A Publication of the Northwest Parkinson’s Foundation | SUMMER 2016

Our mission is to establish

an optimal quality of

life for the Northwest

Parkinson’s community

through awareness,

education, advocacy

and care.

www.nwpf.org

The Parkinson’s Post is published by the Northwest Parkinson’s Foundation, a 501(c)(3) charitable organization. © Northwest Parkinson’s Foundation 2016. 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.

Bicycle, Bicycle (I Want to Ride My Bicycle)BY SCOTT JOHNSONA doctor telling Tim Fletcher in 2012 that he had Parkinson’s disease left him in a rare state of inactivity. Like many people who hear the sobering news, Fletcher was paralyzed by fear.

“It’s that moment when you’re admitted to a club you didn’t want to be a part of,” he recalled recently.

And yet Fletcher couldn’t find his way into any kind of membership. Fifty years old and with two teen-aged sons, Fletcher reached out but soon realized that most people with Parkinson’s were older and at different stages of their lives. He attended a HOPE Conference® by Sea-Tac Airport in Seattle and was devastated by the physical signs of suffering and the visible progression of the disease.

An avid biker, swimmer, hiker and runner, Fletcher started reading up on Parkinson’s and learned that the most important thing to do was to maintain some kind of active lifestyle. He knew he needed to find a group of people with PD who were willing to get each other moving.

Over the next few weeks, months and years, Fletcher began building up a community of like-bodied adults whose goal was to exercise both their mind and their body. He initially sent out 10 invitations for a bike ride in Sammamish, and all 10 people showed up – coming from as far away as Lynnwood and West Seattle. Four years later, the Active Parkinson’s Group has blossomed to 26 members, and Fletcher is always open to adding more.

“It started organically, with me reaching out to a few people, and then it started growing by leaps and bounds,” he said.

The Active Parkinson’s Group has plenty of physical activity, from bike rides to hikes, but it’s mostly about being part of a community. It’s not a support group, per say, but Fletcher’s network is designed to help people cope with Parkinson’s together by staying active and connected.

“For some people, (Parkinson’s) makes their lives smaller because it can be very awkward socially,” Fletcher explained. “Your hands tremble when you reach for your wallet, your gait is different. You’re very

conscious of these things, so you become house-bound. Your world shrinks.

“It’s important when diagnosed with Parkinson’s to exercise not only your body but also your mind. Read, take on more hobbies. Do something to challenge your mind, not just your body.”

Some of the more popular activities are the ones that stress the social over the physical. Fletcher’s group often gathers at Art Marble 21 in South Lake Union to play pool and video games. The group can also be found gathering for a barbecue or for a beach outing in Alki.

Just getting out of the house and spending quality time having fun with other people with Parkinson’s is enough to help find some kind of peace.

“When you first get diagnosed, you’re overwhelmed with all the information,” Fletcher said. “When you’re able to talk to one person, they’re either managing the symptoms or they’re not, but you feel like they’re fighting the fight with you.”

Several members have branched off into smaller friendships of two or three, and that’s the kind of social expansion Fletcher hoped to see when he created the Active Parkinson’s Group four years ago.

Fletcher has benefitted from the group both socially and physically. He’s nearly as active as he was before learning he had Parkinson’s, often spending weekends on four-hour mountain-bike rides through Tiger Mountain.

“I find that when you do things that take immediacy and adrenaline, it takes a lot of focus and attention,” Fletcher said. “I feel like I don’t have Parkinson’s at all, like the symptoms almost disappear during that time.”

INSIDE

The ED Corner 2

Welcoming the Inland Empire 3

Being an Artist with Parkinson’s 4

Tributes 6

Book Review: Old Age: A Beginner’s Guide by Michael Kinsley 7

A Carepartner’s Thoughts on HOPE 9

Change is Possible with Parkinson’s

A Conversation with a Movement Disorder Specialist

Page 5

Continued on page 2

Find us on Facebook: NW Parkinson’s Foundationand Twitter:@NWParkinsons

| SUMMER 2016 | page 2

The ED Corner STEVE WRIGHT MPA

Continued from page 1

Board of Directors

Elizabeth Bacher

Lisa Bain

Amy Cole, RN

Gloria Gottesman

Sheryl Harmon

Kerry Hovenkotter

Marty Hovenkotter

Larry Jacobson

Paula Lehmann

Matt Lydon

Jennifer Marsh

Jack Nettleton

David Newsom

Doreen Nicholas

Clare Nordquist

Mark Palek, PhD

Jonathan Poneman

Mike Reed

Ian Riley

Shawn Roberts

Iam Smethurst

Pam Walker

William Wurts

Directors Emeritus

Bill Bell

Gov. Daniel J. Evans

Nancy Evans

Gov. Booth Gardner (de-

ceased)

Dick Hadley

Karen Hadley

Hal Newsom

(deceased)

Matt Ramerman

Priscilla Tanase

Social Services Manager

Maria Cole, MSW, LICSW

Regional Director - Inland

Empire

Cyndi Cook

Community Resource

Coordinator

Emily Geldbach

Communications Manager

Meleah Roy

Finance Director

Virgil Sweeney

Development Associate

Cate Tambeaux, MSW

Deputy Director

Melissa Tribelhorn, MPA

Executive Director

Steve Wright, MPA

The daily activity has been a huge part of Fletcher’s ability to cope with his Parkinson’s.

“Some people approach Parkinson’s like: ‘Learn to accept it. The disease is there, so accept it,’” he said. “I see it more like a combatant, an opponent that I wake up to every day. Sometimes I conquer it, sometimes I don’t. It’s like going to battle, going to war, every morning. You’ve got to be aggressive. You can’t be like: ‘This is my lot in life.’”

The daily battle isn’t always easy.

“If (someone who doesn’t have Parkinson’s doesn’t) work out for a few days, you might feel a little sluggish or less alert,” Fletcher said. “If I don’t work out every single day, I feel like my body’s stuck in cement. That’s my motivation. The mornings are the hardest, when you feel it the most, so it’s a challenge. But that’s what gets me going.”

Staying active, and depending on others, has been the

best way for Fletcher to take his Parkinson’s journey. Seeking help from those who walk in similar shoes is the first step.

“Parkinson’s hits men more than women, and men are less likely to reach out, for whatever reason,” Fletcher said. “My generation is not always into talking or reaching out. The tone of the group isn’t a support group, like, ‘How have you been doing?’ It’s, ‘Let’s do some active, fun things.’ Even pool or ping-pong is great. Something to get you moving.

“Mostly, it helps me feel really good and connected. It makes people feel like they’re a part of something. That’s what I like about it. You’ve got to have something good come out of this, right?”

Anyone interested in joining the Active Parkinson’s Group or participating in an upcoming outing can email Tim Fletcher at tcfletcher@live.com

Summer is always a special time—kids laughing in the water, sun shining down on our faces and abundant opportunities to tally the goodness in our lives. This Summer and early fall provide a plethora of Parkinson’s related gatherings—chances to improve your lives and those of your loved ones.

Saturday, July 30, Northwest Parkinson’s Foundation is proud to host the Third Annual Team Parkinson’s Walk Seattle at Magnuson Park. The Walk is the single largest gathering in the region to raise funds for Parkinson’s care. I encourage you to come out and participate with your families, friends, dogs and kids. You can register online at teamparkinsons.org or give us a call. As John said, “a splendid time is guaranteed for all!”

On August 6-7, Northwest Parkinson’s Foundation,

MentoringWorks Washington, and Emerald Downs combine efforts to create Western Washington’s largest 3-on-3 Basketball tournament—The Jim Marsh Classic. Named in honor of the venerable Northwest basketball coach and mentor, the Jim Marsh Classic moves to Emerald Downs for 2016. More teams, more vendors, more competition and more fun.

Finally, the World Parkinson Congress takes over Portland September 20-23, 2016. If you haven’t already registered for this unique conference, I recommend you do so soon. Thousands of individuals with Parkinson’s, caregivers, movement disorder specialists, researchers and nonprofit groups like NWPF will converge to present the newest information on Parkinson’s. www.wpc2016.org

Save the Date

Celebrate! Dinner & Auction

Saturday, October 29, 2016Fremont Studios

Seattle, Washington

Medical Advisory Council

Stephen Asher, MD

Neurologist

Saint Alphonsus

Boise

Laurel Beck, PT, MS, NCS

Physical Therapist

Virginia Mason

Jonathan Carlson, MD

Neurosurgeon

Providence Spokane

Maria Cole, MSW

Licensed Social Worker

NWPF

Anthony Harris, MD

Neurosurgeon

MultiCare Tacoma

Emilie Jones, PT, DPT, GCS

Physical Therapist

Virginia Mason

Andrew Ko, MD

Neurosurgeon

UW Medicine

Chong Lee, MD

Neurosurgeon

Group Health

Richard Mesher

Neurologist

Group Health

Kristoffer Rhoads, PhD

Neuropsychologist

Virginia Mason

Ali Samii, MD

Neurologist

UW Medicine

Jeff Shaw, Psy. D

Neuropsychologist

EvergreenHealth

Kirkland

Sindhu Srivatsal, MD

Neurologist

EvergreenHealth

Kirkland

Virginia Mason

Joe Tornabene, MD

Neurologist

Wenatchee Valley Medical

| SUMMER 2016 | page 3

Interested in joining the MAC?

Please contact Melissa Tribelhorn at

melissa@nwpf.org

Join the Team that’s Strengthening the Northwest Parkinson’s CommunityTeam Parkinson’s Walk Seattle is more than just a two mile trek. It’s an opportunity to raise money for local services and to fight for something we care about. Become part of the thousands of people who have joined Team Parkinson’s and bring your determination, energy and passion to Walk with your friends and family. The money you raise stays right here in our communities.

Register and start fundraising today!As soon as you register (there is no registration fee to walk), you’ll have access to our online fundraising tools which make your efforts fast, easy and more convenient than ever. Need help? Don’t worry!

Contact Anne Alkema at 206.669.4883 or anne@nwpf.org for tons of fundraising tips and tricks to help you.

Team up for more fun!Why walk alone? Create a team and share the experience with friends, family and coworkers. The more people who unite under our common goal, the greater the impact on those living with Parkinson’s.

Let’s walk!Join the excitement on Walk Day with other passionate supporters of people living with Parkinson’s.

Learn more at teamparkinsons.org

Saturday, July 30Registration 8:30 a.m.Walk 9:30 a.m.

Warren G. Magnuson ParkSeattle, WA

Register today at teamparkinsons.org or by calling 877.980.7500

Welcoming the Inland EmpireCYNDI COOK, Regional Director, NWPF Inland Empire

What an amazing couple of months it has been for the Spokane Parkinson’s Community and the areas previous-ly served by the Parkinson’s Resource Center of Spo-kane. We were excited to announce that we were joining the Northwest Parkinson’s Foundation as the Inland Empire during Parkinson’s Awareness Month in April. The boards of the two organizations worked tirelessly for several months to combine the organizations with the goal of continuing and enhancing services and support throughout the Northwest.

Since April, the Inland Empire Office has been working on the transition and joining our new team based in Seattle! We hope that you can join us at one of our many in-person programs that take place at our Spokane office (still located at 613 S. Washington, Suite 104). You can also join us for the many new online program opportu-nities provided as part of our outreach throughout the Inland Empire.

Over the next six months, the Inland Empire is growing to better serve the PD community. We invite you to join us at the Team Parkinson’s Walk in Spokane on Satur-day, August 20, Spokane’s signature fundraising event “Shakin’ but not Stirred” event on Friday, September 30 and much more to come! We are working on an improved TeleHealth program that includes an online

viewing possibility, plus we plan to bring more movement and education programs to communities we serve!

I would also like to thank the Spokane Festival of Speed volunteer team and all the event volunteers for their efforts to spread awareness and support for the Parkin-son’s programs in our area! Once again, the Festival of Speed was a huge success in spite of record-breaking heat. We look forward to working with the organization next year!

Spokane Dance Class

| SUMMER 2016 | page 4

Marsha Karr, On Being an Artist Living with PDMARSHA KARR, Person with Parkinson’s

All of us living with Parkinson’s Disease are familiar with the challenges our personal version of the disease adds to our everyday lives. Making art both enriches and complicates my life as a person with PD. I am fortunate that tremors haven’t compromised my fine motor skills and affected my ability to paint.

Twelve years after diagnosis, I continue to face challenges of discomfort and fatigue as do my fellow PD Warriors. For my DBS operation two years ago, I had to overcome the apprehension of brain surgery and enter the unknown. Since the DBS I have had an outpouring of creative energy, producing and exhibiting a new body of work.

Soon after I was diagnosed with PD, I read an article that suggested if you are new to Parkinson’s and never tried your hand at art, now is an opportunity to take up an art or craft. This can be both relaxing and beneficial for cognition. The article went on to say that if you are a working artist, consider changing your approach to creating art and paint for the fun of it. Easier said than done! I’ve always been an achiever and a perfectionist. Challenging traits to have with Parkinson’s. But with maturity comes a degree of acceptance and I am learning to cut myself some slack.

All the evidence points to the benefits of physical and mental activity for controlling PD symptoms and possibly the progression of the disease. Painting offers me both. I usually stand when I paint, gesturing and focusing my energy into the work. Sometimes I have to stop painting due to fatigue, even when the piece feels unresolved. This is frustrating, but I am learning to listen to my body knowing I will return to the work when I am refreshed.

Lethargy and apathy are the enemies of people with PD. When I consider a blank canvas, I am confronted with the question, “Why paint?” I already have my paintings on my walls and in my studio. “Why make more?” Because being able to create is a gift. Being artistic is woven into the very fabric of who I am. It comes into play when I choose to cut flowers and leaves from my garden for a bouquet, and even how I put vegetables on a plate. Every detail has my mark on it.

I have always approached a painting with intention. The cognitive part of creating art is problem-solving. However, I am prone to over-thinking a painting, trying to be in control, which inhibits creativity and spontaneity. In the thick of working on a piece there often is a point when I start to question what I am doing. That is a good time to let go. The resulting chaos on the canvas can be frightening! But by being courageous and taking a leap, as I did with my DBS surgery, a miracle may happen. It’s like a spirit released from a bottle. Much to my surprise, something beautiful and unexpected can happen.

The act of painting sharpens my awareness of the world around me. After a studio session, when I shift my gaze to the environment beyond my canvas, I see the world in an enhanced way. Colors are richer, more intense, the light is nuanced. As with a new painting, we cannot predict how our PD is going to progress, but I think it is important to stay positive, think beyond the limits of the disease, and embrace our lives. If I can inspire, move, and amuse others through my art, I am well rewarded.

Marsha Karr paints and consults on interior design from her Mercer Island studio. She participates in Dance for PD and the Tremolos and is a volunteer in the NWPF PD Link program. Her paintings will be exhibited at the Mercer Island Community Gallery, 7/ 25 - 9/9, for information (206) 275-7609. Visit her website to learn more about the artist and see her art work. www.marshakarr.com.

Malespina

Marsha Karr in her studio on Mercer Island, WARiver Sonata

| SUMMER 2016 | page 5

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 Foundation 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 Steve Wright at 206-946-6514 or stevew@nwpf.org

Change is Possible with Parkinson’sA CONVERSATION WITH PINKY AGARWAL, MD, Movement Disorder Specialist | Booth Gardner Parkinson’s Care Center at EvergreenHealth

Parkinson’s symptoms can be managed to help patients live their best quality of life. If you were to illustrate this point, what would your message be to a PWP?Patients sometimes [perceive] that Parkinson’s disease [symptoms are the new norm] of one’s life because there is no cure. Several other conditions such as hypertension, hypothyroidism or hyperlipidemia, may not have a cure but can be well-controlled with medications. Similarly, if Parkinson’s is optimally managed with a combination of

medications and exercise, patients can continue to enjoy life.

What advice do you have for PWPs hoping to manage their physical symptoms?The best way to overcome the physical challenges of Parkinson’s disease is just [to be as] physically active as possible. As patients’ [lives] continue [with] Parkinson’s disease, there may be an increased need for medications for [symptoms such as] depression, memory problems, constipation, bladder problems and anxiety.

The symptoms can respond quite well to medications. A combination of exercise and optimizing medications can keep patients active and functioning for a long time.

Tell us about the latest PD medical discoveries and inventions.Taking Parkinson’s medications multiple times during the day is a challenge for patients. Several alternative medication delivery technologies are being developed with the hope that patients will take the medications less often and at the same time have more continuous control of PD symptoms. Some of the technologies and development are: •subcutaneous apomorphine infusion technology•carbidopa/levodopa in a slow release accordian pill formulation•carbidopa levodopa in an as-needed inhaled formulation

Apomorphine, which is currently available in an injectable formulation, is being developed as a sublingual as-needed formulation to help patients “turn on” quickly when their PD medications are not working. Several new medications are being developed for dyskinesias and off time. There is also a new medication being developed for Parkinson’s disease hallucinations and psychosis.

As a Movement Disorder Specialist, can you give an example of exceptional improvements that you have seen in a PD patient? Young PD patients can be particularly challenged due to the [difficulties] they may face at work, taking medications on-time during the middle of the day and still being able to function optimally at work. I have a patient who is young with Parkinson’s disease, has two young children, and is still managing to work as a Zumba instructor. She also manages to find time to volunteer in her children’s school.

Tell us about the role of support systems for PWPs.PD support communities can play a significant, positive role in the lives of patients with Parkinson’s disease. Patients can learn from each of those challenges, how they have overcome these challenges, community resources that have been helpful to them such as group exercise classes, transportation options and the emotional support from being part of a group and not feeling alone. Exercise helps and having better outcomes, and is as important as medications. Patient’s are much more likely to exercise if they enjoy the exercises. Yoga, music, dance, biking and boxing provide exercise in a fun environment [and] is also challenging.

Pinky Agarwal, MD is part of the Parkinson’s Care Team at the Booth Gardner Parkinson’s Care Center at EvergreenHealth in Kirkland. To make an appointment, call 425.899.3123

Marcie Sewell & Tom Sexton Laverne Sewell

Diane Spinrad Andrew Cohen

Jock Streidl John and Peggy Gettles

South Whidbey Parkinson’s Support Group Mitch and Marsha Cogdill

Christine Thorson Duane and Christine Thorson

Robert Timar Katherine Timar

Jack Tsochiya Bob and Toyo Tanaka

Gary Vallat Aimie and Bill Vallat

Jackie Vhugen Darryl and Jann Vhugen

Dr. Robert Wilder Al and Joyce Hornish

Brian Wilson Heather Scearce

Janet Zema Todd and Jane Summerfelt

IN MEMORY Carl A.J. Abrahamsen Carla Folkins

Kevin Adamson Greg and Stephanie Jones

Margaret Anderson Jack Anderson

Angelo Arena Wanda Fescine

Kathy Arne Jack Menashe

Donald Barrett Nicholas Barrett

Charles Bearden Charles and Penny Robinson

Betty Blue Dan Blue Daniel Blue Patricia Decker John and Ilse Herrington Don and Judi Lardy Paul and Donna Latka Al and Gail Wolf

Simon Blunt Basil and Lidia Filonowich Anne Morrison

Phillip Brazeau Janet Zema

David Brockman Brockman Family Liboue Family Ralph and Linda Moldauer

Bob Brotherson Dorothy Brotherson Darrell and Dolores Tawes

Tony Chinn Frank and Ruth Chin Frances Chinn Judy and Carol Chinn Mel and Jane Chinn Tom and Evelyn Chinn Hazel and Cecil Leung Priscilla Locke Joe and Sula Louie Carolyn Mar James Seidl Richard Yee Susan Yang Suey-Hong and Linda Yee

Marvin Coe Nancy Anderson Lore Coe Linda and Alan Freyd Joel and JoLynn Garrison Spencer and Lynda Goldsen John and Kathryn Hoffman Ruth Levinson Rhona Earle Robert and Joan Levitin Ralph and Linda Moldauer-Gloria Newman Harold and Jolene Scott

Navah Fuchs Nicholas Golde Michael Griffith Sara Habecker Patrick Heath Mark Irvine Jaclyn Jordan Ben Kasdon Zina Kayyali James Lamoureaux Gleb Makagon Michael Maloney Mara Miller Jason Ohare Norman Provost Krishnama Raju Elliott Reid Jonathan Reimels Francine Rodriguez Jeffrey Roe Matthew Rothenberg Erin Sagin Peter Swanston Laura Taylor Tony Testaverde Kristen Yerardi William Zinsmeister

Bill and Gladys McCord Tim and Melinda Larson

Lyle McKibben Ralph and Linda Moldauer

Terry McManus Miller Sigmon

Bill Meierding Bill and Nina Meierding

Mary Nordquist Greg and Kristin Nordquist

Ted Oien Troy and Laura Thie Lanny and Ruth Kee

Jonathan Poneman Adriana Mortenson Olivia Riley Rachel Rhymes Brent Zmrhal

Ann Roach Madalyn Ohrt

Larry and Holly Runyan Stan and Sharon Bloch

James Russell Vicki Russell

| SUMMER 2016 | 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 Steve Wright at

stevew@nwpf.org.

Gifts listed here are from

November 16, 2015 - May 1, 2016

IN HONOR Jayne and Bill Barrere Gerrit and Pat Barrere

David Becker Andy Backlund

Derry Bowles Derry and Marilyn Bowles

Richard Carlson

Marcy and Tim Carlson

George Caton Pamela Mull

Herb Chereck Drew and Emily Jensen

Kent Christiansen Dru Christiansen

Robert Down Norm Lofthus

Diane Friedlander The Anders Foundation

Paul Fussell Carolyn Haessly

Gloria Gottesman Jaclyn Cohen Feinberg Foundation

Mary Jacobson Miller Sigmon

William Jameson Jennifer Jameson

Pota Johnson James and Pota Johnson

Kate Sako and Kendall Flint Clarius Group, LLC

Michele Keir George and Judy Cohen

Margy Laughlin Magry Laughlin

Matt Lydon Jessica Armstrong Manish Barmecha Samuel Boyd Christopher Butts Sean Cruise Anson Dorsey Pamela Dorway-Worley Rob Durant Ralph Folz

Southard, Beckham, Atwater & Berry, CPA, PS Susie Susanne Avrohom Yarmush

Albert Coleman Robert and Ann Glubzinski Steve Matthews

Susan Compton Maddox Charles Woodard

Winn Davidson Linda Davidson

Dr. Melvin DeMond, DDS Ellomae DeMond

Craig Dufur Lynn Dufur

Clarence Elsworth Lyons Connie Lehmann

Robert Ettlin Lee and Ann Baerny Helen Ettlin

Ed Ewell Frank Cholaj

Keith Fluegel Marilyn Fluegel

Harry Galinsky Mikey and Marty Lustberg

Ted Grossman Peter and Polly Grossman

Daniel Hannigan Jackie Hannigan Bob and Elisabeth Inacker

Henryetta Hedrick Janell Focht Karin Holden

Karen Hermann Sigwulf Hermann

Mary Hoisington Lesley Culley Dale Hoisington Dale Hoisington

Lyman W. Hull Seattle Foundation

Larry Humphrey Dave and Florence Covey

Margaret Jones Nancy Birkmer Ann Richards

Vic Kaloper Danica Kaloper

Ruth Karr Steve and Debbie Amundson Jeanne Karr Bush David and Crystal Dahl

Jack Kelly John and Peggy Kelly

John Kicza Darrel and Mary Ashby Adrian Aumen Tom Caswell Stephanie Engle Diane Kicza Nancy Michel Marjorie Sanchez-Walker Pat Thorsten-Mickelson Marilyn and Tim Von Seggern Martha Yates

Gisela Kriebaum Bob and Marjorie Mearls

Paul Kryska Eva Kryska

Salvatore Laurella Anna Ward

Gerry LeBlanc Ted and Marsha Page Linda LeBlanc

Alan Liboue Ralph and Linda Moldauer

Bert Lillian Betty and Allen McCall

Sally Looff Fran Mezistrano

Alex Maher Kathleen Beaird

Dale Martinis Teresa Lewis Berrie Martinis

Holly Monek-Anderson

Delores Z. Martinis Greg and Stephanie Jones

Gary McGlocklin Wallace and Marilyn Prestbo

Edwin McKinney James Werner

Alex MeNeill Rick and Kathy Chiotti

James Meucci Carukka Marsh Marilyn Meucci

Waldmar Moerer Ellensburg PD Support Group Delores Moerer

Stuart Moldrem Lisa Moldrem

Edward Mulvihill Kristie Simard

Clint Names Kappy Calkins

Doretta Nees Lois Wagner

Hal Newsom Gilbert and Mary Jane Anderson Margo & Bill Bell Family Foundation Jette Bunch Robert and Kimberly Bush Harold and Joyce Carr Leonard and Else Cobb Consuelo and Gary Corbett Tom and Kathleen Cunning-ham Roberta Devore Lorna Erickson Richard M. and Maude M. Ferry Charitable Foundation Basil and Lidia Filonowich Jim and Beth Fitch Phillip Gladfelter Delores Groth Margaret Haggerty John Hansen Sheryl Harmon Tom Hull Buz and Mary Lou Hunt Al and Judith Johnson Paul Johnson James and Susanna Lane Pamela McCabe Mary Mikkelsen Drew and Donna Miller Jo Anne Moehring John and Jane Nelson Peggy Newsom Maria Overturf Richard and Sally Parks Walter and Sheila Petersen Don and Sue Phillips James and Donna Schulz Seattle Foundation John and Belinda Sherwood Barbara Smith Donald and Lilyan Snow Phyllis Stern Bob and Toyo Tanaka

James Nipper Rose Nipper

Robert Nym Park, III Apex Foundation

Charmaine O`Leyar Cheryl Bullock Greg O’Leyar Jaclyn Sorlie

John O’Heron Nancy O’Heron

Paul Palmer Jack and Kathy Coddington

Rick Pasko Diane Lancaster

Ruth Pasternack Eric and JoAnn Pasternack Irene and Ed Pasternack

Leon Peha Alan and Barbara Rappoport

Rich Perkins Bill and Lynn Weirich

Howard Purves Nancy Irion Julie Langabeer

Brian and Anna Purves

Klaus Raben Richard and Yvonne Arluck William and Ute Wolfe Guni Wright

Patricia Rebar Anonymous Julie Joyce William and Nadine Morris Dan Nelson Beverly and Jack Rosenow Frances Shensky

Larry Riegert Larry and Rosie Glickfeld Doug and Pat Taylor

Bernard Robertson III Sharon Robertson

David Rohrbaugh Colleen Rohrbaugh

Michael Runyan Betsy Geise Lucy Geise Mary Joan Geise Renee Greer Joe and Cathy Hurson Andy Nickelhoff Kenneth Phillips Jeff Starke

Charles Rush Evelyn Rush

Sheila Saam Rolan Saam

Daniel Sande

Sue Riedle Brad and Barbara Sande Wyoma Sande Alan Stang

Carol Schneider Jim and Barb Levander Stuart Schneider

Doris Skinner Gailin and Julie Hester

Hubert V. Smith Canfield and Georgene Smith

James Smith, Jr. Mrs. Smith

Don Sundberg Carol Barker Lois Sundberg

Frank Sweeney Debbie Slye Patrick and Mary Jo Sweeney

Virginia Till Joan Munsey

Stan Tomich Pat Tomich

Wayne Uht Michael and Marci Hibbard

Jacklyn Vhugen Jack Alhadeff Edward and Susan Ar-chibald Jeannie Butler Jolyon Burton Richard and Lisa Davies Robert and Judith Duggan Michael and Ann Kahn James and Laura Kartsonis Robert and Lori Kraft Patricia Bader Martin, P.S. Gloria Newman Sadami Ono Helen Saito Hal Vhugen Gary and Suzy Walker

Marty Walker Jane Goodin Giles Walker

Alan Wetzel Debbie Wetzel

Bernard Wetzel Alice Wetzel

Louis Wetzel Margaret Muldoon

Carol Wurts Rick and Sarah Hollyer William Wurts

Old Age: A Beginner’s GuideBY MICHAEL KINSLEY

BOOK REVIEW BY PETE BEIDLER

Why am I writing for the Northwest Parkinson’s Foundation’s Parkinson’s Post a review of a book by an author who announces in his opening sentence that “This is not a book about Parkinson’s Disease”? The answer is that in Old Age Michael Kinsley really does have a lot to say about Parkinson’s, a disease he has lived with for the past twenty-five years. There is other stuff in Old Age — about the baby boomer generation of Americans born between 1946 and 1964, about why and how they should pay down the national debt, and about how to ensure that you will be remembered after you are dead — but even those parts are informed by the experience of a man who knows that he will die with, if not of, Parkinson’s.

Kinsley is a well-known journalist who writes with authority, statistical integrity, and humor about what he knows, and one of the things he knows about is Parkinson’s. In what follows the questions are mine; the answers are Kinsley’s.

How bad is it to have Parkinson’s? “If you’re going to get a serious disease — and unless you’d prefer to die violently and young, you’re probably going to — Parkinson’s is not your worst choice. . . . Like its victims, it tends to move slowly. It is not generally considered fatal — meaning that there’s enough time for something else to get you first” (19). “There are far worse medical conditions than Parkinson’s” (68). “[My] bad back has been more burdensome to me than Parkinson’s” (87).

Cancer and heart disease are number one and two killer diseases in the United States. What number is Parkinson’s Disease? Number 14. “Not only do most people with Parkinson’s not die of it, but even of those who do, almost half make it past eighty-five.” (62). “My chance of being alive at eighty . . . is about as good as that of any other sixty-five-year-old American male. That chance is almost exactly fifty-fifty. And I’m more likely to be felled by a heart attack . . . than by Parkinson’s” (67–68).

Is it still accurate to describe Parkinson’s as a “movement disorder”? “How could experts have failed to notice until the past two decades that Parkinson’s is as much about cognitive problems as it is about physical ones? In fact, I would say that there are three categories of Parkinson’s symptoms: physical symptoms, such as shaking or freezing; cognitive symptoms, such as the number of states you can name in thirty seconds (go!), and psychiatric symptoms, such as depression” (94).

How prevalent are the cognitive and psychiatric symptoms associated with Parkinson’s? Kinsley cites Patrick McNamara, a neurologist at Boston University: “Upwards of 85% of PD patients evidence deficits in executive cognitive functions even early in the disease. . . . More than half of all patients suffer severe anxiety or depression” (91).

Is Kinsley glad that he had the brain surgery called Deep Brain Stimulation (DBS)? “This surgery has been a miracle in terms of reducing the physical symptoms of Parkinson’s” (104).

Is it sensible for us to want to live as long as possible? “Anyone who lives past eighty-five, as more and more of us intend to, has roughly a fifty-fifty chance of exiting by way of Alzheimers. So there are two forms of competition in the boomer death-style Olympics. There’s dying last and there’s dying lucid. . . . If you’re prepared to die at sixty, you can pretty much scratch dementia off your list of things to worry about. By contrast, if you don’t mind being a bit dotty — or worse than that — you can go for longevity. But unless you’re extremely lucky, you

won’t win at both games” (85–86).

So what is so bad about dementia? “There is a special horror about the prospect of shuffling down the perennially unfamiliar corridors of some institution in a demented fog, being treated like a child by your children, watching TV all day but unable to follow even the most simpleminded propaganda on Fox News or the most facile plot twist of Downton Abbey. Dementia seems like an especially humiliating last stop on the road of life” (83).

Should our goal be to live the most years or to live with the most marbles? “So ‘Death before dementia’ is your rallying cry. It is also your best strategy, at the moment, since there’s no cure for either one” (85).

How does the dementia associated with Alzheimer’s differ from the dementia associated with Parkinson’s? “Alzheimer’s tends to start its destruction in the parts of the brain affecting memory, whereas Parkinson’s starts with what they call the executive function: analyzing a situation and your options and making a decision” (97).

Should people with Parkinson’s be concerned about falling? “Pneumonia used to be called ‘the old man’s friend’ because it ended so many lives whose owners were finished with them. That role (though possibly not the label) has now been taken over by accidental falls. The death rate from falls nearly doubled from 30 per 100,000 in the year 2000 to nearly 60 per 100,000 in 2013” (60).

Why is it so hard to give up driving a car? “Partly because a car represents freedom. But partly because a driver’s license represents adulthood, and full participation in adult life. Not being able to drive infantilizes. . . . Add to this the conclusion of one study involving four thousand elderly men and women — that turning in your keys makes you 44 percent more likely to ‘experience increased depressive symptoms’ ” (76).

How bad is it, really, to give up driving a car? “The combination of walking and public transport can get you where you need to go more cheaply than buying, maintaining, and fueling a car. . . . It helps if you can afford to treat yourself to a taxi or Uber when necessary, or even when not necessary, just because you feel like it” (75).

See, Old Age really is about Parkinson’s.

Interested in reading Old Age: A Beginner’s Guide? Check it out of the NWPF Lending Library. Call us at 877.980.7500. You can also purchase it on Amazon, or check your local bookstore.

| SUMMER 2016 | page 7

Save the Date!Saturday, November 5, 2016

Meydenbauer CenterBellevue, WA

Registration begins in August. Call NWPF at 877.980.7500 for more information.

| SUMMER 2016 | page 8

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A Carepartner’s Thoughts on HOPEBy KATIE JACKSONI’ve been an official, full-time Montanan for two years now, having retired from teaching in Virginia in June 2014. My husband, Joe (who has PD) was born and raised in Montana. He moved to Virginia, where we met in 1999, and spent a big chunk of his professional life as a clini-cal psychologist there. I fell in love with Montana the first summer Joe introduced me to the beautiful Northwest and we’ve been “making our way home” ever since. After moving to Montana full-time, I’ve become very involved with CASA work (court appointed special advocates for abused/neglected children). This volunteer work, as well as my participation in a weekly hiking group and two book clubs, has given me a strong sense of belonging to this beautiful area of Montana.

Joe and I first got involved with the Kalispell PD community while we were vacationing in the summer [in] 2011. (Joe was diagnosed in 2009 while we were still in Virginia most of the year.) We saw a notice for the monthly support group meeting in Kalispell and decided to try it. We were immediately made to feel welcome by the group, and especially by Lois Wagner, the group’s leader/facilitator.

Joe and I learned about NWPF through our affiliation with the Kalispell support group. It felt so good to me, as a carepartner, to have NWPF relatively close by, with so much valuable information on a variety of aspects of PD. NWPF felt like family somehow, like we were and are, so very connected on our collective journeys with PD. I always look forward to reading the NWPF’s Parkinson’s Post; it’s a connecting force, providing a broad base of comforting support and helpful information for families and/or individuals affected by PD.

A few years ago, before we moved out west permanently, Joe was asked to be a speaker for the NWPF HOPE Conference® in Kalispell; his

talk was on meditation and mindfulness, practices he has maintained over much of his adult life. NWPF has been a source of connection, kindness and solid information over the years that we have been in Montana.

[We attended] the most recent NWPF conference in May, and I also facilitated a breakout session for care partners. I felt the term HOPE was so appropriate for this conference. A.C. Woolnough, who has PD, was inspiring to me because he re-infused me with the excitement needed to [explore] new paths to help the greater good, like participating in clinical trials. Dr. Pinky Agarwal explained to us several medications that are currently in clinical trial phases and what their potential benefit might be. HOPE Montana was a nice balance between scientific information and the amazing power of connecting with others who are sharing a similar life experience. For me, feeling that I am a part of such a solid, compassionate regional PD community provides the “juice” I need to keep being the best care partner I can be. As we neared the end of the conference, Jenna Justice, a Music Therapist, played the piano and reminded us so beautifully of how music is a healing, universal language. Our closing circle was led by our dear Lois Wagner, Kalispell support group leader. We stood in a large circle, holding hands, and passed along, one to the other, a kind look and a squeeze of the hand. It truly takes a village, and we can all be stronger together!

If there is once piece of advice I would give to care partners in the PD community, it would be to seek out others like yourself, keep your heart open to opportunities for fun and friendship, and to do what you can to honor yourself and your needs as well as those of your loved one.

Watch recordings of this HOPE Montana Conference online for free. Visit nwpf.org/participate/conferences