ten on the impactthat PD has onm e n s t r u a t i o n ,pregnancy andmenopause. This ar-ticle will review themost recent informa-tion on both the effect thatParkinson’s disease has on womenand the impact that gender has on PD.

While PD is usually thought of as adisease of the elderly, approximately 3to 5 per cent of women diagnosed withthe disorder are under the age of 50. Alarge number of these women are stillexperiencing regular menstrual cycles.Studies that have reviewed the effect ofhormone fluctuations and menstrua-tion on PD have noted an impact of themenstrual cycle on disease control.During menstruation women describedincreased Parkinson symptoms, de-creased medication responsiveness andincreased “off” time. They also com-plain of increased fatigue, cramps andheavier menstrual flow. This can leadto occasional humiliating self-care is-sues due to worsening dexterity. Pre-menstrual symptoms of depression,bloating, weight gain and breast tender-ness also appear to increase in intensityin women who note a variation in theirsymptom control with menstruation.Usually these symptoms improve aftermenstruation, but will reoccur witheach cycle. A small sample of women inthe studies used birth control pills.They reported that they had less intense

fluctuations in their symptom control,but more research needs to be done be-fore recommendations can be made.However, it is important to recognize

that these fluctuations occur sothat women can be pre-

pared for the changes incontrol. The use ofregular exercise andrelaxation tech-niques can help de-crease symptomsand improve cop-ing abilities.

There havebeen only a limited

number of pregnanciesto women with PD report-

ed. The data have been dividedinto the impact that pregnancy has onPD and the effect that PD has on preg-nancy. There is an increase in both mo-tor and non-motor symptoms duringpregnancy although it is rarely signifi-cant enough to impact the women’soverall level of functioning. Non-motorsymptoms (such as fatigue, constipa-tion and depression) seem to improveafter delivery but any pro-gression of motor symp-toms rigidity, slownessof movement andtremor usually per-sists. While datahave shown thatincreasing lengthof estrogen expo-sure (the amount oftime from puberty tomenopause) decreasesthe risk of developingPD, increasing amount oftime spent pregnant seems to increasethe risk of developing Parkinson’s dis-ease. This seems contradictory but maybe due to differences in the effect thatestriol (the pregnancy form of estrogen)and estradiol (the menstrual form of es-

trogen) have on the disease.The main concern of pregnant

women with PD is the risk of birth de-fects from antiparkinson’s medications.The dopamine agonists, bromocriptineand pergolide are considered relativelysafe during pregnancy but make it im-possible to breast feed because theyblock milk production.

The remainder of the antiparkin-son’s medications carries a category Crating, meaning that animal studiessuggest some risk, but human studiesare not available or have not confirmedthat risk. The data on levodopa eitherwith or without carbidopa suggestsome risk in animal studies, but therewere no reported birth defects in new-borns in the small number of pregnan-cies reviewed. Amantadine is the onlyantiparkinson’s medication that has re-sulted in heart malformations in babieswith first trimester exposure. Therewere no reports of major malformationswith the use of Selegiline (Eldepryl®)and there are no data available so far onthe COMT inhibitors.

Women with PD do not have trou-ble with fertility, but can have

changes in self-image thatlead to social avoidance

and difficulty withsexual intimacy.This can lead to de-creased pregnancyrates and sexuald y s f u n c t i o n .

Women who do be-come pregnant must

then face the challengeof caring for a child post-

partum. The AmericanParkinson Disease Association offers re-sources and helpful staff to provide in-formation and support regarding preg-nancy and parenting issues related toPD. Establishing a support system andplanning are critical to being an effec-

Parkinson’s Disease In Women

UBy Susan M. Rubin, MD

continued on page 10

10

Parkinson’s Disease In Women continued from page 9

tive parent, especially if you have a pro-gressive disease.

It has been noted that women aremore likely to develop PD later thanmen and usually when they are post-menopausal. Basic science re-search with rats has shownthat there is an increasein the slow decline indopamine-produc-ing cells coincidentwith menopause.Use of hormone re-placement in ratsthat have had theirovaries removedseems to reverse thatincrease. However, stud-ies in women have hadcontradictory results showingonly partial or no benefit from hor-mone replacement, since the animalstudies have shown a difference in ben-efit based on the timing of the hormonesupplementation. The rats who received

hormone supplements within 10 daysof having their ovaries removed had noincrease in the loss of dopamine pro-ducing cells, while rats that did not re-ceive estrogen until 30 days later did

lose cells more rapidly. They didnot see any benefit from the

supplements in the ratswho received them lat-

er.The few studies

that have comparedthe impact of hor-mone replacementtherapy on disease

progression havebeen mildly positive.

Women on hormone re-placement reported more

“on” time and lower UPDRSscores than non-estrogen users. Unfor-tunately the number of women studiedis too low to support the use of hor-mone replacement at this time. Thebenefits still need to be weighed against

the risks recently reported in theWomen’s Health Initiative study.

In conclusion, we are beginning tounderstand the impact of sex hor-mones on the development and pro-gression of PD. Recent studies suggestthat there is an inverse relationship be-tween lifetime estrogen exposure andthe risk of developing PD. It has alsobeen shown that fluctuations in hor-mone levels will result in changes indisease control and result in the needfor changes in symptom managementduring menstruation, pregnancy andmenopause. Hopefully, we will gainfurther understanding which will leadto new treatment options for womenwith PD.

For more information contactAPDA Young Onset Parkinson’s Dis-ease Center at (847) 657-5787. n

This article originally appeared in the Winter 2005Issue of the APDA Young Parkinson’s Newsletter.

than LD/CD, and they can cause sleepattacks and compulsive behavior.

Add selegiline (Eldepryl®), which,like entacapone and tolcapone,

slows the excretion of LD/CD and mayhave other effects.

Advantages: It is usually used once orat most twice per day. It may have along-term protective action in PD.

Disadvantages: Modest effect onfluctuations; it may cause or aggravatedyskinesias or hallucinations.

Substitute a longer-acting form ofLD/CD (LD/CD ER or Sinemet

CR®). It turns out that this does notwork, as well as logic would suggest,and it can prolong the dyskinesias orhallucinations that occur during the

“on” state. Also this form takes longerto start acting, a problem if one is “off ”at dosing time. The elderly may notabsorb this form of LD well — espe-cially in its generic form.

Use injectable apomorphine(Apokyn®). This drug, a

dopamine agonist like pramipexole andropinirole, must be injected under theskin using a semi-automatic, nearlypainless injector device.

Advantages: Starts to act in 15 min-utes rather than the 30 typically re-quired by other medications.

Disadvantages: Cost; works for onlyone hour; you must take an oral med-ication every day to prevent the vomit-ing that apomorphine causes duringthe first few months of use.

Dietary protein manipulation:Taking LD/CD with protein-con-

taining food will prolong its action,possibly preventing that dose fromwearing off. If you are “off ” at dosingtime, taking LD/CD on an emptystomach will speed the drug’s onset ofaction.

New medications are being devel-oped to address motor fluctuations.These include drugs in patch form andoral medications that act on the brainin ways different from existing drugs.

It is important to recognize fluctua-tions and to report them to your neu-rologist so that your lifestyle and activi-ties do not have to suffer unnecessarily.

Fluctuations are one of the mosttreatable of PD’s complications. n

Motor Fluctuations continued from page 1

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The American Parkinson DiseaseAssociation (APDA) Informationand Referral Center in Omaha, Ne-braska is exploring a new frontierin Parkinson’s education. On Janu-ary 27, 2006, the APDA Informa-tion and Referral Center hosted itsfirst teleconference which wasbroadcast live to ten different sitesvia the Nebraska Statewide Tele-health Network. The sites wereAtkinson, Columbus, Fairbury,Grand Island, Kearney, Lincoln,Norfolk, North Platte, Omaha andYork. All participating locationswere able to hear and see Dr. JohnBertoni, the speaker and MedicalDirector of the APDA Center, aswell as interact with questions andanswers. While there were a fewproblems to be worked out, overallthe teleconference was a successand a total of 149 people partici-pated in this event.

The Telehealth Network’s signifi-cance is that it will allow the APDAInformation and Referral (I & R)Center located in Omaha to go tothe rural and remote areas of Ne-braska so they can participate inmuch needed Parkinson’s educa-tion and training. It will enable toutilize expert medical professionalsin the local area, which, in turn,will benefit all of Nebraska via theTelehealth Network. It will allowthose patients who are unable totravel long distances to receive

PD & THE NEBRASKATELEHEALTH NETWORK

11

ching and cramp-ing of the feet are

common complaints,often occurring after in-jury (strains andsprains), excessive exer-cise or in associationwith arthritis or poorcirculation in the legs. In Parkinson’s dis-ease (PD), cramping of the feet is alsovery common, but the cause is centralrather than peripheral. Foot cramping isjust one of several focal dystonias — ab-normal, sustained tightening of muscles— that appear to be due to neurochem-ical abnormalities in the basal ganglia,the part of the brain involved in PD.

Patients show a particular type ofcramping characterized by downwardclenching of the toes or inward turningof the foot. Cramping can occurthroughout the day or night, and can beespecially annoying when interferingwith sleep. Foot cramping is more com-mon among those individuals in whichPD affects just one side of the body.Dystonias are often mistaken for othercauses of muscle cramping. Patients withdystonias may be entirely unaware of anyParkinsonism; indeed, muscle crampingcan precede the onset of Parkinsoniansymptoms by years.

There are no laboratory tests that candistinguish dystonia from other causes ofcramping, although a thorough neuro-logic examination and specialized testsshould pinpoint the cause. Some dys-tonic features — such as blepharospasm(involuntary closing of the eyelids) ortorticollis (involuntary turning of theneck) — are common in the generalpopulation. In the PD patient receivinglevodopa/carbidopa (Sinemet®), focaldystonias may be caused by either toomuch of the drug or too little. Patientsmay experience dystonia when peakdrug levels are attained one or two hours

after administration, orhours later when drugeffects wear off.Changing the dose ordosage schedule ofSinemet, or using thesustained-release formu-lation (Sinemet CR®)

may help. The monoamine oxidase Binhibitor selegiline (Eldepryl®) may alsohelp. A bedtime dose of Sinemet CR,pergolide (Permax®), or bromocriptine(Parlodel®) may prevent foot dystoniaduring early-morning hours. Some pa-tients respond to anticholinergics such astrihexyphenidyl (Artane®), muscle re-laxants such as cyclobenzaprine (Flex-eril®) and baclofen (Lioresal®) and theanticonvulsant clonazepam (Klonopin®).

Another treatment giving excellent re-lief is botulinum toxin (Botox®). Inject-ed into the dystonic or cramping muscle,botulinum toxin reduces the intensity ofthe spasms, and the effects may lastmonths after injection. The toxin is alsoused for Parkinsonian tremors, benignessential tremor, and a number of dysto-nias not always associated with PD.These include blepharospasm, torticollis,dysphonia (cramping of the vocal cords),strabismus (wandering eye), stuttering,and large-muscle spasms associated withconditions such as stroke, head trauma,and multiple sclerosis.

A careful evaluation of the time rela-tionship between foot cramping and thelevodopa dosage schedule should helpthe physician decide how best to treatthis uncomfortable manifestation of PD.Modifying the levodopa regimen oradding other anti-PD agents can altersignals from the brain that trigger thecontraction, or the muscle itself can be“paralyzed” with botulinum toxin. n

Abstracted from an article published in the APDASummer 2005 Nashville Chapter Newsletter.

Foot Cramps in Parkinson’s Disease

A

continued on page 12

By Lisa Brovold, Coordiantor APDA I&R Center, Omaha, NE

12

Information on Parkinson’s Disease

Materials concerning the research in the field of Parkinson’s

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

information of the reader and should not be used for treatment

purposes, but rather as a source for discussion with the

patient’s health provider.

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

EDUCATIONAL BOOKLETS1. Basic Information about Parkinson’s Disease

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

THE PRINTING AND DISTRIBUTION OF THIS NEWSLETTER WAS PARTIALLY SUPPORTED BY A GRANT FROM GLAXOSMITHKLINE.12

quality information in their ownhome town.

The cost to provide this quality ed-ucational program is minimal.Most of the host locations do notcharge a fee as long as their tech-nician does not have to stay forthe entire conference and the pro-gram is run during regularlyscheduled business hours. Thesupport group facilitator at thatlocation greets the attendees andhas been trained to assist with themicrophone. Since the majority ofthe speakers are from Omaha orthe surrounding area, there is nocost for travel expenses or hono-raria.

The Information and Referral Cen-ter held three additional telecon-ferences in April in observation ofParkinson’s Awareness Month. Dr.Kenneth Follett from the Universi-ty of Nebraska Medical Center,spoke on “Deep Brain Stimula-tion” on April 6th; four patientsand one caregiver presented aFirst Person Parkinson Perspectivepanel discussion on April 21st, andPatricia Gill, MS, CCC, lectured on“The Effects of Parkinson’s onSpeech and Swallowing” on April28th. n

PD & THE NEBRASKATELEHEALTH NETWORK

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