2009 summer newsltr parkinson ali

Living with Parkinson’s DiseaseDr. Arshia Sadreddin, Movement Disorder Fellow

FromMuhammad Ali to SalvadorDali…Adolf Hitler to Pope JohnPaul II…actress Mary Jackson topolitician Janet Reno, Parkinson’sdisease (PD) has touched lives ofpeople all over the world.Parkinson’s disease was first formallydescribed by James Parkinson in1817 in his famous “An Essay on theShaking Palsy”. There are about 1.2

million people in North America with this disease.About 50,000 people are diagnosed with PD each year.PD affects men slightly more than women. Parkinson’sdisease occurs evenly across all occupations andsocioeconomic groups. Parkinson’s symptoms includetremor at rest, bradykinesia or slowness of movements,rigidity or stiffness and balance and gait abnormalities.In addition, Parkinson’s disease can have non-motorsymptoms including mood changes specificallydepression, anxiety, pain, and sleep disturbances suchas vivid dreams with hyperactivity during sleep. Assymptoms progress, the autonomic nervous systemwhich controls the involuntary actions of our organssuch as those that regulate blood pressure and heartrate, genitourinary systems and gastrointestinalsymptoms, can be affected.

The battle against Parkinson’s disease doesn’t onlyoccur in research laboratories or in your doctor’soffice. The battle begins at home with you and yourfamilies. In order to do well against this progressiveneurodegenerative disease, patients and carepartnersneed to be informed about the symptoms it causes, beable to communicate these complaints effectively totheir neurologist, and to be compliant with thetreatments that are prescribed.

Taking control of your disease begins with education.So, I encourage becoming educated about thesymptoms of PD by attending the educationalprograms like PD 101 and PD 202 offered by theMuhammad Ali Parkinson Center as well as lookingonline or by reading books about Parkinson’s disease.As new symptoms develop, it is important to discuss itwith your physician. It is often useful to attend doctor’svisits with a family member or a carepartner who cancommunicate with the physician the symptoms youmay be having or difficulties you may be experiencingin day to day activities. Some patients find it useful tokeep a log of their symptoms. You should always carrywith you an updated medication list including namesof medication, dosages, number of tablets, and thefrequency with which each medication is taken.

The goal for each visit with your neurologist is to see ifthe Parkinson’s disease has progressed and what needsto be done to catch up with the disease in order tooptimize quality of life – yours and your family’s.What we look for on each visit is how the patient isfunctioning in activities of daily living or things thatyou do each day. Since Parkinson’s disease can affectvarious parts of the body, we look specifically for howyou are sleeping, how capable your memory is, and ifyour mood has changed. In addition, we want to knowif there is an activity that you are having more difficultywith compared to your prior visit. This may be change in

ParkinsonNEWSSouthwest

A NATIONAL PARKINSON FOUNDATION CENTER OF EXCELLENCE Summer 2009

Muhammad Ali Parkinson Center at Barrow Neurological Institute®

InsideThe New MAPC . . . . . . . . . . . . . . . . .Page 3The Cost of Long-Term Care . . . . . .Page 4Raul Yzaguirre Symposium . . . . . .4The Southwest Parkinson News contains information provided as a serviceand is not intended to constitute medical advice or views. Patients shoulddiscuss information regarding medical management with their physician.

Continued on page 2

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your swallowing, handwriting or worsenedtremor or stiffness. We want to know if youhave fallen or if you get lightheaded whenyou standup. In addition, your neurologistsneed to know if there have been changes inyour urinary control or frequency as well aschanges in your bowel movements or sexualfunction. Moreover, with each visit, we wantto know if the medications are lastingbetween each dose or do they wear offearlier. If you are experiencing largeinvoluntary movements after taking yourmedications, this might be a sign ofdyskinesias which tell us we may need to cutback on your dosage or possibly add anothermedication. Some patients may developcramping. The timing of these symptoms inrelation to your medication doses is veryimportant. If there are changes in patients’behavior such as hallucinations orcompulsive behaviors, your doctors need toknow, as it may be the side effect of one ofyour medications.

Although Parkinson’s disease is a progressivedisorder, it is not fatal. If complications fromPD are controlled or minimized such asinfections or falls, people with Parkinson’sdisease can do well for many years. The fieldof neurology and our understanding ofParkinson’s disease are expanding every day.In addition, the number of research studiesbeing done throughout the world is too manyto count. Any day there may be a newmedication coming to market that may slowdown the progression of Parkinson’s diseaseor be able to tackle its symptoms moreeffectively. With advances in neurosurgery,deep brain stimulation surgery may be a verygood treatment option for some patients.

The take home message here is that there isdefinitely hope for people with Parkinson’sdisease. It is a battle each day for thepatients, their carepartners and families. Butthe battle can only be won if you have apositive attitude, and if you arm yourselfwith information.

Living with Parkinson’s DiseaseContinued from page 1

Summer 2009 • Southwest Parkinson News

Check it Out

John Argue’s new DVD “Parkinson’s Disease & Activities ofDaily LivingThe “Activities of Daily Living” DVD is a great tutorial with clear,easy to follow demonstrations to help with every day movementsituations- including getting in and out of the car, getting up anddown from the floor, in and out of a chair, in and out of bed andchanging sleeping positions- to name a few. The DVD alsoaddresses tips for caregivers to help with verbal cuing and hands onassistance when necessary. It is a nice complement to themovement strategies John developed in his “Art of Moving”program, as the DVD translates his exercises and movementprinciples into functional, day-to-day activities. The DVD is full ofhelpful tips for people with PD and their caregivers- and when putinto practice, these tips will help make life easier and safer. TheDVD is conveniently formatted so it can be viewed in its entirety, orif people choose, they can click on a specific chapter (section) theyare working on (or wish to review) and scroll through that chapter’smenu and select their desired topic. The 55 minute DVD isavailable for $27.00. For more information, please call (510) 985-2645 or www.johnargue.com.

Renee Le Verrier’s book “Yoga for Movement Disorders:Rebuilding Strength, Flexibility and Balance for Parkinson’sDisease and Dystonia”Renee is a yoga instructor in the Boston area who has Parkinson’sdisease. Renee has accomplished adapting traditional yoga poses topeople with specific challenges. For instance, balance issues areaddressed through chair support, and many of the exercises aredone from the chair rather than standing. Her book is easy tounderstand with its clear directions and large photos and its bindingallows the book to lay flat and open on the desired page. As Reneetestifies “Practicing yoga can help you get back in balanceemotionally and physically. The non-judgmental, peaceful centerwithin yourself is a healing place. Yoga is a path to that center. Itwon’t cure the disorder, but it can bring you gently back to yourself.”The book is available at www.amazon.com and sells for $14.95.

Mary Spremulli’s “Vocie Aerobics” ™ DVDMary Spremulli, MA,CCC-SLP, is a medical speech pathologist andlicensed nurse, with over 25 years of health care experience. Marydeveloped Voice Aerobics™ - an exercise program focused on breathsupport, posture and vocal function exercises for improved vocalperformance. The DVD combines vocal function exercises with ageneral workout and provides individuals with an opportunity towork-out and strengthen their voice and communication strategieson their own, in their own home. The 3-part DVD is available for$20.00. For more information, please go towww.voiceaerobicsdvd.com

My name is Nancy Bivins and Iconsider it such an honor to be thesocial worker at the Muhammad AliParkinson Center. The Center is anexciting place, offering programs, andeducational opportunities that arehelpful and encouraging for thosefacing the challenges of PD.

I have already been involved in the multidisciplinary clinic,support groups at three different sites and I am scheduled toteach Powerful Tools for Caregivers in theWest Valley. Theseare all things that I enjoy very much and I look forward togetting acquainted with the patients and their families.

Although I am a native of Colorado, I have lived in Phoenix29 years. I was definitely destined to live in the desert, becauseI don’t mind the heat and I find the desert to be amazing.Hiking has become one of my favorite activities since there isa mountain only 1.5 miles frommy house. In the summer Iusually hike at least a couple times per week before going towork. As soon as the parking lot at the mountain is open at 5a.m. I will be there. One of the benefits of being out that earlyis getting to see a spectacular Arizona sunrise.

My door is always open, so the next time you are in theCenter please stop in and introduce yourself. It will be apleasure to meet you.

3Summer 2009 • Southwest Parkinson News

The New MAPC

The Muhammad Ali Parkinson Center (MAPC) willmove into a new facility in the Fall of 2009. The 9100square foot space will be located on the third floor ofthe Muhammad and Lonnie Ali Pavilion which islocated on the northeast corner of 3rd Ave andThomas Rd. It will house one of the mostcomprehensive Parkinson’s centers in the country.

The clinical side of the center will include 10 examrooms, a tremor exam room, a Botox treatment roomand a tilt room to help evaluate patients with

orthostatic hypotension. The expanded MAPC willinclude the addition of dedicated Physical,Occupational and Speech therapists to the teamaccompanied by the necessary treatment areas and abalance lab, a multipurpose room for education andrecreation classes, a resource room with books, videosand computers and a store featuring educationalmaterial and adaptive equipment. The Center willoffer one-stop shopping for patients.

“The new space will allow us to be a model for the restof the country to demonstrate how integrated care canmake a difference” says Margaret Anne Coles, MAPCprogram manager.

Welcome Nancy Bivins

The Cost of Long-TermHealth CareBy Richard A. White, Esq.JacksonWhite Elder Law

The cost of providing long-term health care benefits toParkinson’s patients is amajor concern to thoseafflicted with this diseaseand their families. In-homecare providers can costbetween $15 to $25 perhour, while full-time care atskilled nursing facilitiescosts on average between$5,000 and $6,500 dollars

per month in Arizona. Most of us would findit difficult, if not impossible, to pay for thiscare on a sustained basis without someassistance. Fortunately, there are programalternatives that will assist with thesenecessary medical expenses.

The purpose of this article is to provide abrief review of the major long-term carefinancing options available to Parkinson’spatients and their families. To be fair and inthe spirit of full disclosure let me first qualifymy remarks by advising you that I am anattorney that practices in this area of the law.Our firm has consulted and worked withthousands of clients over the past decade andI am slightly biased in what I think providesthe best means to assist a family strugglingwith the cost of care. However, by evaluatingthe various available options and applyingthose options to your particularcircumstances you should be able to concludewhat route is best for you.


Long-term care insurance: If long-term care insurance waspurchased while the Parkinson’s patient was healthy this wouldbe a solid financing option. I have many clients who havepurchased policies who are now using these policy benefits topay for care. However, because only healthy individuals withthe means to pay the premiums will qualify, individuals with aParkinson’s diagnosis will not usually qualify or the premiumwould be cost prohibitive. If you are healthy prior to thepurchase of a policy, do your research and carefully read andreview the policy to see exactly what you are getting prior tothe purchase. Remember the benefits you can rely on will becontained in the written policy and not on what you thoughtthe insurance agent told you. It may be a good idea to have anindependent professional who is familiar with long-term carepolicies review the policy before you make the purchase.

Self-funding: Those individuals who are financiallyindependent can utilize savings and pensions to pay for care. Igenerally do not see these individuals until such time as theyhave spent down a significant portion of their savings. I wouldsuggest that even if the individual is financially well off, areview of future financing alternatives with a professionalknowledgeable in what is available to supplement the costwould be a wise investment. For example, there is aconsiderable effort to market reverse mortgages andinappropriate annuities to seniors under the theme of payingfor long-term care. These products may be totallyinappropriate and an independent perspective from someoneother than the salesman may be beneficial.

Medicare:Many individuals have the misconception thatMedicare will pay for long-term custodial care because thisentitlement program may, and I stress “may”, provide up to 100days of coverage in a skilled nursing facility. Long-term benefitsthat exceed these covered Medicare days are not covered underthe program and will require alternative financing.

Veterans benefits: Veterans who served during a wartimeperiod and who were discharged from services under anythingother than dishonorable conditions may also be eligible formonetary benefits under the disability pension and aid andattendance programs. These programs can help pay for thecosts of long-term care. Veteran’s spouses may also be eligible.The dollar amount a veteran receives is based on the type ofbenefit (i.e. disability pension or aid and attendance), incomelimits, and other objective resources limitations. The highestamount I’ve seen a veteran receive was about $1,800 a month.The lowest amount was about $90 a month. The difference inawards is based on income levels and level of care required. Ifyou think you may qualify, it’s in your best interest to discussyour financial information with someone familiar withVeteran’s benefits so you obtain the maximum amount foryour situation.

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“It is my hope that with tools likethese, families will be armed with theknowledge necessary to receive the

assistance they require.”


“An early morning walk is a blessingfor the whole day."

—Henry David Thoreau

ALTCS: This is the program that provides thegreatest benefit to the individual and is the programwe recommend to most of our clients who requireassistance in obtaining and paying for long-term carebenefits. ALTCS stands for the Arizona Long TermCare System. It is Arizona’s Medicaid program. ALTCSprovides a way for Parkinson’s patients to receive theassistance they need. A wide variety of services areavailable through ALTCS, including:

• Full coverage of acute care services: This includesdoctors, hospitalization, prescriptions, lab work, x-rays, tests, and specialist treatments.

• Nursing home care: This includes care providedin a licensed nursing facility, residential carefacility, or intensive care facility.

• Home and Community Based Services: Thisincludes home health nursing, rehabilitation, adultdaycare, personal and respite care, medicaltransportation, mental health services,homemaker services, attendant care, home healthaids, and delivered meals.

• Services for developmentally disabled adults andchildren: ALTCS has a branch specificallydesigned for developmentally disabled adults andchildren, which provides special benefits.

To qualify for ALTCS, individuals must meet medicaland financial eligibility requirements. Parkinson’spatients generally meet the medical requirements, but itsometimes requires planning to satisfy the financialrequirements. Because the financial requirements arecomplicated, individuals may require professionalassistance to guide them through the process.

Although I was able to touch briefly on all of the abovemethods of helping to finance long-term health care,this should only be the beginning of educating yourselfon these options. Please take a look at our Web site,www.arizonaseniorlaw.com. This site contains a wealthof information for families who want more informationon long-term care. In May of 2009, JacksonWhite ElderLaw will also be releasing MyALTCS(www.myaltcs.com), a web-based ALTCS applicationprogram that guides you through the eligibility process.It is my hope that with tools like these, families will bearmed with the knowledge necessary to receive theassistance they require.

Walking with PolesDarolyn O’Donnell,Recreation Therapy Coordinator

Approximately 75 people attended MAPC’sinteractive workshop on how to walk safely withpoles and use poles correctly for mobility andbalance. Jayah Faye Paley, a trekking andwalking expert and author of the DVD “Poles forBalance and Mobility”, arrived on the scene with70 plus pairs of high quality poles which wereindividually fitted to each participant. Peoplewith PD and their caregivers practiced not onlythe basic essentials of pole walking but alsolearned mobility techniques for navigatingchallenging elevation changes such as stairs,ramps, and curbs. Once participants were instride with their poles, many were pleasantlysurprised how poles helped increase theirconfidence with the extra points of contact tothe ground for balance and how the poles helpedthem to stand taller and facilitate the swinging ofboth arms.

The MAPC, in conjunction with Banner Healthand Arizona State University, is currentlyrecruiting people for a pole striding researchstudy to be held in Sun City West with a possiblesecond location in Scottsdale. Participants willwalk for 45 minute three days a week for 12-weeks. The purpose of the study is to determineif regular exercise that involves walking withpoles can reduce PD severity and cause favorablechanges in brain function. If you are interestedin participating, please call Darolyn O’Donnellat the MAPC - 602.406.6903. If you areinterested in purchasing Paley’s DVD, please goto www.polesformobility.com.

6 Summer 2009 • Southwest Parkinson News

Walk the FightBy John YonushonisPresident Parkinson’s Network of AZ

People care about us and our ability to enjoy life! Aspresident of any organization, one gets very nervousputting on an event like a Walk in these turbulentfinancial times. I must say that as a testament to the

strength of our Parkinson community, the Walk wasthe most successful we have had and the most fun.

People came from all stages of life either to walk insolidarity or join their fellow team members to walkin unity for an afflicted person. Creating a team is agreat way to show the respect one has for theindividual whose daily challenges are only known bythose of us who have Parkinson’s.

The day started beautifully. When I arrived early onSunday, the clouds were dissipating and the sun wasshining brightly. The volunteers, twenty of whomwere pre-Med students from Arizona State Universityarrived and within minutes they had the health fair,registration and the course areas marked. With a littleingenuity, the Start sign was erected, donated againthis year by the Coors Brewing Company and thefood, donated by Basha’s was laid out. The DJ began

playing music and Registration started.

Then the part that made us all happy - everyonestarted coming. SCAN LTC Corporation brought 45employees to support our cause. A wonderful ladygave a large gift of cash and wished no recognition –only that the money be used to help Parkinsonians.

Before the Walk started, we had the traditional

speeches. After my thanks to everyone and a wordfrom Jack, we had a moment that moved everyone totears. Dr. Lieberman spoke of Rosebelia, aParkinsonian who has not walked in two years. Thatis, she had not walked until she got involved with theMuhammad Ali Center. Not only can she walk but shewalked up to the microphone and spoke in bothEnglish and Spanish of her thanks and love for theMuhammad Ali Center. Everyone had tears of joy.

Tom Lescault, CEO or SCAN then spoke and startedthe Walk. The net result, we will be awarding a checkof $20,000 to the Center on April 14th and everyone iswelcome.

I thank everyone involved – the Board,the volunteers, the sponsors but most of all,

the participants.

“...the Walk was the most successful we have had...”


Survey ResultsMargaret Anne Coles, Program Manager MAPC

A few months ago the Muhammad Ali Parkinson Centersent out a survey to people with PD and theircarepartners. The survey asked questions about currentprograms and services offered by the MAPC, futureneeds and about their carepartner experience. A bigthank you to all of you who responded. Thisinformation is invaluable to us as we begin to review ourcurrent programs and plan for next year, which for usbegins in September.

Here are the highlights of the survey responses. Wehope you find them interesting.

People with PD• The average age of the people that responded to thesurvey was 71.9 years and the average length of timesince diagnosis was 8 years.

• 64% of the respondents were male• 78% of respondents were living with their spouse• 70% rated their health as “Good” or better• Knowledge about PD was rated at 6.7 on a 10 pointscale

• 64% of respondents had attended educationalprograms- mostly PD 101 and the Mo Udall annualeducational symposium; the majority of respondenthave attended more than 1 program

• Usefulness of the information for dealing with PD ona day to day basis was rated at 7.8 on a 10 point scale

• 42% of respondents would prefer morning educationprograms; 62% morning recreation programs

• 90% were willing to drive at least 20 miles to attendeducation programs; 56% 0f people were willing todrive less than 10 miles for recreation programs

• The top 5 topics of interest: Medical/ResearchUpdates, Managing disease progression, Medications,Changes in my life , Coping techniques and exercise

• 44% of respondents have attended recreationprograms, primarily Art of Moving

• Improvement in symptoms as a result of attendancewas rated at 6 on a 10 point scale

• Additional classes of interest: Strengthening,stretching and relaxation

• The main reason people did not attend programs wasthat they were unaware of them

• 49% of people indicated that their level of interest inthe newsletter was “high” and 52% rated theimportance of the newsletter as “Very Important”

• The overall satisfaction with the newsletter was rated4.3 on a 5 point scale

• 32% of respondents regularly attend Support Groups;56% knew where their nearest Support group meets

• 80% favored monthly Support Group meetings withthe majority of people supporting afternoon meetings

• Top topics to be addressed in Support Groupmeetings: Medical/Research Updates, Copingtechniques, Medication, Exercise and Psychologicalissues such as depression and anxiety

• Most people receive their information about PD fromphysicians, books, the internet and MAPC courses;people indicated that they would like to learn moreabout PD through the newsletter and educationcourses.

Carepartners• The average age of the carepartners that responded tothe survey was 70 years and the average length of timesince diagnosis of the person they were caring for was7.6 years.

• 72% of the respondents were female• 53% rated their health as “Good” or better• The average numbers of hours a day that help, care orsupervision was required was 8 hours althoughresponses ranged from 0-24 hours.

• 58% of carepartners reported that the person theycared for could be left alone

• Most common problems experienced as a result ofcarepartnering: Meeting personal needs such aspersonal time and exercise, dealing with dangerous,unwanted or difficult behaviors, understandinggovernment programs and communication withprofessional providers

• Services that would be of the most value: Central placeto call to find out what help is available and where toget it; PD specific information about cognitivechanges, dealing with dangerous, unwanted ordifficult behaviors.

• Most carepartners were unaware of the specificcarepartner services provided by the MAPC (Powerful Tools for Caregivers course, CarepartnerSupport Groups and Social Work Services)

• Barriers to receiving carepartner services: Location ofprograms, unaware of programs, feeling overwhelmed,time of day and depression.

• Carepartners receive their information about PD frombooks, MAPC education programs and SupportGroups. They would like to learn more from thenewsletter and conferences.


Back in the GameDarolyn O’Donnell, Recreation Therapy Coordinator

The Sun City Country Club (SCCC) was a buzz thisJanuary with lots of putting, chipping, pitching, drivingand, to be honest, some occasional shanking and slicingas the Muhammad Ali Parkinson Center sponsored itsannual golf clinic for people with PD. Over the course ofthe five-week clinic, MAPC staff provided participantswith education centered on golfing and living with PD.

Participants also received golf instruction from SCCCgolf pro Steve Lackey, who is truly an authority on golfand PD as Steve himself has been living with PD forseveral years. Steve is a terrific role model as he has

continued to stay in the game- the game of golf and thegame of life. Steve remains very active in spite of diseaseprogression, and has maintained a positive attitude andfun sense of humor.

Tradition has it that the last session of the clinic is alwaysa Golf Skills Challenge and this year was no exception,although this year’s challenge had an unexpected guest--rain. The skills challenge brought out the usualcompetitive spirit of the golfers and the unusual (in AZ)colorful umbrellas. Real golfers don’t stop for rain - theyplay through and play on. For some the rain may havebeen good luck, as there were phenomenal putts andsome exceptionally straight and long drives.

The goal of the golf clinic is not about making peoplewith PD better golfers, it is really about getting folks backin the game, at any level. The very first week, MAPC staffquickly verbalized a disclaimer releasing responsibility forany guarantee to improve golf scores, yet it wasn’t longbefore several of the participants found themselves at thetop of their game. Golf scores were falling. One golferboasted that he was able to beat his regular golf buddy,something he hadn’t done in quite a long while. Sweet.Even sweeter? Every golfer was back in the game. Rainor shine. Playing through and playing on.

Parkinson’s Disease andCombating Freezing EpisodesParkinson’s disease is a neurological disorder that oftenimpairs a person’s motor skills, speech, and other mobilityfunctions. Parkinson’s disease is caused by a loss ofdopamine producing brain cells. While Parkinson’s diseasecan cause patients to display a variety of symptomsthroughout the course of the disease, a common symptomthat appears after a few years is a temporary, involuntaryinability to move called freezing.

Freezing can adversely affect the patient’s mobility. Whenthese episodes occur the person’s legs literally freeze andhis/her feet are stuck to the floor. These episodes can lastanywhere from a few seconds to several minutes andcreate a large danger of the person falling at the beginningor end of the episode due to their unpredictability. Peoplesuffering from the freezing episodes may encountersituations that ultimately lead to these episodes, such asfatigue/stress, walking in crowds or narrow hallways,

sudden obstructions, and confined spaces.

The causes of these freezing episodes are unknown.However, there are several things a person can do to helpcombat them. Something you might want to consider isthe use of a laser light, which helps guide the personthrough obstacles, move more comfortably, and increasestride length. Products such as the U Step WalkerAdvanced Walking Aid combined with the U Step LaserLight, and the Laser Cane have effectively helped combatfreezing episodes in numerous Parkinson’s patients. TheLaser Cane projects a red beam on the ground in front ofthe patient when pressure is placed on it, and can beadjusted according to the patient’s height. The U-StepWalker is the ultimate mobility aid for Parkinson’s patient,offering the optional laser light along with brakes that areactivated when they let go of the handle. The u-shapeddesign provides stability in all directions while the paddedseat gives them a place to rest when needed. Both productsare available at several places includingwww.ActiveForever.com.


Avondale • Litchfield Park • GoodyearExerciseThe Art of Moving Exercise ClassThursdays 10-11 am; Jan. 8 - July 30Skyway Church of the West Valley14900 W. Van Buren, Goodyear

Carefree • Cave Creek • North ScottsdaleExerciseThe Art of Moving Exercise ClassTuesdays 10-11 am; Jan. 6 - May 19SonRise Community Church29505 N. Scottsdale Rd.(Scottsdale & Dixileta Dr.)

ChandlerExerciseThe Art of Moving Exercise ClassTuesdays 2:30-3:30 pm; Jan. 6 - July 28Village Oaks Assisted Living1919 W. Carla Vista Dr.(Dobson & Chandler Blvd.)

East Phoenix • ScottsdaleExerciseThe Art of Moving Exercise ClassTuesdays 2:30-3:30 pm; Jan. 7 - July 29Shepherd of the Hills Congregational Church5524 E. Lafayette Blvd.(56th St. South of Camelback)

Fountain HillsExerciseThe Art of Moving Exercise ClassFridays 9-10 am; Jan. 9 - July 17Fountain Hills Senior Center13001 N. La Montaña

Mesa • East MesaExerciseThe Art of Moving Exercise ClassMondays 1-2 pm; Jan. 12 - July 27Red Mountain Multigeneration Center7550 E. Adobe Road, East Mesa

ExerciseThe Art of Moving Exercise ClassWednesdays 1-2 pm; Jan. 7 - April 30Apache Wells, Room C, 2274 N 56th St.

Tai ChiThursdays 2 classes:10-11 am, 11 am-12 pm; Jan. 8 - July 30Victory Lutheran Church5946 E. University(University & Recker Road)

PhoenixExerciseThe Art of Moving Exercise ClassTuesdays 2-3 pm; Jan. 6 - July 28Muhammad Ali Parkinson Center500 W. Thomas Road, Suite 720

Voice ClassTuesdays 3-3:30 pm; Jan. 6 - July 28Muhammad Ali Parkinson Center

Tai ChiWednesdays 1-2 pm; Jan. 7 - July 29Muhammad Ali Parkinson Center

Ejercicio en EspañolEl Arte del MovimientoSabados del a 10-11 amEnero 17 a Junio 27Church of Beatitudes555 W. Glendale Ave., Room #14

PrescottExerciseMondays, Wednesdays & Fridays; 10-11 amYavapai Regional Medical Center~Wellness Center930 Division StreetRegistration & Information 928-771-4783

Summer 2009 Pull-Out SectionRecreation and EducationIn order to plan safe and effective classes, all classes require pre-registration. Exercise classes are only $5 perclass. Education classes are free. For further information and/or to register, please call: 602-406-6903.

EnEspañol


Recreation and Education continued

Art of Moving(Non-MAPRC sponsored)The following classes are also available in the valley atthe following locations. The Muhammad AliParkinson Center does not directly sponsor theseclasses. Class fees vary.

ScottsdaleExercise ~ Art of MovingThursdays, 10-11 amHealthSouth Outpatient (SW side of the building)

AquaticsMondays &Wednesdays, 12-1 pmHealthSouth Pool

HealthSouth, 9630 E. Shea Blvd.Instructor and Contact Person:Melinda Theobald 480-551-5423

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ScottsdaleDance & Movement w/ASUMovement & Motion 9:30-10:30 amLatin Salsa 10:30-11:30 amTuesdays, begins Jan. 14Skysong(SE corner of Scottsdale Rd & McDowell)

ExerciseThe Art of Moving Exercise ClassTuesdays 10-11 am; Jan. 5 - June 30Freedom Inn, 15436 N. 64th Street(Greenway & 64th St.)

Tai ChiThursdays 10-11 am; Jan. 8 - June 25Freedom Inn, 15436 N. 64th Street(Greenway & 64th St.)

Sun CitiesExerciseThe Art of Moving Exercise ClassThursdays 1-2 pm; Jan. 8 - July 24American Lutheran Church of Sun City17200 N Del Webb Blvd.

ExerciseThe Art of Moving Exercise ClassMondays 10-11 am; Jan. 5 - July 27Shepherd of the Hills United Methodist Church13658 Meeker Blvd, Sun City West(Meeker & R.H. Johnson)

Sun LakesExerciseThe Art of Moving Exercise ClassMondays 10:30-11:30 am; Jan. 5 - July 27Sun Lakes United Methodist Church9428 E. Riggs Road

Tai ChiThursdays 11:15 am-12:15 pmJan. 8 - July 30Sun Lakes Country Club, Mirror Room25601 S. Sun Lakes Blvd.

TempeExerciseThe Art of Moving Exercise ClassThursdays 1-2 pm; Jan. 8 - July 23First Baptist Church of Tempe4525 S McClintock Drive

Contact Kris Watts at (602) 406-4921 or visit www.maprc.com for detailed informationregarding meeting locations, dates and topics of a support group near you.

Specialty Groups

Deep Brain Stimulation (DBS)Muhammad Ali Parkinson Center500 W. Thomas Rd Ste 720Phoenix, AZ 850134th Friday of the Month, 1:30- 3:00 pmThis is for those who have, are going to have or wouldlike to have the DBS surgeryContact: Kris Watts 602-406-4921 or [email protected]

Singing Group“The Tremble Clefs”Scottsdale Senior Center-Granite Reef1700 N. Granite ReefScottsdale, AZEvery Thursday, 4:00- 6:00pmContact: Ethel Harris at [email protected]

“The Tremble Clefs”Shepherd of the Desert Lutheran Church11025 111th AveSun City, AZEvery Wednesday, 10:00-NoonContact: Patty Hatton (602-406-3840)

Spanish Let's Talk (Platiquemos)Beatitudes Center D.O.A.R.555 W. Glendale AvePhoenix, AZ2nd Saturday of the Month, 10:30-11:30amFavor llamar a Claudia 602-406-2453

Caregiver Groups

Caregiver WellnessMuhammad Ali Parkinson Center500 W. Thomas Rd., Ste. 720Phoenix, AZ 85013Every Tuesday, 2:00-3:30 pmCoincides with PD Exercise ClassContact Nancy Bivens 602-406-4266

Caregiver WellnessSkyway Church of the West Valley14900 W. Van Buren, Goodyear, AZ2nd Thursday of the Month, 10:00-11:00 amContact: Donna Hepperman, MSW 602-274-5022

Caregiver WellnessFountain Hills Community Center13001 N. La Montana Dr.Fountain Hills, AZ 852681st Monday of the Month, 10:30 am-12:00 pmContact: Jim 480-209-8755

Caregiver WellnessSun Lakes Country Club~Phase 1Sun Lakes, AZ1st Friday of the Month, 1:30-3:00pmContact: Grace Roth 480-895-1734 orKris Watts 602-406-4921

East Valley

Sun LakesSun Lakes ClubhouseSun Lakes, AZ3rd Thursday of the Month, 1:00-2:30 pmContact: Grace Roth 480-895-1734Contact: Ann Kisner 480-895-0152 [email protected]

Mesa

Mesa Senior Center East7550 E Adobe Rd.Mesa, AZ 852071st Monday of the Month, 1:00-3:00 pmContact: Kris Watts 602-406-4921 or [email protected]

Tempe

Friendship VillageTempe, Arizona3rd Thursday of the Month, 2:30- 3:30 pmContact: Anne Ahland at Friendship Village480-831-3155

Scottsdale

Central ScottsdaleBrighton Gardens6001 E. Thomas Rd., Scottsdale, AZ 852513rd Friday of the Month, 2:00-3:30 pmContact: Gaye Fillmore 480-239-3759


Summer 2009 Support Group Calendar


Fountain HillsFountain Hills Community Center13001 N LaMontana Dr.Fountain Hills, AZ 852681st Wednesday of the Month, 9:00-10:30amContact: Bruce Florence 480-215-3954 [email protected]: Jim Judge 480-209-8755Contact: Elaine Metzger 480-816-9460

Phoenix

North CentralBeatitudes Center D.O.A.R.555 W. Glendale Ave,Phoenix, AZ 850212nd Thursday of the Month, 1:30-3:00 pmContact: Kris Watts 602-406-4921 or [email protected]

West Valley

Surprise/Sun City GrandCimarron Club17100 W. Clearview Blvd.Surprise, AZ1st Tuesday of the Month, 10:00-11:30amContact: Margaret Anne Coles at the MAPC602-406-4208

Northern Arizona

PrescottTrinity Presbyterian Church630 Park Ave.Prescott, AZ 863033rd Thursday of the Month, 9:30-11:00 amContact: Kay Bolander 928-778-2242Contact: Alan Richardson 928-442-1380

PaysonFirst Southern Baptist Church of Payson302 S Ash St.Payson, AZ 855411st Thursday of the Month, 11:30-1:00 pm

Verde ValleyVerde Valley Regional Medical CenterRehabilitative Services Conference Room2nd Friday of the Month, 4:00- 5:00 pmContact: 928-639-6386

KingmanKingman Regional Medical CenterDell Webb Conference Room1st Wednesday of the Month, 1:00-2:00 pmContact: Robert Baron 928-692-4640

Lake Havasu CitySenior Center450 S Acoma Blvd.Lake Havasu City, AZ 864032nd Wednesday of the Month, 1:30-3:30 pm

Southern Arizona

Casa GrandeRobson RanchSports ComplexCasa Grande, Arizona1st Monday of the Month, 10:30am - NoonContact Kris Watts at the MAPC 602-406-4921

Outside of Arizona

El Paso, TXSierra Medical Center Hospital1625 Medical Center DriveEl Paso, TX. 799022nd Saturday of every monthContact: [email protected]

Other Movement Disorders

Multiple System Atrophy (MSA)/ ProgressiveSupranuclear Palsy (PSP)Muhammad Ali Parkinson Research Center500 W. Thomas Rd Ste 720Phoenix, AZ 850132rnd Friday of the Month, 11:00- 12:00amContact: Kris Watts 602-406-4921 or [email protected]

Caregiver Groups continued


Vivir con la enfermedadde ParkinsonDra. Arshia Sadreddin, Residente del programa deDesordenes del Movimiento

Desde Muhammad Ali hastaSalvador Dali…desde AdolfoHitler hasta el Papa JuanPablo II…desde la actrizMary Jackson hasta lapolítica Janet Reno, laenfermedad de Parkinson(EP) ha tocado las vidas demuchas personas en todo elmundo. James Parkinson fue

el primero en describirla formalmente en 1817 en sufamoso escrito “Ensayo sobre la parálisis temblorosa”.En Norte América hay cerca de 1.2 millones depersonas con EP y cerca de 50,000 personas sondiagnosticadas cada año con esta enfermedad. LaEnfermedad de Parkinson afecta un poco mas a loshombres que a las mujeres y se presenta por igual entodo tipo de ocupaciones y grupos socioeconómicos.Los síntomas de la EP incluyen temblor en reposo,bradiquinesia o lentitud del movimiento, rigidez oentumecimiento y anormalidades de la marcha y elequilibrio. Además de estos, la EP puede incluirsíntomas no motores como fluctuaciones en el estadode animo, específicamente depresión y ansiedad, dolory trastornos del sueño como sueños vividos ehiperactividad durante el sueño. A medida que lossíntomas progresan, el sistema nervioso autonómico,encargado de controlar funciones involuntarias denuestros órganos como las que controlan la presiónarterial y la frecuencia cardiaca, el sistemagenitourinario y gastrointestinal, puede verseafectados.

La batalla contra la enfermedad de Parkinson no selibra solamente en los laboratorios de investigación oen la oficina del doctor. La batalla comienza en casacon usted y su familia. Para poder ganarle la pelea aesta enfermedad neurodegenerativa y progresiva, lospacientes y sus familiares necesitan informarse sobrelos síntomas que esta produce, ser capaces decomunicar estas quejas efectivamente al neurólogo ycumplir con el tratamiento que se les formula.

Para ganar control sobre esta enfermedad usted debeempezar por educarse. Por eso lo invito a que aprendamas sobre los síntomas de la EP asistiendo aprogramas educativos como Parkinson 101 yParkinson 202, ofrecidos por el Muhammad AliParkinson Center, así como buscando información enel Internet o leyendo libros sobre Parkinson. En lamedida que aparecen nuevos síntomas, es importantediscutirlos con su médico. Es recomendable ir a la citacon el doctor acompañado por un miembro de lafamilia que pueda comentarle al médico sobre lossíntomas que usted puede estar teniendo o lasdificultades que pueda estar experimentando en suvida diaria. A algunos pacientes les resulta útil llevarun diario de sus síntomas. Siempre debe tener conusted una lista actualizada de sus medicinasincluyendo el nombre de las medicinas, lapresentación, el numero de tabletas y la frecuenciadiaria con que las toma.

El objetivo de cada visita con su neurólogo es ver si suEP ha progresado y que necesita hacer paramantenerse en control de la enfermedad maximizandosu calidad de vida y la de su familia. Lo que buscamoslos doctores en cada cita es ver como está funcionandoel paciente en sus actividades de la vida cotidiana o enlas cosas que hace diariamente. Como la EP puedaafectar varias partes del cuerpo, nos interesamosespecíficamente en saber como está durmiendo, comoestá su memoria y si ha cambiado su estado de animo.También nos interesa saber si está teniendodificultades para realizar alguna actividad que antes nole daba problemas. Por ejemplo cambios en suescritura, dificultad al tragar o empeoramiento de sutemblor o rigidez. Queremos saber si ha sufrido unacaída o si se siente mareado al ponerse de pie. Suneurólogo también querrá saber si ha notado cambiosrelacionados con la orina como incontinencia ofrecuencia aumentada al igual que cambios en susmovimientos intestinales o su sexualidad. Además, encada visita nos interesa saber si las medicinas le danbuen control de los síntomas entre cada dosis, o si elefecto de éstas se le acaba antes de que sea hora de ladosis siguiente. Si ha notado que después de tomar lasmedicinas presenta movimientos involuntariosexagerados, puede ser que esté teniendo discinesias locual nos indica que necesitamos reducir la dosis de

Continued on page 14

Second Raul YzaguirreAnnual Symposium

The largest Spanish educational event in the countrydedicated to Parkinson disease

This was a very special year for our Symposium in many ways.Our Raul Yzaguirre Symposium not only was declared thelargest educational event of its kind in the country, but alsowon the sponsorship of the company Teva Neurosciences at anational level.

Teva Neurosciences, the company commercializing theParkinson medicine Azilect, understands the need forHispanic specific Parkinson’s initiatives and has launchedresources in Spanish designed to educate and increaseawareness about the disease. One of their program’s goals forthe current year was to put together or sponsor an event topromote PD education in Spanish. What a perfect matchwhen they found out about our symposium. TevaNeurosciences was a great partner that shared our philosophyof service and supported all our efforts to promote this eventand deliver it in a culturally sensitive way.

The Fiesta Room, at Tradiciones restaurant, was the perfectlocation to give the event a Latin festive flair with its colorfuldecor and delicious Mexican food. The attendants were able tolearn from three great speakers: Dr. Maria Aguilar taughtthem how to keep their brains healthy, Dr. AbrahamLieberman presented the greatest developments in thetreatment of Parkinson’s, and Dr. Victor Salazar closed theprogram with cognitive changes and dementia in PD. Besidesthe lectures, the Hispanic families had the chance to visit acommunity resource fair, admire the paintings done by thegroup of Hispanics with PD and their caregivers calledComadres/Compadres, and listen to a great motivationalspeech by our guest of honor, Mr. Raul Yzaguirre.

Education and fun paired just perfectly at this symposium,where lectures, mariachis, and dancing intertwined to giveparticipants the chance to enjoy and learn at the same time.Families, staff, vendors, and speakers shared this festiveatmosphere, all together as a big family, the multiculturalfamily of the Muhammad Ali Parkinson Center.

Vivir con la enfermedadde ParkinsonContinued from page 13


algunas medicinas o posiblementeagregar otro medicamento. Otrospacientes pueden sufrir de calambres y laaparición de estos síntomas en relacióncon la hora en que toma las medicinas esmuy importante. Si ocurren cambios enel comportamiento del paciente, comoalucinaciones o comportamientosobsesivos, debe dejárselo saber al doctorpues puede tratarse de un efectosecundario a alguna medicina que estétomando.

Aunque la enfermedad de Parkinson esun trastorno progresivo, no es mortal. Sise controlan las posibles complicacionesde la EP como infecciones o caídas, laspersonas con Parkinson puedenmantenerse relativamente bien pormuchos años. El campo de la neurologíay nuestros conocimientos sobre elParkinson crecen día a día. Además lacantidad de estudios de investigación quese llevan a cabo en todo el mundo es tangrande que se hace difícil de contar. Encualquier momento puede aparecer unnuevo medicamento que retrase laprogresión de la enfermedad o quecontrole sus síntomas de manera másefectiva. Con los avances enneurocirugía, la Estimulación CerebralProfunda puede ser una opción detratamiento excelente para algunospacientes.

En resumen, el mensaje principal es quedefinitivamente hay mucha esperanzapara las personas con enfermedad deParkinson. Los pacientes y sus familiaslibran una batalla diaria con laenfermedad, pero esta batalla solo puedeganarse si se tiene una actitud positiva yse está bien informado.

Education and fun paired just perfectly...


Segundo Simposio AnualRaul Yzaguirre

El evento en español más grande del país dedicado aeducar sobre la enfermedad de Parkinson (EP)

Este fue un año muy especial para nuestro simposio por muchasrazones. Nuestro simposio Raul Yzaguirre no solamente fuedeclarado el evento educativo de este tipo más grande del país, sinoque contó con el patrocinio de la compañía Teva Neurosciences anivel nacional.

Teva Neurosciences, la compañía que comercializa la medicina paraParkinson llamada Azilect, entiende que se necesita crear iniciativasespecíficamente diseñadas para hispanos con Parkinson y por esoha lanzado diferentes recursos en español destinados a educar ycrear conciencia sobre esta enfermedad. Una de las metas que sehabían propuesto para este año era diseñar o patrocinar un eventoencargado de promover educación sobre Parkinson en español.¡Enterarse de nuestro simposio y decidir apoyarlo fue una decisiónque no se hizo esperar! Teva Neurosciences fue un socio fabulosopues comparte nuestra filosofía de servicio y apoyó nuestrosesfuerzos para promover este evento y llevarlo a cabo en una formaculturalmente apropiada.

El Salón Fiesta del Restaurante Tradiciones fue el lugarperfecto para darle al evento un toque latino festivo, con sudecoración colorida y su deliciosa comida mexicana. Los

asistentes aprendieron con tres excelentes expositores: la Dra. MaríaAguilar les enseñó como mantener un cerebro saludable, el Dr.Abraham Lieberman les compartió los últimos avances en eltratamiento del Parkinson, y el Dr. Victor Salazar cerró el programahablando de cambios cognitivos y demencia en EP. Además de lasconferencias, las familias hispanas pudieron visitar una feria derecursos comunitarios, admirar las pinturas hechas por un grupo dehispanos con Parkinson y sus familiares llamadosComadres/Compadres, y dejarse motivar por el dinámico discursode nuestro invitado de honor, el Sr. Raul Yzaguirre.

Este simposio tuvo el balance perfecto entre educación y diversión,pues las conferencias, los mariachis y el baile se mezclaron paradarle a los asistentes la oportunidad de divertirse y aprender almismo tiempo. Este ambiente fue compartido por todas las familias,el personal del Centro, vendedores y expositores, unidos en unagran familia, la familia multicultural del Muhammad Ali ParkinsonCenter.

Families had the chance tovisit a community resourcefair, admire paintings, and

listen to a greatmotivational speech by

Raul Yzaguirre.

Teva Neurosciences fue un socio fabuloso...


This was the theme at the 2008 Mo Udall Symposiumheld February 26th and 27th at the Rio VistaRecreation Center and the Scottsdale Senior Centerrespectively. Over 450 people attended the two daysand learned how to balance their physical needs andtheir emotional and spiritual needs as well as learnedabout emerging medical treatments for PD. Those inattendance also were able to take advantage of themany vendor booths that displayed helpful aids,resources and products that can improve the quality oflife for both the person with Parkinson’s disease and thecarepartner.

The morning got off topositive start with JohnBall, Co-Chair of TeamParkinson motivating usall by telling about hisinspirational book,“Living Well, RunningHard- Lessons learnedfrom Living with PD”.Having been diagnosed

with PD more than twenty years ago, John has foundhis emotional balance by running marathons andadvocating for Parkinson’s research. His experiencesand stories tell people about the disease he has notabout the disease that has him. If you would like topurchase John’s book for $15.00 please call Kris Wattsat 602-406-4921.

John was followed by Brenda Larson who helped usfind our spiritual balance through Sign Chi Do, a newrelaxation modality for PD. Sign Chi Do was createdand designed by Dr. Anne Borik, an Arizona basedmedical practitioner. Sign Chi Do is a new relaxationexercise modality that exercises both the body and thebrain at the same time. By incorporating sign languagegesture with breathing, movement, intention and musicit is a way of bringing a sense of well-being to the mind,body and spirit all at the same time. Sign Chi Do canbe practiced anywhere without special equipmentneeded. To help us experience the benefits of Sign ChiDo, Brenda led us through two prayers that we can do

at home. The MAPC in collaboration with Dr. Borkhave competed a research study looking at the benefitsof Sign Chi Do specifically to Parkinson’s disease. Staytuned for the results. If you would like informationabout Sign Chi Do or finding a class near your homeplease contact www.signchido.com or call 480-628-3929.

Next on the program were Dr. Abraham Liebermanand Catherine Minor, Physical Therapist discussingphysical balance. Why is balance important? The abilityto keep your balance can help you prevent falls. Dr.Lieberman suggested ways that you help improve yourbalance. One is called the “Patton stance”; put yourhands on your hips and point your elbows to the back.You should notice right away that you are standing uptaller. Another activity you can do is to stand on onefoot, remember to put a chair in front or behind you incase you need to lean on something. Lift one leg at atime and hold it for a few seconds, put it down andrepeat. Do this several times and then switch to theother leg. Dancing with a partner is another greatexercise for balance. Catherine Minor, a physicaltherapist at St. Joseph’s Hospital and Medical Centerdiscussed other issues that can affect your balance andways to avoid falling. Some suggestions are makingsure the pathwaysyou are walking onat night are lit up,removing throwrugs, cords andsmall objects.Other tips includeavoiding using astep stool,installing grab bars where needed, placing commonlyused items on shelves or counters at waist or shoulderheight. If you would like a more detailed listing ofsuggestions please call Kris Watts at 602-406-4921.

To complete the day, Dr. Mark Stacy, director of theMovement Disorder Center at Duke University andformer director of the Muhammad Ali Parkinson

Continued on page 19

MoUdall Symposium HighlightsKris Watts, Patient Services Coordinator

Balance your life!


A long list of well-knownmusicians, athletes, actors,and celebrities joinedMuhammad and Lonnie Alifor Celebrity Fight Night XV onMarch 28 at the J.W.Marriott Desert Ridge & Spa. Their goal was toentertain, inspire, and raise funds for theMuhammad Ali Parkinson Center at Barrow andother worthy charities. The event raised $6.6 million.

A crowd of 1,200 attended the evening gala, whichincluded cocktails, a silent auction, an elegantdinner, an exciting live auction, and a dazzling liveshow.

A high point of the event was the presentation ofthe Muhammad Ali Celebrity Fight Night Awardsto leaders in the sports, entertainment, andbusiness communities who best represent thequalities of the Champ and his fight to find a curefor Parkinson’s disease. The following awards werepresented:

• Entertainer Award – Oscar winning actor,director, and producer Forest Whitaker

• Sports Achievement Award – Olympic GoldMedalist swimmer Michael Phelps

• Sports Leadership Award – Arizona Cardinalsquarterback Kurt Warner

• Entrepreneur Award – businessman andphilanthropist Stewart Rahr.

Rahr surprised the crowd by donating $2 millionto Celebrity Fight Night during his acceptancespeech.

GRAMMYAward winningmusical director David Fosterdirected a show that includedperformances by Josh Groban,Jordin Sparks, Jon Bon Jovi,Michael Johns, Roy Firestone,Charice, LuciaMicarelli, William Joseph, and EthanBortnick. ForestWhitaker sang “Summertime” aftera generous bidder offered $100,000 to the CelebrityFight Night to hear him sing.

The live auction featured such items as dinner atReba McEntire’s Beverly Hills home ($600,000),dinner with Josh Groban in Beverly Hills($375,000), and a one-of-a-kind customized TonyHawk DUB edition 4WD JeepWrangler ($100,000).

The Celebrity Fight Night Foundation is a non-profit organization that was founded in 1994 byJimmyWalker to support the Muhammad AliParkinson Center and several other charities.Celebrity Fight Night has raised nearly $60 millionin 15 years.

“Celebrity Fight Night’s ongoing support makes atremendous difference for the Muhammad AliParkinson Center,” says Abraham Lieberman, MD,director of the MAPC. “Their support is thebackbone of so much of what we do—fromeducation and exercise programs to supportgroups, the Parkinson Registry, and Ali Care.Without the yearly contribution from CelebrityFight Night Foundation, we would be unable tooffer all that we do.”

• Fight Night XV •Catherine Menor, Director of Foundation Communication

Barrow Neurological Foundation


The Parkinson’s Registry at the Muhammad AliParkinson Center has collected health, socioeconomicand Quality of Life data on over 3,200 people with PDsince November of 2003. The Registry is a longitudinalstudy to track how people are managing their PD overtime. The collection of data on non-motor symptomsand issues relating to quality of life is instrumental toresearchers, healthcare policymakers, and cliniciansseeking additional information to make qualifieddecisions regarding healthcare, best treatment practicesand allocation of resources. However, in order for thisinformation to accurately represent the PD populationin the United States, membership must be in largeenough numbers with representation from all fifty statesto reflect current national estimates of the PDpopulation. Although accurate numbers are notavailable, estimates range from 1million to 1.5 millionAmericans currently living with PD. As you can see,Registry membership does not come close toapproximate the population of people living with PD.

Participation in theMAPC Parkinson’s Registry isvoluntary and increased membership is dependentupon grassroots efforts of physicians, healthcareproviders, Support groups, and outreach efforts by theMAPC. People with PD also can find the Registryonline when searching for information on PD, or byreviewing PD studies at clinicaltrials.gov. The Registryis actively engaged in recruiting new participants tomore accurately represent the PD community byreaching the goal of 20,000 participants over the nextfive years. However, because of the voluntary nature ofthe Registry, the best efforts will invariably miss a largeportion of the PD population in the United States.Therefore, it becomes paramount for our registry tocollaborate and form relationships with other researchorganizations to increase the available pool of data onthe range of issues affecting those living with PD.

Because of the tremendous and urgent need for accurateinformation on Parkinson’s disease, legislation on thenational level has been introduced to create a

mechanism to gather this data. OnMarch 5, 2009,Congressman Chris Van Hollen, with the other Co-Chairs of the Bicameral Congressional Caucus onParkinson’s Disease and the Congressional MS Caucus,introduced the National MS and Parkinson’s DiseaseRegistries Act, H.R. 1362. This bill will establishnational Multiple Sclerosis (MS) and Parkinson’s diseaseregistries at the Agency for Toxic Substances and diseaseRegistry (ATSDR) at the Centers for Disease Controland Prevention (CDC). The National MS andParkinson’s Disease Act will create, for the first time, aseparate, permanent, and coordinatedMS andParkinson’s disease national registry. Currently, there isnot accurate information on howmany Americans areliving with Parkinson’s disease, and why. This lack ofbasic knowledge impedes Parkinson’s research,programs, treatments and services. At a minimum,accurate information about the incidence andprevalence of Parkinson’s disease will assist in planningfuture healthcare needs, detect changes in healthcarepractices, assess disease burden, promote advocacy, andsupport a broader range of research initiatives. Theregistries will rely on existing databases, such asMedicare, VA, state registries, and private data bases, todetermine the incidence and prevalence of MS andParkinson’s disease.

TheMAPC fully supports the National MS andParkinson’s Disease Registries Act, and will workalongside other advocacy groups to promote passage ofthis legislation. It is our belief that the key to a cure forPD is through working together and utilizing all ourresources for the common goal. A national registry willprovide the tools needed to reach this goal in the mostefficient and expedited manner possible. We encourageyou to find out more about the national registries bill byvisiting the Parkinson’s Action Network online atwww.parkinsonsaction.org. PAN also has informationon how you can lend support to this importantlegislation.

18

Parkinson Data Registry UpdatePatty Hatton, Parkinson Registry Coordinator


Clinical Research StatusLynn Marlor, BSN, MSHS

Barrow Neurological MovementDisorders Clinical ResearchDepartment is presently conducting 3clinical research projects.

The first study is sponsored by AcadiaPharmaceuticals. It focuses onPsychosis in Parkinson’s disease andpatients experiencing hallucinationsand delusions. Psychosis is perhaps themost difficult Parkinson’s diseasesymptom to treat and can occur in 20to 40% of patients in the advancedstages of the disease. To be included inthis study the patient must havemoderate to severe PD for at least 1year. They must also have visual and/orauditory hallucinations or delusionsduring the last 4 weeks.

Most Parkinson’s disease treatmenttrials focus on treating the symptomsof the disease. We are presentlyenrolling in 2 studies to assess agentsthat have the potential to slow theprogression of PD. They are the NET-PD LS-1 and QE3 studies.

The NET-PD LS-1 study will test theability of the drug creatine, to slow theclinical decline of Parkinson’s disease.

In relatively small and brief studies inpeople with Parkinson’s disease,creatine was studied as an agent thatcould potentially alter the long termprogression of Parkinson’s disease.Doctors now intend to carry out a largetrial to continue looking at the safety ofcreatine and to see if it is effective inslowing clinical decline in people withParkinson’s disease. Patients diagnosedwith Parkinson’s disease within 5 yearsand who are being treated for thedisease may be eligible.

The other study “Effects of CoenzymeQ10 in Parkinson’s disease” (QE3) willevaluate the use of two dosages ofcoenzyme CoQ and placebo onprogressive disease impairment ofsubjects with early Parkinson disease.

The QE3 study will last 16 months with7 visits to theMovement DisorderClinic. It will include subjects with PDwho have not yet developed sufficientdisability to require treatment withdopaminergic therapy. A patient mayalso be entered into the study if they

received medication for Parkinsondisease for less than 90 days. Anotherobjective of the study is to examinewhether treatment with CoQ delaysthe onset of disability requiringdopaminergic therapy.

In a previous NIH supported phase IItrial there was a positive trend fortreatment with CoQ10 to slow theprogressive impairment as measuredby the UPDRS. The new phase III trialis designed to confirm and extend theresults of the phase II study.

If you are interested in participating inany of these 3 studies please call LynnMarlor, BSN, MSHS Research NurseClinician at 602-406-6250. If a study isnot offered at the present time that willmeet your needs you can be added to awaiting list. You will be contacted whena study becomes available.

There is no cost for any of the studies.All clinic visits, tests and medicationsare paid for by the study sponsors.AbrahamN. LiebermanMD, RichardS. BurnsMD and GuillermoMoguel–CobosMD are the BarrowMovement Disorder Research ClinicPrimary Investigators for these studies.

Center discussed emerging medical treatments that wecould look forward to. Currently there are studies beingdone across the country looking at diagnostic markers,disease modifying agents, as well as disease restoringagents, and new therapies for PD symptoms. Diseasemodifying agents currently being studied includeCoQ10, Creatine, Inosine, andMinocycline to name afew. Rasagiline or Azilect is being studied for thepossibility of slowing the progression of the disease.Current studies are also looking at gene therapy and celltransplants as well as medications that can help withpsychosis or dyskinesias. In the last two decades twelvenew Parkinson’s medications have been introducedcompared to just four in the four decades prior to that.How can you help with moving Parkinson research

forward? Join a clinical trial.. Several studies mentionedin this article are being done at the MAPRC. If you wouldlike to get more information about these studies anddetermine if you qualify please contact LynnMarlor,MSN at 602-406-6259 or Ina Lieberman at 602-406-7339.

Those attending the day long conference left the daywith renewed hope about what therapies are in thepipeline as well as a new sense of “balance” by hearingthe inspirational John Ball, the spiritual inspiration ofSign Chi Do followed by practical tips on physicalbalance and preventing falls. For those of you who wereunable to attend the event, we have handouts of thematerials and talks if you would like to have it sent toyou. Please call Kris Watts at 602-406-4921 to receivethat information.We look forward to seeing you nextyear at the symposium.

MoUdall Symposium HighlightsContinued from page 16

Charles Barrow’sgift in 1959 enabledDr. John Green andSt. Joseph’s to build theBarrow NeurologicalInstitute.

Philanthropy works.Our job is to show you how.Please contact the Office of Philanthropyat St. Joseph’s Hospital and Medical Center(602-406-3041) for more information.

P.S. We are very tax deductible.

Non-profit Org.U.S. Postage

PAIDPermit No. 685Phoenix, Arizona

CHW ArizonaMuhammad Ali Parkinson CenterResource Center500 W. Thomas Rd, Ste. 720Phoenix, AZ 85013

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This is how your name appears on our mailing list. Please notify us of any errors and/orduplicate mailings by returning the attached mailing label to us or by including youraccount number appearing on your mailing label with all correspondence.

If you would like to receive a free subscription to Southwest Parkinson Report, pleasecontact a MAPC staff member or call 602-406-4931 to register.

The Southwest Parkinson Report contains information provided as a service and is not intended to constitute medical advice or views. Patients shoulddiscuss information regarding medical management with their physician.

Without these gentlemen,there would be no Barrow Neurological Institute.

2009 summer newsltr parkinson ali

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