southwest parkinson newscognition. cognitive changes may be a function of many factors, including...

Mild Cognitive Impairment inParkinson’s DiseaseJulie Alberty, Ph.D., Robin Garrett, Psy.D., Jennifer Loughlin,Ph.D., and Alexander Tröster, Ph.D.

According to the Parkinson’s Disease Foundation,each year approximately 60,000 Americans arediagnosed with Parkinson’s disease (PD) and anestimated 7-10 million people are living with PDworldwide. Living with PD presents many challengesgiven the motor difficulties associated with thedisease. However, cognitive changes (meaningchanges in functions such as, for example, memory,attention, or thinking) can also occur, even in theearly stages of the disease. Approximately one-quarter of persons newly or recently diagnosed withPD have subtle cognitive changes or mild cognitiveimpairment (MCI). These mild changes may not atall or only minimally impact day-to-day functioning(tasks such as driving or handling finances), but theydo represent a decline from previously intactcognition. Cognitive changes may be a function ofmany factors, including advancing disease,medication side effects, and depression.

Typical cognitive complaints include subtle changesin executive functions (flexibility of thought,planning, judgment), working memory (for example,

remembering a just-heard telephone number),slowness of thought, and difficulty learning andrecalling new information (such as appointments orplanned activities). Executive function is anumbrella term that includes higher order thinkingskills much like a business executive who makesdecisions, has strong organizational skills, troubleshoots problems that arise, and multi-tasks.Executive functions also encompass socialbehaviors, such as “thinking before you speak.” Theyinclude the ability to plan and execute an appropriatesequence of events in order to complete a certaintask (i.e. to do the laundry one must first get the dirtyclothes, put them in the washing machine, turn onthe machine, add soap, etc.) or to be able to solve anunexpected problem (i.e. the fridge stopped workingand knowing who to call to fix it or smelling gas andknowing what safety procedures to implement).

If an individual with PD (or their family members ordoctor) notices cognitive changes, the person maybe referred to a neuropsychologist. Aneuropsychological evaluation can help determinehow efficiently one is thinking. An evaluationconsists of a number of tests that assess attention,memory, speed of movement and thought, language,visuospatial skills (for example recognizing faces or

Southwest Parkinson News

InsideCaregiver Corner . . . . . . . . . . . . . . . . . . .Page 4A Personal Journey with PD . . . . . . . .Page 6Breaking News in PD Clinical Trials . . .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

Muhammad Ali Parkinson Center at Barrow Neurological Institute® Fall 2014A National Parkinson Foundation Center of Excellence

*Non-amnestic includes attention, language, executive functioning, andvisuospatial skills

2 Fall 2014 • Southwest Parkinson News

objects and estimating distances), and executivefunctioning (planning, problem solving). Testresults, self-report, and caregiver report arecombined to determine if patients have mildcognitive impairment.

The new classification and diagnostic schemeproposed by an International Parkinson andMovement Disorder Society task force in 2012describes four subtypes of mild cognitiveimpairment based on whether memory is impairedor not, and the number of cognitive domainsaffected (one or more). Please refer to Figure 1. Themost common type of mild cognitive impairment inPD is single domain (specifically affecting executivefunction). Patients diagnosed with mild cognitiveimpairment are regularly monitored by their doctorfor further cognitive changes and possibledevelopment of dementia. If worsening is detected,the doctor may prescribe medications to slow thedecline.

In addition to cognitive difficulties, individualswith Parkinson’s disease can also have changes inmood. In particular, symptoms of depression areestimated to be present in about half of those withParkinson’s disease at some point during thedisease. Apathy (lack of motivation or interest indoing things) can also be present in those withParkinson’s disease and is often mistaken fordepression. Although both conditions involve lackof interest or low motivation, apathy is notassociated with sad mood, which is present indepression. Various types of anxiety disorders alsomight occur in as many as half of individuals withPD. These symptoms can range from constantworrying to obsessive (repetitive and intrusive)thoughts and compulsive behaviors (repetitive,unwanted actions e.g. counting things or checkinglocks) that when executed alleviate the sense ofnervousness or tension.

Changes in mood can be related to one’s reactionto having the disease, disease-related changes in thechemical messengers in the brain, or both. Often,

when an individual experiences a significant level ofdepression or anxiety, cognitive processes can beaffected. Therefore, treatment for significant moodsymptoms is important not only to improve qualityof life, but also potentially to enhance one’scognition. Possible treatment options includemedications and psychotherapy.

What treatments are available for persons who haveMCI? If a patient feels they are having difficulty withmemory, attention, or other cognitive difficultiesthey should speak to their neurologist. Theneurologist is able to discuss possible medicationsor natural supplements that can assist with delayingthe progression of cognitive change over time. Thereis also the option of non-pharmacologicaltreatments that patients can engage in. Many studieshave shown that exercises such as walking 30minutes or more daily and/or bicycling (on astationary or recumbent bike) can help to maintaincognitive abilities. Exercise should be limited toactivities the patient is physically capable of doingwithout injury.

It is important for persons to keep their minds activeas well. They should engage in activities that theyenjoy but that are also slightly challenging such asreading novels, playing math games, doingcrossword puzzles, playing Sudoku, etc. It isimportant the patient both enjoys the activity andthat they do not find it so overly challenging that itleads to frustration. Many computer games andprograms purporting to improve brain health areavailable for free or purchase. Research has not yetshown that these programs unequivocally improvecognition in everyone. In general, those programsshown to be effective require consistent andpersistent effort and practice for modest gains to bemaintained. Self-help books that describecompensatory memory strategies (or mnemonics)are also available, but these too have not beenstudied in PD. The take home point, however, is todo something fun that also stimulates your mind. v

Mild Cognitive Impairment in Parkinson’s DiseaseContinued from previous page

Save the DateOktoberfest! New Heights for PD on High Street –Saturday, October 18th 5:00 pm -9:00 pmFestival with food, beer, live music, silent auction andmore at City North (near Desert Ridge). Partialproceeds from Oktoberfest benefit the communityoutreach programs at Muhammad Ali ParkinsonCenter.

9th Annual Walk the FightJoin us to help raise awareness for the Parkinson'sdisease in Arizona. Activities include 5K walk or timedrun, 2 block fun walk, children's activities, resource fairand a movement pavilion showcasing other exercisesthat are beneficial for those living with Parkinson's. Inits 9th year Walk the Fight for Parkinson's is presentedby the Parkinson Network of Arizona with proceedsfrom the walk going to help support the communityoutreach programs of the Muhammad Ali ParkinsonCenter at Barrow Neurological Institute in Phoenix.Come and help us Walk the Fight for Parkinson'sdisease!Cost: $20 for adults registering to walk- includes shirt$30 for adults registering for timed run- includes shirtChildren age 15 and under are free- additional shirtscan be purchased Phone: (602) 406-4921 Event url: www.walkthefight.kintera.org

Annual Mo Udall Educational SymposiumWe are excited to offer a star studded program for thisyear’s symposium featuring Dr. Michael Okun,Medical Director of the National ParkinsonFoundation and Professor at the University of FloridaCenter for Movement Disorders andNeurorestoration. The symposium will be available bywebcast for those that cannot attend in person. Watchyour mailbox for details!

Location: Barrow Neurological Institute, Phoenix AZDate: Saturday, February 21, 2015Cost: Free Time: 9:00am – 2:00pmContact: Kris Watts at (602-406-4921 [email protected]

8th Annual Bruce Florence Parkinson’s Juried ArtShow/ Exhibit Opening April 3rd, 2015The Muhammad Ali Parkinson Center and theFountain Hills PD Support Group will sponsor a juriedart exhibition open to persons with PD and theircarepartners who reside (full or part time) in Arizona.The exhibit will be open to the public at the BurtonBarr Library throughout the month of April.Location: Burton Barr LibraryDate: April 10, 2015Contact: Claudia Martinez (602) 406-2453 [email protected].

4th Annual Carepartner Workshop: Light in theMiddle of the TunnelA free half day workshop designed to celebrate andhonor carepartners. Join other carepartners for a dayof wellness presentations, leisure activities and aluncheon. This day was made just for you to give youthe opportunity to relax, replenish and enjoy yourself.Keynote speaker Susan Gangsei is an advocate forfamily caregivers and author of the book”Light in theMiddle of the Tunnel”.Location: Sonntag Pavilion on the campus of St. Joseph Hospital and Medical Center Date: Saturday, November 22, 2015 Time: 10:00am-2:00pmCost: FreeContact: Patty Hatton at (602) 406-3840 [email protected]

3Fall 2014 • Southwest Parkinson News

Dr. Srivadee Oravivattanakul (known to her patients as Dr. Srivadee orDr. O) is the new Movement Disorder Specialist at the Muhammad AliParkinson Center. Dr. O is originally from Bangkok, Thailand where shereceived her medical degree from Chulalongkorn University. Shecompleted her Neurology Residency at University Hospitals CaseMedical Center (Case Western Reserve University) and her MovementDisorders Fellowship at the Cleveland Clinic. Dr. Srivadee treats patientswith various movement disorder conditions including Parkinson’sdisease, essential tremor, dystonia, chorea, tics, and myoclonus .

Welcome Dr. Srivadee

Caregiving is a loving gift from the heart, but it is also verychallenging and demanding. Although caring forsomeone you love can be very rewarding, it is well knownthat caregiving can be a tough role, compounded bylimited information and resources. We have severalcourses designed to provide useful information as well asinteractive exercises and tools targeted toward the well-being of caregivers.

Powerful Tools for CaregiversThis 6 week program provides information to improvecaregiving ability by promoting self-care and increasingself confidence. This series will help you improve yourcommunication skills, reduce your stress and workthrough difficult emotions such as guilt, anger anddepression.

2014-2015 Powerful Tools for Caregivers class dates andlocationsTempe Caregiver Series

King of Glory Lutheran Church2085 E. Southern Ave, Tempe, Az. 85282• Powerful Tools

Wednesdays, 10:00-11:30 am, Oct 1, 8, 15, 22, 29 &Nov 5, 2014

• Boot CampWednesday, 9:30am-12:30pm, November 12

Phoenix Caregiver SeriesMuhammad Ali Parkinson Center240 W. Thomas Road Suite 302Phoenix, Az. 85013• Powerful Tools

Mondays, 10-11:30, Nov 3 - Dec 8, 2015• Boot Camp

Monday, 9:30 am – 12:30 pm, Dec 15th

Sun City West SeriesDesert Palms Presbyterian Church13459 W Stardust Blvd, Sun City West, Az. 85375• Powerful Tools

Thursdays, 10:00-11:30 am, Jan 8- Feb 12, 2015• Boot Camp

Thursday, 9:30am-12:30pm, February 19

Fountain Hills SeriesFountain Hills Village16455 East Avenue of the Fountains, Fountain Hills,

Az. 85268• Powerful Tools

Thursdays, 10:00-11:30 am, Feb 26 - April 2, 2015• Boot Camp

Thursday, 9:30am-12:30pm, April 9

November is Caregiver Month! Join us to honor andrecognize carepartners taking care of loved ones.

Caregiver Workshop in SpanishCome and celebrate with us Caregiver Month in the Park!We will enjoy a day filled with education, music and fun.You and your family will be able to enjoy the performanceof our Voces Unidas Choir, and participate in raffles andgames. Together we will explore different avenues tokeep wellness as a priority in our lives.

Margaret T. Hance Park Ramadas, 67 W Culver Street,Phoenix, AZ 85004Sunday, November 16; 9:30 am to 2 pm.Call (602) 406-2453 to register.

4th Annual Carepartner Workshop: Light in theMiddle of the Tunnel

Details on page 3.


Caregiver CornerOne person caring about another represents life's greatest value.

Support Groups

Support groups are a gathering of people who share acommon issue. Of course, for the many support groupsoverseen by the Muhammad Ali Parkinson Center thecommon issue is Parkinson’s disease. The MAPCsupport groups definitely let people with Parkinson’sdisease and their families know that they are not alone.Support groups provide the opportunity to have aconversation with others who are on the same journeyand the way is always easier when one has the companyof others.

Support groups provide an environment of acceptanceand encouragement. Most of the people who attendsupport groups have taken the challenge of living wellwith PD and they know that keeping socially connectedis one of the choices that positively impacts their overallphysical health and emotional well-being. Research hasshown that even if someone does not feel the need to bearound people and is content being alone, his health willbe detrimentally affected by a lack of social interaction.

Many friendships that began in support groups haveflourished as people continued their relationship beyondthe group. People report meeting in each other’s homes,

going out to eat, riding the light rail and attendingentertainment events with friends that they met in theirsupport group. Having friends is such a source ofenjoyment!

Support groups have their own personality and format,but each group offers knowledge as well as support andencouragement. The informational part of the group isdriven by the members of each individual group. Being alife-long learner keeps people aware of the most up-to-date information concerning PD.

Another benefit of groups is the experience of synergy(combined efforts being greater than the individualparts). As people share their experiences, individualstrategies, and resources there emerges a creativity toexplore new approaches that in turn produces betterresults. It is the power of many people working together,sharing ideas that can generate ideas, approaches, andsolutions that never would have been considered if it hadnot been for the group.

We invite you to attend a support group in your area. Youwill find a list of support groups in the middle section ofthis newsletter. Hope to see you at the next meeting! v


Caregiver Corner continued

Parkinson’s disease Education for Profes-sional Caregivers Certification Program

On April 21, 2014 the Parkinson’s Disease Education forCaregivers Certification Program held its first class at theMuhammad Ali Parkinson Center (MAPC). Thiseducation course was the vision of Lonnie Ali, wife ofMuhammad Ali. Clearly, it is the Alis’ goal for peopleliving with Parkinson’s disease (PLWP) to have the bestcare possible and that care goes beyond what is receivedat the hands of the physician and physiotherapist.Fortunately, there are also facilities and home careagencies who have the same goal and were seekingeducation for their staff.

For more than ten years the MAPC has educated PLWPand their loved ones. Drawing from this extensiveteaching experience the MAPC developed a curriculumfor the professional caregiver. This new course has theadded component of a weekly test and meets for sixconsecutive weeks. The students enrolled in the firstclass represented five different agencies and at the end ofthe class seventeen certificates were awarded. It isanticipated that the classes will be offered two timesannually. For more information contact Nancy Bivins,602-406-4266. v

A Personal Journey withParkinson’s DiseaseJanice Mannke

I refuse to let my diagnosis of Parkinson’s Disease altermy life negatively.

In 2007 I noticed a slight tremor in my ring finger on myleft hand. I consulted a neurologist and was diagnosedwith a benign essential tremor. This diagnosis held until2012 when my husband noticed I was slightly draggingmy left leg in the evening while walking in front of his TVshow.

During this period of time I was still working as aninterior designer and carrying heavy samples in and outof clients’ homes all day long. In late 2012, I consultedanother neurologist and started taking a low dose ofCarbidopa/Levodopa. I noticed that my leg dragging andfinger tremor stopped. The positive reaction toCarbidopa/Levodopa led to the diagnosis Parkinson’sDisease, albeit, a mild case. I was shocked by thediagnosis since no one in my family had PD that I knewabout. But I continued to work until January 2013 when Iretired to concentrate on getting involved with more PDexercise classes to help ward off the progression ofphysical as well as cognitive impairment.

When I was first diagnosed I took Parkinson’s Disease(PD) 101, researched topics on the internet, read MichaelJ. Fox’s first book “Lucky Man”, and attended my firstDavis Phinney conference that was held in Phoenix. Ibegan to attend PD exercise classes and a support groupwhere I met other people with PD. I learned from othersin the class about PD symptoms and what I might facedown the line. I also learned what things I could do tofight back against these symptoms. I participate in PDexercise classes at the Muhammad Ali Parkinson’sCenter in Phoenix, AZ, three times a week to includedance, Power Moves, Tai Chi and Yoga. I also work outseveral days a week at LA Fitness doing strength buildingworkouts and stretching and cardio work with someadded socializing. It is very important to build socialcapital even as our disease progresses and to keepmaking new friends continuing with normal activities asbest we can.

I have met so many wonderful friends through these PDclasses and support groups and I have discovered there

are so many amazing people that are handling theirsymptoms so bravely and effectively.

When I’m at our second home in Prescott, AZ (trying toavoid the 115 degrees in Phoenix), I also attend PDexercise classes twice a week. Again, I have met manywonderful and upbeat people who are handling their PDsymptoms with a great attitude.

I maintain a very active lifestyle and social network. Inaddition to my exercise programs I walk my little dog,Sandie, three times a day. To keep my brain in shape I playLumosity, Mexican Train Dominos, Spider Solitaire onthe computer, read many books on my Nook, andmaintain our household finances. I attend church andalong with my husband, Fred, work at the Andre Houseof Hospitality in downtown Phoenix on Wednesdays. Wearrive about 3 pm and prepare and serve the evening mealto the homeless and people in poverty, then clean up afterthe meal. It takes about 4 hours and I feel very blessedand rewarded when I have finished. Most of the guestsare so thankful to us for helping them get a good mealand some social interaction. My husband and I havebeen working at Andre House for about 10 years.

I don’t have time to feel sorry for myself. I just keepmarching on with my life as best I can and count myblessings that I am able to do all that I do. v


Avondale • Litchfield Park • GoodyearExerciseArt of Moving Thursdays, 10-11 am, Sep 4 – Nov 20;Jan 8 – July 30Skyway Church of the West Valley14900 W. Van Buren, Goodyear

DanceParkinson’s DanceMondays, 1:00-2:15 pm, Sep 8– Nov 24;Jan 5 – July 27Steppin’ Out Performing Arts13331 W. Indian School Rd #208 BLitchfield Park (Osborn & Indian School)

Fountain HillsExerciseArt of Moving 9-10:00 amPWR!MOVES™ 10-11:00 amFridays, Sep 12 -Nov 21; Jan 9–May 29Fountain Hills Senior Center, 13001 N. La Montana*

In order to participate in the Fountain Hillsexercise classes you must be a member ofthe Fountain Hills Activity Center. AnnualMembership fee (Jan 1 – Dec 31) is $20.00for Fountain Hills residents and wintervisitors with a Fountain Hills address;$30.00 for non-residents. Members areable to participate in many activities at theCenter.

Mesa • East MesaPWR!MOVES™ Mondays, 12:30 – 1:30 pmMountainside Fitness 480-899-18651253 N. Greenfield Rd(NE corner of Greenfield & Brown)

Tai Chi Thursdays, 11 am – 12 pm, Sep 4 – Nov 20; Jan 8 – July30Victory Lutheran Church, 5946 E. University (University & Recker)

PhoenixAll of the classes listed below are heldat the MAPC Community Outreachand Wellness Center240 W. Thomas Rd Suite 302

Music & MovementNeurologic Music Therapy, Mondays,2:30 – 3:30 pm, Sep 8-Nov 24; Jan 5-May 18

Voice ClassTuesdays, 11:00 am – 12:00 pm, Sep2-Nov 25; Jan 6-July 28

ExercisePWR!MOVES™ , 1:15 - 2:15 pm,Tuesdays, Sep 2–Nov 25; Jan 6–July 28

Art of Moving, 2:30 - 3:30 pm,Tuesdays, Sep 2–Nov 25; Jan 6–July 28

Tai Chi Wednesdays, 2:30 – 3:30 pm; Sep 3 –Nov 26; Jan 7 -July 29

ArtExpressive Arts- “Let your Paintbrushbe your Rainbow”Thursdays, 10 – 11:30 am, Oct 16, 23,30 & Nov 6, 13*Additional fee: $20 per person or$30 per couple for entire session

YogaYoga for EveryBody, Mind and Soul! Thursdays, 2 – 3 pm, Sep 4 – Nov 20;Jan 8 – July 30

Evening ExercisePWR!MOVES™ 5:30 – 6:30 pm; Sep 4 – Nov 20; Jan 8 – July 31

PWR!Circuit™Fridays, 11:00 am – 12:00 pm, Sep 5 –Nov 21; Jan 10 – July 31

WorkshopMastering Your Anxiety: A BriefCourse Especially For Persons withParkinson’s DiseaseFridays, 1-2:30 pm; Oct 24, 31, Nov 7,14, 21, Dec 5Additional fee: $20.00

ScottsdaleTai ChiMondays, 9:30-10:30 am; Sep 8 - Nov 24; Jan 5-June 29Elizabeth Keith Movement Education 16620 N. 40th St, Suite D-2 (40th St south of Bell in PV)

ExerciseArt of Moving Tuesdays, 9:30-10:30 am; Sep 2-Nov 25; Jan 6-July 28Elizabeth Keith Movement Education Suite D-5 (see above)

DanceThursdays, 11:30 am – 12:45 pm, Sep 4-Nov 20; Jan 8-July 30Elizabeth Keith Movement EducationSuite D- 2 (see above)

YogaYoga for EveryBody, Mind and Soul!Mondays, 2-3 pm, Sep 8 - Nov 24; Jan 5-July 27Wednesdays, 2-3 pm, Sep 3- Nov 26;Jan 8-July 30Assumption Greek Orthodox ChurchCommunity Room8202 E. Cactus Road

PWR!MOVES™ Wednesdays, 12:15-1:15 pmMountainside Fitness 480-899-888911611 E. Sahuaro Dr (NE corner of 116th St & Shea)

Fall 2014 Pull-Out SectionRecreation and EducationIn order to plan safe and effective classes, all classes require pre-registration. Exerciseclasses are only $5 per class. Education classes are free. For further informationand/or to register, please call: Patty Hatton, 602-406-3840.


Fall 2014 • Southwest Parkinson News8

Fall 2014 Recreation and Education cont.

SingingTremble Clefs Singing ProgramThursdays, 4 – 6 pmGranite Reef Senior CenterCity of Scottsdale1700 N. Granite Reef Road

Sun CitiesExercise - Art of MovingMondays, 10 – 11 am, Sep 8-Nov 24;Jan 5-July 27Shepherd of the Hills United Methodist Church 13658 Meeker Blvd, Sun City West (Meeker & RH Johnson)

Exercise - Art of MovingThursdays, 1- 2 pm, Sep 6 – Nov 20;Jan 8 – July 30American Lutheran Church of SunCity17200 N. Del Webb Blvd (Del Webb just south of Bell)

PWR!MOVES™Two classes: Wednesdays, 11:00 am – 12:00 pm; Fridays 1– 2 pmMountainside Fitness623-889-037415445 W. Bell Road (SE corner of Bell & Reams)

SingingTremble Clefs Singing ProgramWednesdays, 10 am – 12 pmShepherd of the Desert LutheranChurch11025 N. 111th Avenue, Sun City

Sun LakesExercise - Art of MovingMondays, 10:30-11: 30 am, Sep 8-Nov 24; Jan 5-July 27Sun Lakes United Methodist Church,9428 E. Riggs Road, Rm 10

Tai ChiThursdays, 11 am - 12 pm, Sep 4 – Nov 20; Jan 8 – July 30Sun Lakes Country Club – Mirror Room

25601 S. Sun Lakes Blvd. (near Riggs Rd & Sun Lakes Blvd)

EDUCATION Register through the ResourceLink bycalling 1-877-602-4111.

PD 101 Central Phoenix–Evening ProgramMuhammad Ali Parkinson Center-Wellness Center240 W. Thomas Road, Suite 301Phoenix, Az. 85013Thursdays, 5:30-7:30 pm, Sep 18, 25,Oct 2 & Oct 9

Central PhoenixMAPC – Barrow NeurologicalInstitute- Goldman Auditorium350 W. Thomas Rd - 1st FloorPhoenix, Az. 85013Tuesdays, 10 am – 12 pm, Oct 7, 14, 28and Nov 4 (no class on Oct 21)This site will be available via webcast

North / Central PhoenixSaliba’s Extended Care Pharmacy21025 N. 8TH Way, Phoenix, Az. 85024Thursdays, 1:30-3:30 pm, Jan 8, 15,22 & 29

ScottsdaleBelmont Village Senior Living13850 N. Frank Lloyd Wright Blvd.Scottsdale, Az. 85260 Wednesdays, 10:00 am – 12:00 pm,Oct 1, 8, 15 & 22

TucsonPWR!Gym® – Parkinson WellnessRecovery134 Ft. Lowell Tucson, Az. 85716Fridays, 10am – 3pm, Oct 17 & 24,

PD 202 ScottsdaleBelmont Village Senior Living13850 N. Frank Lloyd Wright Blvd. Scottsdale, Az. 95260Wednesdays, 10:00 am – 12:00 pm,Oct 29, Nov 5, 12 & 19

North / Central PhoenixSaliba’s Extended Care Pharmacy21025 N. 8TH Way, Phoenix Az. 85024(7th St & 101), Thursdays, 1:30-3:30pm, Feb 5, 12, 19 & 26

PhoenixMAPC – Barrow NeurologicalInstitute- Goldman Auditorium350 W. Thomas Rd - 1st FloorPhoenix, Az. 85013Dates and times to be determinedThis site will be available via webcast

Central Phoenix–Evening ProgramMuhammad Ali Parkinson Center-Wellness Center240 W. Thomas Road Suite 301Phoenix, Az. 85013Mondays, 5:30-7:30 pm, April 6, 13, 20& 27

Education Session for those NewlyDiagnosed with PD Muhammad Ali Parkinson Center-Wellness Center240 W. Thomas Road Suite 301Phoenix, Az. 850132nd Thursday of each month1:30-3:30 pm

Education Series for thoseRecently Diagnosed with PD For this class register by calling PattyHatton at 602-406-3840 .Muhammad Ali Parkinson Center240 W Thomas Rd, Suite 302Phoenix, Az. 85013Monday, October 6, 13, 20 & 2710:00 am -12 pm

Contact Kris Watts at (602) 406-4921 for detailed information regardingmeeting locations, dates and topics of a support group near you.

Fall 2014 Support Group Calendar

Specialty Groups

Young Onset Wellness Group For those aged 30-50'sMonthly Meetings/OutingsHeld monthly at varying locations• Northwest Valley

Contact Carl Ames [email protected]

• Northeast ValleyContact Brian Vietri at [email protected]

• Southeast ValleyContact Brian Baehr [email protected]

Quarterly Dinner MeetingsMuhammad Ali Parkinson CenterContact Kris Watts 602-406-4921

East Valley

Sun LakesRenaissance RetirementCommunity9508 E. Riggs Rd, Sun Lakes, AZ 852482nd Thursday of the month, 2:00-3:30 pmContact Kris Watts 602-406-4921or Shantel Kaycee at 480-883-2706

Sun Lakes Carepartner WellnessSun Lakes Country Club- Phase 125601 N. Sunlakes Blvd, Sun Lakes,AZ 852481st Friday of the month, 1-3:30 pmContact Kris Watts 602-406-4921This group is for carepartners only

Ahwatukee

Mountain Park Senior Living4475 E Knox Rd., Phoenix, AZ1st Friday of the Month, 10:30-12:00 pmContact Kris Watts at the MAPC602-406-4921

Chandler/Gilbert

Mercy Gilbert Medical CenterConference Room #33555 S. Val Vista Dr.Gilbert, AZ 852574th Friday of the Month, 1:30- 3:00 pmContact Kris Watts at the MAPC602-406-4921

Mesa

Red Mountain MultigenerationalCenter7550 E Adobe RdMesa, AZ 852071st Monday of the Month, 1:30-3:00 pmContact Kris Watts at the MAPC602-406-4921

Fellowship Square35 W. Brown Rd, Mesa, AZ1st Wednesday of the Month, 1:30-3:00 pmContact Debbie Harwood atFellowship Square 480-290-7950

North Scottsdale

Desert Mission UnitedMethodist Church7373 E Dixileta, Scottsdale, AZ1st Thursday of the Month, 10:30-NoonContact Marilyn Ware 480-488-8538

HealthSouth RehabilitationHospital9630 E. Shea Blvd, Scottsdale, AZ852602nd Friday of the month, 10:00am-NoonContact Patty Hatton at the MAPC602-406-3840

Fountain Hills

Fountain Hills CommunityCenter13001 N LaMontana DrFountain Hills, AZ 852681st Wednesday of the Month, 9:30-11:00 amContact Mary 480-816-6080

Fountain Hills CaregiverWellnessFountain Hills Community Center13001 N LaMontana DrFountain Hills, AZ 852681st Monday of the Month, 10:30-12:00 pmContact Jim 480-209-8755

Phoenix

North CentralBeatitudes Church/Duet Patio Room, 555 W. Glendale Ave.Phoenix, AZ 850212nd Wednesday of the Month, 1:30-3:00 pmContact Kris Watts at the MAPC602-406-4921

Evening PD Support GroupMuhammad Ali Parkinson Center,Conference Room B240 W. Thomas Rd., Suite 301,Phoenix, AZ 850134th Tuesday of the month, 5:30-7:00 pmContact Patty Hatton at 602-406-3840

Anthem

Location Varies2nd Tuesday of the Month, 2:00-3:30 pmContact Alice 623-551-9726



West Valley

Sun City WestShepherd of the Hills UnitedMethodist Church13658 Meeker BlvdSun City West, AZ3rd Tuesday of the Month, 3:00-4:30 pmContact Regina Thibideau at 623-584-4999

Surprise/Sun City GrandCimarron Center17100 W. Clearview Blvd, Surprise,AZ 853741st Tuesday of the month, 10:00-11:30 am Contact Patty Hatton at 602-406-3840

GlendaleHealthSouth Rehabilitation Hospital13460 N 67th Ave, Glendale, AZ853042nd Tuesday of the month, 1-2 pmContact Trent Tripp at 623-878-8800

Avondale/Goodyear CarepartnerWellnessSkyway Church of the West Valley 14900 W. Van Buren, Goodyear, AZ2nd Thursday of the Month, 10:00- 11:00 amContact Brett Peterson at BeatitudesCenter D.O.A.R. 602-274-5022This group is for carepartners only

Southern Arizona

Casa GrandeRobson Ranch Grill5687 N Robson BlvdEloy, AZ 851311st Monday of the Month, 10:00-11:30 amContact Kris Watts at the MAPC 602-406-4921

YumaDaybreakers Café10800 E Frontage RdYuma, AZ 853671st Monday of the Month, 9:00- 11:00 amContact Beverly at 928-246-2876

Northern Arizona

PrescottFirst Lutheran Church231 W. Smoke Tree lanePrescott, AZ 863013rd Thursday of the Month, 10:00-11:30 amContact Kay Bolander at 928-778-2242 orAlan Richardson at 928-442-1380

Prescott CarePartnersMountain Valley RehabilitationHospital3700 N. Windsong DrPrescott, AZ 863142nd Thursday of the month, 10:00-11:30 amContact Kay Bolander at 928-778-2242

Kingman

Kingman Regional MedicalCenterDel Webb Wellness Center1719 E. Beverly Ave, Kingman, AZ864093rd Tuesday of the month, 1:00 pmContact Pam Kowalski at 928-263-5640

Verde Valley

Verde Valley Medical CenterOutpatient Rehabilitation Services-Conference Room B269 S. Candy Lane, Cottonwood, AZ863262nd Friday of the month, 3-4:30 pmContact Judy Talley at 928-202-7952

Western Arizona

Lake HavasuCommunity Presbyterian Church3450 Chemehuevi Blvd, Lake HavasuCity, AZ 864062nd Wednesday of the month, 1:00-2:00 pmContact Paula Anderson 928-855-6000(Alzheimer / Dementia Connectionof Lake Havasu)

Support Groups continued


The Parkinson Network of Arizona is dedicated to improving the quality of life ofthose affected by Parkinson's Disease in Arizona through advocacy, raisingawareness and sponsorship of the Muhammad Ali Parkinson Center CommunityWellness classes. It is our pleasure to support the Muhammad Ali ParkinsonCenter. Through our fund raising efforts and the great support from you in thecommunity, we are excited to announce that we will be donating $100,000 to theMuhammad Ali Parkinson Center. The money is specifically for the programsput on by the wonderful staff at the Muhammad Ali Parkinson Center (MAPC).

Where does your money go? It goes directly to the MAPC Wellness, outreach, andeducation programs right here in your community. All of the funds raised fromPNA sponsored events stay here locally and have an enormous impact on thosewith Parkinson’s disease and their families. The MAPC also provides servicesthroughout Arizona. Some of the programs that your money helps fund aretransportation grants for Parkinsonians to attend specific programs, acommunity based education program for the Navajo Nation, golf clinics,instructors to teach exercise classes for all stages and abilities of those withParkinson’s Disease, expressive art, and therapy and dance programs. Inaddition, we support the choirs specializing in Parkinson’s Disease i.e. theOriginal Tremble Clefs, the Westside Tremble Clefs, and the Voices Unidas. Youcan always go to our website, www.parkinsonnetworkaz.org to learn more aboutPNA and how your funds help us continue to reach out to the community,enhance services for people with Parkinson’s disease and their families andimprove their quality of life.

PNA’s next big event is coming up on Saturday, February 7, 2015. It’s never tooearly to start planning. Join now and help support the PNA and the MuhammadAli Parkinson Center at our9th Annual Walk The Fight. You can register bygoing to www.walkthefight.kintera.org. If at any time you need assistance withregistration or have questions, please contact Kristina Watts at 602-618-7478 [email protected].

PNA thanks you for your generous support and asks that you please help uscontinue to reach our goals of improving quality of life through activity,advocating for better health, and raising awareness.

Sincerely,

John Herrick

John Herrick President Parkinson Network ofArizona

The MAPC is Updating Records!

The Muhammad Ali Parkinson Center is updating our records. Pleasehelp us keep you better informed regarding educational opportunitiesand special events through email. If you did not receive this issue ofthe Southwest Parkinson News electronically please [email protected] to update your information toinclude your email address. Thank You. v

As many as two-thirds of patients with Parkinson’s disease(PD) have signs and symptoms of autonomic dysfunctionthat may substantially impact their health-related qualityof life (Kaufmann & Biaggioni, 2003; Park & Stacy, 2009).The autonomic nervous system is a control system for thebody that involves a number of functions involving thecardiovascular system (i.e., impacting blood pressure,breathing, etc.), digestion, urination, sexual arousal,thermo-regulation (e.g., managing temperaturesensitivity), visual function (i.e., light sensitivity), andswallowing. The Parkinson Alliance®, a national non-profit organization, has recently completed their 17thsurvey with a focus on autonomic dysfunction in PD andhad almost 1,500 participants. The Alliance conductsself-report, survey-based research as a tool for collectinginformation related to the “patient’s perspective” aboutPD for those with and without Deep Brain Stimulation(DBS).

In their recent survey entitled “Autonomic Dysfunctionin Parkinson’s Disease with and without Deep BrainStimulation,” autonomic dysfunction, also known asdysautonomia, was highly prevalent for the participants inthe study. Fifty percent to more than 90 percent of theparticipants in this survey endorsed at least someautonomic symptoms depending on the domain. Of thenumerous symptoms related to dysautonomia, thegreatest difficulties manifested in urinary,gastrointestinal, and swallowing difficulties, followed by

symptoms related to thermoregulatory dysfunction,sexual dysfunction, cardiovascular issues, and lightsensitivity. Fifty-eight percent of the participants in thisstudy indicated that autonomic symptoms adverselyimpact or restrict engagement in social activities.Additionally, autonomic dysfunction was highly related tosymptoms of depression and anxiety.

This survey also highlighted that dysautonomia wasexperienced in both younger and older individuals andacross disease duration, with worsening symptoms overtime. Thus, regardless of age and disease duration,individuals with PD are vulnerable to experiencingautonomic symptoms. Furthermore, although many ofthe domains of autonomic dysfunction were not differentbetween DBS and Non-DBS groups, the findings from thissurvey revealed that individuals with DBS reported moreswallowing difficulties than those without DBS, which isconsistent with previous research that swallowing may beadversely impacted by DBS therapy. In contrast, and alsoconsistent with previous research, individuals withoutDBS endorsed higher levels of cardiovascular issues,reflecting that cardiovascular autonomic dysfunctionmay improve following DBS. With regard to implications,increased assessment and intervention for symptomsrelated to dysautonomia is indicated, with particularemphasis on better patient information, education andunderstanding of prevention and treatment.

Autonomic Dysfunction in Parkinson’s Disease

The Muhammad Ali Parkinson Center received a hugethank you from the President and staff of the ParkinsonAlliance for our part in distributing the self- report studyAutonomic Dysfunction in Parkinson’s Diseasewith and without Deep Brain Stimulation this pastspring. We in turn are passing their gratitude on to all ofyou who graciously contributed to the study. Together wehelped the Parkinson Alliance break another study record.This time over 1450 surveys were completed. Thank youall for your participation in research and education for theParkinson community.

The results of the study are summarized above in this

article submission from the Parkinson Alliance. Your compiled information is valuable to the entireParkinson community, which includes your healthcareand treatment team. Increased knowledge and a betterunderstanding of this complex disease will help thosetreating you by delivering better care.

If you missed the Autonomic Study, it is not too late toparticipate in another Parkinson Alliance self-report studyExercise and Parkinson’s Disease. We know many ofyou are interested in participating in research and self-


Passing on a big Thank You!

Continiued on page 13


The Michael J. Fox Foundation (MJFF) and AbbVieannounced the launch of Partners in Parkinson's, a newstrategic health initiative offering comprehensive supportto help people with Parkinson's disease (PD) optimizetheir care at every stage of the disease.

Partners in Parkinson’s provides patients and caregiverswith virtual and face-to-face opportunities to connectwith knowledge and support. These include aneducational website (www.partnersinparkinsons.org)featuring the first online tool enabling patients to locate amovement disorder specialist. The site offerscomprehensive information about Parkinson’s,including a downloadable Parkinson’s diseaseguide. The tool was developed in collaborationwith the International Parkinson andMovement Disorder Society. The website alsoconnects patients and caregivers with AbbVieParkinson’s Disease Advocates who areavailable to provide one-on-one supportanywhere in the United States.

An AbbVie Parkinson’s Disease Advocate can:• Educate you about PD and what you might

expect during your journey.

• Support you as you deal with your concerns.• Prepare you for meaningful conversations with your

doctor.• Help you identify resources, including a Movement

Disorder Specialist, who focuses on the treatment ofPD.

• Share the benefits of a holistic care team (i.e.: How aspeech therapist can help you as yourPD progresses).

To learn more go to www.pdadvocates.com. v

The Michael J. Fox Foundation (MJFF) and AbbVie

report studies offer many conveniences. Self-report studies can be done anywhere thatworks for you, be it at your kitchen table orfrom your summer cabin. They can be doneanytime, or over several sittings as it need notbe completed in one sitting. Transportation,expenses and inclusion / exclusion criteria areusually not an issue and there are no placebos.Like most studies, your information is strictlyconfidential and like all studies there is alwaysa due date. Exercise and Parkinson’s Diseasestudy closes on December 15, so get your self-report study today by contacting theParkinson Alliance or the MAPC (forinformation on obtaining a study surveyplease see page 15 under Current Studies atthe MAPC).

Passing on a big Thank You!Continiued from page 12


Breaking News in PD Clinical Trials

Vaccine for Parkinson’s DiseaseBiotech company AFFiRiS AG announced a €6 million euro(more than $8 million US dollars) grant from the EuropeanUnion to continue developing vaccines against Parkinson’sdisease (PD) and multiple system atrophy (MSA).The Michael J. Fox Foundation had granted AFFiRiS $1.5million in November 2011 to conduct the Phase I clinicalstudy of its PD vaccine drug candidate, PD01. Results fromthat study are expected later this year. Both the PD and MSAvaccines target the protein alpha-synuclein, which clumps inthe cells of people of both diseases. This protein aggregationleads to cell dysfunction and cell death. A therapy that couldprevent or break up the clumps may be able to slow or stopthe disease process.(www.michaeljfox.org/foundations/news-detail.php?parkinson-disease-vaccines-treatment-approach ).

Evaluating Safety, Tolerability and Efficacy of OralDrug SYN120 in PD DementiaBiotie Therapies has signed a 2 million grant from TheMichael J Fox Foundation (MJFF) to investigate SYN120

which is a dual antagonist of serotonin receptors 5-HT6 and5HT2a. Cognitive impairment in PD has been associatedwith imbalance in neurotransmitters such as serotonin.Drugs that block certain types of serotonin receptors havebeen shown to improve cognition in studies but nomedications are currently approved by the FDA for thismechanism of action.(www.biotie.com/en/investors/releases/release?NewsitemID=1817371&NewsitemYear=2014)

Uric Acid and the Progression of Parkinson’s DiseaseUric acid, the chemical that in high concentrations causesgout and kidney stones, may turn out to be a chemicalmarker for Parkinson’s Disease. Analysis of blood andcerebrospinal fluid from 800 patients showed that normalto high levels produced reduced risk of needing levodopathan those with low levels of uric acid. Researchers suspectthat uric acid could not only be a specific marker for PDprogression but also alter the course of the disease. A clinical trial is now underway to examine the safety ofinosine, a dietary supplement which the body converts intourate, and its ability to elevate urate levels in the blood.(www.pdf.org/en/results_therapies)

Managing Cognitive and Behavioral Changes inParkinson’sThursday, October 9, 2014 1:00-2:00 p.m. ETParkinson's can affect the way we think and act. Learnwhat's normal and what's not, and what to do about it. Presenter: Gregory Pontone, MD

Practical Pointers: Caring for Someone withParkinson’sThursday, November 13, 2014 1:00-2:00 p.m. ETLearn effective strategies to make life easier for you andyour loved one.Presenter: Julie H. Carter, RN, MS, ANPTo sign up for NPF webinars go to: http://www.parkinson.org/Improving-Care/Education/Education--For-Patients/Free-Webinar-Series

The following NPF Literature for Parkinson’s Disease isavailable free of charge through the NPF at the link below, orby visiting the MAPC Community Outreach and WellnessCenter/Resource Room. • What You and Your Family Should Know• Medications• Fitness Counts• Nutrition Matters• Speech and Swallowing• Caring and Coping• Activities of Daily Living: Practical Pointers• Mind, Mood and Memory• Guide to Deep Brain Stimulation Therapy• Managing Advanced Parkinson Disease

(http://www.parkinson.org/Improving-Care/Education/Education--For-Patients/NPF-Literature)

Upcoming National Parkinson Foundation (NPF) Webinars andNFP Resources

Clinical trials are opening at the Muhammad AliMovement Disorders Center. We have one new studycurrently enrolling, another to begin in a few weeks andmany trials in the pipeline. We have participants in anopen label study (this means that everyone in the studyis receiving the study drug) evaluating the long termsafety and effectiveness of a medication forhallucinations in Parkinson Disease. We haveparticipated in studies evaluating this medication since2009. The sponsor will be applying for FDA approvalby the end of the year. Development of hallucinationsmakes for a very challenging situation for patient andprovider. This medication has been shown to be safeAND effective and studied specifically in Parkinsondisease. We are very proud to have been involved in theresearch on this drug. Congratulations to AcadiaPharmaceuticals.

We are currently enrolling in the INTREPID studyevaluating a new Deep Brain Stimulation systemmanufactured by Boston Scientific. This device hasbeen approved for use in Europe and there has beensome very positive literature about it. We currentlyhave 2 people enrolled and the first will undergosurgery this month.

We are assisting The Parkinson Alliance with their newresearch project entitled “Exercise and Parkinson’sDisease” by recruiting interested participants. TheParkinson’s Alliance uses self-report surveys as a toolfor collecting information about people with PD andhave found this method can successfully measuremany of the issues and topics important to theParkinson community. The concept of exercise beingan important part of healthy living is not a new conceptin our community. Additionally, there is researchsupporting the importance of exercise for individualswith PD, from symptom management (e.g. improvinggait, balance, and freezing spells) to investigationsabout exercise and neuroprotection. The project isopen to anyone diagnosed with PD and interestedparticipants can pick up a copy of the “Exercise andParkinson’s Disease” survey in the MAPC CommunityOutreach and Wellness Center or by contacting theParkinson Alliance at their toll-free number 800-579-

8440. Completed surveys are accepted now throughDecember 15, 2014. After the survey data is analyzed,participants will receive a copy of the survey resultsfree of charge.

In a few weeks, we will begin enrolling in a studyevaluating long acting amantadine in the treatment oflevodopa induced dyskinesias. This medication issimilar to regular amantadine but is taken once a day, atbedtime. The data from a previous study evaluatingthis drug was very good, and we are excited to be ableto offer this for patients suffering from dyskinesias.This study is a blinded study (some people will receivethe study drug and others will receive placebo butneither you nor your doctor will know which you areon). There will be an open label extension (everyonewill get the study drug) available after the first study isover.

Participation in clinical trials is very important if we aregoing to continue to find new and innovative therapiesfor people living with Parkinson Disease. If we don’thave a trial that fits your needs or interests, pleaseconsider www.clinicaltrials.gov orwww.foxtrialfinder.com (affiliated with the Michael J.Fox Foundation) to find other clinical trials near you.

If you are interested in clinical trials, would like somehelp finding a trial, or just have questions, please call ore-mail, Edie Simpson, RN, 602-406-4206 [email protected]

Current Studies at the Muhammad Ali Parkinson Center


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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. Patientsshould discuss information regarding medical management with their physician.

Leave your legacy with DignitySupport the patient care, medical research, teaching and communityoutreach at Barrow Neurological Institute and St. Joseph’s Hospital andMedical Center with a gift in your will or trust.

To learn how you can partner with us in providing world-class medicine for future generations, call 602-406-1025, email [email protected] or visit www.planyourlegacy.stjosephs-phx.org.

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