southwest parkinson news - barrow neurological …...muhammad ali parkinson center at barrow...

Hospitalization and PD By Edie Simpson, RN, CNRN

Hospitalization is a stressful time for anyone. But for people living with Parkinson’s disease, hospitalization poses even greater challenges.Studies have shown that people living with Parkinson’s disease are hospitalized more frequently, experience a greater risk of complications, and have a longer length of stay than their age related peers without PD. The reasons for this include: hospital personnel are unaware of the complexity of PD, the importance of medication and the timing of administration, and the fact that many commonly prescribed medications often given in the hospital are contraindicated in Parkinson’s disease. In addition, many hospital pharmacies do not carry the full complement of PD medications.So what can we do to help make hospitalization safer for people with Parkinson’s disease?Before we talk about solutions, let’s discuss the problem.There are some things about hospitals and hospital personnel that you need to understand. First, hospital nurses are not educated about Parkinson’s disease. There is very little, if any, information provided in nursing school about PD. The same is true of doctors in medical school.People with PD don’t go to the hospital for treatment of

their PD. Your PD is managed as an outpatient. You go to the hospital for some other reason: a fall, fainting, chest pain, or an elective admission for a hip replacement, etc. But your hospital doctor doesn’t know PD. Why would they? They specialize in hearts or hips or whatever. However, the issue with Parkinson’s disease is that, if your PD is not managed properly while you are in the hospital, the PD symptoms may worsen and interfere with recovery from the reason for admission. Secondly, wearing OFF is not a familiar concept to hospital personnel. The unique characteristics of carbidopa-levodopa (CD/LD) and the progressive nature of PD make medication timing as important as the medication dose itself. Hospital staff don’t understand what can happen to you if your medications aren’t given at the times your brain needs them.Third thing to know is that in the hospital, medications are given on specific schedules. For example, if you tell the nurse that you take your CD/LD 4 times a day, you will get it at 9 am, 1 pm, 5 pm and 9 pm, just like everyone else who takes a medicine four times daily. This is done because there is typically one person giving all the medications for a lot of patients. This allows the nurse to make “medication rounds” and saves time. However, these times may not come close to the times you take them at home. If the timing of your medications is changed, it may put you at risk of increased OFF time and other potential problems in the hospital.While in the hospital it is considered acceptable for medications to be administered within one hour before or after the scheduled time. So, if your medication is due at 9 am, you may get it anytime between 8 am and 10 am. This is considered acceptable. For many people with Parkinson’s disease, this can completely alter their day, increase OFF time, and put them at a greater risk of complications.Most hospitals do not allow you or a caregiver to administer your medications. Although most hospital staff would love this, it is a rule set by regulatory agencies that medications must be administered by, or at a

Southwest Parkinson News

InsideCaregiver Corner . . . . . . . . . . . . . . . . . . . Page 5Spotlight on Dave Denes . . . . . . . . . . 2WPC 2016 Caregiving Summit . . . . . Page 14The Southwest Parkinson News contains information provided as a service and is not intended to constitute medical advice or views. Patients should discuss information regarding medical management with their physician.

Continued on page 2

Muhammad Ali Parkinson Center at Barrow Neurological Institute® Fall 2016A National Parkinson Foundation Center of Excellence

2 Fall 2016 • Southwest Parkinson News

minimum witnessed by the nurse.If the hospital does not carry your particular PD medication, you can still take that medication. But the pharmacist has to first verify the medication is what you say it is. Once reconciled, your supply of medication will be kept in the pharmacy and dispensed by the nurse. This process can take time and delay your medication dose.

This is the bad news. But there is some good news. Most nurses and doctors want to give good care and will listen and try to honor your wishes. There are some hospitals, including St. Joseph’s Hospital and Medical Center (SJHMC) and Barrow Neurological Institute (BNI) that are implementing a variety of strategies to provide better care for people with PD. For example, if a patient is on medications for Parkinson’s disease, the computer sends an alert to the provider, the pharmacy, and the floor nurses indicating that this patient may have Parkinson’s disease and medications need to be given on the home medication schedule. Information about PD is readily visible in the electronic medical record. If a physician enters a medication that is contraindicated for PD, the computer will alert the doctor and inform her/him that the medication is unsafe for PD and will provide safe alternatives. In addition, nurse educators and charge nurses received a 4 CEU training course on caring for hospitalized patients with PD. To make sure you have the best possible outcome, here are some suggestions for you and your care partner to be prepared in the event of a hospitalization.1. Get a letter from your Parkinson’s doctor, explaining

the need for your Parkinson’s medications to be given on time, every time, based on your home schedule. Include the specific times you take your medications, and have him/her comment on what happens if you do not get your medication on time. The letter should also include the medications you should never get. Have your doctor sign it and provide contact information. Have your doctor keep a template in your medical record so that it can be updated whenever your medications change. Keep a copy with you at all times, should something unexpected happen. You can provide a copy to your admitting

nurse and physician.2. Always give the specific times you take your

medications, not the number of doses per day. For example, when the nurse asks about your PD medications, don’t say “I take my CD/LD 4 times a day.” You should say, for example, “I take 1 tablet of CD/LD 25/100 at 6am, 10 am, 2 pm and 6:00 pm.” If your first medication of the day is when you wake up, discuss when you will have to wake up in the hospital and let the nurse know if that will work for you. Another FYI while in the hospital; let’s say you tell your nurse you take your medication every 3 hours. That medication will be 3 hours around the clock. You may be awakened in the middle of the night for medication you don’t need.

Bottom line: you need to be very specific as to the time you take your medications, the specific formulation of CD/LD (ER, CR, IR), the specific number of tablets, and how many doses per day and/or the spacing of medications.

3. Discuss with your nurse what happens to you if you don’t get your medications on time. Let them know if your medications are late, you might have difficulty getting out of bed, difficulty using your hands to use the call bell, difficulty using utensils to feed yourself, have difficulty speaking, etc.

4. If you require physical, speech, or occupational therapy while in the hospital, talk to your nurse and therapist about scheduling your sessions when you are ON, so you will get optimal benefit from your session.

5. Discuss with your nurse how you and/or your care partner can help make sure you get your medications on time. Discuss this up front to avoid confrontation later. Let the staff know you understand they get busy and strategize what you can do together to help get your medications on time, without interfering with the care of others. Working together always gets the best results.

6. Get an Aware in Care Kit from the National Parkinson Foundation: 1-800-4PD-INFO (473-4636). Kits are free and give you a nice place to keep the important information related to your PD all in one place, should you need to be hospitalized. In your kit, you will find some handy things to help let others know your specific needs. But here are some other suggestions to optimize and customize your kit:a. An updated letter from your doctor as discussed

aboveb. Medication bottles with updated labels containing

Hospitalization and PDContinued from previous page

Most nurses and doctors want to give good care and will listen and try to honor your wishes.

3Fall 2016 • Southwest Parkinson News

at least one day’s worth of medication. When you pick up your prescriptions, ask the pharmacist for a duplicate label and an empty bottle. They will gladly do this. Replace the labels whenever you get a new prescription.

c. Make sure your care partner knows where you keep your kit, should you have to be hospitalized unexpectedly. Having current labels and examples of the medications will expedite the identification of your medications by the hospital pharmacist, should the medication not be stocked by the hospital.

d. Know the medications you should never take. The kit provides pre-printed sheets that you can give to the care team.

7. Lastly, the best advice is to avoid hospitalization. Needless to say, there are times that hospitalization

cannot or should not be avoided. But the best ways to minimize the possibility of needing to go to the hospital include:a. Have a PCP who you feel comfortable with, who is

accessible, and who understands PD. Make sure

that your PCP has contact information for your Parkinson’s doctor, should they need to consult. Many things that make PD worse are things that are most appropriately treated by a PCP, such as urinary tract and/or respiratory infections.

b. Don’t wait until Friday afternoon hoping things will get better. Call your doctor or contact your PCP as soon as you notice changes that might indicate a problem.. Remember, PD is slowly progressive. If your PD symptoms worsen over a short period of time, it is unlikely to be PD.

c. Stay healthy. Maintain a healthy weight, exercise, eat healthy foods, drink plenty of water - advice all of us should follow. But for people with chronic disorders, it is even more important. If you also have hypertension, heart disease, kidney disease, etc., follow the advice of your specialists and try to keep your symptoms under the best control possible. Optimal health = optimal quality of life

As always, should you have questions, or need help planning for a hospitalization, please don’t hesitate to call us. We are here to help. v

Dave in Israel

The entire Desai Family in Hawaii sporting their “Walk the Fight Run the Distance” shirts from the Parkinson Network of Arizona’s annual walk to raise funds for MAPC and awareness for PD

Jack planking in Mexico

No matter where you are in this world, you can take your exercise with you! Here are some shots of friends doing their PWR!Moves™ during their travels this summer. Their commitment to exercise as medicine for PD is inspirational!


Save the Dates!Socializing, exercise and continuous learning are key components for healthy aging.

Please save the dates for the following MAPC-related events:

11th Annual Walk the Fight & Run the DistanceSaturday, February 11, 2017 | 9:00 AM – 1:00 PM

Tempe Town Lake Beach Park | 80 W. Rio Salado Parkway, Tempe, AZ 85281

Join us and help raise awareness for Parkinson’s disease in Arizona! Activities include a 5K Walk or Run, 1.5 block stroll, children’s activities, resource fair, demonstration stage and food vendors. Walk the Fight & Run the Distance is presented by the Parkinson Network of Arizona and proceeds from

the walk/run support the community outreach and wellness programs of the Muhammad Ali Parkinson Center at Barrow Neurological Institute in Phoenix, AZ.

Cost: $25 per adult registering to walk, includes shirt; children age 15 and under are free.Runner fees vary, please see website.

Phone: 602-718-7478 | Register at www.walkthefight.com

Muhammad Ali All Star Conference: A Day of Parkinson’sSaturday, March 4, 2017 | 10:00 AM – 3:30 PM

Location TBD

Join us for this one of a kind conference presented by the Muhammad Ali Parkinson Center and the Baehr Challenge. Enjoy a day of education, camaraderie, exercise and mental fitness. We

welcome back Dr. Mark Stacy, Professor of Neurology at Duke University School of Medicine to the Valley to discuss the latest research in PD. Additional speakers will talk about the benefits of exercise, deep brain stimulation outcomes and current trends at Barrow Neurological Institute,

the power of positivity and happiness, and cognitive issues in PD.

Cost: No fee, space will be limited. Register via Barrow Resource Link at 1-877-602-4111 or https://dignityhlth.org/xxxxx

1st Annual Holiday AffairSaturday, December 10, 2016 | 1:00 – 3:30 PM

Church of the Beatitudes | 555 W. Glendale Ave, Phoenix, AZ 85021

Please join us for our first valley wide Holiday Affair celebrating the holidays with performances by the Tremble Clefs, Voces Unidas and Parkinson’s Dance. Activities include interactive games, holiday

shirt/sweater contest, good eats and more. If you would like to share your baking flare, please bring two dozen of your favorite cookies for the best holiday cookie contest. You could be the winner!

Cost: No fee, space is limited so registration is requested. Register via the Barrow ResourceLink at 1-877-602-4111 or

https://dignityhlth.org/MAPC-Holiday-Affair-2016


By Nancy Bivins, LMSW

I know that many of you attended the Third World Parkinson’s Congress (WPC). Those of us who did not attend are hearing that it was a wonderful experience and from all of the great information that is being shared, we totally believe it! Please keep sharing!

The day preceding the official opening of the WPC was the “Caregiver Summit.” There were 150 registrants attending in person and 750 viewing online! It seems appropriate that on the heels of this great conference we review some of the resources available and how the different organizations work together to provide services to caregivers.

One of the online tools shared at the conference was the National Parkinson Foundation’s (NPF) CareMAP, available at www.caremap.parkinson.org. This is a comprehensive guide for caregivers whose loved one is challenged with advanced-stage PD. Generally, advanced-stage PD is when PD symptoms impact all of a person’s daily routine, i.e. dressing, grooming, and bathing. Available on the CareMAP site are short how-to videos that provide practical tips for the caregiver in the delivery of care. A few of the topics available are, “changes around the house,” ”plans and scheduling,” “movement and falls,” and “planning ahead.” How convenient to have this information at your fingertips and accessible 24 hours a day!

However, the speaker at the Caregiver Summit who presented about CareMAP was quick to encourage people to connect with their local PD Programs. Online information is valuable and should be used to augment your PD education, but it is not to take the place of hands on, person-to-person, interaction.

The Muhammad Ali Parkinson Center (MAPC) does offer many opportunities for education and interaction. For instance, for information about how to assist your loved one when getting in and out of bed, up off the floor, up from a chair, or in and out of a car, etc., the Center offers the class Caregiver Bootcamp. Techniques are not only demonstrated, but if your loved one attends with you, the two of you can practice together. During class, staff is available to help problem solve and provide immediate feedback to maximize your learning experience.

The National Parkinson’s Foundation (www.parkinson.org) and the Parkinson’s Disease Foundation (www.pdf.org) have archived many webinars that are now available online. Again, these online resources are available 24 hours a day, 7 days a week, which gives you access to experts at your convenience. Make use of these options, and if you are in the valley be sure to include the Muhammad Ali Parkinson Center as well. The MAPC is proud to be distinguished as a National Parkinson Center of Excellence. This is a prestigious designation, defined by the NPF as follows: Centers of Excellence are widely renowned for outstanding performance in Parkinson’s research, care and outreach. Centers are recognized by their professional (medical) peers as leaders in Parkinson’s care and each center meets rigorous criteria for research, comprehensive care delivery, professional education and patient outreach services. NPF brings all Centers together at least annually to provide updates on care activities and research initiatives. Each Center of Excellence must re-certify every three years. This process includes a review of achievements by a peer-review committee as well as NPF staff.

We want you to be aware that the MAPC offers education, including PD 101 and PD 202. Each seminar is 4-weeks, 2 hours each session for people with Parkinson’s disease and their families. The classes are without charge and

include printed materials along with lectures which cover such topics as symptoms, medication, nutrition, basic neurology, sleep, depression, anxiety, and cognitive change to name some of the subjects. If you have a question, or need clarification, you can get the answer right then because the instructor is in the class with you.

Participating in education classes provides not only the presentation’s pertinent information, but also something that is not able to occur while watching a video: the valuable opportunity to meet others who are living with PD and their loved ones. We are so grateful for the amazing national organizations with whom we partner and we encourage you to use the online resources regularly, but not to the exclusion of local support groups, exercise classes and education.

Specifically available for caregivers through the MAPC is the 6-week class Powerful Tools for Caregivers (PTC). This material was developed over 3 years of pilot testing and has been shown to have a positive impact of caregiver health. Since the program’s inception, PTC materials have reached over 80,000 caregivers. A few of the topics covered during the classes are stress, changing negative self-talk, communication, and dealing with difficult emotions. This class brings caregivers together for the purpose of focusing on you and the importance of developing good self-care for yourself as you care for your loved one.

Use the best of both our national organizations, as well as our local resources. Join a support group, register for a class, and make an appointment to meet with the social worker (that would be me)! Let us serve you!

To learn more about the National Parkinson Foundation’s resources please read Vaughn Edelson’s article ”World Parkinson Congress 2016 Caregiver Summit” in this edition of the Southwest Parkinson News. v

Caregiver Corner


The Muhammad Ali Parkinson Center (MAPC) was well represented by MAPC staff, volunteers and patients and their families at the World Parkinson Congress (WPC) in Portland, OR. Long before the congress actually took place, MAPC Hispanic Outreach coordinator Claudia Martinez was invited to be a WPC Communication Committee member and on the Human Interest Subcommittee. Her leadership over the past years culminated in the organization of the first ever Spanish subcommittee and on the first time to have a Spanish page on the WPC website.

Utilizing the internet and social media, Martinez and her volunteers began reaching out to others in Spanish speaking countries to provide PD education. With the help of the Barrow Neurological Institute’s informatics technology and staff, the annual MAPC Hispanic Conference has been webcasted in real time and has involved hundreds of others in 16 other countries over the past 3 years. To expand this network to the WPC, Martinez and her volunteers initiated an art project where individuals from around the Spanish speaking world put their artistic flare on an art template of tulips (the international symptoms of PD). These individual pieces were pieced together to create a beautiful poster with an accompanying world map reflecting all the countries represented by the individual contributors. This project was one of 3 MAPC posters accepted by the WPC.

Martinez was also asked to be a panelist for the pre-congress leadership forum (held Monday before the conference) to share her work in outreach, particularly with the Hispanic population in the US. Other world leaders on the panel shared their work

in Africa, India and Malaysia. Martinez also had two very well attended round table discussions open to WPC partners and key players from different organizations worldwide.

Behind the scenes, Martinez and Fulvio Capitanio from Spain worked closely with the WPC and Euphoria Productions from AZ to coordinate and produce video briefings of faculty presenters’ talks in both English and Spanish. This is a valuable resource as everyone will be able to view the videos and be up to date on the latest in the field of Parkinson’s disease. Stay tuned for when these will be posted on the WPC.

WPC also supported MAPC efforts to represent the Spanish speaking communities by having MAPC’s song “I am the Beat of another Song” performed by songwriter Lobo and Spanish speaking attendees at the WPC during the welcoming reception Monday night. This “choir” was organized prior to the event

as singers were able to rehearse with Lobo both in real time via Face Time and through prerecorded sessions. Once in Oregon, the group met together to meet each other for the first time and to rehearse before show time. The group was also invited to sing in WPC’s “PD Dance and Movement” events. During each performance all attendees were able to participate in both English and Spanish versions of the song. The song’s companion

video also was one of twelve top videos selected to compete for the people’s choice award. A special shout out to the staff of the National Parkinson Foundation in Miami for joining our choir and supporting this initiative, we always are grateful for all of your support. v

Muhammad Ali Parkinson CenterRepresents at the World Parkinson Congress


Wellness Exercise Classes

Avondale / Litchfield Park / Goodyear

Art of Moving Thursdays, 10 -11 am, thru Nov 17; January 5- July 27Skyway Church of the West Valley14900 W. Van Buren, Goodyear Fountain Hills

Art of Moving 9 - 10 am; PWR!Moves™ 10 - 11 am Fridays, thru Nov 18; Jan 6 -May 26Fountain Hills Senior Center13001 N. La Montana, Fountain Hills, AZ

Phoenix

MAPC classes listed below are held at the MAPC Community Outreach and Wellness Center240 W. Thomas Rd, Suite 302, Phoenix, AZ 85013

An assessment is required prior to registering for all PWR!Moves™ and Rock Steady Boxing Classes. Please call Patty Hatton at 602-406-3840 to schedule your assessment.

Classes will be held thru Dec 12 , 2016; January 3- August 11, 2017

Knock Out PD Boxing ClassesCall for schedule.

Music and Movement: Neurologic Music TherapyMondays, 2:30-3:30 pm

Voice ClassesTuesdays, 1:00-2:00 pm Wednesdays, 1:15 - 2:15 pm

PWR!Moves™Please call for schedule

PWRCircuit™Friday, 11am-12 pm

Tai Chi Wednesdays, 2:30-3:30 pm

Yoga for Everybody, Mind and SoulMondays, 1:00- 2:00 pm, *mat/floor work class*Thursdays, 2:00-3:00 pm, *seated*

Beading Workshop3rd Friday of the month from 1:30-3:00 pm

Paradise Valley

Tai ChiMondays, 2:30-3:30 pm; Jan 9-July 31, 2017Shilo Community Church19021 N 32nd St., Phoenix, AZ 85050

Art of MovingTuesdays, 9:30-10:30 am; Jan 3-July 25, 2017Shilo Community Church19021 N 32nd St., Phoenix, AZ 85050

Parkinson’s DanceThursdays, Please call for datesBender Performing Arts3141 East Beardsley Road, Suite #110, Phoenix, AZ

Scottsdale

Yoga for Everybody, Mind and Soul!Mondays, 2:00 – 3:00 pm Jan 9-July 31, 2017Assumption Greek Orthodox Church – Community Room8202 E. Cactus Road, Scottsdale, AZ

Fall 2016 Pull-Out SectionRecreation and EducationIn order to plan safe and effective classes, all classes require pre-registration. Exercise classes are only $5 per class. Education classes are free. For further information and/or to register, please call: Patty Hatton, 602-406-3840.


Fall 2016 Recreation and Education cont.

Sun Cities

Art of MovingMondays, 10:15-11:15 amJan 9-July 31, 2017Shepherd of the Hills United Methodist Church13658 Meeker Blvd., Sun City West (Meeker & RH Johnson)

Art of MovingThursdays, 1:00-2:00 pm; Jan 5- July 28, 2017American Lutheran Church of Sun City172 N Del Webb Blvd (Del Webb just south of Bell)

Sun Lakes

Art of MovingMondays, 10:30- 11: 30 amJan 9-July 31, 2017Sun Lakes United Methodist Church9428 E. Riggs Road, Room 10

PD Choirs

Tremble Clefs Singing ProgramThursdays, 4 - 6 pmGranite Reef Senior Center – City of Scottsdale1700 N. Granite Reef Road (Granite Reef & McDowell) Contact: Faith Blenkle at (480) 991-0451

Tremble Clefs Singing ProgramWednesdays, 10 am - 12 pm Shepherd of the Desert Lutheran Church11025 N. 111th Avenue, Sun CityContact: Beth Lee at (623) 433-9477


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

Fall 2016 Support Group Calendar

Specialty Groups

Young Onset Wellness Group For those aged 30-50’sMonthly Meetings/Outings - Held at varying locationsContact Kris Watts 602-406-4921

East Valley

Sun Lakes/Chandler/GilbertSnedigar Recreation Center Meeting Room4500 S. Basha Rd., Chandler, AZ 852481st Friday of the month, 1:30-3:00 pmContact Kris Watts at the MAPC 602-406-4921

AhwatukeeMountain Park Senior Living4475 E Knox Rd., Phoenix, AZ1st Friday of the month, 10:30-12:00 pm Contact Kris Watts at the MAPC 602-406-4921

MesaRed Mountain Multigenerational Center7550 E Adobe Rd., Mesa, AZ 852071st Monday of the month, 1:30-3:00 pm Contact Kris Watts at the MAPC 602-406-4921(1:30-2:30 Caregiver breakout group)

Fellowship Square35 W. Brown Rd, Mesa, AZ 852071st Wednesday of the month, 1:30-3:00 pmContact Debbie Harwood at Fellowship Square 480-290-7950

Scottsdale

Desert Mission United Methodist Church7373 E Dixileta, Scottsdale, AZ 852661st Thursday of the month, 10:30-NoonContact Marilyn Ware 480-488-8538

HealthSouth Rehabilitation Hospital9630 East Shea Blvd., Scottsdale, AZ 852602nd Friday of the month, 10:00am- 11:30 am Contact Patty Hatton at the MAPC 602-406-3840

HealthSouth Rehabilitation HospitalCaregiver Support Group (for caregivers only) 9630 East Shea Blvd., Scottsdale, AZ 852604th Friday of the month, 10:00am- Noon Contact Danah Flanagan at [email protected]

Fountain Hills Fountain Hills Community CenterFountain Hills Community Center13001 N. La Montana Dr., Fountain Hills, AZ 85268First Wednesday of the month, 9:30-11:00 amContact Mary Stone at 480-816-6080

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

Phoenix

North CentralBeatitudes Church/Duet Patio Room555 W. Glendale Ave., Phoenix, AZ 850212nd Wednesday of the month, 1:30-3:00 pm Contact Kris Watts at the MAPC 602-406-4921

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

Fall 2016 • Southwest Parkinson News10

West Valley

Sun City WestShepherd of the Hills United Methodist Church13658 Meeker Blvd., Sun City West, AZ3rd Tuesday of the month, 3:00-4:30 pmContact Rene Rizzo at 623-584-4999

Surprise/Sun City Grand Cimarron Center17100 West Clearview Blvd., Surprise, AZ1st Tuesday of the month, 10:00-11:30 am Contact Patty Hatton at 602-406-3840

GlendaleHealthSouth Rehab HospitalGlendale 13460 N. 67th Ave., Glendale, AZ2nd and 4th Tuesday of the month, 1:00-2:00 pmContact Trent Tripp or Rose O’Gorman at 623-878-8800

Avondale/Goodyear Skyway Church of the West Valley 14900 W. Van Buren Building E #609Goodyear, AZ 853383rd Tuesday of the Month, 12:30- 2:00 pmContact Nancy Bivins at 602-406-4266

Carepartner WellnessSkyway Church of the West Valley 14900 W. Van Buren Goodyear, AZ2nd Thursday of the Month, 10:00- 11:00 amContact Ann Wheat at Beatitudes Center D.O.A.R. 602-274-5022This group is for carepartners only

Southern Arizona

Casa GrandeRobson Ranch Conference Center5687 N Robson Blvd., Eloy, AZ 851311st Monday of the month, 10:00-11:30 am Contact Kris Watts at the MAPC 602-406-4921

YumaDaybreakers Café10800 E Frontage Rd., Yuma, AZ 853671st Monday of the month, 9:00- 11:00 amContact Beverly at 928-246-2876

Northern Arizona

PrescottFirst Lutheran Church231 W. Smoke Tree Lane, Prescott, AZ 863013rd Thursday of the month, 10:00-11:30 amContact Kay Bolander at 928-778-2242

KingmanKingman Regional Medical CenterDell E Webb Wellness CenterCerbat Conference Room3rd Tuesday of the month, 1:00 pmContact the Education Department at 928-263-5640

Verde ValleyVerde Valley Medical Center269 S. Candy Lane, Cottonwood, AZ 86326Outpatient Rehab Services- Conference Room2nd Friday of the Month, 3:00-4:00 pmContact Judy Talley at 928-202-7952

Western Arizona

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

Support Groups continued


World Parkinson’s Congress:A Patient PerspectiveThe Buddy Program and MoreBy Mary Hostetler

The 4th World Parkinson Congress (WPC) 2016 was held in Portland Oregon Sept 20-23 at the Oregon Convention Center (1,000,000 Square Feet). The sheer size of the Convention Center limited my ability to see and participate in everything, but I had a great time because of all that I did see and learn, and through all the fabulous people I met!

The highlight of the WPC for me was meeting so many wonderful people. The most valuable way to meet people was the WPC Buddies Program. This program was a new initiative to strengthen the global Parkinson’s community by connecting WPC registrants with each other before the Congress ever began! People with Parkinson’s (PWP) were paired together as they registered. I was paired with Nan Little from the United States because of similarities in our biographies: same age, length of time with Parkinson’s and interest in exercise to offset symptoms. We shared emails starting in May, months before the Congress. It was very exciting to finally meet and talk with my “Buddy” Nan at the “Buddies Reception” in Portland. While we had similarities we also found we have a few differences. She is a fly fisherman –and I can barely cast! She wrote the book “If I Can Climb Mt Kilimanjaro, Why Can’t I Brush My Teeth?” She gave a wonderful talk on her book at the Book Nook during one of the Meet and Greet Authors sessions.

I had another opportunity to meet new people on the shuttle to the airport where I met 3 young men from Tucson: Mitchell, JP and Tory. When I asked what their interest in Parkinson’s was, I was surprised to learn they were research fellows from the University of Arizona. Their research involves repurposing the drug Ketamine in an effort to maintain higher doses of levodopa for longer periods of time with the potential to improve a Parkinson’s patient’s health and well-being. They have been working on this project for 10 years. I never would have read their poster program had I not rode the shuttle with them!

I would encourage anyone to participate in the WPC and the Buddies Program given the opportunity. I hope to keep up via Face Book with many new friends. v


Meet Dave Denes, his wife Petra and Dave’s younger sister, Karen. While they are all very special individuals in their own right, they are also intimately connected by Parkinson’s disease. Karen was first diagnosed with PD over 10 years ago, Dave was diagnosed four year ago and Petra fulfills the role of care partner and caring sister-in-law.

Dave’s journey with PD started the weekend of his daughter’s wedding in July, 2012. At the wedding Dave’s sister, Karen, noticed he had some familiar PD symptoms and expressed her concern to Petra. After the wedding festivities, Petra checked out a book from the library on PD and shared it with Dave. While reading the book Dave realized immediately he had some of the symptoms of PD and called Karen to discuss his findings. He followed her suggestion and made an appointment with a Movement Disorder Specialist. During the appointment he was put through a series of small tests and was told that he had PD. At that moment PD

became a family affair for the entire Denes’ family.

However, prior to that first appointment Dave already knew, in the back of his mind, that he too had PD. He knew there are a variety of reactions people have when receiving a serious diagnosis, but he accepted it right away with an attitude “it is what it is.” Petra, a nurse, also accepted the fact he had PD and actually felt relief that it wasn’t something far worse. Dave and Petra made a choice as a team (after 35 years of marriage and “through sickness and in health”) to be proactive and began getting involved in the PD community. Dave and Petra also share their good and bad days, and have upheld the promise they made to each other to always communicate their fears and triumphs, no matter how big or small. This has helped them tremendously as they manage PD and the effects it has on both of them.

Their two daughters took the diagnosis a little harder, especially knowing how hard the journey had been for their Aunt Karen. But as mentioned, this was now a family affair and in true Denes’ spirit, the girls started getting involved by joining Team Fox, planning fundraisers, running for the cause, going to MAPC’s PD 101 and PD 202, and attending support groups with their parents

Petra and Dave started their journey by going straight to Barrow and Muhammad Ali Parkinson Center (MAPC), because they knew this is the place with the most up-to-

date treatments. Once introduced to MAPC staff they found all the resources the center had to offer for education, support and exercise. The couple attended the class PD 101. Petra valued the teaching that went beyond what their neurologist had time to explain during appointments. They also appreciated learning the practical approaches to PD, as opposed to having a strictly scientific understanding.

Dave and Petra knew they needed a support group but were both employed full time and could not attend a support group during the day. They advocated for themselves by approaching MAPC staff to inquire whether an evening support group could be formed for working individuals. Soon after, the first evening support group was held and it consisted of three people: Dave, Petra and Patty Hatton (MAPC support group leader)! However, word got out and the group has grown to over 25 regular members. Dave and Petra regularly attend the monthly support group where they are able to laugh and cry with other families affected by PD. They have made many true friends because of the support group. Their daughter Emily also attends when she is able and keeps everyone on their toes with her questions and her pro exercise message.

Because Dave understands the importance of exercise he faithfully attends PWR!Moves™ and Rock Steady Boxing. He also values networking with other people living with PD, having fun, not worrying, and taking one day at a time.

Spotlight on Dave DenesHis Family and their Experience at the World Parkinson Congress


However, as involved as Dave and Petra are in the Parkinson’s community, not everything revolves around PD. Some of their shared interests include a daily walk with their dog Bear, watching football and hockey, and antique shopping. Dave’s recent retirement brings additional opportunities for the couple to explore new interests and hobbies.

One of the best experiences they’ve had recently was attending the World Parkinson Congress (WPC) in Portland, Oregon together with Dave’s sister, Karen. The WPC was very important to Karen who traveled from Michigan to attend her first ever PD conference! They found it heartwarming to see so many people with Parkinson’s (PWP)who made the effort to go to the WPC to learn more about their disease and hear firsthand about what is happening in the PD community worldwide. Karen said that she learned more in one day at the WPC then she had in the last ten years. Karen also met many people who have PD, which led her to feel loved and understood, and therefore not alone. Petra expounded further by saying that she felt that at the conclusion of the Congress everyone left with a new sense

of hope.

Dave reports that when it comes to how he manages his PD symptoms, he begins as soon as he wakes up. Right then he says to himself, “It’s another day and you can do it.” He believes that staying active and involved in the community helps to alleviate his symptoms and the result is that he feels better physically, mentally and emotionally. Also, Petra, Dave’s wife is an amazing support to him and their family. Together they are committed to working through the daily challenges. Petra’s name means “rock” and, per Dave’s report, she lives up to her name.

To those who are newly diagnosed, the Denes family says “Please stay positive, take one day at a time, get involved in a support group, learn all you can about your

disease, and ask questions. Do not let Parkinson’s disease limit you. You’re stronger than you think you are and there are many resources to help you on this journey. Remember that there is also a whole

community of PWP and their families who will be pleased to walk with you!” v

Clinical Trialsat the Muhammad Ali

Parkinson CenterThis is an exciting time for research

studies and clinical trials at the Muhammad Ali Parkinson Center. To see if there is an opportunity for you to be involved in a Parkinson’s

disease study please call:

Edie Simpson, RN Research Nurse

at 601-406-4206

Lucia Rodriguez, MS, CCRCClinical Research Specialist

at 602-406-2929


WPC 2016 Caregiving Summit By Vaughn Edelson, Director of Education, National Parkinson Foundation

Most workshops and resources for Parkinson’s disease (PD) caregivers understandably focus on how you can help manage the person with PD, from general advice to specific tips: make sure they exercise, cut food into small pieces, schedule appointments when medications are likely to be working well, try not to argue with someone who is experiencing a hallucination or delusion... These suggestions are practical and important, but they place all the attention on only one person in the care partnership. Indeed, too often, organizations and individuals do not focus on the needs of caregivers themselves.

As part of an effort to change that, on September 19, 2016, the National Parkinson Foundation (NPF) division of the newly formed Parkinson’s Foundation hosted a daylong Caregiver Summit in Portland, OR, that brought together caregivers from all over the U.S. and the world (with participants from as far away as Chile and Malaysia!). More than 150 attendees shared their experiences and everyday strategies for coping with the complex problems that arise as a result of PD. There are two distinct but complementary aspects to caregiving – caring for the person with Parkinson’s and caring for you. The Caregiver Summit addressed this dual role, focusing particular attention on strategies that can be used to cope in the moment.

Why a Summit?The event was one of many steps NPF is taking to better understand and address the needs of PD caregivers. There is an abundance of research on Parkinson’s disease, as well as a wealth of information and support for the people who have it. Their caregivers, on the other hand, get much less attention. Ruth, who cares for her husband, Henry, said: “As long as you dress up, with makeup on and your hair done, they think you’re ok. And some days I’m crushed.” NPF is changing that, by spearheading both research and new resources for caregivers of people with PD.

Research from NPF’s Parkinson’s Outcomes Project – the largest-ever clinical study of Parkinson’s disease – has proven what caregivers already know: caring

for someone with Parkinson’s can be an incredibly challenging task! Over the years the Parkinson’s Outcomes Project has examined the predictors of caregiver burden in PD; how a caregiver transitions (from spouse to other relative, paid caregiver, or other) can impact the health of both the person with PD and the caregiver; sex differences in PD caregiving; and most recently, the association between age and increased risk of caregiver strain.

In addition to the research, our Helpline underscores the need for more support for caregivers. NPF’s Helpline specialists have responded to more than 60,000 contacts since 2010, and 40% of those contacts have been from family members of someone diagnosed with PD. These caregivers are eager, sometimes desperate, for information, and their questions and concerns represent the range of the PD experience.

Caregiver Resources

NPF used these combined insights from these research studies and Helpline calls to launch new programming for caregivers. It’s not always fun, helping with meal prep and trips to the bathroom, but these tasks are essential and unavoidable for the vast number of people who regularly take care of a loved one with Parkinson’s. At the same time, caregivers must balance PD tasks with other aspects of their daily lives, maintain their own health, and deal with a range of emotions and stress.

To help address these needs, in 2014, NPF launched CareMAP (www.caremap.parkinson.org). A complementary workbook, Caring and Coping, came out in 2015 and can be ordered for free at www.parkinson.org/books. Both the website and the workbook focus on the day-to-day aspects of caregiving as well as caring for you. The 21 CareMAP how-to videos are also available in Spanish, at www.caremap.parkinson.org/espanol, to provide practical caregiving tips to the many Spanish-speaking caregivers in the U.S. and around the world who need resources to provide better care for their loved ones and themselves.

Summit Overview

The next level of engagement occurred when the NPF moved to an in-person meeting for caregivers – and the Summit was born, made possible in part through generous support from ACADIA Pharmaceuticals. The Summit program (view it at www.parkinson.org/summit) includes a quote from author Tia Walker: “Caregiving often calls us to lean into love we didn’t know possible.” General sessions focused on how this


manifests as strength, and speakers throughout the day helped participants identify their character strengths and where they can use more support.

A dedicated steering committee of eight experienced Parkinson’s caregivers helped shape the Caregiver Summit agenda and the entire focus of the event. They know firsthand that self-care too often gets pushed aside as the next inevitable PD crisis arises, so they were emphatic that while tips on how to care for the person with PD are always useful, the focus of the Summit should be on the caregiver.

The agenda reflected this focus: morning sessions tackled caregiver identity and how to grow as your own person while facing Parkinson’s with a partner. Speakers brought a mix of humor and gravity to the day, making the Summit equal parts education and inspiration, emotion and practical tools. Throughout the event, people experienced the rollercoaster of emotions that 2012 Texas Poet Laureate and caregiver advocate, Jan Seale, described in her morning talk. There were tears, but there was also much laughter.

Two breakout sessions – “Transitions in Care: How Do I Know When It’s Time?” and “The PD You Can’t See: Dealing with Non-Motor Symptoms” – allowed participants to get in the weeds about practical issues, while the third breakout – “The Caregiver Experience” – provided an intimate setting for reflection and sharing about what caregiving teaches you about yourself and the unexpected gifts you receive in the process. The biggest critique of the Summit was that the breakout sessions – and the Summit itself – needed to be much longer!

Who Was There?

Nearly 170 people packed the room, from 24 states and four countries, and more than 650 people participated online for the live webcast. Caregivers were a mix of spouses and adult children, though the majority of attendees were women. Their loved ones ranged in year of diagnosis from 1983 to 2016, and while most were current caregivers, a few had loved ones who had recently passed away.

What’s Next?

When asked, “What did you find most helpful about

this event?” the overwhelming response was the ability to network with other caregivers and exchange stories and tips. One speaker commented, “I’ve never seen such an immediate, powerful connection, especially in a group that size.” Everyone reveled in being surrounded by others who know what they’re going through, some of them for the first time. They took advantage of bathroom breaks and a long line for the buffet lunch to commiserate, celebrate, and confide in one another.

For participants, the next step is to try to integrate the tools and strategies they picked up at the Summit into their daily lives, from yoga and guided meditation, to tips for getting a good night’s sleep, to how to share the diagnosis with children and more. One participant said, “Before coming to this program I was most interested in finding ‘curative’ or treatments that can make symptoms better. Today helped me realize that this is a marathon and that I/we need tools to help cope with what is ahead.”

In her keynote presentation, Susan Imke, FNP, GNP-C, encouraged attendees to choose “JOLT” – Just One Little Thing – to reframe a situation in a positive light

and make a sustainable change in their lives. This is good advice for everyone: do it now! Identify your signature strengths, and when you feel overwhelmed, think about just how resilient you are. Have you laughed yet today? Have you taken a long, deep breath? These little acts can make a big difference!

The Summit produced a vast amount of content that the National Parkinson Foundation will be sharing with attendees

and the Parkinson’s community. You can already find a lot of it on our website! General session recordings, speaker slides, and links to resources can be found at www.parkinson.org/summit.

We hope to host additional in-person events but will also produce more resources that can be easily shared via support groups, health care centers, and online. There are one million people with Parkinson’s in the U.S., so there are a lot more caregivers out there that we want to reach! And the best way to do so will be to help caregivers make connections and strengthen their networks. Caregivers themselves are the best tools for family caregivers, and there is great strength in the knowledge that you are not alone. v

“Today helped me realize that this is a marathon and that I/we need tools to help cope with what is ahead.”

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