A Publication of the Northwest Parkinson’s Foundation | SUMMER 2014

Our mission is to

establish an optimal

quality of life for the

Northwest Parkinson’s

community through

awareness, education,

advocacy and care.

nwpf.org

The Parkinson’s Post is published by the Northwest Parkinson’s Foundation, a 501(c)(3) charitable organization. © Northwest Parkinson’s Foundation 2014. Permission for use of most material presented here is available by contacting us. We welcome your comments on all our activities. Call 877.980.7500 or visit us at nwpf.org.

Engaging Lives One Phone Call at a TimeBY SCOTT JOHNSON

NWPF Contributor

Maria Cole comes from selfless stock. Helping others, she says, has been in-grained in her since a very young age.

“Ninety-five percent of the women in my family are nurses,” she says. “I never wanted to deal with blood and guts, so I steered away

from nursing. But I always wanted to help people in some way.”

Her journey led the native Chicagoan to the Northwest Parkinson’s Foundation, where since early 2014 she has been serving as the gateway to helping people diagnosed with Parkinson’s disease in the 5 state Northwest region - Alaska, Idaho, Montana, Oregon and Washington - wade through all of the uncertainty and fear. A trained social worker who has a background in senior care, mental health and substance abuse, Cole has spent most of her adult life putting the needs of others ahead of her own.

But to hear Cole describe her career, there is a “selfish component” to what she does.

“When I have a hand in helping someone figure something out, and in helping them through the process,” she says, “I feel great.”

As Social Services Manager at NWPF, Cole spends most of her time answering questions. People recently diagnosed with Parkinson’s have all sorts of inquiries about what to do next, what to expect to happen physically, how to cope emotionally and financially, how the disease will affect their relationships, how to communicate

with an employer, and on and on and on. Cole helps them through the process, one step at a time.

“People need help sorting stuff out,” she says. “I’m not a miracle worker, by any means. But I have the patience and the information to help them prioritize.”

Cole spends two days a week at the Booth Gardner Parkinson’s Care Center at Evergreen Hospital in Kirkland and the rest of her work week at the NWPF office near Seattle Center. She sees herself as a complimentary part of the team that helps a person cope with the disease. Doctors, nurses and therapists can help a Parkinson’s suf-ferer deal with the physical aspects of the disease, while a social services manager is there to assist in navigating through the emotional effects and the details of everyday life. Cole helps those who have been recently diagnosed connect with others via PD Link Northwest and working with support group facilitators.

“It can be a really overwhelming thing for peo-ple,” Cole says. “It can help to have someone break things down into bite-size pieces.”

In her six months at the position, Cole has helped make the transition easier for patients and has taken a lot from the experience.

“I’ve heard some really amazing stories from older adults who are able to live really full, rich lives regardless of their circumstances,” she says. “Peo-ple are strong. People are resilient. That’s the thing I’ve learned the most.

“It’s pretty amazing. People get a lot thrown at them, and they can still make life happen on their terms. That’s inspir-ing for me. It makes my work a lot more enjoyable.”

In many ways, the “selfish component” is what makes Cole’s selfless work such a joy.

INSIDE

The ED Corner 2

Caregiver Burnout: Write it

Down! 3

Team Parkinson’s 5

Tribute Gifts 6

HOPE for Parkinson’s Registration

(see page 3 & 4)

Board of Directors

Elizabeth Bacher

Lisa Bain

Steve Boone

Holly Chaimov

Amy Cole, RN

Dave Covey

Karen A. Hadley

Richard Hadley

Sheryl Harmon

Kerry Hovenkotter

Marty Hovenkotter

Larry Jacobson

Paula Lehmann

Jack Nettleton

David Newsom

Clare Nordquist

Mark Palek

Jonathan Poneman

Matt Ramerman

Mike Reed

Judi Sloan

Iam Smethurst

Sindhu Srivatsal

William Wurts

Directors Emeritus

Gov. Daniel J. Evans

Nancy Evans

Gov. Booth Gardner

(deceased)

Hal Newsom

Priscilla Tanase

Medical Advisory Council

Farrokh Farrokhi, MD

Monique Giroux, MD

Executive Director

Steve Wright, MPA

Finance Director

Virgil Sweeney

Development Director

Anne Alkema

Program Director

Melissa Tribelhorn, MPA

Social Services Manager

Maria Cole, MSW, LSWAA

Communications &

Marketing Manager

Rebecca Mauldin, MPA

| SUMMER 2014 | page 2

It has been an incredible summer so far here in the Pacific Northwest - sunshine, several Parkinson’s programs, Team Parkinson’s - Walk in the Park and the Seattle-to-Portland Bicy-cle Classic, and now one of the most exciting opportunities of the year to Move, Connect & Engage is coming to Tacoma on August 16.

The Northwest Parkinson’s Foundation is proud and honored to serve as the local presenting sponsor of the Partners in Parkin-son’s conference - a collaboration between the Michael J. Fox Foundation, AbbVie pharmaceu-ticals and Northwest Parkinson’s Foundation.

The overall approach of this conference is interconnectedness with patient panels, mock appointments and discussion groups. If you’ve ever wondered how to ask your doctor about

your symptoms or the progression of your PD, this conference will provide direct insights and highlight techniques to get your questions answered at your next appointment.

Moreover, you’ll hear directly from some of the Michael J. Fox Foundation’s top research-ers and clinicians on the state of PD research and potential new therapies.

Please join me on August 16; this will surely be one superb day of Moving, Connecting & Engaging. Sign-up online today, space is limited.

More information on the conference and how to register can be found on the full page insert included with this Parkinson’s Post.

The ED Corner STEVE WRIGHT

Caregiver Burnout: Write it Down!BY MONIQUE GIROUX, MDNWPF Medical Advisory Council Member

Caregiver burnout reflects a change in attitude about and toward your loved one and situation. For many, care-giver burnout is caused by emotional and physical stress that is associated with the toll caregiving can place on fi-nances, social engagement and physical health. Common symptoms of burnout are fatigue, anxiety, depression, irri-tability, insomnia and guilt. You may find that your outlook or behavior changes from one of caring and supportive to one that is negative, easily frustrated or angered.

Simple steps can make a difference Medical research finds that keeping a journal can help. This technique is ideal be-cause it places little additional stress on you- it is free, easy to do anywhere, requires no real preparation and takes just a few minutes. Journaling is a way to identify your feelings, reflect on your routine, un-expected moments of joy or gratitude and personal needs.

What is involved with Journaling? Keeping a journal means that you will write (or record) a daily record of your experience. It is different than a diary that focuses on daily activities or what you did for the day. This is an important part of journaling but journaling includes much more. For instance, it is an opportunity to express your emotions, how you feel about a change, your wishes, desires and hopes. For some it is a reflection of their internal dialogue or thoughts put on paper.

How can it help? Journaling is: • Time to Focus. Organizing our thoughts, events, priorities and expectations helps us focus and reach our goals. • Time to ourselves. Think of this time as ‘your quality time’. Time to think about what is important to you, your wants, desires, successes, disappointments, fears and struggles. • Time for self-exploration and introspective. As author Donna Oiland states in her book titled Legacy, “Life expe-riences connect us to one another…The most meaningful

Continued on page 4

HOPE Conference on Parkinson’sThe Northwest Parkinson’s Foundation and the American Parkinson Disease Association, Washington Chapter present an educational symposium focusing on Hope and Wellness for patients, family, friends and caregivers.

Saturday, November 1, 2014

For more information visit www.pdhope.org

or call 877.980.7500 or 206.277.5516

SPEAKERS

KEYNOTE: Tim Hague Sr.Motivational Speaker, Parkinson’s Advocate

Winner of the inagural season of The Amazing Race Canada

Laurie Mischley, ND, MPHNatropathic Doctor, Seattle Integrative Medicine

Clinical Research Assistant Professor, Bastyr University

Bartja Wachtel, MSW, LICSW, MHP, CMHSClinical Social Worker

Virginia Mason Medical Center

And More!

CONFERENCE DETAILS

Date | Time: Saturday, November 1, 2014 | 9:00am – 3:00pm

Check in begins at: 8:30 am

Where: Meydenbauer Center, 11100 NE 6th Street, Bellevue, WA 98004

• Free parking is available in the Conference Center garage and designated parking facilities only.

• Drop-off accessibility is at the Conference Center main entrance on NE 6th Street.

The 2014 HOPE Conference will offer information on medications, treatments, diet, mindfulness and movement for patients & families.

Exhibitors will include a variety of organizations and companies sharing information and resources for people with Parkinson’s disease and their care providers. Additional exhibits will feature information on Parkinson’s medications, research, treatments and care options.

If you are unable to afford the conference fee, please let us know on the registration form that is on the next page. Scholarship requests will be reviewed for approval.

Register online at pdhope.org or call toll-free 1.877.980.7500 or complete and mail this portion of the page to:

Northwest Parkinson’s Foundation, Attn: Conference Office400 Mercer Street, Ste. 502, Seattle, WA 98109-4641

ATTENDEE INFORMATIONPlease supply the name of each attendee. This form may be copied for

additional attendees.

Attendee 1: Mr. Ms.

I am a: Patient Caregiver Family Friend

Attendee 2: Mr. Ms.

I am a: Patient Caregiver Family Friend

Address

City State Zip

Telephone

Email address

(for your registration confirmation)

LUNCHEON ENTRÉE SELECTIONAttendee 1: Chipotle Chicken Wrap Curry Chickpea Pita (Vegetarian)

Hazelnut & Blue Cheese Chicken Salad (Gluten Free)

Attendee 2: Chipotle Chicken Wrap Curry Chickpea Pita (Vegetarian)

Hazelnut & Blue Cheese Chicken Salad (Gluten Free)

OTHER REQUESTS Escort at drop-off entrance Scholarships available upon approval

Special dietary request:

CONFERENCE FEE

Before October 17: $40.00 | October 17 - November 1: $45.00The conference fee includes admittance to speaker presentations, breakfast snacks, lunch, afternoon treats, coffee and vendor exhibits.

Please mail this completed registration form with your payment. If you are unable to attend, please consider making a gift to support a scholarship for a person in need.

Enclosed is my check for $ (checks payable to NWPF)

Please bill my credit card Master Card Visa $

Card # Exp. date (month/year)

Name on credit card (please print)

Signature

Address of cardholder: Same as attendee

Address

City State Zip

Volunteers needed: This conference relies on a team of volunteers who

assist the event coordinator for all or part of the day.

Contact melissa@nwpf.org or 206.946.6515

and powerful stories are often drawn from commonplace occurrences. • Is Emotionally Healing. Parkinson’s can lead to many ups and downs for you and the whole family. Journaling is one way to help you through the bad times and chronicle the good times. It can help you process your emotions and deal with daily stress. For some, journaling can improve mood and stress. • Therapeutic. People that experience emotional or stressful events but do not express, share or communicate their emotions, otherwise called type D personality, may be at increased risk for health problems. Journaling is especially helpful for people with chronic conditions or caregivers that tend to ‘hold things in’ and tend not to discuss their issues, concerns or emotions. The benefits of journaling on heart disease and heart treat-ments shows that this simple exercise can help medical con-ditions. How it affects Parkinson’s and other brain conditions is not yet clear as research has not yet explored this question. • Creates a Legacy with your Life Story. Create family keep sake for future generations to enjoy.

How do I start? • Buy or make a special notebook- a place where you will collect all of your thoughts. It is perfectly fine to use the com-puter to make entries or a tape recorder. You may even want to create a journal jar- like a tip jar. This allows you to write down simple ideas, thoughts, etc. and slip them in a jar to pull out and read again in the future. Some people find it helpful to pull out old entries and write a response to this entry such as how your feelings or the situation has changed, what you have learned or how you have grown since then. • Journal about whatever comes to mind. It is helpful to focus not just on events but how you feel about them, what you have learned from them or what they mean to you. • Spend 5 to 15 minutes a day or at least a few times a week. Like any daily task, it is helpful to develop a routine perhaps journaling at the same time every day. Write honestly and be open about your feelings and thoughts. • Make it a positive and introspective experience; one that you look forward to each day. Find a quiet area to relax into. Make your favorite cup of tea or even indulge in that piece of chocolate you crave. • Decide whether you would like to keep your entries private or use it as an opportunity to open up discussion or dialogue with family, friends or your clinicians. • Books are available to help you with the process. You may wish to join a Journaling class.

Is it for everyone? Journaling may not be for everyone. Talk to your healthcare provider to see if it is right for you, especially if you suffer from serious depression, anxiety or other psychiatric condition as journaling can bring deep seated emotions to the surface.

Continued from page 3Bellevue, WANov. 1, 2014

| SUMMER 2014 | page 5

Seattle-to-PortlandThank you to all the riders for taking part in the Seat-

tle-to-Portland Bicycle Classic as part of Team Parkinson’s. It was a record year with 92 registered team members. Thank you all for your dedication and commitment to help-ing Northwest Parkinson’s Foundation achieve our mission of helping people with Parkinson’s live their best lives today.

A gigantic thank you to all our Team Parkin-son’s STP volunteers, who worked tirelessly in the 90-plus degree temperatures to run our Team Parkinson’s food stops in Spanaway, Centralia, Lexington and at the finish line in Portland. We seriously could not have done it without you!

Huge thanks to Brianne Vanderlinden for literally volun-teering the entire weekend, morning, noon and night! Special thanks go out to Susanne Cameron, the whole Jewell Family and the entire kitchen staff of Cameron Catering for pulling off another fabulous year of amazing food and pampering for our riders.

Our Superstar STP Volunteers:Carol Bolt, Suzanne Cameron, Patrick Donohue, Kyle

Fisher, Paula Johnson, Chris Jewell, Frank Jewell, Yegor Kipkalov, Forest Lane, Gail and Elise LaRussa, Tiana Philips, Paula Sonker, Brianne Vanderlinden, Andrew Walsh, Regina Wike, Mariann Wilson and the entire kitchen staff of Cameron catering.

Thank you to our Team Parkinson’s Sponsors!

Walk in the ParkWe had a

marvelous time on July 26 Walk-ing the Walk and making every step count! Our goal to promote commu-nity awareness about Parkinson’s and raise funds in support of NWPF’s pro-grams and services was far surpassed! Thank you to the over 260 walkers who helped make the day a huge success and took part in the festivities!

Kudos to Josh Kerns from KIRO Newsradio, Judi Spencer and the Tremolos: NWPF Choir, Angie Bolton from Dance for PD and Michael & Marissa from Fox & the Gypsy.

We would also like to acknowledge our local sponsors, Upper Queen Anne Starbucks, Store 431, Whole Foods in Roosevelt Square and Fedelta Home Care Solutions.

A special thank you to all our superstar volunteers that worked hard and in the heat to make the day a great success!

Theresa Larsen, Bailey Larsen, Todd Alkema, Adrian Alke-ma, Terri Kelsey, Bette Jane Camp, Linda Kisch, Ken Kisch, Lisa Brudvik, Patty St. George, Barb Krogh, Miriam Perez, Joenel Perez, Curist Haynes, Lori Alkema, Paula Alkema and Darrell Alkema.

The Legacy CircleNWPF’S PLANNED GIVING PROGRAM

Estate planning is an effective way to take care of yourself, the people you love and the charities that are important to you. Northwest Parkinson’s Foun-dation would like to help you leave a legacy after you are gone.

By joining the Legacy Circle and including a gift to NWPF in your overall estate and financial plans, you can provide your estate with considerable tax benefits and help families with Parkinson’s live well for years to come.

For more information on including NWPF in your estate and financial plans, please visit our website: http://nwpf.org/give/planned-giving/ or contact Anne Alkema at 206-946-6518 or annea@nwpf.org.

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| SUMMER 2014 | page 6

TRIBUTE GIFTSGifts to Northwest Parkinson’s

Foundation support educational publications and self-care tools, including this newsletter, weekly email news updates, web site,

patient education programs and annual HOPE & LIVING conferences.

We are honored and privileged that so many in the community support our mission by giving generously throughout the year. To make a

donation or for more information contact Anne Alkema at

annea@nwpf.org.

Gifts listed here are from

May. 1, 2014 through July 11, 2014

FAMILY FUNDS

Alvord Medical Director Fund in Memory of Roger Evans

Mel Bacher Family FundEllen BacherMyra BernikerHarvey & Phyllis CeaserJacob & Gale ChapmanLarry & Nancy CrevinMr. & Mrs. Robert A HammondJack & Diane Hecht Larry & Arlene KaufmanSidney & Barbara MeyersRob & Barbara MorrisThe Newbold FamilySteve & Charlotte OppenheimerJudith J. StraussAlan & Diana Turner

Mary A. Mitchell Memorial Fund

Margaret (Martie) Philbrick Family Fund

Tina Bell Torrance Family Fund

IN HONOR

Mel Bacher’s 80th BirthdayEllen BacherMyra BernikerHarvey & Phyllis CeaserJacob & Gale ChapmanLarry & Nancy CrevinMr. & Mrs. Robert A HammondJack & Diane Hecht Larry & Arlene KaufmanSidney & Barbara MeyersRob & Barbara MorrisThe Newbold FamilySteve & Charlotte OppenheimerJudith J. StraussAlan & Diana Turner

Hal NewsomMs. Donna Yates

Cal SevernsClick Wholesale Distributing

Dr. Ian D. SmithMr. & Mrs. Mike Bosko

Marie SewellLaverne Sewell

Tom SextonLaverne Sewell

Susan WrigleyRichard & Christine Gibson

James RyanJames & April Collier

Charles RushSusan CraneDivelbiss FamilyKarola MooreNASGWStanley Thompson

James (Jim) SnyderLisa AndersonBlue North Forest ProductsLynn & Susan GuyerLari RyanMr. & Mrs. Larry SchetzleHelena SnyderGene & Judy Thiessen

Alice SweigertJanice J. Sorensen

Jun TomitaJeanette AblondiMarlene BoedigheimerKathryn DugawJoe Tomita & FamilyMichelle & Andreas Vogel

Don VeitchMr. & Mrs. Knut Johansen

| SUMMER 2014 | page 7

Lawrence (Larry) HumphreyBob & Melinda BowdenConor & Jacqueline BoydDon & Joan BrownStacia & Robert CammaranoFrost & CompanyKit & Newby HerrodWilliam & Marilyn HumphreyJeffery Iverson, Sr.David & Penny LovingDavid & Stephanie McDonaldMr. Rawlin McInellyJack & Debbie MooreMike MurphyDebby Richter-Pepper & Ben PepperJoe Premont & TD BankLea RichterDugald & Norita StewartMr. & Mrs. James Will

Richard JohnsonRon & Mary BuchiteLavon E. JohnsonRon & Mary Massey

Alex KotchAnne Kotch

Anthony (Ted) LeonardiNancy AndersonMr. & Mrs. Donald F. CliffordJackie HolmanDavid & Kathleen Venhuis

Bronwen LindskogGlenn Light

IN MEMORYFritz AklymeyerRick Gottschalk

Harold & Beth AlmyRichard & Kathryn AlmyBill Ferris & Marsha Donaldson

Lois ArmintroutRay & Ilene Armintrout

Lois ArmstrongJohn & Diane Lindell

Robert BlaxEllen M. Bax

Jim BerginSandy BerginWade & Martha Moyer

Berta K. BernardJohann Bernard

Margaret CliftJames P. Clift

Neil DickinsenDenise DickensenDoris A. Dickensen

James FasanoJudith Fasano

Hisao FukuiSig & Anna Ratkoviak

Doris Green SkinnerLynn & Jennifer Bruch

Ted GrossmanGina, Rolf, Mackenzie & Sam Flaxel-ForthPeter GrossmanMarcy GrossmanKathleen MisnerJohie Seltzer

David HertingErika C. Herting

| SUMMER 2014 | page 8

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Seattle, WA 98109-4611

877 980 7500

nwpf.org

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Join us online for the monthly Lunchtime Laboratory webi-nar series. Each presentation will be shown online and can be accessed from any internet capable computer, tablet, or device. You do not need to go anywhere to participate; you can do so from any internet connected device.

Lunchtime Laboratory is presented by:

For full descriptions and updates visit: nwpf.org/stay-informed

Anna Sanger Reed at anna@parkinsonsresources.org or 800.426.6806Melissa Tribelhorn at melissa@nwpf.org or 877.980.7500

Tuesdays from 12:00pm - 1:00pm Pacific

August 5: Medications & Side Effects: Finding Your Balance Lisa Mann, RN, BSN, MA

September 2: What to Consider When Getting DBS Farrokh Farrokhi, MD

October 14: PD 101 Anna Sanger Reed & Melissa Tribelhorn, MPA

November 4: Topic TBA

December 2: Assistive Technology

All presentations will be recorded and archived one week after the live presentations at nwpf.org/stay-informed

*No special equipment necessary to participate in the webinars. All that is needed is an and internet capable device and connection. If this is your first webinar with us, please plan to join the webinar at least 15 minutes before the webinar start time. This will allow time for your computer to download the software add-on in your browser.