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

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Parkinson’s community

through awareness,

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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.

Microsoft VP’s diagnosis fuels employees’ heartfelt efforts to help othersBY TRACY ITHMicrosoft News Center StaffMatt Lydon would find excuses not to get up and write on the whiteboard at meetings. When the Microsoft exec had to speak publicly, as he often did, he’d try to make sure he was sitting on his right hand or had it jammed tightly in a pocket so no one would notice the tremors.

For almost three years, he told few people his secret and lived with the fear of what it would do to his career, his friendships, his whole life. But hiding it was exhausting and couldn’t continue forever.

So one morning in late August, Lydon, the vice president of Worldwide Search Advertising, told hundreds of colleagues attending an all-hands meeting in Redmond, Washington, and connected by Skype from Microsoft offices around the world that he has Parkinson’s disease.

The room fell silent. Stunned eyes filled with tears. Yet even amid the initial shock, recalls Search Advertising Business Director Sarah McGovern, “The first thing everybody said is, ‘How can I help? What can I do?’”

That unexpected upside of Lydon’s diagnosis has only gained momentum since: Many people on Lydon’s team and beyond have joined him in broad efforts to help others who have Parkinson’s, pouring their time, money and technical expertise into the cause.

Their dedication has already had a powerful effect on the Northwest Parkinson’s Foundation, a nonprofit that helps improve the quality of life of people living with the disease, and the Michael J. Fox Foundation, which is focused on finding a cure.

“We can better serve people with Parkinson’s right now because of Microsoft and what Matt has done. This will directly impact thousands of lives across the region,” says Northwest Parkinson’s Foundation Execu-tive Director Steve Wright. “Anything we want to do right now is possible.”

Lydon began helping the nonprofits about a year be-fore announcing his diagnosis. He wanted to give back because he’d leaned heavily on Northwest Parkinson’s

Foundation in his darkest time — the first year after receiving the news — but he says it was also “a selfish reaction” to the way it made him feel.

“Every year from now on is going to be tougher,” he says. “When I got involved, I stopped focusing on the symptoms and the outcomes. I felt more energy, and I am healthier as a result.”

The second thing that “flipped a switch” on his outlook came a few weeks ago. He’d just gotten back from a trip to Hawaii — a perk of winning the Microsoft’s Founders Award for outstanding leadership —and McGovern had scheduled a meeting. Lydon was bewildered about the purpose of it, but he went.

He was surprised to find a crowd of employees holding a gigantic check for Northwest Parkinson’s Foundation. They’d quietly held a fundraiser while he was gone, selling T-shirts for a minimum $25 donation, though many people shelled out far more.

Microsoft matched each donation. The generosity topped $22,000.

“I totally broke down. It was crazy,” says Lydon, who recently accepted a spot on the Northwest Parkinson’s Foundation board. “The support has been amazing. The number of people who have wanted to get involved speaks to the character of the Microsoft community as a whole, and the thing that has helped me day-to-day living with this disease is having that support.”

The Bing Ads Marketing Team raised another $8,000 through a 5K run. Still another fundraiser on Microsoft’s Redmond campus had employees getting their pictures taken in a DeLorean like the one that Michael J. Fox’s character in the movie “Back to the Future” used to travel through time.

That event raised almost $9,000 for the foundation

INSIDE

The ED Corner 2

Poetry of Gary Vallat 4

The Whole View of Parkinson’s Through a Heart of Mindfulness & Kindness 4

Tribute Gifts 6

An NWPF Announcement 7

Book Review: My Degeneration by Peter Dunlap-Shohl 8

A Unique PD Network:

Ross Webb’s StoryPage 7

Continued on page 2

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

| WINTER 2016 | page 2

The ED Corner STEVE WRIGHT

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

Clare Nordquist

Mark Palek, PhD

Jonathan Poneman

Matt Ramerman

Mike Reed

Shawn Roberts

Iam Smethurst

William Wurts

Directors Emeritus

Bill Bell

Gov. Daniel J. Evans

Nancy Evans

Gov. Booth Gardner

(deceased)

Hal Newsom

(deceased)

Priscilla Tanase

Executive Director

Steve Wright, MPA

Deputy Director

Melissa Tribelhorn, MPA

Finance Director

Virgil Sweeney

Development Director

Angela Rickard

Social Services Manager

Maria Cole, MSW, LICSW

Communications Specialist

Meleah Roy

co-founded by the popular actor, who revealed he had Parkinson’s in 1998.

Across the world, employees who work on Lydon’s teams in Australia and Singapore have joined efforts to raise money for their local foundations.

Lydon had an early sign of the disease long before he realized what it meant. He noticed a stiffness in his right shoulder. His doctor figured it was a remnant of young-er days playing football and rugby, and prescribed physical therapy that didn’t really seem to help.

Three years later, at a regular checkup, Lydon told his doctor he’d started losing coordination in his right hand. It slowed his typing and forced him to take fre-quent breaks from the keyboard.

The doctor whisked him upstairs to see a neurologist, who had Lydon walk down the hallway, then touch each fingertip to his thumb in succession. Lydon thought maybe a pinched nerve was the reason he struggled to get his fingers to cooperate.

“We went into his office, and he looked at me and said, ‘I’m sorry to tell you, but you have Parkinson’s,’” Lydon recalls. “It just hit like a ton of bricks.”

The doctor could tell by the way Lydon’s right arm didn’t swing when he walked, but he also recognized the disease as soon as they first spoke. Lydon’s face lacked virtually any trace of emotion, a symptom involving the motor impairment of facial muscles that’s sometimes called “the mask of Parkinson’s.”

Lydon listened as the doctor explained some of the de-tails — that it was a progressive disorder of the nervous system with no cure — and then asked him to leave the room. Alone, he fell apart.

“I just cried and thought, ‘Life is over. How am I going to support the kids? How long can I work? I’m going to end up in a wheelchair, unable to take care of myself,’” he recalls. “You immediately go to the end of Parkin-son’s, not the journey between now and then.”

He told his wife that day, but he wouldn’t feel strong enough to tell his three kids without being “a basket case” for nearly two years — and he didn’t want anyone to know until they did.

So in secret, he tried to learn all he could; a Bing search led him to Northwest Parkinson’s Foundation. “I called them up and said, ‘Help,’” he recalls. “And they started helping.”

The organization connected him with a specialist, gave him advice on managing his condition and helped him begin to move forward. It put him in touch with other people who also have young-onset Parkinson’s — diagnosed before age 50 — including other execs at well-known companies.

Medication has since helped with some of the symp-toms, including the tremors and limited facial expres-sions.

Lydon began exploring what he could do to help the nonprofits about a year ago. He sat down with Wright and learned that Northwest Parkinson’s Foundation had major problems with its technology infrastructure. Wright says Lydon got him help “within the hour.”

Lydon connected the foundation with Microsoft’s Tech Talent for Good program, which meant five or six Micro-soft employees would solve the tech problems for free — and Microsoft would match their volunteer hours with a cash donation, which struck Wright as almost “too good to be true.”

Happy New Year! I’m certain you’re going to be as excited as I am with the programs and education opportunities we’re offering in 2016.

At last year’s HOPE Conference we offered an online broadcast of the day’s speakers. The recording now lives online at www.parkinsonshope.org. The feedback was overwhelmingly positive with nearly 1,000 folks tuning in. You also asked us for more.

In 2016, folks around the region (and around the world) can join us for Online Presentations of our major education conferences, such as HOPE, as well as a monthly Mindfulness broadcast directly to your computer screen. The internet is making our world smaller and we want to reach you in your home

where you are comfortable and warm.

We will also be making a huge announcement this Winter regarding programming in Eastern Wash-ington, Idaho and Montana. Keep your eyes on our website for more information as this news becomes available.

I want to thank my wonderful team who works tire-lessly to offer you these amazing opportinutues to improve your quality of life. Melissa, Angela, Virgil, Maria and Meleah - if you haven’t met them, please reach out. They are a talented and smart group of dedicated folks.

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

| WINTER 2016 | page 3

Interested in joining the MAC?

Please contact Melissa Tribelhorn at

melissa@nwpf.org

Lydon and Wright continued to meet regularly, discussing ways to improve the foundation’s website, raise money and reach other big goals — all efforts that are being strengthened by the many employees Lydon has inspired to join the effort.

“The people who work for him love him,” Wright says. “They really want to do something nice. They want to help. You don’t see that all the time.”

Lydon and Wright recently began working with a team of college students from Greece who won the Ability Award in Mic-rosoft’s 2015 Imagine Cup competition. Team Prognosis created an app aimed at detecting Parkinson’s disease early based on voice characteristics.

The team had been working to improve their algorithms but didn’t have a way to capture enough voice samples of people who have the disease. Northwest Parkinson’s Foun-dation’s reach will help them collect thousands, Lydon says, which breaks down a major hurdle for the grateful students.

Among his colleagues, Lydon’s courage to share his diagnosis so broadly and the emotion that crept into his voice that day were “a call to action for a lot of us to just get involved,” says Kim Farmer, a search sales manager. “It made Parkinson’s personal.”

She met with Wright just two days after Lydon’s disclosure to ask what she could do.

Farmer and about eight colleagues helped the foundation with its annual auction Oct. 24. Lydon didn’t even know until he showed up at the event and spotted them working away on a Saturday. At the end of the evening, the volunteers were already discussing how they could improve their efforts to run the silent auction portion of the event next year.

“Everybody was bought in to coming back, and putting together systems and processes so that we could be more efficient — which is totally the Microsoft way to do things,” Farmer says.

Lynne Kjolso, general manager of Search Sales in the Americas, and other Microsoft employees gave up a Saturday to volunteer at the foundation’s tenth annual HOPE Conference, escorting attendees from the parking garage and assisting people with mobility challenges.

“Matt’s story is super inspiring. It’s a very difficult disease, and he’s made it very, very real for all of us in terms of what the day-to-day struggles are, and what the long-term prognosis and hopes are,” Kjolso says.

“The reason I volunteer, and the reason I give, is to honor Matt and help build some momentum behind the cause.”

Still other Microsoft employees have joined Lydon’s work with the Michael J. Fox Foundation. Four will analyze the organization’s code and server setup to help boost its website’s speed and stability; Lydon also brought in someone from Bing who will help the foundation get more web traffic.

“Getting this kind of in-kind consulting service and access to expertise can really have a big impact for us,

given that technology isn’t our core business,” Deborah W. Brooks, who co-founded the nonprofit with Michael J. Fox. “He really was enthusiastic about finding a smart place to start.”

Brooks is excited about the “great promise” of projects that are just getting started. She came to Seattle to meet with Lydon in July, roughly a month before he made his diagnosis widely known, and was struck by his passion and commitment.

“Getting a diagnosis like Parkinson’s is obviously, in many ways, a life changing event. Not everybody feels immediately comfortable or is in the position to take actions in such a public and impactful way,” Brooks says. “His making that choice is already important and special.”

McGovern says it’s no surprise that so many people at Microsoft have rallied around Lydon and his commitment to make a difference. She thinks it stems from his strengths as a manager, from the trust he puts in his team to his humor that often lightens tense moments.

“He really encourages people to find out what they’re passionate about and supports them. That’s one of the things that really sets him apart as a leader,” McGovern says. “I think people just want to reciprocate that.”

Originally published on Microsoft News Center (news.microsoft.com)

Portrait photography by Scott Eklund/Red Box Pictures

| WINTER 2016 | page 4

The Whole View of Parkinson’s Through a Heart of Mindfulness & KindnessBY B. BARTJA WACHTEL, LICSW, MHP, Mindful Self-Compassion Trained Teacher Engaging Mindfulness | Forging Meaning, LLC www.emfm.net

“...healing is a transformation of view rather than cure. It involves recognizing your intrinsic wholeness and, simultaneously, your interconnected-ness to everything else. Above all, it involves learning to feel at home and at peace within yourself.” -- Jon Kabat-Zinn, Full Catastrophe Living

“What?! Now you’re asking me to be kind to myself on top of everything else I’m dealing with?” he said as tears began welling up in his eyes, along with some laughter by both of us. Breathing in compassion for myself and then out for him, I said, “This is not one more thing to add to your list of things to do, or expectations of who you ‘should’ be. What I am asking you to consider--just for this one moment--is to become aware of your anger when you drop your medications on the floor or self-judgment for having the ‘nerve’ to make mistakes, or that your body is just not cooperating. What might it be like to send yourself kindness in that moment, for being a fallible human being?” “I have no idea,” he said, “but it sure does sound nice, because I am really hard on myself.”

And we are, very hard on ourselves, even in the best of circum-

stances. In 2001 a team of brain researchers lead by Dr. Marcus Raichle discovered a network that lies through the midline of the brain, and he coined the term, “Default Mode Network.” This part of the brain is highly active when we have down-time or are in states of rest. Essentially, if we place any human being in a room by themselves the first thing the mind does is to project the “self” into the past and future looking for problems and then ruminates on the problems, looking for solutions. The reality is that we often turn that reaction on ourselves, and when we are contending with chronic illness, we often have a stream of unrealistic expectations of perfection, self-criticism and self-judgment. So, not only is a person living with Parkinson’s contending with their usual self-judg-ment, but now things are tangibly not working cognitively or

The Poetry of Gary VallatI’ve always had this fascination with words. They are such powerful tools that gather us together and send us on journeys of discovery. I started writing poetry in high school and never stopped. Those early poems disappeared in the dust of many moves. Only later did the muse show up disguised as a Girl Scout cookie mom to open the door to the daydreaming wilderness memory of poems. Since that fateful day I’ve been hooked waiting for her next unscheduled visit. You might say I’m shaking with anticipation or maybe that’s just my tremor.-- Gary Vallat

SurrenderIf you’re going to drink wineand walk at the same time best you not have Parkinson’s.

It’s the night after our last perfor-mance we gather to celebrate. Spontaneous song rides the eve-ning breeze. We sit on the decksipping wine share intimate and public memories as the sun goes downand spirits rise.

The call goes out to gather our shared luck of the pot. On the way I happen to glance down and wonder at the Red Sea and then I realize it’s the contents

of my wine glass liberally distributed across the floor.

My tremor detector failed to warn me of the 8.2 quake that rose up from the shifting Parktonic plates. A no-fault earthquake. I respond with paper towels grateful it didn’t spill on the carpet, shirt or shorts.

I have thought a lot about how to counter these mini disastersbut it requires anti gravity which is still under developmentand St. Andreas hasn’t been responding.

So I will surrender fill my glass less full, and carry a big rag.

WordsWords weave nests of straw and gossip bridge between what is remem-beredand what is unknown.

Words are laborers who con-structlofty structuressoar beyond pedestrian tasksthat try to confine the reach of their meaning.

Words leave the nest release imagination hungry to discover what makes us more real.

Words are the cloakwe wrap around usto hide the soft underbellyof our doubt, our fear.

Words are chantsthat welcome or reject what does not make sense.

Oh words, long have I served youlong have you served meuntil the message we createtogether goes beyondmeaning

and we are free at last.

| WINTER 2016 | page 5

physically--in a way that is measurable. The internalized message is that you now have undisputable ‘proof’ that you are somehow “broken,” “damaged,” “worthless” and any number of other de-moralizing beliefs about yourself.

Dr. Paul Gilbert, who developed Compassion-Focused Therapy, found that when we criticize ourselves we tap into our autonomic nervous system, also known as the “threat-defense system.” So, just like a being attacked by a predator, we feel this same way on a sustained basis, but there is no predator, only the mind caught in a ceaseless loop of self-judgment. We are both the predator and the prey. Our threat-defense systems gets activated and we over-identify with our thoughts and experiences, or ‘check-out’, self-isolate and disconnect from our bodies, and we become highly self-critical. This is a moment of suffering! The stress of this kind of reactivity have both emotional and physiological con-sequences. It literally destroys cells in our body and impacts our physical and emotional health. We are built for survival, but not so much for happiness.

This does not mean you are ‘bad’ or have done something wrong. This is what the mind does. However, it is unhelpful enough that people sustain the very real pain of having a progressive neurolog-ical condition--and then, on top of everything else--pile on this level of unnecessary suffering. Can we bring more than reaction to our experience, maybe bringing wise attention to our pain, and then respond? It is very possible to cultivate this way of relating to our experiences of pain.

Dr. Kristen Neff’s research along with the clinical expertise of Dr. Christopher Germer bring to this experience the practices of Mindful Self-Compassion (MSC), an 8-Week course developed through The Center for Mindful Self-Compassion at the Univer-sity of California San Diego. This program teaches the various practices by which we can attend to the suffering or resistance to pain that supercharges the unchangeable pain that is here despite our best efforts. The research outcomes show MSC impacts on emotional and physical health have been correlated with improve-ments in positive emotional states, better health outcomes and improvements in relationships. MSC is also closely associated with improved overall well-being and quality of life.

My hope for people living with Parkinson’s and their caregivers (let’s not forget about them) is; Can we--in this moment--simply entertain the idea of embodying the practices of mindfulness, common humanity and self-kindness?

What might it be like to notice that we are getting caught up and carried away by our thoughts and feelings--to stop--to place our own hand upon our own body and be with ourselves in a way we may have never thought possible? Can we breathe in a nourish-ing breath, name the difficult emotion that rises to the surface and notice where we feel it most in the body? Can we feel the sooth-ing sensation of exhalation? What might it be like to say what is? This moment is a moment of suffering. Instead of saying it in a rough way, can we say with some tenderness, This is hard?

What might it be like to recognize, Just like me, others suffer in this way. I am not alone? What might it be like to ask ourselves questions that take a little bit of courage? What does this difficult emotion need in this moment? What does the body need in this

moment? What might be the kindest thing I can send myself?

How might this make a difference in the way we relate to ourselves and to our loved ones, the way we feel in the body, in the way we speak to ourselves in our minds? This is not about changing the fact that pain is inevitable, that pain is a part of life. This is about trans-forming the way we relate to pain, having a new and tender relation-ship with what causes us pain, and in doing so, relieving a measure of our suffering.

So, this is not one more thing to add to your list of things to do, or expectations of who you ‘should’ be. What I am asking us, myself included, to consider, is being kind to ourselves as whole human be-ings, just as we are. And I think that is enough. For many of you the pain of life is Parkinson’s and all that comes with it. For many caregiv-ers it is another kind of pain that is complicated by their relationship to the suffering of others or their own health. For me, it is something else. And yet, we are all in this together, in our common humanity. You are still you and doesn’t this tender hearted human being de-serve a little kindness just because you exist and your body tries so hard? I know this is not a cure, but doesn’t it sound like healing, and maybe a better than the alternative?

May you be happy, peaceful, and as healthy as possible. May you be kind to your own tender hearts, and may you find joy and be free from suffering. And in all of this, may you live with a measure of ease.

With Metta (Loving-Kindness), Bartja

Interested in learning more and trying MSC yourself? Stay tuned for a monthly online practice with Bartja! Coming soon on nwpf.org.

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

Mr. Duane Thorson

Dave and Flo Covey Mr. Larry Saunders

Donna Stafford Mrs. Pauline Stern

Ethel Vadnais Ms. Jeanette Peterson

Gloria and Jim Gottesman Susan and Jon Brandler Ellen Chestnut Mrs. Barbara Coe Mrs. Toby Donner Rabbi Aaron Meyer Mr. John Muscatel Pauline and Jack Reiter Mr. Robert Tacher

Jack Benaroya Mette and David Naness

Jonathan Poneman Anonymous Ms. Shawn Nolan

Kelsi Tillou Mr. and Mrs. Henry F. Demko

Kent Langabeer Mr. Tony Bundy Ms. Julie Langabeer

Louis Reagan Ms. Charlotte Pender

Marcie Sewell Ms. M. Laverne Sewell

Mary Skelton Mr. Drew McGougan

Matt Lydon Bing Marketing Team

Mike Mitchell Mrs. Eleanor Clardy

Nancy William Burton Ms. Dorothy Bartlett

Neil Dickinsen Mrs. Doris A. Dickinsen

Patty Harrold Ms. Nancy E. Dorn

Paul Kryska Mrs. Eva Kryska

Ralph Moldauer Ms. Judy Soferman

Robert Timar Ms. Katherine Timar

Susan Wrigley Rev. and Mrs. Richard Gibson

Tom Sexton Ms. M. Laverne Sewell

Woody Norwood Mr. Larry Norwood

Betty Pohlmann Mr. David Lammert

Bill Lorton Ms. Yvonne Beaton Mrs. Janice Sorensen

Charles Rush Mrs. Catherine Ledbetter

Dan Konopaski Ms. Linda Handschy Mrs. Patricia Newhouse

Mr. Sidney Meyers Ms. Renae Mortensen Mr. David Ohrenstein Mr. and Mrs. Manfred Ohrenstein Mrs. Elizabeth Reilly Ms. Linda Roseman Dr. Roger Rosenberg Mr. Mark Sievert Mr. Ivor Silver Mr. Michael Simon Ms. Frances Singer Ms. Betsy Strauss Ms. Diana Turner Mr. Steven Wolfe Mr. Andrew Zall

Mary A. Mitchell Memorial Fund

Margaret (Martie) Philbrick Family Fund

Tina Bell Torrance Family Fund

Alice Sweigert Mrs. Janice Sorensen Ms. Jennifer Sweigert

Bob Richards Mr. and Mrs. Robert R. Richards

Christine Thorson

| WINTER 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

May 1, 2015 - November 15, 2015

FAMILY FUNDS

Alvord Medical Director Fund in Memory of Roger Evans

Mel Bacher Family Fund Ms. Arlene Bacher Mr. and Mrs. Stuart Bacher Ms. Myra Berniker Mr. Joshua Biehn Ms. Barbara Bigelow Mrs. Jane Carlin Mr. Jacob Chapman Mr. Larry Crevin Ms. Megan Dinh Mrs. Courtney Dobrow Dr. Carl Eben Mr. John Foley Mr. Jeff Gale Mrs. Ruth Goldenberg Mr. Peter Goodman Mr. and Mrs. Donald I. Grande Mr. Jack Hecht Mr. Timothy Holmes Mr. Robert Johnston Mrs. Judith Kadens Mrs. Debbie Karlinsky Mr. Larry Kaufman Mr. Guy Knox Mrs. Donna Kooler Ms. Wendy Lerner Mrs. Michelle McKay Mr. and Mrs. Alvin G. Medvin

IN HONOR

IN MEMORY

David McDonald Mrs. Jerri Beebe

Dennis Franks Mrs. Joan Van Auken Mr. William Rankin

Ed Ewell Mrs. Jacquie Ewell

Ed Kallas Mr. and Mrs. Wally Moerer

Elaine Birn Mr. Marvin Coe

Ellen Melton Parkinson’s Support Group in Boise

Ervin Jurgens Ms. Vicki Stephenson

Franklin “Johnny” Pinkston Mr. Frederick Frazier

Fred Van Ieperen Ms. Peggy Van Ieperen

Gerald Menard Mrs. Carol Dieckman

Hal Newsom Joanie Arnold Mrs. Helen Crum Mrs. Katherine Dobbs The Hagen Firm Ms. Shirley Hoag Ms. Marjorie Levar Ms. Christine Marshall Ms. Susan Mucklestone Mrs. Anne Moldrem Bob and Susan Moore Mr. Nathaniel Penrose Margaret and Jim Porter Mr. Brooks Ragen Mr. William Revere Mrs. Ann Scroggs Charlotte Swartz Mrs. Susan Van Leuven Ms. Jane Winton

Harold Minea Mr. Dennis Bailey Mr. Thomas Cebulko Cornish Family Fund of Greater Cincinnati Mr. Todd Graham Ms. Elizabeth Gormley Mrs. Katherine Maehren Ms. Patricia Miller Ms. Linda Minea Mrs. Joan Otava Mrs. Annette Rockwell

Henry Alexander Mr. Raymond Breazeale Mr. Don Brown Mr. Stephen Pratt

James Nisula Chatterbox Pediatric Thera-py Center

James R. William Marilyn Williams

Jeannie Kelly Mr. John A. Kelly

Jerry Vanecek BJ Hayes and Family

Jim Lockwood Beverley and Ron Parsons

John Gale Mrs. Susan Hoenig

Kathleen Myhre Mr. Glenn M. Myhre

Leo Yanoff Mr. Marvin Coe

Marlin Casteel Mr. Ken Knothe

Merilyn Parkinson Jean Garber Ken and Marissa Hughes

The Office of Dr. Joe Mecca Mr. John Parkinson Mr. and Mrs. Henry T. Platz III Plywood Supply Inc Dale and Jolene Schuer-man Mrs. Anne Superfisky Mr. Donald Wood

Mitch Levy Ross Webb

Norman H. Pratt, Jr. Mr. Stephen Pratt

Pat Staples Anonymous Mrs. Judee Babington Ms. Rochelle Celmer Mr. A. Bruce Cleveland Devan Cook Mr. Robert Crawford Mr. Joseph Harbacheck Mrs. Helen Lammey Laureate Delta Chapter Beta Sigma Phi Ms. Phyllis Turco Mr. Steve Wurster Mrs. Janet Yerrington Mrs. Susie Yerrington

R. Wayne Hunter Mr. and Mrs. Jeffrey Fehr

Rich Perkins Mrs. Janis Collum Ms. Wanda Rohm

Robert Jorgensen Ms. Janet B. Zema

Sandra Giste Mrs. Susan Bauthues Mrs. Eula Little

Shirley Underbrink Ken and Janet Ramsey Margaret Williamson

Stuart Moldrem Mrs. Elsa Brodin Mrs. Anne Moldrem

Ted Cardew Mr. and Mrs. Douglas W. Lowell

Ted Leonardi Mr. Cory Leonardi

Vaughn Gordon Mr. and Mrs. Norm Nelson

Wayne Uht Mr. Michael Hibbard

William Hanley Ben and Ron Parsons

William Hansen Mr. Al Nyhus South Tacoma Mazda

A Unique Parkinson’s Network: Ross Webb’s StoryBY MELEAH ROY NWPF Staff

Ross Webb was diagnosed with Parkinson’s in 2009. Looking back now, he admits there were signs long before his diagnosis. His loved ones be-gan noticing subtle symptoms at least two years prior. He was surprised by the diagnosis until he learned of the genetic component in some cases. Ross’ mother also had Parkinson’s.

“Even though I’ve had it for seven years now, I’ve been blessed with the fact that the medications and a lot of exercise have really helped me out a lot.”

Any given week, Ross is headed to at least four Parkinson’s movement classes. He attends physical therapy twice a week at the Booth Gardner Parkinson’s Care Center and Dance for PD® in Kirkland. He sings with the Tremolos Choir and bikes with Pedaling for Parkinson’s. Ross keeps up the busy schedule because it helps him feel better both physically and mentally.

“I might go into an exercise class feeling dog-tired and I can’t move very fast. But I get in there and I do it. At the end of the class I’m always feeling better.”

Each class addresses different symptoms of Ross’s PD. For example, the Tremolos Choir helps with the volume and strength of his voice and Dance for PD® helps Ross’s balance and coordination.

“We have people in Dance for PD® in wheelchairs and walkers, but by the time the 90 minutes is up, they’re moving across the floor, maybe wiggling their toes or their hands because the class gets them moving. It’s a type of exercise they can do that helps them out. It’s encouraging to see.”

Ross meets people who have recently been diagnosed who don’t feel they can do anything. “But that’s the worst thing you can do,” he says. “You need to get out there, exercise and do whatever you can.”

Another way Ross stays involved in the PD community is by leading a Men’s Parkinson’s Support Group at EvergreenHealth. The group has a core of a dozen men and a roster of 50 who have come since the group’s inception in 2008. The group was created by Mitch Levy with support from Dr. Jeff Shaw. Mitch, who passed away in 2014, had a vision which stemmed from attending co-ed support groups where men were less likely to share. Says Ross, “If we don’t share more deeply and run the risk of showing our vulnerability, we won’t get much out of our meeting together.”

Mitch hoped the group of guys would begin to trust each other and bond over their shared interests, not just their PD diagnoses. Ross’s full sched-ule is a testament to Mitch’s vision. They get together outside their formal support group meetings to see a movie or have brunch. Every year, they organize a Valentine’s dinner for their wives.

“A lot of the guys in my support group are also in the exercise classes. We’ve become really close.”

Ross finds the men in the support group are able to share about their symptoms and how they are feeling. At first, Ross was apprehensive about opening up. But over time, he adjusted to the pro-cess and now he’s the one encouraging new members to talk.

“It’s been an outstanding source of support for me to get to know other men who have the same sorts of challenges I do.”

The Men’s Parkinson’s Support Group meets on the second Tuesday of every month at 3pm at EvergreenHealth’s DeYoung Pavilion. For more information, please contact EvergreenHealth Neuropsychologi-cal Services at 425-899-3140.

| WINTER 2016 | page 7

We’re moving!As of February 1, 2016, please find us at

Northwest Parkinson’s Foundation7525 SE 24th Street

Suite 300Mercer Island, WA 98040

Courtesy of Ross Webb

My Degeneration: A Journey Through Parkinson’s by Peter Dunlap-ShohlREVIEW BY PETER G. BEIDLERPeter Dunlap-Shohl was an editorial cartoonist, one of those journal-ists who draw witty caricatures of people in the news, usually making fun of them. Then, at age 43, the real fun began for Peter. He was diagnosed with early-onset Parkinson’s Disease. He discovered the fun of having trouble tying his shoes, the fun of hearing his doctor say “You have Parkinson’s Disease,” the fun of words like “progressive,” “disabling,” and “incurable,” the fun of finding out some of what lay ahead for him: loss of fine and gross motor skills, impaired ability to speak and swallow, loss of balance, and so on.

What did Peter do? He did what most of us do. He did what I call “futurize”: he looked ahead and saw his life savings depleted by expensive doctors, nurses, and pharmaceutical bills, saw his family burdened by the care of a useless hunched, drooling, incontinent, wheelchair-trapped, twitching body. He flirted with suicide as a solution to the problem of a Parkinson’s diagnosis. He decided to jog in a woods hoping to be attacked and killed by a bear.

But then, like most of us, he came to his senses, listened to what his neurologist told him about diet, medicines, exercise, and support groups, listened to the soothing and sensible words of his spouse. He learned new meanings for old terms like “posture,” “freezing,” “tremor.” He learned brand new vocabulary words like “bradykinesia,” “dystonia,” “levodopa.” He learned that Parkinson’s is a designer dis-ease, different for each of us. He learned that certain things are good for all of us, like exercise, a Mediterranean diet, a positive attitude, and

| WINTER 2016 | page 8

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finding a congenial support group. And then he did what most of us do: he went to work to make a good life for himself and his family despite his diagnosis.

Peter exercised. He took his meds at the designated times. He continued to do things he enjoys, like camping. And he found a way to continue, at least for a time, his job at the newspaper. How does a witty editorial cartoonist whose hands shake so much that he cannot draw continue his job? He learned a computer program that let him continue to do his editorial cartoon-ing. Fortunately for us, Peter decided to branch out from editorial cartooning and tell the story of his life with Parkinson’s in a witty, colorful, and, yes, fun cartoon narrative. The result looks a little like a comic book, but it is longer and more serious than a comic book. It looks a little like a graphic novel, but it is not fiction and is mostly pictures, not prose. It is best described as an illustrated autobiographical essay, the theme of which is, “I found a way to live with Parkinson’s. You can too. And don’t forget to be grateful.”

The essay, narrated mostly through cartoon pictures with captions, is com-pelling. The main character, Peter, appears in almost every cartoon frame. Each chapter title suggests the author’s growth in the course of his disease.

My own favorites are Chapters 3 and 6. In Chapter 3, “Interview with a Kill-er,” Peter conducts an interview in his home with a sinister green-faced man named Parkinson’s. Peter tells Parkinson’s that lots of scientists are working hard “to nail you in a coffin.” Parkinson’s replies, “Hah! Good one! How many times have I heard people boast that I’ll be gone in ten years?” (25). Peter then asks, “What do you want from me?” Parkinson’s reply comes with a confident smirk: “Everything. Everything it has taken you a lifetime to acquire, to learn, from buttoning your shirt to making music, your ability to talk, to write legibly, even your ability to communicate non-verbally, to smile, to arch a brow. Whatever you enjoy, your work, your income, your time, your marriage, your family. I want it all, your entire self, the physical and the emo-tional” (26). Then an angry-faced Parkinson’s shakes his fist and says, “But here is all you need to know on the subject of me. I am Parkinson’s Disease!

The thug who is going to kick your pathetic ass and leave it for the crows!” (28). Finally, Parkinson’s leaves, but with these parting words: “Don’t worry. I’ll be back” (29). Grim stuff.

But things get better for Peter — and worse. He finds a way to keep working for awhile, until he goes out on disability. But enough good things happen that he is able to conclude that “I am one of the lucky of the unlucky.” He learns to appreciate what he calls “the finer miseries of Parkinson’s.”

In Chapter 6, “Island of the Caring and the Competent,” the once misanthropic and

cynical cartoonist whose job it was to make people look evil and stupid is shipwrecked on an island peopled by good smart people who are out to help him. They help him get Deep Brain Stimulation. They help him to understand that many, many good people, including those at the NWPF, are working hard to help him and others like him. He comes to appreciate “the many researchers, caregivers, front-line neurologists, Parkinson’s ad-vocates, and family members. People who pour their skills, creativity, and passion into solving the endless riddles of Parkinson’s Disease. We can’t yet celebrate a cure, but we sure should celebrate the people who bring the inevitability of that cure closer though their dedication, talent, and hard work.”

That sounds a bit cheerleaderish, especially in a book entitled My Degen-eration, but Peter speaks for us all when he finds a way to say “thank you.”

- Review by Peter G. Beidler

Interested in reading My Degeneration? Call NWPF to borrow it from our Lending Library or purchase your own copy on amazon.com.

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