You may have been told by yourdoctor that you have notParkinson's disease but “atypi-

cal parkinsonism,” “Parkinson's-plus” or “Parkinson's syndrome.” Confused?

What is “Parkinson's syndrome”?A “syndrome” is a group of signs

and symptoms that often occurtogether and may be caused by any ofa variety of diseases. A “disease” is anabnormal process, usually with a spe-cific cause. For example, the syn-drome called the “flu,” whichincludes fever, muscle aches, coughand headache, can be the result ofany of several diseases, only one ofwhich is an infection by the influen-za virus.

Similarly a combination of slow-ness, muscle rigidity, tremor andimpaired balance is a syndromecalled “Parkinson's syndrome” or just“parkinsonism.” The disease that mostcommonly causes it is “Parkinson'sdisease” (PD). PD is strictly definedas parkinsonism associated withgradual loss of certain groups ofbrain cells that, as they sicken, formwithin them microscopic balls calledLewy bodies.

Parkinsonism may also be causedby about a dozen diseases other thanPD. Most of these cause other signsand symptoms in addition to theparkinsonism, which is why they arealso called the “Parkinson-plus” dis-orders or the “atypical parkin-sonisms.”

Progressive Supranuclear PalsyThe most common atypical

parkinsonism is “progressive supranu-clear palsy” or PSP. There are only

about 20,000 people with PSP in theUS, while there may be one millionwith PD. What's “atypical” aboutPSP is its failure to respond to lev-odopa/carbidopa or other PD med-ications, difficulties looking up anddown, an erect or even backwardlyarched neck posture, and the relative-ly early appearance of falls, slurredspeech and swallowing difficulty.Most of these features can occur inPD, but not with the intensity or fre-quency with which they appear inPSP. Instead of Lewy bodies, thebrain cells in PSP have “neurofibril-lary tangles.” While Lewy bodies aremostly made of a protein calledalpha-synuclein, neurofibrillary tan-gles are made of a different proteincalled “tau.”

Multiple System AtrophyThe next most common atypical

parkinsonism is “multiple systematrophy” or MSA. In addition toparkinsonism, MSA usually featuresthe type of poor coordination andbalance that arises from disorders ofthe cerebellum, giving some sufferersa “drunken” appearance. Other“atypical” features in most peoplewith MSA are low blood pressure,sensations of being too hot or cold,constipation, urinary difficulties andbrief episodes of shortness of breathor sleep apnea. These arise from“dysautonomia” which is a loss ofbrain cells that control the autonomic

1

WINTER 2008 NEWSLETTER

The American ParkinsonDisease Association

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

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4

5

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12

Atypical Parkinsonism

President’s Message

Support Groups-PD and APDA

Q&A

F.Y.I.

How To Choose a Physical Therapist

Information on Parkinson’s Disease

INDEX

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

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

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

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

Vincent N. GattulloPresident

Joel GerstelExecutive Director

WINTER 2008 APDA

continued on page 9

ATYPICAL PARKINSONISMBy Lawrence I. Golbe, MD, Professor of Neurology, UMDNJ-Robert Wood Johnson Medical School, New Brunswick, N.J.

APDA WINTER 2008

2

President’s Message

Dear Reader:

“I didn't know that!” How often have we heard this statement, and even

more interesting, how often have we uttered it? I am amazed what we take for granted that people

know. As I am out speaking to groups both nationallyand locally here on StatenIsland, I am shocked by a sur-prised response to the infor-mation about APDA's contri-bution of more than $30 mil-lion to research, or networkof 62 Information & ReferralCenters across the country, orresponse to more than50,000 telephone requests forfree educational literatureannually.

We publicize these factsin national media, on ourWeb site and through articlesin our newsletter that ismailed to more than 200,000 people. The BetterBusiness Bureau and other not-for-profit monitorsreport our financial contributions assiduously. Ourarmy of 56 chapters works continually to raise aware-ness. And yet, in the mass of information with which weare bombarded with every day - 3,000 advertising mes-sages a day, according to the Newspaper Association ofAmerica - it is not surprising that much gets lost in themix.

Several years ago, I read an article in a business pub-lication about a young college student whose motherhad been diagnosed with a degenerative neurologicaldisease. She visited the association's Web site to donatethe small amount she was able to. It was there that shediscovered that she could create her own personal site toencourage friends to donate as well. Though shereferred to herself as “technologically illiterate,” she wasable to complete the site and within a week more than$2,000 was contributed. She was able to get out hermessage instantly, not have to ask her friends face-to-face for a donation, and generate a significant donation.

That is why it is so important for everyone who iscommitted to finding a cure for Parkinson's disease and supporting those who are already diagnosed and their

caregivers to get out the message of our work. Localmedia outlets are available, especially community TVstations, and can be contacted by anyone. Look for thepublic affairs or news features departments.

Recently I was asked to appear on the Joey ReynoldsShow, a syndicated radio program broadcast from New

York City and airedin 200 U.S. cities.Again, after listingthe accomplishmentsand objectives ofAPDA to the listeningaudience, I heard, “Ididn't know that!”

None of us isan entertainment orsports celebrity, orlikely has access tomass media atten-tion, but our dailycommitment to “Easethe Burden - Find

the Cure” for Parkinson's disease can be advanced byour individual message to support the battle.

Vincent N. Gattullo President

Exelon® Patch Release

FDA approved the use of the Exelon® patchfor the treatment of Parkinson's disease (PD)and Alzheimer's disease dementia.Application of the once-daily skin patch offersa new approach in the treatment of mild tomoderate PD dementia, providing a continu-ous delivery of drug over 24 hours.

The use of a skin patch rather than oral cap-sules reduces the gastrointestinal effects com-monly seen with this type of drug.

APDA president with WOR Radio's Joey ReynoldsPhoto by Mark Kasner

WINTER 2008 APDA

3

The main goal of Parkinson's disease (PD) sup-port groups is to educate participants about themany aspects of this disease. Information about

symptoms, treatments and medication side-effects, sig-nificance of nutrition and exercise and resources avail-able for PD patients and care partners help participantsgain useful knowledge about the disease and how tomanage it.

Support groups enable participantsto ask questions, discuss commonconcerns and offer emotional sup-port to one another. They pro-vide a place to share feelings ina caring atmosphere andexchange helpful copingstrategies like completingeveryday tasks in more effi-cient and less stressful ways.The give and take nature ofsupport groups encouragesparticipants not only to receiveinformation and support fromothers, but to give care and supportto others as well. Support groups serveas social outlets where people with PD meetother people living with PD. Participants tend to formbonds of friendship in light of their common situation.Groups also offer comfort and hope by meeting otherswho are coping well under similar circumstances.

Support groups come in many different forms andmay vary in size from just a few participants to muchlarger groups with twenty or more participants.Membership typically consists of a combination of PDpatients and family care partners.

Specialized groups may be available to address theneeds of those who share a common interest, such asnewly diagnosed patients, young-onset patients, deepbrain stimulation patients or adult children caregivers.Each group will have its own character since its partici-pants represent a range of symptoms as well as a mix of

personalities, age groups, religious backgrounds, andfinancial conditions. However, the situation that theyall have in common easily outweighs their differences.

Support groups are facilitated by either a health careprofessional or an experienced family member and/orpatient coping with the disease. Most meetings ordinar-ily last about one to two hours and are conducted in an

informal, conversational style. Outside speakerssometimes are invited to address specific

topics such as new medications, legaland financial planning and home

safety.A newcomer may be

overwhelmed at first by theinformation discussed in ameeting. Knowing before-hand what to expect can helpan individual prepare for thegroup experience. If possible,

talk to the group facilitator inadvance and explain your

interests and concerns in joiningthe support group. Ask about the

compostition of the group, the struc-ture and ground rules of the group meet-

ings, and what is expected with regard togroup participation. If you do not receive the help youneed after a meeting or two, try another group, or trythe same group later when their program seems to bet-ter fit your needs.

Although support groups alone cannot give you allthe education and emotional support needed to dealwith PD, they can be a valuable source of help. Joininga support group should be just as important as regularvisits to the doctor. To find out more about your closestsupport groups, contact your nearest Information andReferral Center.

To obtain more information about support groups,how to start one and the APDA Support GroupProgram, request the new brochure “How to Start aSupport Group” from the APDA national office.

By Terri Hosto, MSW, LCSWDepartment of Neurology

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

SUPPORT GROUPS -PD APDAand

APDA WINTER 2008

4

Questions & Answers

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

Q: I understand that a newdopamine patch is available. I am43 years old and I have had PD fornine years. I have tried many med-ications but I am only able to tol-erate Sinemet 25/100 and I take itevery two hours while awake. I amnot doing well. I am too jumpy orcan't move at all. Is the patch forme?

A: You need to be on a medicationwhich lasts longer than Sinemetand which will smoothen out you“on/off ” fluctuations. Neupro(rotigitine) is a dopamine agonistand it is available as a 24 hour con-trolled release patch. Requip(ropinerole) is another dopamineagonist which will soon be avail-able as a 24 hour time releasetablet. Either of these medicationsshould help, but you must remem-ber that when you add the

dopamine agonist to the Sinemetyou may increase dyskinesia andyou must gradually lower yourSinemet at the same time that yougradually increase the dose ofNeupro or Requip.

Q: My husband was told he hasdiffuse Lewy body disease. He hastried Sinemet but all it does itmake him confused. He is forget-ful and slow. What can I do? Theother doctors have given up onhim.

A: Diffuse Lewy body disease is adisorder in which patients havesevere cognitive impairment incombination with signs of Parkin-son's disease. These patients do beston a medication to improve memo-ry and concentration (Aricept orExelon), a mild sedative at bedtime(Seroquel) and a very small amount

of Sinemet (25/100 one-half tabletin the morning and afternoon).

Q: I was just diagnosed withParkinson's disease. How long willI be able to walk?

A: Parkinson's disease graduallyprogresses over decades. Mostpat-ients do very well for manyyears. Eventually after 10-13years, fluctuations in response toyour medications will occur andthen after 15-20 years, your bal-ance and/or cognitive skills mayworsen. Make sure that you seean experienced Parkinson's dis-ease specialist every three monthsfor continued adjustments ofyour medication schedules. Beassured that our progress in treat-ing this disease will be muchfaster than the progression ofyour symptoms.

The unfortunate experience of an Irish Parkinsonian, traveling overseas and unable to communi-cate with officials, mistaken for being intoxicated, forced to take a cold shower, and returned to hiscountry, has resulted in a pocket-size guide with helpful advice for Parkinson's patients when travel-ing or requiring an emergency room visit (copy attached).

The bright orange tri-fold card authorized by Dr. Joseph Friedman, medical director of theWarwick, R.I. Information & Referral Center, also includes the phrase “I have Parkinson's disease.Please allow me time for communication.” in English, German, French, Italian and Spanish, andpatient identification space.

A copy of the card is available by calling 800-223-2732

ER and TRAVELING SUPPORT AVAILABLE

WINTER 2008 APDA

5

F.Y.I.

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

BY K.G. WHITFORD

Award, ElectionsHighlight

APDA Annual MeetingPatrick McDermott was elected 4th vice presi-

dent and Nicholas Corrado, treasurer, duringAPDA's annual meeting, Dec. 2 at the HiltonGarden Inn, Staten Island. Former New York StateFirst Lady Matilda Cuomo was elected an honorarydirector, and Andrew Finn and Adam Hahn wereelected to the board. Mrs. Cuomo is a former boarddirector and was the featured speaker at APDA'snational headquarters dedication in November2005. David Richter, president of the ArizonaChapter, was elected the West Coast representative.

J. Eric Ahlskog, PhD, MD, chairman of theMayo Clinic's Movement Disorders Center, receivedthe 2007 Fred Springer Award. Dr. Ahlskog, authorof “The Parkinson's Disease Treatment Book:Partnering with Your Doctor to Get the Most fromYour Medication,” was presented a $10,000 checkand plaque by APDA president Vincent N. Gattullo.

The meeting also included talks by JamesBennett, PhD, MD, a member of the ScientificAdvisory Board, and Joseph Conte, board memberand senior vice president for quality management forNorth Shore-Long Island Jewish Health System.

“People don't like change.” It's an old adage thatmany of us tend to grab hold of when there's a signifi-cant change in life. It speaks to the resistance we feelwhen we must face something new or unexpected. Evenwhen the changes are positive ones, they can leave us feel-ing a little off-kilter, as if we've lost our balance. Andwhat about the unexpected changes – the not-so-positiveones that can make us feel a bit like the flattened cartooncharacters we remember from childhood?

Certainly, we all know that despite our resistance,change is perpetual and inevitable. For most, however,change occurs very slowly – a new wrinkle here, a grayhair there – slowly enough that adapting to it doesn't cre-ate tremendous stress. How, though, are we to adapt, torecover our balance when we experience an unexpectedand shocking change? How do you adapt when you'reyoung and told you have Parkinson's disease?

First, keep in mind that adaptation is not a one-timeoccurrence; it's a process in which you continually adjustin order to accommodate whatever you are facing. One ofthe most difficult things about a chronic illness, particu-larly a progressive illness like PD, is that you and thosewho care about you are likely to experience a more pro-nounced awareness of the changes occurring in your bodyand the impact those changes have on your daily life.

While it is impossible to prevent change, it is knownthat understanding and support from others help usmanage it. APDA National Young Onset Center was cre-ated to do just that – to help you contend with the con-tinual process of adjustment and re-adjustment. Contactus at 877-223-3801 or visit us at www.youngparkin-sons.org. Whether you are newly diagnosed or have beenliving with PD for many years, the National Young OnsetCenter is here to provide you with the information, sup-port and resources you need to handle the changes, bothbig and small, that come your way.

The Challenge(s) of ChangeA message from the National Young Onset Center

This is the first in a series of columns to be written byJulie Sacks, director of the APDA National Young OnsetCenter, addressing the particular concerns of younger PDpatients and their families.

Dr. J. Eric Ahlskog, center, receives APDA's Fred Springer Awardfrom president Vincent Gattullo and Jay Springer, right, duringthe 2007 annual meeting.

F.Y.I.

APDA WINTER 2008

In today's society living to age 91 is admirable.

Continuing to write, entertain and sail at that

age while battling Parkinson's disease is

remarkable. But founding an international

center to support world peace at a major aca-

demic institution and starting a manufacturing com-

pany based on your fifth major invention could only

be accomplished by Stanley Dashew.

Everyone who interacts with the indomitable

nonagenarian professes admiration – from those who

work closely with him daily to the

doorman at

his Los Angeles condominium that is lined with pho-

tos taken during his many trips around the world.

A native New Yorker and Great Depression sur-

vivor with a love for writing and photography, in

1949 Stanley, then owner of a successful business

machine sales agency in Michigan, attracted world

attention when he outfitted his 76-foot schooner

Constellation, and with his family – his wife, Martha,

7-year-son, Stephen (Skip), and 3-month-old daugh-

ter, Leslie – began a 15-month nautical adventure.

Local newspapers caught the excitement of a young

family's odyssey pursuing its dream and headlined its

progress as they crossed the Great Lakes and sailed

down the East Coast and through

the West Indies and the Panama

Canal. When the family docked in

Los Angeles, it was arriving at the

port that would be the Dashew’s

home for more than half a century.

By the late '50s, Dashew

Business Machines – which “started

out as a hole-in-the-wall operation in

1952,” according to The San

Francisco Examiner – was one of three

major companies producing credit

cards with almost $4.5 million in sales.

The U.S. Patent Office copyright

No.#192.306 was issued to Dashew

Business Machines, Inc. for a

“Combined Printing and Punching Data

Recording Machine” that would revolu-

tionize the credit-card industry. StanleyStanley Dashew greets Congresswoman Jane Harman at the 2007Dashew Center awards.

STANLEY DASHEWA Legacy of

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F.Y.I.

WINTER 2008 APDA

F.Y.I.

had been developing addresso-

graph machines since he was 20

years old, but being the lynchpin

for the creation of the first bank

credit-card system, BankAmeri-

card, was the mother lode!

Stanley continued his quest

for industrial innovation and is

credited with the worldwide

introduction of the single-point

mooring system, Imodco, for off-

shore oil transportation (1964),

inventing of the “Dashaveyor,” a

people and cargo carrying system

(1965), and a wastewater treat-

ment system, Biomixer, used

around the world (1990).

Today, he is contagiously

enthusiastic about his latest inven-

tion, the Dashaway, a system for

making people more mobile, and

the machine he credits with giving

him back his life after his PD

diagnosis, a fracture, and serious

spinal deterioration.

Invented with exercise physi-

ologist Charles Blunt, the

Dashaway combines walking sta-

bilization, exercise components,

fall prevention, and back-pain

relief by decompressing the spine,

increasing endurance and flexibil-

ity. With the patent pending,

Stanley and his crew are finalizing

their manufacturing, distribution

and marketing strategies.

But Stanley's proudest

accomplishment is the

UCLA Dashew Inter-

national Center for

Students and Scholars,

which he and his sec-

ond wife, Rita, created

more than 40 years

ago based on their

belief that strength-

ening international

ties and promoting

peace among nations

begins with cross-

cultural understan-

ding among peo-

ple. Undaun t ed

by his physical

c h a l l e n g e s ,

Stanley Dashew,

a person with

Pa r k i n s o n ' s ,

today continues

his exceptional

life as father,

i n v e n t o r ,

entrepreneur,

industrialist, photographer, phi-

lanthropist, champion of world

peace, and writer. His autobiogra-

phy is aptly titled, “You Can Do

It!”

Stanley Dashew Demonstrates His Latest Invention

Survival and Service

APDA WINTER 2008

8

F.Y.I.

Mary Egger, APDA's NebraskaChapter president, is still marveling atthe Weitz Company's $35,000 contri-bution via its Fifth Annual Volleyball

Challenge. “These wonderful people have con-tributed more than $100,000 to the chapter since thebeginning of this event.” The tournament began as a wayto help a Weitz employee who was diagnosed with PD.“When it hits home like that, that's when it really drivesyou to participate,” said a fellow employee. Forty nineteams competed this year with Jobsite Supply the winner.“This support has enabled our chapter to donate more toresearch and fund many of our local programs,” Mary said.

Mary Louise Weeks may not have putAPDA on the map, but she certainlyhas put it on the Atlanta, Ga. high-ways. Via an in-kind donation from

William Wilkins, chairman of the Wilkins MediaCompany, $70,000 worth of billboard design, produc-tion and space tells motorists how to get assistance in 15different locations around the Atlanta area.

The 250 people who attended the annualParkinson's Disease Community Education Days inVirginia came away with lots of information. Sponsoredby the Richmond Metro Chapter and the I&R Center ofCharlottesville with the Southeast Parkinson's DiseaseResearch Education and Clinical Center (PADRECC),

the two-day event fea-tured keynote speaker,author John Argue(“Parkinson's Disease& The Art of Moving”),who demonstrated movement and speech techniques fordaily living activities. APDA Scientific Advisory Boardchairman Dr. Frederick Wooten from the University ofVirginia faculty and PADRECC's Dr. Abu Qutubuddinwere also included in the program.

There was a very different menu forthe Northeast Texas Chapter's“Lunch with the Pharmacist.” Dr.Amie Blaszczyk, assistant professor of

geriatrics at the Texas Tech School of Pharmacy, discussedParkinson's medications during the event's dining por-tion followed by informal and unrushed one-on-one dis-cussions with three senior attendees for the students andtheir guests.

David Richter's first function as APDA's newlyelected West Coast representative to the board of directorswas a pleasant one. He presented a check to executivedirector Joel Gerstel for $18,500 representing the pro-ceeds from the Arizona Chapter's El Tour de Tucson event

APDA’s Washington Chapter is one ofseveral organizations funding astatewide database being created toidentify persons with PD. The

University of Washington and the VA Puget Sound Hospitalin Seattle are jointly directing the ongoing grassroots projectthat actively involves voluntary patient participation and canbe a valuable resource for both patients and researchers.

IN THEEAST

IN THESOUTH

IN THENORTHWEST

IN THE

MIDWEST

IN THEWEST

IN THE

NORTH

IN THEEAST

IN THESOUTH

IN THENORTHWEST

IN THE

MIDWEST

IN THE

SOUTHWEST

IN THENORTHEAST

IN THEWEST

IN THE

NORTH

IN THEEAST

IN THESOUTH

IN THENORTHWEST

IN THE

MIDWEST

IN THE

SOUTHWEST

IN THENORTHEAST

IN THEWEST

IN THE

NORTH

IN THEEAST

IN THESOUTH

IN THENORTHWEST

IN THE

MIDWEST

Nebraska Chapter president Mary Egger, right, joins inproudly displaying the Weitz Company's proceeds from its2007 volleyball tournament.

The "one for the road" in Atlanta is an APDA helpline.

Newly-elected West Coast Representative David Richter, right,surprises Joel Gerstel, executive director, with an $18,500 checkduring the annual meeting.

9

WINTER 2008 APDA

nervous system. The dysautonomia of MSA was called“Shy-Drager syndrome” before it was recognized in theearly 1990's as part of a specific disease that can have sev-eral forms. Like PSP, MSA causes earlier balance prob-lems than PD and medication for PD usually has littlebenefit. However, there is medication for most of thedysautonomic features. In MSA, the protein that aggre-gates is alpha-synuclein, as in PD, but it does so in a dif-ferent set of brain cells and looks different from Lewybodies. The protein aggregates in MSA are called “glialcytoplasmic inclusions.”

Corticobasal DegenerationThe third leading atypical parkinsonism is “corti-

cobasal degeneration” (CBD).CBD affects one side of the body first and worst.

This is also true, but to a far lesser extent, for PD. ForPSP and MSA, the problem is usually symmetric, withleft and right sides affected nearly equally. CBD, in addi-tion to parkinsonism, features abnormal posturing oflimbs called dystonia, abnormally heightened reflexes aselicited by tapping with a hammer, and small, sudden,rapid involuntary movements called myoclonus. Its mostdistinctive feature is apraxia, which is a loss of the abilityto perform complex movements with the hands or feet.There is also difficulty with the ability to perceive the spa-tial features of objects. At present, no medication is effec-tive, unfortunately, and the disorder is treated with phys-ical therapy. In CBD, the protein that aggregates is tau,as in PSP, but it does so mostly on one side of the brain,and disproportionately in the area of the brain responsi-ble for planning complex movement tasks, the frontallobes.

Dementia with Lewy Bodies“Dementia with Lewy bodies” is a parkinsonian dis-

order that often starts with confusion, depression or psy-chosis (that is, hallucinations or delusions). However, themental symptoms appear before or together with themovement symptoms and not afterwards, as in PD. Themovement difficulty may even be very mild and, as formost of the atypical parkinsonisms, tremor at rest is farless common than in PD. In DLB, the behavioral symp-toms can vary greatly over periods of minutes to days andcan include periods of unresponsiveness, elaborate delu-sions and visual hallucinations in addition to the difficul-ty with memory and thinking. The hallucinations ofDLB can occur without levodopa or other dopamine-

enhancing medications, while in PD, any hallucinationsare a side effect of those medications. The parkinsonismof DLB responds to levodopa/carbidopa. The movementand behavioral symptoms can be severely and dangerous-ly exacerbated by drugs that block dopamine such asHaldol (haloperidol), Compazine (prochlorperazine) andReglan (metoclopramide).

Vascular ParkinsonismAnother common condition causing atypical parkin-

sonism is “vascular parkinsonism” or “arterioscleroticparkinsonism.” This is the eventual result of many tinystrokes, no one of which may be large enough to causesymptoms at the time it occurs. The strokes can be seenon an MRI scan. Over the years, the cumulative effectcauses movement difficulty, especially with walking andother movement of the legs. The condition does notrespond to PD medication, but its progression can oftenbe slowed or even stopped by controlling risk factors suchas high blood pressure, smoking, or high lipids. Physicaltherapy is helpful in dealing with the gait problem.

How Do I Tell If I Have Atypical Parkinsonism?Atypical parkinsonism rather than PD should be sus-

pected when someone with the parkinsonian syndromehas little or no response to a moderate dosage of lev-odopa/carbidopa or when there is the early appearance offalls, behavioral changes, swallowing problems, abnormaleye movements, bladder problems or lightheadedness onstanding. The physician should order an MRI scan,which can show the small strokes of vascular parkinson-ism, the asymmetric shrinking of corticobasal degenera-tion, the unusual pattern of brain shrinkage of progressivesupranuclear palsy, or the abnormal pattern of iron andscarring of PSP or multiple system atrophy. Some otherradiologic tests such as PET and SPECT can also be help-ful in special circumstances.

While the atypical parkinsonisms are more difficult totreat than PD, the good news is that they do not run infamilies nearly as often as PD does. While 20-25% ofpeople with PD have some close relative with PD, fewerthan 1% of those with PSP, MSA or CBD have a relativewith atypical parkinsonism. For DLB and vascularparkinsonism, the fraction is slightly higher. The causesof the atypical parkinsonisms are starting to be workedout. As we learn more about the abnormal processes inthe brain cells in these conditions, treatments that may slow,stop or even reverse their course will become possible.

ATYPICAL PARKINSONISM continued from page 1

10

APDA FALL 2007

When should one go to a physical therapist?Individuals should be referred to a physical ther-

apist when there is a loss of ability to carry outfunctional activities or life roles associated with adisease, injury or dysfunction.

Persons with Parkinson's disease (PD) mayfind the need to see a physical therapist (PT) atvarious stages throughout the course of their dis-ease. With a new onset of neurological prob-lems or when newly diagnosed, a PT may behelpful in establishing a safe exercise programand providing education to clients and familymembers. With changes in function, thetherapist may assist with functional skillsre-training, home modification recom-mendations, adaptive equipment, bal-ance training, or just instructingcaregivers. As the persons withParkinson's disease require follow-upwith their physicians, the physicaltherapist should be seen as a resourceto improve the quality of life and easestresses which may be related to physical limitation.

Problems associated with Parkinson's disease thatmay benefit from PT are:

•Getting in and out of bed•Walking•Going up and down stairs•Carrying out life roles in a safe, independent and efficient manner.

•Inability to return to work or recreational activities•Loss of flexibility and strength•Dizziness•Impaired coordination•Decreased endurance•Poor balance•Falls•Difficulty with mobilitySome states allow you to go directly to a physical

therapist without a physician's referral first, however,your insurance policy may require a visit to the primarycare physician first or may limit access to preferred

providers.Choosing a physical therapistYou can choose your own physicaltherapist. Your therapy should be pro-vided by a licensed physical therapist

with a graduate degree from anaccredited physical therapy pro-gram and who has passed thenational licensure examination.The minimum educational require-ment is a master's degree, yet mosteducational programs now offeralso the doctor of physical therapy(DPT) degree.

Is there a therapist right forme?

Physical therapists have wideranges of experience and specializa-

tions. Many outpatient clinics will spe-cialize in orthopedics, while many hos-pital based clinics will specialize in neu-

rology. Just like a physician, which thera-pist you choose to go to may depend onyour specific needs. There are many PTswho have specialized training and have

gone on to receive advanced certification

HOW TO

CHOOSE aPHYSICALTHERAPIST

By Jeffrey Hoder, PT, DPT, NCSMovement Disorders Clinic

Emory University, Atlanta, Ga.

11

in areas such as neurology, geriatrics and orthopedics.The American Board of Physical Therapy Specialties

offers board certification to therapists who provide asubstantial amount of clinical proficiency and havepassed an extensive examination.

A person with a history of Parkinson's disease maychoose to go to a physical therapist who specializes inneurology.

What is a Neurologic Clinical Specialist (NCS)?A NCS is a licensed physical therapist who has com-

pleted more than 4000 hours of neurologic clinical prac-tice while working with individuals who have neurolog-ic dysfunctions and has demonstrated competency in thefollowing areas:

•Patient care (examination, evaluation, diagnosis,prognosis, intervention)

•Patient education•Interpretation of research administration consultation•Passing the neurologic clinical specialist examina-

tion and being certified in neurologic physical therapyby the American Board of Physical Therapy Specialties(ABPTS).

What can one expect from a therapist?Neurologic physical therapists perform examination

and evaluation to establish:•A functional diagnosis•A prognosis for functional recovery•The need for physical therapy services•A plan of care which may consist of direct interven-

tion, coordination of services and discharge planningInterventions may include:•Therapeutic exercise•Muscle strengthening•Stretching •Aerobic conditioning•Sensory training•Coordination of movement•Balance training•Functional skills training•Instructing patients in directing their own care•Instructing caregivers in assisting with mobility•Environmental evaluation•Discharge planning

•Case management•Referring to other professionals•Aquatic exercises

•Documentation, communication with others, •Patient - related instructions•Striving to help their patients/clients to achieve goals.If balance tends to be the main issue, there is a num-

ber of physical therapy clinics and physical therapiststhat specialize in balance retraining. “Vestibular rehabil-itation” specializes in balance, dizziness and inner earfunction. If orthopedic issues tend to be the major prob-lem (joint replacement, fracture, back pain), many out-patient clinics specialize in orthopedics and sports med-icine. It may be wise to inquire if the therapist hasworked with clients who have Parkinson's disease.

Your first visit should include an evaluation by thephysical therapist. Based upon the results of the exami-nation, you and your therapist should work together toset specific goals to optimize function that you wouldlike to achieve during your course of therapy.

Goals may include:•Remediate impairments or learn compensatory

movement strategies•Reduce functional limitations (a restriction of the

ability to perform an activity or task in an efficient, typ-ically expected, or competent manner)

•Optimize health and well being•Prevent injury, functional limitation and disability.The therapist should design a plan of care and pro-

pose a timetable to achieve these goals. He/she will like-ly provide you with instructions to perform exercises athome to facilitate your recovery to meet your goals.

To locate a PT who specializes in neurological care inyour area, you can go to www.neuropt.org and click on“locate a NCS therapist” towards the bottom of thepage.

Much of this information has been taken directlyfrom the APTA and Neurology Section of the APTAwebsites on finding a PT.

This article has been adapted from the one appearing inthe Spring 2007 issue of the APDA Atlanta, Ga.Information and Referral Center newsletter.

FALL 2007 APDA

APDA WINTER 2008

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

EDUCATIONAL BOOKLETS1. Basic Information about Parkinson’s Disease

Brochure (English)2. Parkinson’s Disease Handbook - Symptoms, causes, treat-ment - booklet (English, German, Italian)3. Be Active - An exercise program for people with Parkinson’s

disease - booklet (English)4. Be Independent- Equipment and suggestions for daily liv-ing

activities - booklet (English)5. Speaking Effectively - Speech and swallowing problems in

Parkinson’s disease - booklet (English)6. Good Nutrition - booklet (English)7. Young Parkinson’s Handbook - booklet (English)8. Aquatic Exercise for Parkinson’s Disease - booklet (English) 9. My Mommy Has PD... But It’s Okay! - booklet for

young children.

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

EDUCATIONAL SUPPLEMENTSThe Family Unit; The Fine Art of “Recreation & Socialization”with PD; Mirapex® in the Treatment of PD; Fatigue in PD;Healthy Aging; Keys for Caregiving; Medications to BeAvoided or Used with Caution in PD; Neuro-Opthamologyand PD; Medical Management of PD and MedicationsApproved for Use in the USA

DVDManaging Parkinson’s - Straight Talk and Honest Hope.Created by the Washington State Chapter of APDA for newlydiagnosed Parkinson’s patients and their loved ones.

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

WORLD PARKINSON DISEASE ASSOCIATION WEB

SITEwww.wpda.org. A weekly updated source of world news.

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

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

12

The National Center for Comple-mentary and Alternative Medicine(NCCAM) at the National Institute ofHealth is dedicated to exploring compli-mentary and alternative healing practicesin the context of rigorous science, trainingcomplementary and alternative medicine(CAM) researchers, and disseminatingauthoritative information to the publicand professionals.

Medline Plus: Drugs and Supplementswww.nlm.nih.gov/medlineplus/druginfo/herb_all.html offers extensive informationincluding background, uses, safety,evidence for, dosages, and potentialinteractions for more than 100 vitamins,herbs and supplements.

Center For Complimentaryand Alternative Medicine

Age Does Have Its Rewards

A charitable gift annuity can mean guar-anteed life income for you while assuringyour legacy in helping APDA's mission tofind a cure for PD and support those withthe disease and their caregivers. Rates arecalculated by age, so the older you are, themore you will receive. Your financial protec-tion is also a Parkinson's patient's hope.

Age Rate of Return60 6.4%65 6.7%70 7.2%75 7.9%80 8.9%85 10.4%90 12.0%

Call Executive Director Joel Gerstel at800-223-2732, ext.120, to discuss annuitiesand other planned-giving opportunities.

Information on Parkinson’s Disease