The American Parkinson Disease Association

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

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

Vincent N. GattulloPresident

Joel GerstelExecutive Director

INDEX

Parkinson’s Diseasein the Young P. 1

President’s Message P. 2

Rotigotine Patches for Early Stages of PD P. 2

A New Frameless Approachto Deep Brain Stimulation P. 3

Q&A P. 4

F.Y.I. P. 5-8

Advances in Parkinson’sMedication P. 9

Massage and Parkinson’sDisease P. 10

Disclosing the Diagnosisof Parkinson’s Disease P. 11

Information OnParkinson’s Disease P. 12

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

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

W I N T E R 2 0 0 7 N E W S L E T T E R

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It is difficult to receive the diagnosis ofParkinson's disease (PD) at any age,but to develop this chronic, neurode-

generative disease at a younger age is par-ticularly challenging. While the neuropatholo-gy and most clinical symptoms are thesame at whatever age PD develops, thepsychological, social and medical man-agement implications are very differentin the young-onset category of PD. De-spite varying estimates, it is believed thatapproximately 10 percent of all peoplewith PD fall into the young-onset variety,defined as occurring between the ages of21 and 50. Although both environmentaland genetic causes for PD in this agegroup have been implicated, it appearsgenetics may play a greater role in thisgroup than in those with older age of on-set.

Special attention must be paid tothe effects of PD on the family in young-onset PD. In this group individuals arejust beginning families and children areof school age. This is the time of lifewhen family activities begin and financialgrowth occurs. The stress of dealing witha chronic disease is difficult and can takeits toll on intrafamilial relationships.

Added to this is the frequent ac-companiment of depression, anxiety andsexual dysfunction that can result in achaotic situation that often requires in-tervention in the form of psychotherapyand counseling in order to preserve thefamily unit. The need to remain open topsychological counseling should be keptin mind, since timely intervention maybe the key to preventing a disastrous out-

come for the family. Counseling regarding long term

financial planning is also essential for theyounger patient with a slowly progres-sive, chronic disease. The need to pro-vide financially for the daily require-ments of a young family at a time whenit is most needed is a major stress for thepatient and spouse. Consideration of set-ting aside funds for future goals needs tobe addressed (e.g., college tuition etc.) asearly as possible. The high cost of med-ical care for the long term also requiresplanning to optimize insurance benefitsand to be aware of the resources and op-tions that are available, such as HMO,VA benefits, worker's compensation andSocial Security disability. Finding rep-utable professionals such as insuranceagents and financial planners with whomthese issues can be discussed may certain-ly relieve much anxiety.

The medical management of theyoung-onset Parkinson's patient requiresan understanding of the greater tendencyof this group to develop dyskinesias(most commonly dystonia) and motorfluctuations when taking levodopa.

It is interesting to note that un-like the older onset PD patient, dystoniccontractions of a focal area of the body(commonly the foot) may actually be themain complaint of the young personwith Parkinson's. It therefore becomesmandatory to employ all levodopa-spar-ing strategies at our disposal when at-tempting to treat symptoms in the youngPD patient. This includes the use ofMAO-B inhibitors, anticholinergics,amantadine and dopamine receptor ago-

PARKINSON’S DISEASE IN THE YOUNGBy Michael Rezak, MD, PhD

Medical Director, APDA Young Onset I&R Center, Glenview, Ill.

cont. on page 12

Dear Reader:

APDA is 46 years old this year and hasbeen a funding partner in every scien-tific breakthrough since its 1961 in-ception. A proud achievement, thoughI like to think that each year is our lastyear in meeting half our mission to“…Find the Cure.”

Recently the Robert WoodJohnson Medical School created theRoger C. Duvoisin, MDVisiting Profes-sorship in Move-ment Disorders.Dr. Duvoisin, apioneer in es-tablishing ge-netic factors inPD, served asour ScientificAdvisory Board(SAB) chairmanfor many years.He was succeed-ed by Dr. G.Frederick Wooten of the University ofVirginia, who was named the first Du-voisin Visiting Professor.

And, when I read about newfindings in one of our centers for ad-vanced research, hope of curing thisdisease is sparked anew. In recent daysthere have been important findings re-ported from the University of Virginia,the University of Alabama and EmoryUniversity. Just yesterday, I read of anew discovery about genetic mutationat the Mayo Clinic/Jacksonville, wherea member of our SAB is a leading re-searcher. It is good to know that our ef-forts and contributions are supportingthe work of America’s finest scientists.

Past successes and future prom-ises in research are satisfying, but it isour mission’s first half, to “Ease the

Burden…” that I would like everyoneto think about.

There is an accepted premisein fund-raising circles that it is easierto raise funds for research than for pa-tient support. Patient and caregiversupport, however, is as vital an objec-tive as research for APDA. Adding our60th Information & Referral Center at

the Dartmouth-Hitch-cock Medical Center inNew Hampshire recent-ly was a proud achieve-ment because each cen-ter brings support andstrength to hundreds ofpeople in that area.

Our networkof centers across theUnited States is alsothe core to establishingand maintaining al-most a thousand sup-port groups, which serve

as educational and social resources forpatients and their caregivers. Theseservices--plus programs, retreats, refer-ral services and a library of free educa-tional materials -- are all part ofAPDA’s unique dual mission.

So, while scientific break-throughs get the headlines, let us re-member that those with PD and theircaregivers begin each day challengedbeyond any of our imaginations, andbe equally proud that your contribu-tions are easing their burdens until acure is found.

Vincent N. Gattullo President

P R E S I D E N T ’ S M E S S A G E

APDA president Gattullo, second from left with Dr. Roger Du-

voisin, MD, Paul Maestrone, DVM, APDA director of scientif-

ic and medical affairs; and G. Frederick Wooten, MD, at Robert

Wood Johnson Medical School.

A multi-center, randomized,double-blind study was de-signed to evaluate the safetyand efficacy of the dopamineagonist rotigotine, suppliedvia a once daily skin patch ver-sus placebo in patients withearly-stage PD. The lead in-vestigator of the study, Ray L.Watts, MD, concluded thatrotigotine, administrated adose of 6mg per day, was ef-fective in the treatment of ear-ly-stage PD. In addition,rotigotine appeared to be well-tolerated by patients.

APDA Is America'sLargest Grass Roots

PD Organization

APDA is the country's largestgrass roots organization servingthe Parkinson's community. Itis a 501(c)(3) not-for-profit or-ganization and receives no gov-ernmental or public funding.Each year APDA contributesmore than $3 million for re-search and more than $3 mil-lion for direct patient and care-giver support through the gen-erous support of individual andcorporate donations. You canbe a partner in easing the bur-den and finding a cure with atax-deductible gift to theAmerican Parkinson DiseaseAssociation, Inc. Call 1-800-223-2732 for details.

Rotigotine Patchesfor Treatment of

Early-StageParkinson's Disease.

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In approximately 75 percent of people with Parkinson'sdisease, (PD) the medications used to control symp-toms become less effective with time. Some patients

may experience too little or too much movement. Othersmay not respond at all to the medications and/or may de-velop neuropsychiatric complications. When the regimenof available medications and the various rehabilitationstrategies become less effective in managing symptoms,surgical intervention can be considered.

The deep brain stimulation (DBS) is a relativelynew surgical intervention used to treat movement disor-ders such as essential tremor, Parkinson's disease and dys-tonia. It was approved by the Food and Drug Administra-tion to treat essential tremor and tremor in PD in July,1997 and to treat advanced motor symptoms in PD inJanuary, 2002.

The subthalamic nucleus and the globus pallidus(GPi) are two locations in the brain that are targeted in theDBS procedure for the treatment of Parkinson's disease.DBS administers a well-controlled electrical current intothe targeted area(s). This electrical current functions as an“off switch” by disrupting brain signals responsible for theabnormal physical movement. This disruption helps re-store more normal activity in the brain thus enabling morecontrolled movement. DBS does not involve destructionof brain tissue, and its effects are adjustable and reversible.

It is preferred to thalamotomy or pallidotomy, twosurgical techniques that involve the actual destruction ofthe brain cells that are “misfiring”.

The effectiveness of the DBS procedure dependson accurate placement of the brain lead(s). Electrical im-pulses generated from an implanted package pass throughthe lead to the targeted area. The targeted areas or nucleiare quite small, approximately the size of a grape, howev-er, the optimal area is approximately the size of a grain ofrice! Special imaging techniques and the placement of ametal, stereotactic head frame on the patient's skull guidethe positioning of the leads. Certain areas of the brain gen-erate a characteristic sound. Microelectrode recording(MER) is conducted during surgery and involves “listen-ing” to the brain cells to identify these specific areas. Thepatient is awake during the surgery and becomes an im-portant member of the team in determining whether ben-

eficial effects occur when the stimulation is applied duringsurgery.

DBS surgery is time-consuming, usually lastingthree to six hours per side of the brain. The most commoncomplaints from patients include back and neck pain andfatigue. These complaints occasionally can become so dis-abling that the patient has a difficult time participating inthe surgery and/or requests to have the surgery stopped.The traditional approach to DBS surgery involves attach-ing a large, metal halo device to the patient's skull and se-curing it to the surgical table. The frame's effectiveness hasbeen proven during several decades of use, however, thenegative aspects of the frame are that it creates completeimmobilization of the patient's head and neck and it ob-scures the patient's line of vision.

In an effort to simplify the DBS procedure and toenable greater patient comfort and participation duringsurgery, neurosurgeons at Virginia Commonwealth Uni-versity and Cleveland Clinic worked with Image GuidedNeurologics Inc. to develop a frameless stereotactic tech-nique. The heavy frame has been replaced with theNexFrame, a disposable guidance device. This new devicedoes not require that the head and neck be kept in a fixedposition and the patient can move or adjust his/her posi-tion if needed. Most importantly, the accuracy of theframeless and framed techniques has been found to beequal. (J.Neurosurg/ Volume 103/September, 2005).

A NEW FRAMELESS APPROACHTO DEEP BRAIN STIMULATION

By Kathryn L. Holloway, MD, Associate Professor, McGuire Veteran’s Affairs - Medical Center, Richmond, Va.Miriam L. Hirsch, MS, RN, Neurosurgical Nurse Coordinator, Virginia Commonwealth University Medical Center, Richmond, Va.

Seven Centers for Advanced Research

APDA provides approximately $1 million annually toits eight centers for advanced research at Emory Uni-versity School of Medicine, Atlanta, Ga.; UMDNJ-Robert Wood Johnson Medical School, NewBrunswick, N.J.; Boston University School of Medi-cine, Boston, Mass.; University of Virginia MedicalCenter, Charlottesville, Va.; UCLA School of Medi-cine, Los Angeles, Cal.; Washington University Med-ical Center, St. Louis, Mo.; the University of Pitts-burgh and the University of Alabama at Birmingham,Ala. In addition, more than $ 2 million is awarded toindividual scientists in the form of fellowships and re-search grants.

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I was diagnosed with PD fiveyears ago. I am having prob-lems with my eye staying

open and just recently with freezing.My PD doctor gave me a pill for myeyes but I do not feel they are helping.The pill is Pyridostigmine BR 60 mg.and I take one four times a day. I havebeen on this medication for about twomonths. Can you tell me what thedoctor can do for my freezing and isthis a progression of the disease? I willappreciate any answers you can giveme.

In terms of your blinking, youmay be having blepharospasm-- a condition in which your

eyelid muscles spasm causing youreyes to clamp shut. This can be treat-ed with Botox. Freezing can occurwhen your medications are not work-ing (“off ”) or when your medicationsare working too much as demonstrat-ed by the accompanying presence ofmild dyskinesia (“on”). You must finda medication schedule that allows theminimization of “on/off ” fluctuations.If nothing else works then bilateralsubthalamic deep brain stimulationmay help.

I am a 34 year old womanwho has not officially been di-agnosed with Parkinson's;

however, I currently have a constanttremor, difficulty speaking and walk-ing. To date the only non-daily med-ication that has been consistently ef-fective is an injection of estrogen, twotypes of testosterone and B-12 on a bi-weekly basis. This relieves my symp-toms of tremor for approximately two

weeks. Has hormone therapy everbeen studied for treatment of Parkin-son's patients? Any information wouldbe helpful in helping me understandmy symptoms.

There are no studies to suggestthat hormone therapy helps totreat Parkinson's disease.

I am staying with a lady whohas Parkinson's disease, and Iwould like to find out what

to feed her and not to feed her. Is therefood that interacts with her medica-tion? She is currently taking car-bidopa/levodopa and lorazepam.Could you please send me some help-ful information?

Proteins interfere with the ab-sorption of levodopa. Carbo-hydrates help levodopa to be

absorbed into the body. Levodopa isabsorbed from the small intestine.Therefore, take levodopa one hour be-fore a low protein, high carbohydratebreakfast and lunch and one hour be-fore a moderate protein and carbohy-drate dinner. Lunch, in particular, isthe meal that makes or breaks how thepatient performs in the afternoon. Ifthe patient takes levodopa with orright after a high-protein lunch, themedication will not work and the pa-tient will be slow the rest of the day.

I have PD, and I have consti-pation as well. I would liketo know what can be taken to

get rid of this problem. Second ques-tion is about my speaking so peoplecan hear me. Do you have somethingthat will take care of both problems?

Eat lots of fruits, vegetables, sal-ads and cereals and drink asmuch water as you can. Take

Colace® and Senokot® every day re-gardless of whether you have a bowlmovement. If there is no bowel move-ment on the second day, take an orallaxative and use a glycerin suppository.If there is still no bowel movement bythe third day, you must try an enema.If this is not successful, you mustscoop out the stool from the rectumusing a plastic glove and vaseline andthen retry the enema. These sugges-tions should be approved by your per-sonal physician before being imple-mented.

What is the value of savingumbilical cord blood for futuretreatment of PD? Is there re-

search being done?

The cells derived from umbili-cal cord blood do have the ge-netic ability to produce dopamine

and may be a source of tissue for trans-plantation in the future.

My mother was diagnosedwith multiple sclerosis manyyears ago and has been bat-

tling it ever since. She has since seen anew neurologist and was diagnosedwith the beginning stages of Parkin-son’s. Is that possible? Can you haveboth? She is also taking meds forAlzheimers, as well.

The disorders are in no way re-lated. However, I have seen pa-tients with Multiple Sclerosis

and Parkinson's disease.

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.

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&Questions Answers

Take this quiz.

What would you expect to buy in aBrooklyn (NY) deli?

a. Kosher dill pickles b. Pastrami sandwiches on

rye c. Original art d. All of the abovee. None of the

above

If the deli is TJsSammitch Shoppeand Deli at 2756Gerritsen Ave., GerritsenBeach, Brooklyn, thecorrect answer is d., allof the above.

Original art for sale in adeli? Yep, and TomMitchell, (as inSamMITCH) donates allthe proceeds to APDA. His latestsale was a portrait of Ronald Regan.

Tom, who was diagnosed with PD in2002 at age 42, calls his art-linedshop the “Cheers” of GerritsenBeach and proves it, as regulars dropin and everybody knows theirnames.

But how did a nice Irish Catholicboy and accounting/religious studiesManhattan College graduate fromthe Bronx become a Brooklyn deliowner with an Italian-Jewish angelnamed Sheryl Cohen for a manager?It has been a long road for such ayoung man. And, buoyed by hisrecent deep brain stimulation (DBS)surgery success, he says, “I'm simplynot done yet. I have a long way to go.”

After 16 years as an accountant witha major New York utility, Tomworked in the same capacity, plushuman resources, for a smallmedical-supply company. That is

when the entrepreneurial bug bit,and he knew he wanted to own hisown business.

He always liked cooking and wascertainly a “people person,” so whenthe deli became available, he bit,hired Sheryl, who in addition tofood management does well withrenovation such as painting, andgutted the store, adding a counter.When he had to be out for the DBSsurgery, she filled in.

Tom says that his diagnosis hasopened his eyes. “I take time to smellthe roses now.” He continues to golfand coach a local sports program.He's written a book dedicated to hisdaughter, Rose, I'm Cold Put On ASweater, published by Author House,and is working on another. And he

continues to add to his deli gallerythat includes 75 paintings.

“I'm a religious person,” he says, andadmits that when he first heard hisdiagnosis, “I was mad at God. So I

had a long talk withHim, and He told meif I would carry Hiscross (PD), and showother people how tocope with life's'downers,' He wouldtake me down afascinating road, andso far, He hasn't letme down.”

Now the accountantturned author, artist,sportsman, deli manbelieves the best is stillahead.

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

and staff who work daily to help ease the burden and find a cure for

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

WINTER 2007FYI EDITOR: K.G. Whitford

5

A Brooklyn Deli “Art Gallery” Raises Funds to Battle PD

Mixed media means paintings and ham on a roll to

artist/Parkinson's patient Tom Mitchell in his

Brooklyn gallery/deli. Tom and his manager, Sheryl Cohen, pose outsidethe “Cheers” of Gerritsen Beach.

No Public Support

APDA receives no governmentor other public funds and is en-tirely dependent upon contribu-tions from businesses, founda-tions, but mostly, from individ-uals. Gifts can be made by mail,telephone, fax or e-mail: The American Parkinson Dis-ease Association, Inc.

135 Parkinson Avenue Staten Island, New York 10305

Tel: 718-800-223-2732Fax: 718-981-4399

E-mail:apda@apdaparkinson.org.

Welcome to new coordinators around the country: JenniferNewsome, BSN Birmingham, Ala.; Diane Church, PhD., atthe new center at Dartmouth-Hitchcock Medical Center,Lebanon, N.H.; Mary Birch Fenn, BSN, Albany, NY; MaryEllen Hickman, RN, Staten Island, N.Y.; Mary Ellen Tri-bodeao, Warwick, R.I.; and Misty Hall, Memphis, Tenn.

The Massachusetts Chapter is introducing “New Resource andNetworking Parkinson’s Support Group” for people with PD,caregivers, family and friends. Nancy Mazoneson (781-693-5069) has information about the group and its first meeting,March 1, at the Waltham Jewish Family & Children’s Service.Correction: The New England Regional Symposium reported in thelast issue was held in Sturbridge, Mass., not in Maine.

It’s called the “Sixth Annual Young-Onset Parkinson’s DiseaseRetreat,” but the name hardly tells the story. A casualty of theGulf Coast hurricanes, the annual event refused to be a washoutand was postponed, rescheduled, relocated, rearranged, but nowit is back with a bang! Presented by APDA’s Mississippi, Ten-nessee, Louisiana, Alabama, Iowa and Florida I&R centers,this year’s schedule includes four days of lectures, events, discus-sions, socials and recreation for patients and families at the Uni-versity of Southern Mississippi’s Gulf coast Research Lab inOcean Springs, Miss. Brenda Allred, RN, who is coordinatingthe event with Caryn Crenshaw, RN, bills it as a retreat for theyoung-onset and the young at heart as well.

Orange County’s Chapter and I&R Center benefited from be-ing a designated charity of the Long Beach International CityBank Marathon last fall. In addition to the $12,345 proceeds,the group had the distinction of authors John Ball, Living Well,Running Hard (Lessons Learned from Living with Parkinson’sDisease) and Evan Henry, Shaker Guy, participating on their be-half.

The Greater Los Angeles Chapter makes money even when it is-n’t trying. The famous LA Friar’s Club was the setting for theChapter’s Holiday Brunch in December. Though not designateda fund-raiser, the event brought $6,000 to the Greater LA Chap-ter’s coffers.

Two eminent experts on movement disorder will participate inthe "Power Over Parkinson's" conference in Tucson, Ariz. onMarch 8. Neuropsychologist Paul Nussbaum, PhD, will discuss"Brain Health" at the morning session, and neurologist Dr.William Marks, will be the afternoon speaker. Information isavailable at www.azapda.org or by calling 520-326-5400.

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San Diego Chapter president Dr. Ron Kobayashi, right,presents a check to Scientific Advisory Board member Dr.Evan Snyder for his research at the Burnham Institute.

Orange County's 5K race team is ready for asuccessful run.

Los Angels Chapter members Linda Behar, Veena

Goel, Janice Feder, Mark Siegel, Madeline Field,

Bunni Dybnis and Kathy Artsis enjoying a brunch atthe Friar's Club.

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APDA chapters across the countrywalked home more than a quarter mil-lion dollars for scientific research lastyear. Thirty-four walk-a-thons fromRhode Island to Washington nettedmore then $353,000. All walk-a-thonfunds are donated to APDA's scientif-ic research program, which last yearawarded $3.3 million to centers for ad-vanced research and individual re-searchers. The Midwest Chapter'sRiverwalk netted more than $50,000in September, followed by San Diego'sMay walk, which netted $38,177, anincrease of more than $10,000 from its2005 event. Third place was claimedby Central Maryland Parkinson Out-reach Chapter, which conducted two

walks totaling $36,615.Other walks that resulted in double-

digit contributions were: Massachu-setts ($30,223); Connecticut ($25,323);Nebraska ($23,753); the Dr. JohnBrady Walk in Waxahachie, Texas($19,876); Greater Los Angeles ($17,404);Tampa Bay Movers & Shakers ($17,275);Wisconsin ($15,488); Minnesota ($14,286)and South Florida ($13,781).

The “grand-daddy” of all walks is theannual Unity Walk in New York City'sCentral Park, This year's will be onApril 28, and is expected to surpass2006's $1.3 million, which benefittedthe major PD organizations. SeveralAPDA teams attend the event, whichlast year numbered 10,000 partici-pants from across the United States.

2006 Walk-a-thons Raise Big $$s for Research

This is not a clinical story of how deepbrain stimulation (DBS) is performedor what happens. It is the story of onewoman's journey in opening her mindand heart to a procedure that she feltcould buy her more time until there is acure for PD. Deb Wityk of Redfield,Iowa, was diagnosed in June 1995, atage 42, and in October 2006 started aDBS procedure.

In October 2004, I was without aneurologist and in search of another,bringing me to Dr. Lynn K. Struck inDecember that year. At our firstmeeting she asked if I had consideredDBS for possible symptom relief. Myimmediate thought was, “Whyshould I let a doctor drill holes in myhead and hot-wire my brain?”

When attending the World Parkin-son Congress last year, I avoided thesessions addressing DBS. I was notopen to that information. Yet, through-

out the Congress I continually hadconversations with individuals whohad undergone the procedure andhad positive results.

After 10 years on Sinemet, my dyski-nesias became more debilitating and Ientered a drug study. The drugproved unsuccessful for me, and I wasdiscouraged and in need of hope.Then in June, I attended an annualseminar in West Des Moines atwhich Dr. Struck introduced two pa-tients who discussed their positive re-sults after DBS.

That did it! I contacted Dr. Struck'soffice to say yes to DBS. I was alwayscheering for others to consider differ-ent ideas or to be open to change intheir life. It was time for me to do thesame!

After surgical and psychological eval-uations, the date was set for Oct. 3,

2006, and it was time to prepare. Ireached out to my family, friends andsupport group, who expressed hesita-tion and fear for my welfare. But re-alizing that I had made my decisionto proceed, they embraced me withtheir love and prayers.

I was informed of the surgery, risksand benefits. I was honest about myanxiety, sense of humor and easinessto cry. I listened to people’s concernsbut in the end did what I needed todo for myself. In my visualization,the outcome was to be great.

The first phase took place Oct. 2 inOmaha. Having been off my medsfor 12 hours, I was cramped, stiff andrigid. Then I was able to move myfingers and felt my body relax with-out drugs. It felt wonderful! I criedwith joy at the miracle. Nine days lat-er a second surgery connected theleads and placed the power pack. I

An Open Mind Proves to be the First Step to Brain Surgery

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cont. on pg. 8

Minnesota’s walk was as much fun as itwas succesful.

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was on my way to being bionic. How does a person go from a closedmind about a procedure to lyingawake as a drill makes a hole in herhead? The power of prayer and open-ness to what is best for me. To under-

stand that to continue to do what Ilove and to be there for my family, Isaid “yes” to DBS. And as my fortunecookie from a recent Chinese mealsaid so well, “Everyone around you isrooting for you. Don't give up!”

(Des Moines I&R Center I&R Coordi-nator, Sam Erwin, who shared this sto-ry with us, reports that Deb is doingwell.)Dr. Struck is the Des Moines I&R Cen-ter Medical Director.

Being in the Dog House Can Have Its Benefits

Dog bites man - no news. Man bites dog - news Man and dog help each other - goodnews.

The dog did not achieve recognitionas man's best friend for nothing.Now canis domesticus can add thehonorary title of APDA's bestfriend. Here are just a few samples ofrecent events where Fido and friendsgot top billing:

Florida's West Coast I&R Centerfeatured Julie Van-Vliet, executivedirector of the Gift of Sunshine, atits Oct. 28, symposium, “Parkin-son's Disease Non-Motor Aspectsand Thinking Outside the Box,” butit was Grandalf, the Great Dane,that stole the show, beginning with abig, sloppy greeting kiss for coordi-nator Faye Kern. The half-day eventat the St. Petersburg Radisson Hotel

and Conference Center includedtalks on music therapy, and thera-peutic and recreational horsebackriding. Wisconsin coordinator Jessi-ca Hahn also included The Wonder-ful Animals Giving Support(WAGS) Pet Therapy of Kentucky, aservice-dog company in its Aprilwalk-a-thon.

In New York it was all dogs as LongIsland coordinators Eileen Giannettiand Julie Garofalo took the annualdog walk to new heights with a“Howl-o-ween” Walk Oct. 22. Ra-dio and print media clamored tophotograph and interview theadorable pooches, and the Long Is-land Chapter raised more than$8,000 for PD research.

St. Louis coordinator Jan Meyer fea-

tured Razzle, a C.H.A.M.P. (CanineHelpers Allow More Possibilities)Assistance Dogs, Inc. graduatewhich earned his way into BobThomas’s home and heart in a recentpublication. Razzle, a home-servicedog, picks up objects from the floor,fetches a special emergency phone ifBob says “911,” and shows his ap-preciation of his master's organ play-ing with a cocked head and waggingtail.

cont. from page 7

Grandalf gives coordinator Faye Kernsa big welcoming kiss.

Bonnie Millen, who works at a LongIsland nursing home, displays thePaws for Parkinson's T-shirt she andWillow won at the Long Island dogwalk.

Bob and Razzle share home, hearthand a big easy chair

$30 Million to Research andGrowing

APDA has contributed nearly $30million to PD research, includingthe 1987 study at Robert WoodJohnson Medical School, whichdiscovered the alpha-synucelinprotein, central to the pathogene-sis of the disease. Contributionscan be restricted to research orother APDA programs. Contact usat APDA, 1-800-223-2732.

An Open Mind Proves to be the First Step to Brain Surgery

ADVANCES INPARKINSON'S MEDICATION

There are many new drugs now available for the treat-ment of idiopathic Parkinson's disease (PD). Carefulthought has to be given to the various drugs, their use,and the order in which they are started and added. Theguiding principle is evidence-based: does the drug reducerigidity, tremor, and akinesia, and does it improve activi-ties of daily living and quality of life? Evidence-based dataare obtained through double-blind placebo controlledclinical trials. There must be awareness whether the drugdoes or does not reduce “off” time and increase “on” time,compared to placebo.

Two new drugs have recently been released in theUnited States. They are Azilect® (rasagiline) and Zela-par® (selegiline HCl).

Azilect is a new second-generation MAO-B inhibitor.Its metabolite is Azilect-aminoiodan, which is not an am-phetamine. The drug is given once a day in tablets of 0.5and 1.0 mg. In tissue-cultures study and in animal mod-els, it has shown to be neuroprotective.

There have been three large clinical trials with thisdrug. The first trial was TEMPO, a monotherapy trial fornewly-diagnosed PD patients. Azilect was given over sixmonths. It improved the United PD Rating Scale (UP-DRS) scores by four points over placebo, with few adverseside effects. At six months, the placebo group was givenAzilect (medication was switched from placebo toAzilect) and compared to those patients initially onAzilect. The earlier-treated Azilect group always remainedbetter that the placebo group. This could possibly indi-cate disease modification. At two years, 46 percent of pa-tients who were in the study remained adequately con-trolled on Azilect. After six years, the early Azilect startedgroup had less progression as compared to the delayedstart group.

A second study, called PRESTO, was an adjunctivetherapy trial. All patients were optimized carbidopa/lev-odop treated patients. Many were on dopamine agonists.Placebo was compared to 0.5 mg and 1mg of active med-ication. The 0.5 mg patients had a half hour less of “off”time and the 1 mg group had one hour less of “off” time.

LARGO, the third trial, showed that entacapone andAzilect were similar in reducing “off” time, which was 0.8hours less “off” time in optimized carbidopa/levodopatreated patients. Freezing of the gait was also improved.

There have now been well over a thousand patientswho have been on Azilect for up to seven years. I have

about 20 patients who have been on Azilect for morethan six months, and they appear to be doing quite well.

Significant reduction of “off” time for patients on car-bidopa/levodopa is seen using Azilect and many of thesepatients have been on dopamine agonists.

Adverse effects compared to placebo were abnor-mal dreams, and several other minor side effects. Therewill probably be a tyramine warning (i.e. cheeses, redwines, etc.) when using this drug. There may be concernswith the use of Selective Serotonin Uptake Inhibitors(SSRI) and antidepressants.

Zelapar (selegiline HCl), a MAO-B inhibitor, is anorally-disintegrating tablet that has been compared toplacebo in clinical trials. It is given once a day and hasfewer amphetamine metabolites than oral selegiline. Se-legiline previously (in the DATATOP study) has beenshown to delay L-dopa therapy for nine months and togive some symptomatic benefit. Zelapar has been shownto reduce “off” time by 1.6 hours compared to placebo.

There is an increase in dyskinesia-free “on” time by 1.4hours over placebo. Titration of Zelapar from 1.25 mg to2.5 mg occurs in six weeks. Most adverse effects occur inthe first six weeks and they may include dizziness, dys-pepsia, hallucinations, headaches, dyskinesias, and nau-sea. Eighty per cent of patients did not reduce their doseof L-dopa, but 20% were able to reduce the dose by 50to 60 mg.There will probably not be a tyramine warning.There may be concerns with the use of SSRIs and anti-depressants.

Parkinson's patients with or without medication mayhave compulsive and/or impulsive reward seeking behav-ior, such as overeating, excessive spending, shopping,computer use, and gambling.

Exelon®, an acetylcholine esterase inhibitor, has nowbeen shown to improve dementia in PD patients and ithas an FDA approval for its treatment. It improves cog-nition, activities of daily living, and quality of life, andmay improve some aspects of behavior and neuropsychi-atric symptoms. The caregivers' impressions supportedthe clinical improvements suggested by the clinicaltrials.

The above article was adapted from the one originally pub-lished in the November-December 2006 issue of ParkinsonPost, the newsletter of the Parkinson's Disease Association ofSan Diego.

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By Dee E. Silver, MD, Medical Director of the Parkinson's Disease Association of

San Diego and Director of the APDA I&R Center in San Diego, Cal.

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As Parkinson's symptoms in-volve rigidity, bradykinesiaand tremors, it's no wonder

that many experience some form ofback pain. One theory is that flexormuscles are stronger than extensormuscles and therefore cause posture tostoop and result in lower back strain.Another theory is that Parkinson's pa-tients do not have the ability to recov-er or relax their muscles and over timecan suffer from some form of muscu-lo-sketal discomfort. While re-search clearly documents the bene-fits of conventional treatments pre-scribed by physical therapists, mas-sage therapy also can be beneficialin improving musculo-sketal dis-comfort.

Some benefits of massageinclude:

• Stress Reduction. It is wellknown that stress creates an exacer-bation in Parkinson's symptoms.

• Muscle Flexibility Improve-ment. It relieves muscle rigidityand stiffness that often leads to muscleexhaustion.

• Increase in Circulation. Bloodsupply improves nutrition to muscles,speeding up the elimination of meta-bolic wastes which can offer musclessome reprieve from the contractions.

• Sleep Improvement. Results inregular bowel movements and en-hances the effectiveness of medication.

There are many different typesof massage techniques which canprove helpful with circulatory andmusculoskeletal benefits. Here arejust a few common types:Swedish massage: This is the most common. Swedishmassage is very soothing using oil andsmooth strokes.Deep tissue therapies:

Also known as neuromuscular

trigger point and Rolfing often are abit more rigorous yet produce effectiveresults with chronic pain. Easternstyles work with the body's meridianpathways and focus to regulate theflow of energy in the body. This typeof massage is given through fingerpressure, rocking and stretching suchas: Acupressure, Thai or Shiatsu.

Some tips to consider whenlooking for a massage therapist are:

• Make sure that he/she has graduat-ed from an accredited school and is li-

censed and certified. This will guar-antee a level of professionalism andcompetence in anatomy, physiologyand different massage techniques forconsidering your individual benefit.

• Inquire if they are members of theAmerican Massage Therapy Associa-tion, the Association Bodywork andMassage Professionals, or a similarwell-known professional organization.This type of membership guaranteesthat they maintain continuing educa-tion credentials as required by licen-sure.

• Check with your health careprovider. Some insurance carriers arerecognizing the medical therapeuticbenefits. If you are not coveredthrough your health insurance, expectto pay a fee somewhere between $30-$60 for an hour.

• Understand that this is not just aform of luxury; massage therapy canbe considered regular health mainte-nance, and increases quality of life.

• Consult your health care providerto discuss if massage is right for you.As these benefits are demonstrated inclinical research studies, physicianswill advocate the use of therapeuticmassage more widely, thus incorporat-ing them into customary medicalpractice.

For more information on ther-apeutic massage and to find a thera-pist in your area consult the follow-ing websites:www.ncbtmb.comThis is the home page for the Na-tional Certification Board for Ther-apeutic Massage and Bodywork.The information on this website isgeared towards professionals, but itdoes have a link to locate nationalcertified practitioners in your area.www.massagetherapy.com/learnmoreThis site is run by the AmericanBodywork and Massage Profession-

als, which is a professional associationfor many types of bodyworkers in-cluding massage therapists. The sitecontains introductory informationabout massage and the resources nec-essary to find ABMP certified massagetherapists in your area.www.massagetherapy.orgThis is the homepage of the AmericanMassage Therapy Association. TheAmerican Massage Therapy Associa-tion is well-respected professional or-ganization for massage therapists. Thesite is a resource to find therapists inyour area.

This article was adapted from “Knead aMassage” published in the Spring 2006issue of Parkinson's Page, the newsletterof the Maine APDA I&R Center inFalmouth, Maine.

MASSAGE AND PARKINSON'S DISEASE

In many instances, the benefits of in-forming other people about the diag-nosis of your Parkinson's disease (PD)

will outweigh the perceived benefits of se-crecy. For example, being open aboutthe diagnosis can eliminate the needfor persons with PD to cover up or tryto compensate for their difficulties. Itallows them to openly discuss theirsymptoms rather than feel embar-rassed by their need for help; likewise,by being upfront about it they cansave a lot of explanations about whythey sometimes have trouble walking,or their handwriting becoming illegi-ble or slowing down.

Others who are close to the personwith PD may have already suspectedsomething being wrong. Telling thetruth about the diagnosis will give themcorrect information and help head offfalse assumptions. Furthermore, with thedisclosure, the people with PD can open-ly discuss with family members and oth-ers about long-range financial plans,healthcare directives and powers-of-attor-ney, and how to make the best use of theirtime before the disease disables them.

At first, it may be hard to tell others.Before doing so, it is important to con-sider what information should be givenand to whom. For example, the personwith PD may want to tell others that PDis a degenerative disease of the brain thatresults in tremor, stiffness, decreasedmovement and unsteadiness.

The person should talk about the par-ticular symptoms he/she is experiencingto help others better understand what ishappening. Because PD affects each indi-vidual differently, there is no exact way todetermine how the disease will progress.While there is no cure, some of the symp-toms can be managed by medicationsalong with changes in diet and regular ex-ercise. Family members and others

should be encouraged to obtain information about the disease and get connectedwith organizations like APDA. Supportgroups can be beneficial to persons with

PD and family members.If the person who has been diagnosed

with PD is employed, he/she should firstdetermine his/her rights under the Amer-icans with Disabilities Act and equal Em-ployment Opportunity Commission be-fore telling the employer.

The person may be able to continueworking by simplifying job duties ormaking accommodations to the worksite.The person may have to retire early, so itis also important to gather informationabout the employer's early retirement pol-icy, insurance plans and disability provi-sions. If the company has an EmployeeAssistance Program (EAP), the personwith PD should consider speaking withan EAP counselor to help explore and un-derstand his/her options. In addition,he/she should be sure to look into SocialSecurity Disability to see what benefitsthey may be eligible for.

Disclosing the diagnosis can ultimate-ly maximize the person's quality of life.With the open support of family, friendsand others, persons with PD can contin-ue enjoying the various physical, mental,

social and spiritual activities that havemade his/her life complete.Below is a list of resources.

Americans with Disabilities ActWeb site: www.ada.govToll-free 1-800-514-030110:30 am - 4:30 pm (ET) Mon-Wed& Fri, 12:30-4:30 pm (ET) Thursday

Equal Employment OpportunityCommissionWeb site: www.eeoc.govToll-free: 1-800-669-40008 am - 8pm (ET)

Social Security AdministrationWeb site: www.ssa.govToll-free 1-800-772-12137am- 7pm, Mon-Fri

DISCLOSING THE DIAGNOSIS OF PARKINSON’S DISEASEBy Terri Hosto, MSW, LCSW

Dept. of Neurology, Washington University School of Medicine, St. Louis, Mo.

APDA Support Group Leader

More than 45 million Ameri-cans are without health insur-ance. This lack of insurance af-fects people from different eth-nic groups and socioeconomicbackgrounds.For people without prescriptioncoverage, it can be difficult toknow where to find help. ThePartnership for Prescription As-sistance (PPA) is a pharmaceuti-cal industry sponsored servicethat offers a single point of ac-cess to more than 475 patientassistance programs includingover 180 programs offered bypharmaceutical companies.It can be researched by calling

1-888-4PPA-NOW or visitingwww.pparx.org

PRESCRIPTIONSCOVERAGE

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Information on Parkinson’s DiseaseSingle copies of the following publications may be obtained free of charge by writ-ing to the national APDA office or by calling the toll-free number 1-800-223-2732 or faxing to 1-718-981-4399, or contacting any of the 60 APDA Infor-mation and Referral Centers.

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, Ital-ian, Portuguese, Spanish, Russian)

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

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

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

6. Good Nutrition - 20-page booklet (English), new edition7. Young Parkinson’s Handbook - 78-page booklet (English)8. How to Start a Parkinson’s Disease Support Group -

24-page booklet (English, Italian)9. Aquatic Exercise for Parkinson’s Disease -

20-page booklet (English) for patients and their families 10. Next Step After your Diagnosis - 23-page booklet (English)

Finding Information and Support11. My Mommy Has PD... But It’s Okay! - 20-page booklet for young

children.

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

DVDManaging Parkinson’s - Straight Talk and Honest Hope.Created by the Washington State Chapter of APDA especially for newly diag-nosed Parkinson’s patients and their loved ones. Leading experts explain what PDis and how it is treated, how to deal with symptoms of the disease, 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 and research application guidelines.

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

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

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

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

provider.

Parkinson’s Disease InThe Youngcont. from page 1

nists for more potent, symptomatic treat-ment. Often these drugs are used incombination to achieve an optimal bene-fit without inducing side effects. Never-theless, levodopa, the most efficaciousdrug in all PD patients, should be used atthe lowest doses possible when an inade-quate response is obtained with othermedications or when side effects are en-countered at doses necessary to achieve adesirable response. Recent data hasshown that young-onset PD patientshave a more slowly progression courseand seem to have a smoother course thantheir older counterparts. Cognitive prob-lems seem to be decreased in this groupas well. Finally, deep brain stimulation,when necessary, seems to provide a morerobust response in the younger PD agegroup.

When seeking neurological careit is in the patient's best interest to seek aphysician who has an understanding ofthe unique requirements of the youngPD patient. This usually means a neu-rologist who subspecializes in MovementDisorders. Having someone who has thisknowledge base as the treating physicianwill maximize long term control ofsymptoms while minimizing complica-tions of treatment which ultimatelytranslates into long-term maintenance offunctional independence.

Those affected by PD at youngerages comprise a special group. When at-tention is paid to the many important is-sues that may arise over the many years ofliving with this disease, long term psy-chological and medical health can bemaximized.