southwest parkinson news - barrow neurological institute · 2017-08-11 · 4 summer 2016 •...

Mindfulness for People with Parkinson’s Disease and their Care Partners By Kathy Melamed, LCSWClinical Communication DirectorHospice of the Valley, Phoenix AZ

I recently had an opportunity to spend time with a group of family care partners for people with varied chronic and life-limiting medical conditions, including Parkinson’s Disease. These individuals came together to share two precious hours each week for six weeks. Their goal was to develop ways to care for themselves so they could better care for their loved ones. They told their stories—and they really listened to each other. They practiced new skills and spoke of what worked well-- and what didn’t --as they made their way through the challenges of keeping an ill loved one safe, comfortable and happy, preserving

relationships that meant everything to them and not losing themselves to the stresses of their situations. They revealed the depth of feelings—pleasant and unpleasant—that are inevitable, especially during an extended period of change, limitations, adjustment, and decline.

Perhaps most striking was the enthusiasm with which they described discoveries about themselves and skills they were learning and sharing with loved ones. The setting was a class on Mindfulness.

Mindfulness, according to Jon Kabat-Zinn, founder of the Center for Mindfulness in Medicine, is “paying attention on purpose, in the present moment, and nonjudgmentally, to the unfolding of experience, moment to moment.” Mindfulness is becoming fully present with your life as you are living it. It is not something you acquire or seek—it is already within you and can be practiced in different ways:

1. Formally—taking time out of each day to intentionally sit, stand, walk, or lie down and to focus on breathing, sounds and other sensations, thoughts and emotions that arise. The formal practice requires a commitment, similar to the commitment to working out or learning an instrument or any other skill. Interestingly, research is showing compelling results from practicing as little as 15-20 minutes/day.

Southwest Parkinson News

InsideCelebrity Fight Night . . . . . . . . . . . . . . . . Page 3Parkinson Art Shows . . . . . . . . . . . . . . . Page 6Balance . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1The 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.

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

“This, like all times, is a very good one if we but know what to do with it.” —Ralph Waldo Emerson

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2 Summer 2016 • Southwest Parkinson News

2. Informally—bringing mindful awareness to daily activities like brushing your teeth, taking a shower, eating, working, exercising, interacting with others. The results include a sense of increased acceptance, enhanced efficiency, preservation of energy and appreciation of the present moment.

Formally and informally, the practice supports moving away from rehashing or reviewing the past. It helps reduce time and effort spent rehearsing or anticipating the future. These are activities that tend to produce very little in the way of positive results. Rather, attention is invited to just breathing. Just for now, noticing and staying in the present moment.

The definitions and tools are simple—but they are not easy. It is challenging to find even a little time for self-care in consistently busy days. The practice requires an attitude of curiosity, patience, and non-judgment. It does not promise the answer to all of life’s difficult questions. Nothing comes from forcing the outcome. It is rather futile to try to ‘make yourself relax’ or ‘make yourself fall asleep.’ Rather, the practice of Mindfulness helps to create a place of stillness where we then ‘let it happen’.

It is not possible to control many issues that confront people with Parkinson’s disease or those who partner with them to provide care. However, it is possible to get better at managing reactions to these issues and events.

Learning and practicing Mindfulness, particularly in a group with like-minded people who share similar

experiences, has proven helpful in many settings. Students recognize their own strengths, discover strategies and personal resources for coping and communicating, explore ways to relax and manage stress adversity and challenges.

Literature on Mindfulness is widely available in popular and scholarly books, magazines and articles. Classes are offered in many medical settings and often in the general community. Guided teachings are accessible on-line.

As our class came to an end, the participants dealing with serious medical conditions shared what they had learned:

They discovered that none of them was really alone.

They found humor—sometimes in the moment, and often in retrospect.

Creating time, if only a little, to focus on themselves— felt good.

Taking some deep breaths and pausing before reacting helps.

They recognized in themselves and in each other the courage, resilience, persistence, and enormous commitment demonstrated every day by those who navigate this journey. Some found time—if only a little—to pat themselves on the back and to savor the rewards of what they are doing.

Inhale. Exhale. Notice. If you are curious, you may want to give it a try. v

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Are you or are any of your family or friends extreme endurance sport athletes?

If so, ask them to join this year’s National Parkinson Foundation’s Team Hope™ Arizona event: the IRONMAN ® 70.3 ® in Tempe on October 16, 2016.

As a member of Team Hope™, participants will swim, bike and run 70.3 miles to raise funds and awareness while joining your fight for Parkinson Disease.

For more information please contact Sara Teeter at [email protected] or 305-537-9951.

3Summer 2016 • Southwest Parkinson News

Stars Shine Brightest in the Southwest Celebrity Fight Night Returns for 22nd Encore Performance

The stars aligned once again in Phoenix this spring, shining brighter than any other night of the year. Celebrity Fight Night returned to the Valley, April 9, bringing an entourage of award-winning singers, entertainers and professional athletes together for one of the nation’s most scintillating fundraising events.

The stellar line-up included returning-emcee and Grammy Award-winning Reba McEntire, who shared the spotlight with the evening’s musical director David Foster and a number of headlining acts, including country music duo Brooks & Dunn, comedian-actor Sinbad and Canada’s most popular vocal quartet—The Tenors. Culminating the evening was a performance by singer, songwriter, actress and two-time winner of the Academy of Country Music’s Entertainer of the Year Award, Carrie Underwood.

Celebrity Fight Night was founded in 1994 by Jimmy Walker in collaboration with Abraham Lieberman, MD, and Lonnie and Muhammad Ali, all of whom contributed to the development of the Muhammad Ali Parkinson Center at Barrow Neurological Institute. Under Dr. Lieberman’s leadership, the center has evolved into a National Parkinson Center of Excellence, offering comprehensive treatments for Parkinson’s and movement disorders along with recreational and support networks for patients and family members.

Celebrity Fight Night has raised more than $118 million for charitable organizations since its inception and has donated more than $26 million to the continued development of the Muhammad Ali Parkinson Center. The center is now under the directorship of Holly Shill, MD, who completed a fellowship in movement disorders at Barrow, a clinical fellowship studying movement disorders at the National Institutes of Health, and several years of clinical practice in Phoenix before returning to Barrow in her new role.

The Muhammad Ali Parkinson Center treats more than 10,000 patients annually and performs more deep brain stimulation surgeries than any other facility in the nation. Its namesake—the world-renowned fighter Muhammad Ali—made a rare appearance at this year’s Celebrity Fight Night, drawing admiration and praise for his indomitable spirit in the fight against Parkinson’s disease.


Brain Storms:A Race to Unlock the Mysteries of Parkinson’s DiseaseBy Jon Palfreman

A Book Review by Donald PenfieldThree years ago, when I was finally diagnosed with Parkinson’s disease (PD), I began reading everything that I could get my hands on that would shed any kind of light on this subject that was so foreign to me. Internet searches were prolific during my early days of discovery. I was introduced to Palfreman’s book right after it was published in the summer of 2015. When I finally obtained a copy, this book was a real page turner for me. So, let me tell you right up front that this is the book to read not only for a person newly diagnosed with PD, but also for a “seasoned veteran” in the battle with PD. Palfreman writes his material in a very readable and comprehensible style.

He shares with the reader both the personal stories of people with Parkinson’s (including himself) and the medical science side of the search for the causes and ultimately the cure of this disease. He introduces us to others in history who have exhibited the classic symptoms of PD - an old king in 12th century B.C. Egypt, Lord Say in Shakespeare’s Henry VI, Part 2, and seven million people worldwide today, including such notable figures as actor Michael J. Fox, boxer Muhammad Ali, and evangelist Billy Graham. With respect to research into the cause and treatments of PD, we first meet James Parkinson, who wrote Essay on the Shaking Palsy in 1817. We also become acquainted with what Palfreman describes as “a reason to hope” when in 1968 a neuroscientist named Roger Duvoisin began experimenting with a new medicine called levodopa. Throughout the remainder of Brain Storms, Palfreman delves into the myriad paths of research that have, even with many missteps and dead ends, resulted in many encouraging outcomes that continue to give us hope.

Finally, allow me to share with you a couple of notable quotes from Palfreman’s book that spoke to me personally. I have always said that one must have a good sense of humor to have PD. Brian Grant, former NBA player, is reported to have said “lose the vanity, because when you have this disease, you better learn how to laugh at it.” When I first started reading Brain Storms, I had just attended a support group meeting in which we were trying to quantify measurable outcomes of exercise and therapies in order to justify program budget requests. One of the participants asked “but how do we measure hope?” Palfreman twice quoted Tom Isaac, who along with several others founded Cure Parkinson’s Trust in England, as saying “if you don’t have hope in Parkinson’s disease, you don’t have anything.”

My advice? Get this book. Read this book. Share this book. And live with hope, my friends.


A little over a year ago, at 29 years old, I was diagnosed with Parkinson’s disease. I received my diagnosis after a couple of visits / tests with my neurologist. He did not want to label me since I am so young and PD is not apparent in me at all. I was blank when he first told me. Although it was in the beginning stage, it was in fact PD. I knew what PD looked like from my family members and I had suspected it, but never really convinced myself until this point. With tears in my eyes, my neurologist explained how he came up with the diagnosis, the medication I would take and why. He also told me that he thought and hoped that my PD would progress very slowly.

The following couple of months after my diagnosis I researched PD online almost daily. I became overwhelmed as you can imagine with so much information! I decided I would only look for trusted sites and also get informed in person. This is how I got to the Muhammad Ali Parkinson Center. I saw that they offered a class for the newly diagnosed. I met Patty Hatton for a one on one session. Patty was excellent in explaining to me that I would not be like my grandfather and that the Parkinson’s he had was not mine. Since I am Hispanic and fluent in Spanish Patty also introduced me to Claudia Martinez, MAPC Hispanic Outreach Coordinator, that same day.

Just a couple of weeks after my first visit to the center I became a certified volunteer. Claudia told me she needed someone like me who had Young Onset Parkinson’s Disease (YOPD) and was motivated- and I knew I needed someone like her. The center has motivated me tremendously to become involved and has given me the opportunity to help while helping myself. I have participated in the educational classes on PD, painting and boxing classes, and the support group (Comadres y Compadres). I also participate and help with most of the MAPC community events.

I now consider the people at the center (staff, patients and families) as my second family. It is great to have a group of people in your life that are in the same fight as you and working toward a better quality of life. This year I have learned that it is best to have the least amount of stress in my life as possible since my symptoms worsen with it. I have also learned that there are good and bad days and that it is okay to have a bad day- as long as I give it my all the next day to make it a good or better one than the day before.

During this past year I have done things that I can humbly say I am proud of. In September I was one of twenty five women selected to take part in the first Parkinson Disease Foundation’s (PDF) Women and PD Conference in New Jersey. I met ladies from all over the US- all with PD and advocating for themselves and others. In February I co-captained team Somos Amigos / We are Friends for the annual MAPC Walk the Fight and Run the Distance. I also went to Washington, DC with the Parkinson Action Network. I spent three days with about 200 advocates learning about the advances in PD and went to Capitol Hill to ask our congressman to support PD research. Claudia and I were accepted into the PDF’s

SELF Leader Training, a 3-day meeting designed to train teams like ours (someone with PD and a PD professional) to deliver the PD SELF (Self-Efficacy Learning Forum) program to people newly diagnosed with PD.

The best advice I can give someone newly diagnosed with PD is to become involved, to be your own best advocate, to become the CEO of your health. No one can advocate for you better than yourself. Don’t lose yourself, don’t forget about the person you were before PD- you are still the same person!

Spotlight on Alejandra Borunda

Alejandra Borunda


This year’s 9th Annual Bruce Florence Parkinson’s Juried Art Exhibition took full advantage of Parkinson Awareness month this past April with its opening reception on Friday, April 1st. This year’s show was particularly eye opening as it was accompanied by a striking exhibit This is Parkinson’s, by Norwegian photographer and PD advocate Anders M. Leines.

Leines is on a mission to give the age old image of Parkinson’s disease a total makeover. Through his photographs of people diagnosed with PD at a young age like himself, he hopes to raise awareness of the young onset and present a different image of Parkinson’s, a vast contrast from the stereotypic image of primarily the elderly and debilitated, shuffling and stooped over. The people in the pictures look young, strong and healthy, not anything like the stereotype. And each individual tells a powerful story of their personal struggles that you cannot see in the photographs. They are fighting a courageous battle and doing their absolute best to manage the long journey ahead, like all young onset and their families. This is Parkinson’s exhibit will travel to other U.S. cities while making its way to the World Parkinson Congress in Portland this September. It was an honor to share the MAPC annual art show with Leines’ impressive, thought provoking and memorable work.

The MAPC’s Voces Unidos, the nation’s only Hispanic choir for people with PD, performed during the awards portion of the reception. A crowd favorite was the Voces Unidos performance of their new original Parkinsong - “I am the Beat of Another Song.” The song and its accompanying video depict the courageous struggles of living with PD, balanced by a positive and hopeful message on embracing an active, social lifestyle to live the best life possible. The MAPC is grateful to musician Jose Maria Lobo for his talented songwriting and for telling the Parkinson story with music and passion.

Now, on to this year’s winners! The juried art show is open to anyone with Parkinson disease and their caregivers residing in Arizona. Only people with PD are eligible for the top awards, all artists are eligible for honorable mentions. With over 80 entries, you can imagine how difficult it was for the judges to narrow the field to the top three awards and honorable mentions.

The Parkinson art exhibits were made possible by so many terrific volunteers and community members, we thank you all. The MAPC would like to especially thank Leines M. Anders for his remarkable work and for lending his exhibition to the Phoenix community; The World Parkinson Coalition for sponsorship and Jean Burns for her vision and assistance in securing the show here in Phoenix; and artist Alan Fitzgerald for hanging This is Parkinson’s. We are also grateful for artist Gregory Pearce, our talented and loyal art instructor who along with teaching the MAPC PD expressive art classes, he voluntarily organizes and tediously hangs the MAPC show every year. And lastly, thank you to the Parkinson Network of Arizona, a volunteer board that raises awareness of PD along with funds to support the mission and outreach programs at the Muhammad Ali Parkinson Center’s Community Outreach and Wellness Center for whom the MAPC expressive arts program would not be possible.

Congratulationsto this year’s winners:

1st Place:Linda Bielek “ Four Oranges”

2nd Place:David Gibson “One Size”

3rd Place:Marina Griggs “Dancing in the Rain”

Honorable Mentions Bonnie K. Jewett “Abstract-Electric”

Johnnie Geoghan “Can you see it”Tony Vehr “Study in Colors”

Timothy Nikolaus “Untitled”Roy Pat Perkins “War Eagle”

Elaine Wilcox “Watching Coyote”Vicky Coxon “Arabian Horse”Marvin Seiger “Le Pont Neuf ”

Judy Dugan “Worship”John Reisik “Fall Folliage”

Parkinson Art Shows Inspire and Raises Awareness of Parkinson’s Disease


Wellness Exercise Classes

Avondale / Litchfield Park / Goodyear

Art of Moving Thursdays, 10 -11 am, thru July 28Skyway Church of the West Valley14900 W. Van Buren, Goodyear

Parkinson’s DanceMondays, 1:00-2:15 pm Please call for datesSteppin’ Out Performing Arts13331 W. Indian School Rd #208 B Litchfield Park (Osborn & Indian School) Fountain Hills

Art of Moving 9 - 10 am; PWR!Moves™ 10 - 11 am Fridays, thru May 27Fountain Hills Senior Center13001 N. La Montana

Phoenix

Dance for Parkinson’sWednesdays, 11 am -12:15 pmBallet Arizona2835 E. Washington St.Contact: Debbie Braganza at 602-381-0188 or balletaz.org

The remainder of classes in Phoenix listed below are held at the MAPC Community Outreach and Wellness Center240 W. Thomas Rd., Suite 302

Knock Out PD Boxing ClassesAll Boxing classes start on May 10th and end June 22ndPD1: Tuesdays, 9:30-10:30PD3: Tuesdays, 4:15-5:15PD1: Tuesday, 5:30-6:30PD2: Wednesdays, 9:30-10:30

Music and Movement: Neurologic Music TherapyMondays, 2:30-3:30 pm; thru Aug 8

Voice ClassesTuesdays, 1:00-2:00 pm; thru Aug 9Wednesdays, 1:15 - 2:15 pm; thru Aug 10

PWR!Moves™Mondays, 10:30-11:30 am; thru Aug 8Tuesdays, 11am-12 pm; thru Aug 9Wednesday, 11 am-12 pm; thru Aug 10Thursdays, 5:30- 6:30 pm; thru Aug 11

PWRCircuit™Friday, 11am-12 pm; thru Aug 12

Art of MovingTuesdays, 2:15-3:15pm; thru Aug 9Thursdays, 1:00-2:00pm; thru Aug 11 Tai Chi Wednesdays, 2:30-3:30 pm; thru Aug 10

Yoga for Everybody, Mind and SoulMondays, 1:00- 2:00 pm;thru Aug 7 *mat/floor work class*Thursdays, 2:00-3:00 pm; thru Aug 11

Beading Workshop3rd Friday of the month from 1:30-3:00 pm; May 20, June 17, July 15, Aug 15

Scottsdale

Tai ChiMondays, 2:30-3:30 pm; thru July 25Elizabeth Keith Movement Education16620 N. 40th St, Suite D-5 (40th St. south of Bell in PV)

Art of Moving Tuesdays, 9:30-10:30 am; thru July 26Elizabeth Keith Movement Education (see above)

Summer 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.


Summer 2016 Recreation and Education cont.

Parkinson’s DanceThursdays, 11:30 am-12:45 pm; thru July 28Elizabeth Keith Movement Education (see above)

Yoga for Everybody, Mind and Soul!Mondays, 2 - 3 pm; thru July 25Assumption Greek Orthodox Church – Community Room8202 E. Cactus Road

Sun Cities

Art of MovingMondays, 10:15-11:15 am; thru July25Shepherd of the Hills United Methodist Church13658 Meeker Blvd, Sun City West (Meeker & RH Johnson)

Sun Lakes

Art of MovingMondays, 10:30- 11: 30 am; thru July 25Sun 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 orMarian McConnell at (623) 297- 2608

Education

Education Session for those Newly Diagnosed with Parkinson’s Disease2nd Thursday of each month, 1:30-3:30 pmMuhammad Ali Parkinson Center240 W. Thomas Road Suite 302 Phoenix, AZ 85013Registration: Nancy Bivins, LMSW 602-406-4266


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

Summer 2016 Support Group Calendar

Specialty Groups

Young Onset Wellness Group For those aged 30-50’sMonthly Meetings/OutingsContact 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(NOT meeting in June or August)

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(NOT meeting in August)

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(2:30-3:30 Caregiver breakout group)(NOT meeting in August)

Fellowship Square35 W. Brown Rd, Mesa, AZ1st Wednesday of the month, 1:30-3:00 pmContact Debbie Harwood at Fellowship Square 480-290-7950(NOT meeting in June or August)

Scottsdale

Desert Mission United Methodist Church7373 E Dixileta, Scottsdale, AZ1st Thursday of the month, 10:30-NoonContact Marilyn Ware 480-488-8538(NOT meeting in July or August)

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(NOT meeting in August)

HealthSouth Rehabilitation HospitalCaregiver Support Group (for caregivers only) 9630 East Shea Blvd., Scottsdale, AZ 852604th Friday of the month, 10:00am- Noon Contact Hollie Green at 602-396-9372(NOT meeting in August)

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(NOT meeting in August)

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(NOT meeting in August)

Summer 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(NOT meeting in August)

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 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(NOT meeting in June or August)

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 CenterOutpatient 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


BalanceBy The Team from the PWR! Gym in Tucson

At the PWR! Gym, every one of our members is encouraged to exercise vigorously throughout their week. But we also want our clients to be safe, especially if balance is an issue. Studies show that even at diagnosis with PD, balance is compromised. People with PD are twice as likely to fall as people with other neurological conditions. Group classes can be a challenge, particularly when it comes to pushing our clients’ agility, strength, and balance.

A recent article published in the American Physical Therapy Journal (Schlenstedt et al., 2016), compared a variety of balance assessments and extracted from the data which items were the best at predicting falls in Parkinson’s disease. This information forces us to examine the way we treat our clients and structure group classes.

TAKE HOME MESSAGE from the RESEARCH: Therapists and group instructors may need to challenge both voluntary (self-initiated) and reactive (response to external forces) types of balance training activities.

Group fitness classes may help more with the voluntary training, like stepping over an obstacle. A physical therapist may help more with a personalized skill training program that safely targets the reactive or unpredictable components of balance, like giving you a tug backward when you are not expecting it. Either way, the goal is that you recover your balance with faster and bigger whole body (trunk and stepping) movements.

It is important to recognize how to prevent and/or reduce your fall risk. Physical therapists can assess your balance and develop a program to specifically target your particular risk factors. New research continues to emerge that can assist us in predicting falls in people with Parkinson’s, so that therapy and group exercise classes may be proactive about the type of strength & balance training we perform BEFORE any falls occur.PWR! UP

For an example of Multidirectional Stepping visit our website: www.pwr4life.org Or, schedule an appointment with our physical therapist for a balance program.

An example of an exercise that can target many of these skills necessary for balance is: Multidirectional Stepping

VOLUNTARY TRAINING*TIP: Be sure to shift your weight onto the stepping leg, rather than toe touch.

• Step Right leg forward 10X and open arms wide; Step Left leg forward 10X and open arms wide. Did you do it with FAST & LARGE STEPS?

• Step Right leg to the side 10X and open arms wide; Step Left leg to the side 10X. Again, think FAST & LARGE STEPS.

• Step Right leg back and reach both arms forward. Do that 10X. Step Left Leg Back and reach both arms forward. Do that 10X.

REACTIVE TRAINING• Pace with a metronome faster (50BPM) and slower (40BPM). • Add something to step over (rolled towel or yoga block).• Step while someone calls it out to you or follow a new sequence written on a piece of paper on the

wall in front of you.


By Nancy Bivins, LMSW

As we all know there are many responsibilities that must be fulfilled in order for life to run smoothly. Even in the family unit, different people perform specific tasks. Generally one assumes a responsibility because it suits his abilities, however, even when no one feels inclined, if the task is necessary, it has to be assumed by someone.

In the course of a chronic illness, like Parkinson’s disease, there will be responsibilities that must be shifted from the person living with Parkinson’s disease to her loved one. Initially, these jobs will be easily absorbed, but as additional responsibilities are shifted to the caregiver, it becomes an ever increasing challenge.

Each one of us has 24 hours every day. Let’s picture that 24 hours as a bucket. It is not possible to get a bigger bucket, neither is it possible to get a smaller one. Everyone’s bucket looks the same and holds the ever consistent, unchangeable 24 hours. Each hour moves at the same pace and at the end of the day, all 24-hours are completely consumed. Since hours cannot be banked for use at a later time, there is no carry-over to the next day, month, or year. Also, the bucket is made of inflexible material, meaning that it does not expand when extra time would be helpful or an additional task needs completion. However, many caregivers are laboring under the assumption that no matter how much they put into their buckets nothing will ever fall out. Somehow everything will fit and be secure! They are unaware that the car payment fell out three days ago, the dry cleaning is about to donated to a homeless shelter and their annual physical is 3 years overdue! Important items can be missed when demands far out-weigh the abilities of one person! Time management and efficiency can only take a person so far.

Another false assumption, common among caregivers, is that when there is not enough time for sleep, relaxation, and fun, it’s not a problem, because these things really are not all that important. The thinking is that these activities are only fluff, if it happens, fine and if it doesn’t, it’s acceptable. However, the truth is that no matter how tightly a person’s bucket is packed, there is always room for irritability, anger, fatigue, illness, and depression, just to name a few. When sleep is fragmented, and/or limited, and there is no time to relax, the consequences are far reaching as noted in the previous list.

However, I do have some good news! Caregivers are not the only ones with 24-hour buckets. Other people have the same buckets and it is possible that theirs is not as full as yours! Family and friends may have hours available to share with you. The use of their hours on your behalf would allow you to shift some of your responsibilities to them. One idea would be to ask each of four friends to provide a dinner for you once a month. That would mean that four times every month you would know that you would not have to prepare a meal. That time could then be spent enjoying an activity that you find relaxing and refreshing!

Another way friends or family members could help would be for them to take your loved one out to lunch, a ballgame, the park, or the mall. Similar to asking help with meals, perhaps four friends/family members would be willing to visit at your home or accompany your loved one on an outing once per month which would allow you time to refresh and replenish. The more people you can involve, the better, and the less frequently any one person will be called upon.

It is also beneficial to work into your daily routine, minutes to relax and rest. Activities might include going outside for 20 minutes to watch a sunrise or sunset. This allows you the opportunity to breathe slowly while taking in a beautiful sight. Eating outside can make an otherwise predictable meal a bit of an adventure. A cup of tea or coffee with a crossword puzzle or a book of jokes can be a short refreshing break. Variety added to your everyday activities can make the mundane more pleasurable.

If family or friends are not available to provide respite care or other assistance, you may want to consider hiring help. There are many fine agencies that employ personal caregivers who are ready to provide assistance in many different ways. The kinds of services that they offer are personal care (bathing, dressing, grooming), light housekeeping, meal preparation, transportation, and respite care. You may choose the services that will be the most beneficial to you and your loved one. Caregivers can take your loved one on a personal outing or can assist with household responsibilities or provide companionship at home. The plan is totally up to you and your loved one.

It is possible that at this point in your life this article may not apply to you. You may have found very little to which you could relate. But I would encourage you to begin now

Caregiver Corner

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Caregiver CornerContinued from previous page

to cultivate an interest, hobby, class, or group that you find challenging and fulfilling. You may try an activity and decide that it’s not for you, but in that process you will have learned something about yourself. Also, it may be that if you make minimal adjustments you will have something that you can thoroughly enjoy. Broadening one’s horizon is a very good thing and engaging in an activity that is source of pleasure adds life to your living.

Did you read the article on Mindfulness? If not, please do, because Mindfulness is also a great tool for being proactive for your own health and well-being. The responsibility for your health is yours alone. You are the only one who really knows how you are feeling physically, mentally, and emotionally and that knowledge makes you your own best advocate. Please, relax and enjoy times of refreshing! v

Parkinson Network of Arizona (PNA)By Melanie Wright, President

Once again, summer is upon the Arizona population. This also brings a season of renewed efforts in the battle against Parkinson’s Disease in order to prepare for 2017. The early portion of 2016 has already proven to be a wonderful beginning to a new year, with the successful outcome of both the “10th Annual Walk the Fight/Run the Distance” event at Tempe Beach Park (2/6/16) and the “Delbert Johnson Celebrity Golf Tournament” (4/16/16). Each of these two signature events, sponsored by the Parkinson Network of Arizona (PNA), demonstrated the growing commitment of the public to join us in our journey.

PNA also continues to grow within the social media realm to raise awareness in an ever-growing digital market, which enhances our reach and touches thousands more individuals each year. We have grown leaps and bounds in a short period of time with our online community and continue to share the vision of advocacy and outreach. As always, we are pleased to continue in our support of the Muhammad Ali Parkinson Center, as they are pivotal in changing lives on a daily basis through outreach, education, and showing those diagnosed with Parkinson’s that there are alternatives to managing a life altering disease.

I urge each of you to continue your support of the Parkinson Network of Arizona and regularly visit our website, which offers an ever-changing collection of information and resources: www.parkinsonnetworkaz.org. In conclusion, I would like to thank our community for allowing PNA to remain a continued and rising ally in the fight against this disease and for allowing us to serve you. It is with each stride forward, that the past becomes a stepping stone towards a brighter future.


7th Annual Baehr ChallengeBy Maryellen Federico

A Spectacular day - for Everyone! A challenge for both our bodies and minds! Can I do this again, I asked myself ? This would be my third time and I recalled how great it was and how much fun we all had .... The high I felt as my confidence soared.

I also know I am a bit slower, even though I get a lot of support and encouragement from family and friends. I remembered the course - would it be the same or more difficult? I started playing it over in my mind.

My daughter in LA didn’t hesitate a moment when I told her this year’s date. She and my son-in-law came from California and joined us to share in the action just as they had the last two years. This has become a very special tradition!

We began the morning by checking out the obstacle route. I had decided I most likely would just keep it easy and safe, and walk around most of the obstacles. However, as we were in line at the starting gate waiting to take off, the excitement built. All of us holding hands- these were special moments together.

Then, as we began I heard the joyous shouts and applause. I let go of any concerns and reveled in taking part in most of the obstacles, along with my special PD friends, caregivers and families I’ve met these last three years. As I looked around everyone was smiling, cheering and laughing. My confidence came back as we went in and out of the “tires” field, walked on moving bridges, got a little (or a lot) wet while crawling on the ground...the people with squirt guns were having even more fun. Everyone was helping each other out. Clambering up and crawling and squeezing through the inflated bounce house to climb up the slightly swaying ladder to slide down to get out. Then finally the highlight of the day - scrambling up the haystack mountain for a group picture.

Spirits abounded, confidence was high. Will I do it again next year? You bet! Fun was had by all! Come join us!

The Baehr Challenge, LTD is an Arizona 501(c)3 organization that creates awareness regarding fitness as a treatment for Parkinson’s disease while funding scientific research for improved treatments and a cure. For more information, please got to: http://baehrchallenge.org

Clinical Trials at the Muhammad Ali Parkinson Center

This 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 601-406-4206Sanja Obradov, Clinical Research Specialist at 602-406-3719

By Gay Samuelson

Over the last forty years, mindfulness has been the subject of much research. Though it has its roots in Buddhist meditation, a secular practice of mindfulness has entered the American consciousness in recent years. Jon Kabat-Zinn developed Mindfulness-Based Stress Reduction (MBSR) program at the University of Massachusetts Medical School in 1979. Thousands of studies have documented the physical and mental health benefits of mindfulness in general and MBSR in particular. There are countless relevant clinical trials demonstrating the efficacy of Mindfulness Based Training in the literature. We will review but a few of these trials in the following bullets:

• MBSR significantly lessened time to clear psoriasis with p values of 0.33 when combined with ultraviolet therapy or photochemical therapy. Psychosomatic Medicine 60:625-632 (1998)

• MBSR treatment of nurses in burnout showed reduced scores on 2 of 3 subscales of the Maslach Burnout Inventory. Holist Nurs. Pract. 2005: 19(1):26-35

• MBSR as supportive therapy in cancer care demonstrated a clinically valuable self-administered intervention. Journal of Advanced Nursing, 2005: 52(3):315-327. Definitive version at: www.blackwell-synergy.com

• Alterations in brain and immune function produced by Mindfulness Meditation were demonstrated in patients using electrical testing of the brain and measurement of antibody titers after injection of influenza vaccine. Psychosomatic Medicine, 2003, 65:564-570

• A summary of results in Integrative Cancer Therapies, 2006, 5(2):98-108, looked at 9 research articles in peer reviewed journals that showed improvements in psychological and physiological (immunological and neuroendocrine) functioning in cancer patients who received mindfulness interventions compared to controls.

• MBSR and massage appear promising for the treatment of chronic musculoskeletal pain. Journal of General Internal Medicine, 2005, 20(12):1136-1138.

• MBRP (Mindfulness Based Relapse Prevention) has been used as aftercare for treatment of substance abuse disorders and provides preliminary support for the theoretical framework behind mindfulness meditation

as a therapy for addictive behaviors. Subst. Abus. 2009, 30(4):295-305.

• MBCT (Mindfulness Based Cognitive Therapy) halved the rates of relapse and recurrence of depression in patients with 3 or more previous episodes promising a cost effective approach. Journal of Consulting and Clinical Psychology, 2000, Vol. 68, No. 4, 615-623.

Research as summarized in the following referenced scholarly publication representing 52 different research studies (http://greatergood.berkeley.edu/topic/mindfulness/definition), suggests that people are better able to regulate their sense of well-being by virtue of greater emotional awareness, understanding, acceptance and the ability to correct or repair unpleasant mood states. Three key elements of mindfulness are:

1. The ability to skillfully regulate one’s internal emotional experience in the present moment may translate into good mental health long-term.

2. The ability to recognize and accurately label emotions.3. Having more refined self-awareness.

One recent functional magnetic resonance imaging study found that after 8 weeks of mindfulness meditation training, there was statistically relevant evidence of greater neural activity in the dorso and medial prefrontal cortex of the brain. In addition, those individuals with the largest shifts in frontal brain activity also had the strongest antibody responses to a flu vaccine. Also, enhanced immune response, reduced stress hormone cortisol and pro-inflammatory cytokine levels were observed in patients with cancers such as breast cancer and prostate cancer (as measured by increased natural killer cell activity).

There is increasing scientific evidence to support the therapeutic effect of mindfulness meditation training on stress-related medical conditions including psoriasis, fibromyalgia, rheumatoid arthritis, chronic low back pain and attention-deficit hyperactivity disorder. In addition, research has consistently shown that mindfulness training reduces symptoms of stress and negative mood states and increases emotional well-being and quality of life among persons with chronic illness.

Taken together, all these experimental studies indicate that mindfulness practices may promote health, in part, by attenuating stress reactivity and stimulating parasympathetic tone.

Research Studies that Validates Mindfulness Intervention


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southwest parkinson news - barrow neurological institute · 2017-08-11 · 4 summer 2016 •...

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