1

The American Parkinson Disease Association

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

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

Vincent N. GattulloPresident

Joel GerstelExecutive Director

INDEX

Questions for Your Neurologist P. 1

President’s Message P. 2

Essential Tremor and PD P. 2

Q&A P. 4

F.Y.I. P. 5-8

Be Aware of Fluid Loss P. 9

NIH Studies P. 9

Electrical Stimulationfor Swallowing Disorders P. 10

Scientific Advisory BoardAdditions P. 10

Deep Brain Stimulation —A Five Year Study P. 11

Patients Prefer an OrallyDissolving Carbidopa-Levodopa Formulation P. 12

Educational Material P. 12

Main Office:1250 Hylan Blvd., Suite 4BStaten 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 5 N E W S L E T T E R

continued on page 3

n most neurological practices, in-cluding my own, a routine follow-up

visit allows only limited time for ques-tions and answers. After my patient tellsme about the progress of symptomssince the previous visit — and I ask myown questions, sort out and record theanswers, examine the patient and issuerecommendations, — the time avail-able for the visit has pretty muchrun out.

But if my patientarrives with a writ-ten list of ques-tions, I can pacethe encounterto allow time forthem. If I just readthe list myself, I can an-swer them in a logical and re-laxed fashion as the visit proceeds.

Now the hard part: What questionsdo you ask your neurologist? Of course,some questions will be determined byyour symptoms and how much infor-mation you have gleaned from othersources such as books, reliable Web sitesand newsletters from reliable organiza-tions such as the APDA. But here arefive questions that many people withParkinson’s disease (PD) might consid-er asking about their treatment:

Am I on enough medication?PD medication should not be

started until the symptoms start to in-terfere with daily activities, or slow theactivities to the point that compensat-ing for the slowness amounts to a bur-den. It is logical, then, that the treat-ment’s dosage should be adequate to

lift this burden or interfer-ence. Many neurol-

ogists however,in their desireto avoid side ef-

fects, under-treatPD.

As the illnessapproaches its ad-

vanced stages, attemptsto increase the medication

dosages to an effective level result inunacceptable medication side effects,and this causes many neurologists togive less than effective dosages.

Many of these drug side effectssuch as dyskinesias and hallucinationscan be dealt with in other ways. Inmany cases, in fact, the patient prefersmild or moderate dyskinesias to “off”periods, and the neurologist shouldrecognize this and tailor the medica-tion dosages accordingly.

Some Questions to AskYour Neurologist

About Your PD TreatmentBy Lawrence I. Golbe, MD

Dept. of Neurology, UMDNJ-Robert Wood Johnson Medical SchoolNew Brunskwick, N.J.

1I

Dear Reader,I think it is most appropriate that Parkinson’s Awareness Month

comes in the spring, because spring is the season of hope. APDA’s original objectives, to heighten the country’s aware-

ness of the disease and to raise funds for research, have grownwell beyond its founders’ greatest aspirations, and today we areproud of our role as the international leader in PD educationand awareness.

Through nationwide walk-a-thons and a myriad other special events at which literatureis disseminated, educational lectures and symposia, and a library of free publications on allaspects of the disease in English, French, Spanish, Portuguese, Chinese and Italian, APDAis the principal national and international source of information about the disease. Indeed,approximately one quarter of our expenses (50 percent, if you add our Information & Re-ferral Centers) are for educational programs.

In 1994, APDA formalized a working relationship with the Associazione ItalianaParkinsoniani (AIP), a small organization of 3,000 Italians with PD, caregivers, friends andmedical professionals. Today AIP has 23 offices across Italy, more than 25,000 members,sponsors annual national conventions for patients and their families, and has recently es-tablished a Young Onset Parkinson’s Group.

Upon their collaboration, the two organizations established an Electronic Internation-al Parkinson’s Disease Resource Guide with 13 initial participants, which has grown to be-come the 25-member World Parkinson Disease Association.

In recent years, as the public learned that some very visible persons in highly respectedand responsible positions were persons with Parkinson’s, there evolved a greater under-standing of the condition and respect for those with it. Add to that insight, new drug ther-apies, successful surgical interventions, and the growing areas of research, we have reasonsto look toward a brighter future.

In this issue you will read about some of the efforts made by volunteers across the coun-try to raise awareness as well as funds for PD research. APDA’s individual Chapters andI&R Centers used their collective talents and energies to package fund-raising and educa-tional activities in fun-filled events.

In addition, their leaderships requested formal proclamations from state and local offi-cials to promote awareness. To name a few: George McHugh, president of the GraniteState Chapter arranged for New Hampshire Gov. John Lynch to issue and present a“World Parkinson Awareness Day” proclamation last month, and Dianne Johnson, RN,San Antonio, Texas, coordinator, led a bus filled with patients and caregivers to City Hallto receive a proclamation in March. Florida’s Suncoast Chapter, led by Ginna Bernard,arranged for endorsements by Gov. Jeb Bush.

New Mexico’s chapter president Bob Dunagan and his wife, Charlene, who was diag-nosed in 1979, sent 123 solicitations to more than 20 major tribes or pueblos in NewMexico, as well as to New Mexico Gov. Bill Richardson. Among the nations contacted,each with its own governor, were the Navajo, Mescalero Apache and Jicarrilla Apache.

In FYI, you will read a poem written by 9-year-old Bernadette Bianchi from Coloradofor her grandmother. It falls into the “out of the mouths of babes” department.

We all wish you a happy spring filled with the hope and promise of more than perfectweather and gardens.

Sincerely,

Vincent N. Gattullo President

P R E S I D E N T ’ S M E S S A G EESSENTIAL TREMOR

AND PD OFTEN CONFUSED

By Melissa Houser, MDScripps Clinic, La Jolla, Calif.

Tremors occur in a variety of illnesses,but two common neurological condi-tions associated with tremor areParkinson’s disease and essentialtremor. Although these two disor-ders differ in many ways, doctors andpatients sometimes confuse them.

Essential tremor may begin quiteearly, even in childhood, but mostpeople notice it becoming a nuisancein their 50s, and it may worsen withage. The tremor often involves thehands, head and voice.

The hands may shake when per-forming any simple action. Generally,if the hands are not moving, thetremor is absent (but there are ex-ceptions to this rule).

The cause of essential tremor isunknown, although there is a stronghereditary component — so much sothat many doctors use the term “fa-milial tremor.” This tremor disorder isgenerally considered benign becauseit is not associated with a progressiveneurological illness leading to signifi-cant disability.

Many people with severe forms ofthe tremor find eating or drinkingwithout spillage impossible. Theymay experience depression, embar-rassment and subsequent social isola-tion. For a person who requires verysteady hands to perform a job, or forthose in the public eye, the tremorcan, indeed, lead to disability.

The good news is that this tremorcan be treated. Although there is no“cure” for essential tremor, severalmedications may help alleviate it.Most physicians usually prescribe oneor two drugs to help; a blood pres-sure drug called propanolol (Inderal®)and/or an antiseizure drug calledprimidone (Mysoline®).

Some patients take the medica-tion daily, but some may reserve tak-ing the drugs for a certain need, such

2continued on page 9

Would a dopamine agonist bebetter than carbidopa/levodopa(Sinemet®) for me?In general, patients who are

younger than 65 or 70, have no think-ing difficulties and are in the earlystages of PD do better on “dopaminereceptor agonist” drugs such as per-golide (Permax®), pramipexole (Mi-rapex®) or ropinirole (Requip®) thanon carbidopa/levodopa (Sinemet® orParcopa®). This is because the agonistsare less likely to produce involuntarywrithing or bobbing movementscalled dyskinesias. It is true that theagonists are more likely to cause hal-lucinations and are less effectiveagainst the movement symptoms ofPD, but these drawbacks are lessprevalent in younger patients.

Am I on unnecessary treatmentfor dose-related fluctuations?About half of all patients with PD

of five years’ duration develop dose-related fluctuations on Sinemet treat-ment. This is where the effectivenessof a dose, which is usually twice a dayat the onset, starts to wear off beforethe next dose. There are several waysto deal with this, including:

■ Creating a third dose at midday.■ Adding a “COMT inhibitor” such

as entacapone (Comtan®) or tol-capone (Tasmar®).

■ Adding an “MAO-B inhibitor”such as selegiline (Eldepryl®) or thesoon-to-be-released rasagiline.

■ Adding amantadine (Symmetrel®).■ Adding a dopamine agonist.■ Using a combination of these.

Note that a PD drug that recentlyentered the market, Stalevo®, is merelya combination of carbidopa/levodopa(Sinemet) and entacapone (Comtan).It therefore, should be used only in pa-tients who have experienced an unac-ceptable “wearing-off” effect.

Nevertheless, it is being prescribed(unnecessarily, in my opinion) bymany physicians for anyone with PDwhose response to levodopa/car-bidopa is inadequate, or even as an

initial treatment years before “wear-ing-off” is likely to occur.

Some of the experts believe that se-legiline (Eldepryl®) can slow the long-term loss of dopamine-producing braincells in addition to whatever effect ithas on the immediate symptoms. Ifyour neurologist is in agreement withthis minority (but legitimate) view,then there is reason to have that drug aspart of any PD regimen.

Is some of my difficulty from unrecognized dose-related fluctuations?This is the opposite of the previous

question. Many neurologists fail toask if the PD symptoms fluctuate overthe course of the day in a pattern cor-responding to the medication dosetimes. The patient may just assumethat any hour-by-hour fluctuations inmedication effect are “normal” and ir-remediable. If you are having difficul-ty with some of your activities, askyourself whether that problem tendsto develop toward the end of the in-terval between PD drug doses and im-proves about a half-hour after the nextdose. If that is the case, one of theanti-fluctuation measures listed abovemay be for you.

Is there any way to prevent thenausea or loss of appetite that myPD medications cause?About 10 percent of people with

PD experience nausea or loss of ap-petite as a side effect of dopaminergicmedications (i.e., carbidopa/levodopaand the agonists). While this side ef-fect usually disappears in a few weeksor months, it can be so severe as toprevent use of the drug. Many neu-rologists are unaware that there arethings that can be done for this. First,if the nausea is caused by carbidopa/levodopa, adding additional car-bidopa (which is represented by the“25” in “25/100”pill) can preventnausea. Levodopa alone causes nauseain nearly everyone, and the carbidopacomes in the tablet to prevent this.

But some people need more car-bidopa (I always use the 25/100 com-bination rather than the 10/100 toreduce the chance of encounteringthis situation.) Plain carbidopa ismarketed as 25 mg tablets called Lo-dosyn®, so by adding three or fourdoses per day to accompany the car-bidopa/levodopa in such patientsusually succeeds in preventing thenausea. The supplemental carbidopacan usually be discontinued in amonth or two.

Another option is to prevent thenausea with domperidone (Motili-um®), which is given a half hour be-fore each dose of the offending PDmedication. It is not available in theUS, but can be ordered by mail fromCanada. It blocks the action ofdopaminergic drugs in the brain’svomiting center but not in its move-ment center. Anti-nausea drugs avail-able in the U.S. such as prochlorper-azine (Compazine®) and metoclo-pramide (Reglan®) block both areas,which means that they can make themovement abnormalities of PD muchworse. The drug trimethobenzamide(Tigan®) is slightly less effectiveagainst nauseabut also lesslikely toaggravatePD symp-toms. ■

3

Some Questions to Ask Your Neurologist about Your PD Treatment continued from page 1

2

3

4

5

4

I have had Parkin-son’s disease for12 years. I am do-ing well but with

occasional episodes when the roomseems to get hot and I becomesweaty. At other times when I amstanding, I find myself swaying. I amtaking Requip 2 mg at 8 am, 1 pmand bedtime and Sinemet 25/100every three hours while I am awake.Any suggestions?

You areh a v i n gf l u c t u a -tions in

response to your medications with“off” periods characterized by sweat-ing and “on” dyskinesia character-ized by swaying. You should increaseyour Requip so that you take it withevery dose of Sinemet, reduce yourSinemet to half and add 1/2 of aControlled Release Sinemet 50/200and 1/2 to 1 whole Comtan everydose. This should help.

I am very slow inthe morning untilfive hours after Ibegin my medica-

tion. I am taking Comtan 200 mgand Controlled Release Sinemet50/200 at 8 am and 2 pm. Whatshould I do?

Y o us h o u l dadd someimmediate

release Sinemet. There is a newpreparation called Parcopa which isan orally dissolving L-Dopa prepara-tion with quick onset of action in 5-10 minutes in most patients.

My neurologisthas tried me onRequip and Mi-rapex. Both of

these medications made me verysleepy all day long and did not helpme. I am afraid to start Sinemet be-cause I heard it will only work for afew years. What should I do?

Immediater e l e a s eS i n e m e tonly works

smoothly for three to five years. Thecontrolled release preparations of L-Dopa and Comtan work smoothlyfor many more years and can be tak-en with small amounts of immediaterelease Sinemet. There has neverbeen demonstrated a deleterious ef-fect on disease progression by takingL-Dopa. That being said, I am a firmbeliever in the use of dopamine ago-nists because I feel that these medica-tions are able to keep the areas of thebrain that need dopamine healthierfor longer periods of time. Further-more, dopamine agonists should pre-vent the stress on the neurons which

are trying to make more dopamine.Permax (pergolide) is still a very ef-fective dopamine agonist with littlesedation. Although it is true thatrarely at high doses patients could de-velop ergotism, the vast majority ofpatients in my practice do very wellon this dopamine agonist. I wouldgive it a try.

My husband hasbeen doing wellwith PD for sev-eral years but

thrashes around the bed during thenight sometimes almost hitting me.He does not remember anythingwhen he wakes up. He tells me hehad no nightmares. The doctor saidnot to worry about it. What do youthink?

D u r i n gdreaming,p e o p l ew i t h o u t

PD are inhibited from movement bytheir brain. In patients with PD, thisinhibition is lessened so that if a pa-tient dreams of running, he may ac-tually move his legs. If he dreams ofusing his arms, he may actually movehis arms. You could try lowering thelast medication dose of the day, butin itself, the thrashing is not a prob-lem except to the partner in bed. ■

Q:&Questions Answers

A:

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

Q:

A:

Q:

A:

Q:

A:

Prophets traditionally are not recog-nized in their own lands, but itwould be difficult for Missouri to ig-nore the accomplishments of its na-tive son, Joel Perlmutter. Born andraised in St. Louis, he left only toearn his undergraduate degree fromPrinceton University in New Jersey,complete a psychiatry externship atthe Menninger Foundation inKansas, and serve as a visiting re-search registrar at the Institute ofPsychiatry and King’s College Hos-pital in London.

All his other work that has estab-lished him as a physician and re-searcher of national prominence —including being named amongAmerica’s Top Doctors every yearsince 2001, and a page full of otherawards — has been done at Wash-ington University School of Medi-cine in St. Louis.

Dr. Perlmutter’s dedication toPD research is personally as well asprofessionally driven. It was he whodiagnosed his father and his late un-cle, leading to his research commit-ment to find a cure or slow the pro-gression of the disease.

A diplomate of the AmericanBoard of Neurology and Psychiatryand the National Board of MedicalExaminers, and member of the Mis-souri Board of the Healing Arts, Dr.Perlmutter is also the Elliot H. SteinFamily Professor of Neurology, pro-fessor of radiology and physicaltherapy and associate professor of

anatomy and neurobiology at Wash-ington University Medical School.He also heads the Depart-ment ofNeurology’s Movement DisordersSection.

Dr. Perlmutter served on the Na-tional Institutes of Health’s panel todevise a five-to-10-year plan for PD

research at its National Institute ofNeurological Disorders and Stroke.

In addition to his place on theAPDA Scientific Advisory Board, heserves on the Parkinson StudyGroup.

With 127 peer-reviewed publica-tions, repeated invited presentationsacross the country, and as an ad hocreviewer for 17 professional journals,he is a recognized and respected au-thority in his field.

An avid runner, occasionalmarathoner, and rock star (minerals,not music — in fact, he confessesthat singing is a lesser talent), Dr.Perlmutter also serves his communi-ty by volunteering his time and tal-ents at several eldercare residentialfacilities.

Of all his accomplishments, how-ever, he is proudest of his family, in-cluding his wife, Monica, who is anoccupational therapist also on theWashington U. faculty, two daugh-ters, Lauren, 15, and Anna, 12, anda 10-year old son, Nathan. ■

F.Y.I. is an informational 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 for millions of PWP and their caregivers

across the United States.

SPRING 2005 VOLUME XII NO. IIFYI EDITOR: K.G. Whitford

5

Joel S. Perlmutter, MDAPDA Scientific Advisory Board Member

Enter the magical world

created byFrank Ballard,puppeteer andParkinsonian,

page 8

Dr. Perlmutter finishing a recent Boston Marathon

T.S. Eliot may have said that April isthe cruelest month, but for Parkin-son’s disease research, it is one of thekindest. April is Parkinson’s DiseaseAwareness Month, and manyAPDA Chapters and supportgroups schedule their annual walk-a-thons with proceeds dedicated toPD research. Last year that translat-ed into more than half a milliondollars.

Texas and Florida led off thisyear’s walks on April 2, with a 5Kwalk honoring Dr. John Brady inWaxahachie, Texas, and family-funevents by the South Florida Chapterat Delray Beach, and Lake Countysupport group in Leesburg, Fla.

Food was a big draw the follow-ing weekend. San Antonio, Texas,began its walk in Eisenhower Parkwith a free taco breakfast and had apizza lunch, and the Nashville,Tenn. walk included a barbecue.

The “biggie,” of course, was onApril 16, when the 11th Parkinson’sUnity Walk stepped off in New YorkCity’s Central Park. The walk bringstogether all the organizations work-ing toward a PD cure and attractsmore than 8,000 people fromaround the country. Proceeds are di-vided among the groups and theirresearch program.

Atlanta, Ga. held its walk onApril 16, followed the next day by amall walk in Reno, Nev.

During April’s last weekend, theIowa Chapter held a walk in CedarRapids, the Minnesota Chapter andI&R Center walked around LakeComo in St. Paul, the Brazos ValleyAssociation Chapter had its annual5K Fun Run in memory of CoachTom Chandler in Bryan, Tex, andthe Arizona Chapter had its walk, asdid the Ashville Chapter and sup-port group in North Carolina.

The Long Island (NY) Chapterchose Belmont Lake State Park forits May 7th walk, and San Diegowalked in Mission Bay Park on May14. The Las Vegas Chapter and I&RCenter “New York to Paris” walk onMay 21 isn’t as long as it sounds; it’sbetween the New York Hotel &Casino and the Paris Hotel & Casi-no. The Pittsburgh Chapter roundsout May with its walk at the FourSeasons Ski Lodge.

The following walks are sched-uled through the summer: NebraskaChapter and Northern Utah supportgroup, June 4; Massachusetts Chap-ter, June 12; Midwest Chapter, Sept.10; and Connecticut Chapter, Sept.18.

Consult the APDA Web site,www.apdaparkinson.org, for contactinformation on the current eventspage. ■

6

Destination Discovery Walks Take Place Across the Country

Former U.S. Attorney General Janet Reno, thirdfrom left, shared her experiences in a nationalleadership role as well as her life with PD at theMidwest Chapter’s Symposium 2005, in Chicago.With her at a reception before her speech are JoelGerstel, APDA executive president; MarixineDust, North Central regional representative; Su-san Reese, I & R coordinator; Mary Anne Os-trenga, Chapter president; and Dr. MichaelRezak, the Center’s medical director.

The APDA Tampa Bay, Fla. team broughtthe sunshine to the 11th Annual Parkinson'sUnity Walk in Central Park. The group camein 10th of 270 teams in donations raised inits first attempt. More than 8,000 peoplejoined to walk and raise funds for PD re-search. More than $1 million has been raisedto date.

The Greater Los Angeles Chapter celebrated the results of its efforts for WorldParkinson Disease Awareness Month. Persons with Parknson’s, physiciansand public officials showed off national, state and local proclamations beforebreaking for cake and desserts at the Chapter meeting.

7

Just about everything Frank Bal-lard does has strings attached.

At 5 years old, Frank knew thatthe art of puppetry was to be hislife’s work after his aunt took himto his first puppet show in his na-tive Illinois. What he didn’t real-ize was that he would become anaward-winning master pup-peteer, establish the nation’s firstuniversity degree program inpuppetry, and have a museumnamed for him. Nor did he everexpect to become aperson with Parkin-son’s disease.

Frank and his highschool sweetheart,wife of 52 years, anddevoted assistantAdah Ruth, relocatedto Connecticut in 1956when he joined theUniversity’s School ofFine Arts faculty as ateacher and theatrescenic designer. By1962, he had 12 stu-dents enrolled in a for-mal program that in-cluded the study andapplication in the history, techni-cal aspects, woodcarving, draw-ing, set design, script writing andpresentations of puppet arts. To-day the program has 38 studentsand is under the direction of BartRoccoberton, Jr., one of Frank’sformer students, while as profes-sor emeritus of dramatic arts,Frank directs the magical BallardInstitute and Museum of Pup-petry (BIMP).

The museum occupies its ownbuilding on the university’s cam-pus in Storrs, Conn., and offersnew exhibits every year from lateApril to mid-November. BIMP is

totally volunteer- operated andincludes docent-led tours, per-formances, and workshops forfamilies and teachers. This year’sexhibit includes puppets, draw-ings and art from 20 shows Frankproduced, including the threethat earned the Union Interna-tional of the Marionette’s Awardfor Excellence in Puppetry. Thereis also a “hands-on” room for theyounger set to experiment withcreating their own puppets and

producing a show on a puppetstage.

In addition the museum’s col-lection includes thousands ofmarionettes, rod, hand, shadowand body puppets donated bypuppeteers and organizationswho want to see the art studiedand expanded. It also houses theRufus and Margo Rose Collection,the McPharlin collection, theChrysler Collection of fully-stagedminiature operas, traditionalPunch and Judy characters,Neapolitan marionettes, andpuppets created by Tony Sarge,Bill Baird and many other world-

famous artists.The puppets in this year’s ex-

hibit include string, stick, hand,and rod puppets from Frank’s 20productions. Included are draw-ings, props, scenery and puppetsfrom the1968 production of“Mikado;” Frank’s favorite,“Kismet;” Adah Ruth’s favorite,“The Magic Flute;” the 1980 pro-duction of the “Ring of theNeiberlon,” which was presentedat Kennedy Center in Washing-

ton, DC, and the lastshow, “HMS Pina-fore,” presented in1989.

At age 75, Frankhas faced his PD head-on and continues hismuseum schedule un-interrupted. He sus-pects that continualexposure to toxic ma-terials in his life’s workis responsible for hisdisease and has partic-ipated in a drug trialat Yale MedicalSchool, and is present-ly enrolled in another

at the University of Connecticut.He is also considering deep brainstimulation surgery.

But whatever comes, he is ded-icated to the fine art of puppetry,which over the years he hasheard denigrated and dismissedas not being art at all. “No hasany idea of the influence of pup-petry,” he says, and is quicklyjoined by Adah Ruth, who says,“Everything stems from pup-petry.”

The museum is open Friday –Sundays, noon to 5 pm and canbe seen at www.bimp.uconn.edu. ■

Master Puppeteer Heads His Own Museum at UConn

Frank and Adah Ruth Ballard introduce some of their friends from his 1968 produc-tion of the “Mikado,” one of exhibits in this year’s Ballard Institute and Museum ofPuppetry at the University of Connecticut.

YOUR’E NEVERTOO OLD...

OR TOO YOUNGDEPARTMENT

The past belongs to the old,and the future to the young,and how hopeful the futurelooks when you learn about theactivities of youngsters whoselives have been affected byParkinson’s disease.

Hot Springs, Ark. I&R co-ordinator Lydia Stevens, hasbeen receiving checks fromAnne and Elizabeth Moses,granddaughters of one of hersupport group participants.The girls, ages 10 and 12, raised$250 selling coffee mugs at arecent fund-raiser.

And in Mancos, Colo., 9-year-old Bernadette Bianchiput her feelings in words for hergravely ill grandmother, Mar-garet, who passed away inMarch. Mrs. Bianchi, who was63 when she died, so loved thepoem that she asked Bernadetteto send it to as many people asshe could so they would knowmore about the terrible disease.Following is Bernadette’s poem,“My Grandma:”

My Grandma used to walkMy Grandma used to talk Now she lays in bed all day, Because Parkinson’s stole her

voice away. Now I read her books.I bring her drinks. I love my grandma, But Parkinson’s stinks.

Bernadette is having a garagesale soon as a PD fund-raiser. ■

APDA welcomed Vicksburg, Miss., tothe Information & Referral (I&R)network recently with the opening ofa Center at the River Region MedicalCenter under the direction of LeeVoulters, MD. Brenda Allred, RN, isthe coordinator.

The Center is the first formal re-source for movement disorders in thestate. Dr. Voulters, a board certifiedneurologist and the only movementdisorder specialist in the state, is a clin-ical assistant professor of neurology atthe University of Mississippi MedicalCenter, and medical director of RiverRegion’s acute rehabilitation unit.Brenda brings more than six years, ex-perience in healthcare management.She is an alumna of Hinds Communi-ty College, Raymond, Miss.

Lisa Brovold, senior administrativeassistant at Creighton University Med-ical Center’s cancer center, has been ap-pointed coordinator of the Omaha,Neb. I&R Center. Lisa has been affili-ated with the university for more thana dozen years in numerous depart-ments including the departments ofmedicine, surgery, and the cardiac carecenter. Her range of experience in-cludes management, editorial coordi-nator, and accreditation compliance.John Bertoni, MD, PhD, director of

the medical center’s movement disor-der clinic, is the I&R Center’s director.

Jessica R. Hahn has been namedcoordinator of the I&R Center at theUniversity of Wisconsin MedicalSchool. Jessica has a bachelor of artsdegree from the university and will beapplying her organizational and mana-gerial skills to the Center. Dr. EdwinB. Montgomery, Jr., a member of theAPDA Scientific Advisory Board and2004 Roger C. Duvoisin, MD, Fellow-ship recipient, is the Center’s director.

Susan Curry, RN, is replacingKaren Rodkey, RN, as coordinator atthe Philadelphia (PA) I&R Center atCrozer-Keystone Health System.Karen served in the position for fouryears. Dr. Norman Leopold, directorof the hospital’s movement disorderprogram, is the Center’s director.

Sylinda Lee is bringing a long listof achievements to the coordinator’sposition in Salt Lake City. In addi-tion to her bachelor of science degreein community health education fromUtah State University, Sylinda has ex-perience as a reporter, was in pro-gram development, health educationcounseling and public speaking. Dr.John Steffens directs the Center atthe University of Utah Health Sci-ence Center. ■

Mississippi Joins I&R NetworkFour New Coordinators Named

Three Events in One Week Keeps New Jersey Coordinator Busy

8

New Jersey I&R coordinator Eliza-beth Schaaf may have set a record fornumber of events presented in oneweek. She began with the 18th Annu-al People with Parkinson’s Disease andFamily Conference in Somerset, onApril 9, an all-day conference. Threedays later, she coordinated a “Meetthe Artist Gallery Show,” receptionand luncheon at the hospital. The af-ternoon event showcased the artistswho contributed to the Center’s verysuccessful calendar featuring the mul-timedia talents of persons with PD.

And to round out the week, Elizabethand Chapter president Bill Lear or-ganized a bus to transport peoplefrom around the area who wished toparticipate in the April 16th Parkin-son’s Unity Walk in New York City’sCentral Park.

Elizabeth is also facilitating a tele-conference support group, which theCenter is providing with DOROT/Caregivers Connections, a not-for-profit organization offering caregiversupport via weekly, one-hour confer-ence telephone calls. ■

ummer will be here soon. Ourbodies adapt to the heat by per-

spiring, and a two percent total lossof body fluids will result in noticeablesymptoms, with the intensity of ac-tivity increasing the rate of loss.

During this time, it is common forParkinsonians to complain of dizzi-ness, lightheadness, and sometimeseven fainting when changing bodypositions.

This is especially true for thosewho do not drink a significantamount of fluids during hot months.Parkinson’s diseasecan affect the auto-nomic nervous sys-tem, which regulatesblood pressure, and thiscan add to the problem.

This condition, calledpostural hypotension (dropin blood pressure uponstanding), may not be recog-nized by a routine blood-pres-sure test in a sitting position.

Many times the conditionis exaggerated by anti-Parkin-son medication, i.e. Sinemet®,Permax®, Stalevo®, Requip®,Mirapex® and Eldepryl®. Sero-quel® and Clozaril®, used totreat hallucinations oftencaused by dopaminergic med-ications, can also decreaseblood pressure.

The term “dizziness” frequently isused loosely. For example, someParkinsonians complain of “dizzi-ness” when walking. This may be re-lated to an unstable gait rather thanto low blood pressure. Feeling dizzy,light-headed or woozy when gettingup or changing positions may helpdifferentiate this symptom.One of the dangers of experiencingpostural hypotension is difficulty inbalance with subsequent fallingand/or fainting. Precautions, there-fore, need to be taken to minimizethe effects of hypotension, especially

during hot summer months.If you are experiencing dizziness or

light-headedness when changing po-sitions, inform your physician. Thefollowing recommendations may behelpful: Check for postural hypoten-sion by taking your blood pressure ina sitting, and then in a standing posi-tion. Add salt to your foods to main-tain blood volume. Pickles, pretzelsand V8 juice are some items high insodium. Change positions slowly.Dangle your feet or sit at the edge ofyour bed for a few minutes prior torising. Drink plenty of fluidsthroughout the day, aiming for a pint

(16 ounces) per waking hour.Remember that ice-tea,

caffeine, and caffeine so-das serve mainly as a di-uretic. Wear elastic sup-

port stockings. If theblood pressure drop is severe,you may need thigh-highstockings, which should beput on in the morning. Keepthe head of the bed elevated ata 30-degree angle by using ex-tra pillows or adding blocksunder the legs of the head ofthe bed. Some-times an electricbed may be needed.

Many times patientsmay need a blood-pressure orfluid-pill adjustment from

what they have been on for manyyears. The physician may also need toadd medications to aid in maintain-ing blood pressure, such as Proama-tine® or Florinef®. An adjustment tothe anti-Parkinson medications mayalso be required.

To all of you avid gardeners,golfers, and tennis players, enjoy thesummer, but do not stay in the heattoo long without plenty of fluids! Besure to rest often, wear sunscreen, andkeep water bottles on hand at alltimes. ■

Article originally published in the Spring 2004 Is-sue of Parkinson’s & Us, Atlanta, GA.

By Nancy Watts, R.N.

Be Aware of Fluid Loss

9

Sas a speaking engagement. If theseare ineffective or produce too manyside effects, the doctor may try otherdrugs. Alcohol also reduces thetremor, and some find a glass of winebefore dinner makes eating easier;however, this approach naturally hasits limitations.

Botulinum toxin (Botox)® injec-tions are sometimes used for headand arm tremors. There is also a sur-gical procedure called deep brainstimulation that helps in reducing, oreven eliminating essential tremor.

Whether you have essentialtremor or Parkinson’s disease, the fu-ture looks hopeful. Research in bothareas is promising and effective, andtreatment is available for both condi-tions. ■

TREMOR AND PDcontinued from page 2

NATIONAL INSTITUTES OF

HEALTH RESEARCHON PARKINSON’S

DISEASEGenetic Studies: If you have Parkin-son’s and know of two or more mem-bers of your family with it, NationalInstitutes of Health (NIH) scientistsare looking for genes that may leadto Parkinson’s disease. If you are in-terested in participating or have anyquestions, please call Aideen McIner-ney-Leo at the toll-free number: 1-888-226-6249, or 301-402-0160

Multicenter Clinical Trial: The Na-tional Institute of Neurological Disor-ders and Stroke (NINDS) offers a sec-tion of its Web site devoted to patientrecruitment for the NeuroprotectionExploratory Trials in Parkinson’s dis-ease (NET-PD) clinical research studies.The NET-PD page will be featured un-der the Highlights section on theNINDS home page at www.ninds.nih.gov. The direct link ishttp://parkinsontrial.org. ■

10

ELECTRICAL STIMULATIONAVAILABLE FORSWALLOWING

DISORDERSBy Steve Glance, MD, CCC

An estimated 15 million adults inthe United States have difficultyswallowing. It is a frequent symp-tom in Parkinson’s disease, stroke,traumatic brain injury, cerebralpalsy and other degenerative andmuscular conditions.

Severe dysphagia can lead to as-piration pneumonia, dehydrationand malnutrition.

Its severity ranges from mild-dis-comfort swallowing to a completeinability to swallow. The symptomsinclude:

■ Coughing when swallowing orafter swallowing

■ Choking on food or liquid■ Feeling as if food is getting

stuck in the throat■ Pain during swallowing ■ Sensation of having a lump in

the throat■ Onset of pneumonia of un-

known origin.Until recently, swallowing problemswere often managed medically. Anew FDA-approved treatment forswallowing disorders uses a smallcurrent, passing through externalelectrodes on the neck. This thera-py must be done by a certified med-ical professional. ■Adapted from the 2004 Fall Issue “Glory B” APDAI&R Newsletter,” Fountain Valley, I&R Center.

MATCHING GIFTSMany companies and corporationswill match your tax-deducible giftand double or triple the amountcontributed to continue the APDAmission To Ease the Burden — ToFind the Cure. Gifts can be in mem-ory of a loved one or friend or tocelebrate a special occasion. A cardis sent to the designated persontelling him or her of your generosi-ty and thoughtfulness. ■

PDA’s Scientific Advisory Board(SAB) added three members at

its May annual meeting in New Jer-sey.

SAB chairman G. FrederickWooten, MD, professor and chair-man of the University of VirginiaHealth Sciences Center’s departmentof neurology, noted that the boardcomposition is designed to representexpertise in all areas of PD research,providing a knowledgeable panel toevaluate research awards.

“Our new members bring awealth of academic, clinical and sci-entific expertise in areas where newresearch is growing,” Dr. Wootensaid.

Laura Marsh, MD, is associateprofessor of neurology at Johns Hop-

kins University School of Medicine,Baltimore, and attending psychiatristin its geriatric psychiatry program.

Un Jung Kang, MD, is the Uni-versity of Chicago Medical Center’sassociate chair of neurology and asso-ciate professor in the departments ofneurology and neurobiology, phar-macology and physiology.

Evan Yale Snyder, MD, PhD, isthe Burnham Institute’s stem cell andregeneration program director in LaJolla, Calif.

The SAB reviews Centers for Ad-vanced Research activity annuallyand evaluates and recommends indi-vidual and fellowship awards to theAPDA board of directors. This yearmore than $2.5 million will beawarded to research. ■

Scientific Advisory BoardAdds Three Members

Dr. Kang Dr. Snyder Dr. Marsh

A

NIH is currently recruiting Parkin-son’s disease patients who experienceabnormal movements caused by Lev-odopa. The compound, ACP – 103,that is being studied can change thespread of certain brain signals. A totalof 46 healthy males and eight subjectswith Parkinson’s has received the

drug. The study is eight weeks long,one overnight each week. Transporta-tion can be arranged.

For more information contactCaroline Jackins, RNC, phone: (301)451-2069 or (800) 362-3479 or(301) 496-4604, e-mail: JackinsC@NINDS.NIH.GOV. ■

NIH Clinical Study

11

eep brain stimulation (DBS) isone of the most significant ad-

vances in the treatment of Parkinson’sdisease (PD).

Scientists who pioneered the tech-nique have published findings of afive-year study in the Nov. 13, 2003issue of the New England Journal ofMedicine. In the study, Dr. PaulKrack and associates at the Universityof Grenoble followed 49 patientswith a median age of 55 who had bi-lateral stimulation of the subthalamicnucleus performed between 1993-1997.

The study found that at five yearsfrom implantation, tremors had im-proved by 75 percent, rigidity by 71percent, and akinesia by 49 percentwhen patients were in the “off-med-ication” state, meaning they were nottaking levodopa, the standard drugtreatment for Parkinson’s disease. Pos-tural stability and gait improved, andthe percentage of those experiencingpainful dystonia while off medicationwas reduced from 71 percent beforesurgery to 33 percent at five years af-ter surgery.

When patients were assessed in the“on-medication” state, the durationand severity of dyskinesias decreasedat one year after surgery and re-mained stable at five years.

Because stimulation settings werestable after the first year and through-out the study, these findings indicatethat patients do not develop a toler-ance to stimulation, and that the pos-itive response can be sustained forfive years.

According to Dr. Krack, this meansthat after five years, the stimulation isstill effective and the parameters arestable over time.

Dr. Lang, a professor of neurologyat the University of Toronto whowrote an accompanying editorial to

the study, concurs with Dr. Krackthat the study shows that DBS resultsin long-term benefits of greater thanfive years to all of the features ofParkinson’s disease that respond wellinitially to this therapy. Its major ad-vantage is the pronounced improve-ment seen in motor complications ex-perienced with long-term levodopatherapy off periods is reduced andlevodopa-induced dyskinesias is im-proved. Tolerance does not occurwith deep brain stimulation in thatthe amount of current required did

not gradually increase over time.Despite these findings, Parkinson’s

disease continues to progress in thosewho have undergone DBS in muchthe same way as it does in those whohave not had the procedure.

Speech improved during the firstyear and then worsened for those pa-tients in the off-medication state. Inthe on-medication state, motor func-tion did not improve after stimula-tion and scores for akinesia, speech,postural stability and freezing of gaitworsened between years one and five.

According to the report, “The de-terioration when patients were onmedication in symptoms includingspeech, postural stability and freezingof gait, is characteristic of the naturalhistory of PD. The effect of levodopaon akinesia, rigidity and tremor tendsto remain stable over time, whereas

gait, postural stability and dysarthriaworsen and become less responsive tolevodopa.

Five patients experienced cognitivedecline, with three patients develop-ing dementia. In the remaining pa-tients the dementia score remainedstable. Permanent apathy occurred infive patients after the third postoper-ative year. One person committedsuicide. Researchers speculate that thecases of progressive cognitive deterio-ration and permanent apathy proba-bly reflect the natural progression ofthe disease.

The subthalamic nucleus stimula-tion is not a cure and progression ofthe disease cannot be stopped, ac-cording to Dr. Krack, in patients whodo and do not receive DBS alike.New signs can appear, such as speechor gait problems that can be resistantto both medications or stimulation.

The study’s authors make the fol-lowing recommendation for thoseconsidering the therapy: “DBS seemsmost useful for relatively young pa-tients who have motor complicationsfrom levodopa and who are inde-pendent in activities of daily living intheir best on-medication state. Thosewho already have disabling motorsigns that are resistant to levodopa, orwho have cognitive deterioration, arenot good candidates for DBS.”

The treatment also is recommend-ed for older patients who are in goodhealth and whose Parkinson’s symp-toms respond to levodopa.

Those considering surgery need tohave realistic expectations of the out-come, and even after brain surgerythey will have to live with a chronicneurodegenerative disease with lev-odopa therapy as a crucial compo-nent of treatment.

For more information please call1-800-328-0810 (Medtronic). ■

A Five Year Study of Deep Brain Stimulation

D

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 physician.

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

EDUCATIONAL BOOKLETS1. Basic Information about Parkinson’s Disease

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

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

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

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

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

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

7. Good Nutrition in Parkinson’s Disease26-page booklet (English,Italian, Swedish)

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

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

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

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

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

CARELINK (A cooperative APDA-GSK project)You can now contact the APDA Information and Referral Center closest toyou by dialing the toll-free number 1-888-400-APDA (2732)

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 NOVARTIS PHARMACEUTICALS, PROVIDER OF STALEVO.12

PATIENTS PREFER AN

ORALLY DISSOLVING CARBIDOPA-LEVODOPA

FORMULATIONAccording to a clinical studypublished in the January 2005issue of Clinical Therapeutics,more than twice as manyParkinson’s disease patientsprefer Parcopa™ (carbidopa-levodopa orally disintegratingtablets) to conventional car-bidopa-levodopa tablets. Thereason primarily influencingtheir preference was more rap-id access to medication to treat“off” times, less interferencewith daily activities, conven-ience for nighttime dosing andthe feeling of being less con-spicuous about using of med-ication. Parcopa is a SchwarzPharma, Inc. formulation ofcarbidopa-levodopa that dis-solves on the tongue withoutthe need for water. (See theWinter 2005 APDA NewsletterIssue.)

A $20 coupon is available forParcopa at www.parcopa.com or by calling 1-877-727-2672. ■