PRO Newsletter - March/April 2016

MARCH/APRIL 2016 MORE INFO! (800) 426-6806 - WWW.PARKINSONSRESOURCES.ORG PAGE 1

THE PARKINSON’SPERSPECTIVENewsletter

Volume 36, Issue 2 Mach/April 2016 Serving OR and S. WA

EDUCATE. INSPIRE. EMPOWERPARKINSON’S SPRING CONFERENCES 2016. MEDFORD, EUGENE, AND BEND!

Medford: Saturday, March 19, 1-5 p.m. (check-in begins at noon)

“More than Movement: Challenges and Treatments of Non-Motor Symptoms” Eric Lee, D.O., is a neurologist at Asante Medical Center. He believes Parkinson’s disease involves many parts of the body and that each needs to be addressed individually. Dr. Lee will discuss how to help manage these individual needs and troubling non-motor symptoms.

“Cognitive Changes in PD” Joseph Quinn, M.D., is a movement disorder specialist and medical director of the OHSU Parkinson’s Center. Dr. Quinn will share his insight on

how Parkinson’s can affect thinking and memory, and will give treatment options to help families cope.

“Learn to Be Loud” Richard DeWitt, S.L.P., holds a master’s degree in speech and language pathology and currently works with Parkinson’s patients. Rich will discuss and demonstrate the benefits of using Lee Silverman’s LOUD Therapy.

Eugene: Sunday, April 10, noon-4 p.m. (check-in begins at 11 a.m.)

“Complementarity and Alternative Therapies in PD” Lynne Shinto, N.D., M.P.H., is a naturopathic doctor at OHSU

with a focus on neurologic disorders. Dr. Shinto will assess alternative treatments for Parkinson’s disease wellness and review research and evidence behind these therapies.

“If I Can Climb Mt. Kilimanjaro, Why Can’t I Brush My Teeth?” Three years after her diagnosis, at the age of 65, Nan Little, Ph.D., stood on top of Mt. Kilimanjaro, and she invites you to join her PD journey! Discover how courage, tenacity, and love meet PD!

“Update of PD Treatment: Above & Beyond Meds” Suketu Khandhar, M.D., is a movement disorder specialist and medical director at Kaiser Permanente.

With over 35 years of service, Parkinson’s Resources of Oregon

(PRO) supports more than 10,000 clients by providing support

groups, exercise classes, and educational events. We are

happy to announce that PRO is offering three local education

conferences this spring featuring exciting and dynamic

speakers. Join us for one or all three of these annual events!

MedfordSaturday, March 19, 1-5 p.m.

EugeneSunday, April 10, 12-4 p.m.

BendSaturday, May 14, 1-5 p.m.

(continued on page 3)


PRO is governed by a volunteer Board of Directors comprised of community members with an interest and passion

for serving the PD community.

BOARD OF DIRECTORS

Ian SmethurstBoard President

Greg MooreTreasurer

Lucien Burke, M.D1st Vice President

Kristin WhitneySecretary

Directors at Large:Greg ChailleSusan Flad

George GregoresHank Grootendorst

Gerald HulsmanBarney Hyde

Larry JacobsonPaul Labby

Ryland MooreKay Parr

Joseph Quinn, MDDerek Ranta

Richard Rosenbaum, MDJustin Smith

Kelly SweeneyPeggy Wood

Officers:

SAVE THE DATE!

The concert lineup includes popular national and local musicians, including Portland’s own Anne Weiss; Bre Gregg; hip, up-and-coming duo Nathan Earle and Juliet Howard; and special guest Nancy Devine.

They will perform songs from Linda Ronstadt’s eclectic and extensive repertoire.

Ronstadt was diagnosed with Parkinson’s disease several years ago. Her vocal artistry has been beloved by musicians and fans across the U.S. and the world.

Where: Alberta Rose Theatre 3000 NE Alberta St., Portland, OregonWhen: Saturday, April 30, 2016 — doors open at 7 p.m.Price: $22 general admission; $30 VIP seating

Tickets: www.albertarosetheatre.com Food and beverages available for purchase

**All ages welcome when accompanied by an adult**

ANNOUNCING THE 2ND ANNUAL “HEART LIKE A WHEEL” LINDA RONSTADT TRIBUTE CONCERT TO BENEFIT PRO

CALL FOR VOLUNTEERS!Please send us an email or give us a call if you would like to serve on the planning committee for one of the Sole Support for Parkinson’s walks in 2016. We are looking for volunteers to come forward in Portland, Eugene, and Vancouver! (Medford is taking a year off, but let us know if you would like to help plan a summer picnic.) Local planning committees will meet approximately monthly, with increasing frequency as we get closer to the September/October walk season.

To raise your hand for this or other PRO volunteer opportunities, contact Ginger at 800.426.6806 or email her at [email protected].

PAIN IN PARKINSON’S DISEASEThe Parkinson’s Center at Oregon Health & Sciences University (OHSU) is conducting a study to better understand pain in people with Parkinson’s disease. We are recruiting healthy controls and people with Parkinson’s. Participants will complete several questionnaires about their medical history and painful symptoms followed by a onetime visit to our testing center lasting two to three hours. Testing involves the delivery of mildly hot and cold stimuli to

the arms. Subjects who complete the study will receive $80 for their time. There is no obligation to participate, and participation will not affect your medical care in any way. This study has been approved by the OHSU Institutional Review Board.

If you are interested in participating or have further questions, please contact Keiran Tuck, M.D., or Eric Serres, R.A., at 503.494.7230.


PRO-VIDER PRO-FILEby Heather Balducci, LCSW

Each of our support groups at PRO is led by a dedicated volunteer facilitator. Here are the stories of two of these inspiring individuals, both of whom are completing their tenure as group facilitators and have a great deal of insight and wisdom to share. Patty Brost Patty worked as a nurse for 38 years at Legacy’s Mount Hood Medical Center in Gresham. She has been involved with the Gresham Support Group since the late ’80s, and has shown an exceptional dedication to improving resources for seniors and those with disabilities through involvement on the board at Ride Connection and Gresham Senior Center. She has also assumed leading roles in Elders in Action and the East County Senior Coalition. As a facilitator, she has helped create a lasting community of people with Parkinson’s and has also brought in a host of fantastic educational speakers through her connections. What led you to become a facilitator?

Patty: I started helping with the group in the late ’80s; I was setting up chairs and getting things organized with the group. It all just kind of worked out, since the facilitator at the time needed to step away from the role. I knew it was an important group to keep going, since there weren’t many Parkinson’s support groups at the time and people were coming to the group from all over the Portland metro area.

What is a special memory of an experience in group?

Patty: I can think of several times when people came to the group and discovered that they have a friend there who is also diagnosed with Parkinson’s. It’s neat when they realize, “I’m not the only one with this disease.” Also, our group likes to keep track of those who can’t come to the

group anymore. We like to keep in contact with those folks so that they know they’re supported and we care about them.

If you had one thing to say to someone considering going to a support group, what would it be?

Patty: Go! Find out at the group how it operates, meet other people, and open yourself up to encouragement from others at the group.

What have you learned about yourself through being a facilitator?

Patty: I’ve learned that I have some special “people skills” in handling groups of people. I have developed a sense of how to get people to talk or share about their situation and help one another. Bev Mickelson

Prior to her retirement, Bev had an extensive career in health promotion, teaching health and physical education and coaching basketball outside of Chicago. She received a master’s degree in adult fitness and cardiac rehabilitation and used her education and experience to teach classes in balance, agility, and flexibility to older adults in retirement communities. Bev describes her experience as “coming full circle,” as after her diagnosis of PD in 2008, she moved to Laurelhurst Village Assisted Living and began to participate in the types of activities that she had once taught. As a facilitator of the Laurelhurst group for the past three plus years, she has helped develop a community of thoughtful conversation, mutual support, and Parkinson’s advocacy.

What led you to become a facilitator?

Bev: I just moved into Laurelhurst Village, and a staff member asked me if I would start a support group. I had been diagnosed myself and wanted to get involved.

What is special about working with people with PD?

Bev: PD is a very difficult and debilitating disease that gets worse as time goes on. We must face each day as it comes and hold onto the support of others when we need it. At times, we feel like we’re trapped in our own body and we try to work our way out with the support of others in the group. Also, it’s fun to watch others get the motivation to exercise and start getting better little by little.

What is a special memory of an experience in group?

Bev: One was when two members passed away within a short time period. The reality hit us hard that we are just one step away from severe difficulties. As a group, we had to face how we would cope. Two: After three years, we finally gave our group a name: the Parkinson’s Avengers! We were proud of ourselves for coming up with a name.

If you had one thing to say to someone considering going to a support group, what would it be?

Bev: Just go! This is where you find your answers to most of the questions you have about living with PD. It is in a very relaxing, supportive, and open environment.

(Bev Mickelson)


COMMUNICATION SKILLS PROGRAMSTARTING IN MARCH

A large percentage of people with PD have changes in their speech, voice and swallowing at some point during the course of the disease. Symptoms might include a soft voice, mumbled or fast speech, loss of facial expression and problems communicating.

Most people get the best improvement with speech and swallowing when medications are paired with practice and exercises. That is why Parkinson’s Resources of Oregon offers this program for those who would like to improve their speech and communication. A certified speech and language pathologist instructs our groups with activities, exercises, and discussions.

This program is not meant to replace speech therapy, but is a safe place to learn and practice new communication skills and memory strategies. It is appropriate

for those who have completed the Lee Silverman Voice Treatment, (LSVT) as well as those who haven’t.

Classes begin March 3rd in Eugene, March 7th in Portland, and watch for a new program starting this spring in Bend!

CREATIVITY PROGRAM & ART EXHIBITMARCH 6TH IN EUGENE

If creativity brings one joy and eases the burden of our everyday journey, I say, “Let’s all take art classes!” ~ Anonymous

Join us for an art exhibit. Meet our talented community of local artists displaying their work. All the artists will share a story about their journey with Parkinson’s disease and how it has influenced their creativity in surprising ways. Wine & cheese will be served. Open to the community!

LEGAL ISSUES AND PLANNING FOR PDAPRIL 21ST, LEGACY MT. HOOD

Living with Parkinson’s is almost by definition living with uncertainty. Questions arise immediately after diagnoses that can lend to anxiety… questions about long term finances, care considerations, rights and responsibilities.

Join us as we welcome Garvin Reiter back for a comprehensive discussion of legal tools and steps you can take to plan now for your own needs and future.

OTHER EVENTSOHSU PARKINSON CENTER PRESENTS INSIGHTS & INSPIRATIONSYoung Onset Parkinson Disease ConferenceAn event for people 60 and younger with Parkinson’s disease and their loved ones SATURDAY, MARCH 5, 20169:30 am - 4:30 pmMittleman Jewish Community Center, Portland, Oregon KeynoteToday & Beyond:Treatment & Research in Parkinson’s DiseaseMatthew Brodsky, MD OHSU Parkinson Specialist Registration Now Openhttp://tinyurl.com/ohsu-i-i$25 / per person

CALENDAR OF EVENTSDETAILS AND REGISTRATION INFORMATION CAN BE FOUND AT

WWW.PRO.EVENTBRITE.COM UNLESS OTHERWISE NOTED.

We will follow the yellow brick road, celebrating the “courage” of PRO’s clients, the “brain” of local experts and resources, the “heart” of this organization dedicated to improving the quality of life for those facing this disease, and the “magic” of our supporters who make this work possible.

The PRO Gala is an uplifting experience. Gather your friends, family, and colleagues to join us!

Visit www.progala.org for tickets or to view our auction preview, including packages like a one-week stay in a spectacular Cancun resort or an exclusive dinner for 10 at Portland’s highest-rated wine bar, Pour.

Questions? Have an item to donate? Call us at 800.426.6806.

THERE’S NO PLACE LIKE PROGET YOUR TICKETS FOR OUR 7TH ANNUAL CELEBRATE HOPE GALA & AUCTION!

APRIL 29, 2016 - SENTINEL, DOWNTOWN PORTLAND


For many of us, making a sizable investment in an organization that is dear to our hearts feels beyond the limits of our restricted income. After receiving interest and feedback from our supporters, we’ve found ways to make this easier and gentler. Please consider joining me in the following commitments I’ve made to PRO:

1. Set it and forget it! Set up an automatic withdrawal from your bank account that can go either through your credit/debit card or directly from your checking account. Imagine, with just $10/month you’ll have invested $120 by year’s end! To set up a withdrawal from your checking account, simply complete and return the form below.

2. Give while you get! Link your Fred Meyer rewards card to PRO and a percentage of your sales will be donated to us! Get started with the easy steps at http://tinyurl.com/fredmeyer4PRO.

3. Shop, Support, Smile! AmazonSmile is a simple way to support PRO every time you shop, at no cost! When you shop at smile.amazon.com, you’ll find the exact same prices and shopping experience as Amazon.com, with the added bonus that Amazon will donate a portion of the purchase price to PRO!

To learn more, call our office and speak with Ginger at 800.426.6806.

He visits us from Northern California to offer his insight into new medications and surgical treatments.

Bend: Saturday, May 14, 1-5 p.m. (check-in begins at noon)

“Nutrition and PD” Angela Senders, N.D., is the assistant dean of the School of Research & Graduate Studies at the National College of Natural Medicine. Dr. Senders will discuss the importance that nutrition plays in the body and how food may affect people with

Parkinson’s disease. “Changing Our Relationship to PD Through Mindfulness” John Lenkin, a teacher of mindful self-compassion, will demonstrate practical skills for reducing stress, cultivating resilience, and sustaining life’s fulfillment while facing the challenges of Parkinson’s disease.

“Improving Quality of Life by Tackling Non-Motor Symptoms” Richard Rosenbaum, M.D., specializes in the care and treatment of individuals with Parkinson’s disease

through the Portland Parkinson’s Program. Discover how non-motor symptoms can manifest and the treatment options that can help improve quality of life.

Limited seatingRegister today!800.426.6806 or www.pro.eventbrite.com

EDUCATE. INSPIRE. EMPOWERCONTINUED FROM PAGE 1 - PARKINSON’S SPRING CONFERENCES 2016. MEDFORD, EUGENE, AND BEND!

MONTHLY GIVINGEASY AS 1, 2, 3!

Educational support provided by:


TAKING CARERESERVOIR DOGS, JANE MANCHEE

Four years ago when our beloved Labrador Jera died, I asked that I not be given a surprise pup for Christmas as I wasn’t sure how another dog would fit into our lives — especially as Joe’s Parkinson’s symptoms were beginning to be a noticeable element of our daily lives. But by February I was pining for canine companionship and ready to start looking for another dog. We found a breeder and went to see his pups with the intention of buying a yellow male. When we got there, he told us he only had black males and offered the opportunity to consider a yellow female as well, suggesting that perhaps we’d like to purchase the two of them together.

Hmm, I knew pups required a lot of work, but I had grown up with multiple dogs in my family home at the same time, so I figured we could do it. Joe was intrigued by the possibility of breeding them and earning some extra income down the road, so our family grew by two. I’ve since learned (while writing this column) that Joe had some private reservations and had voiced his concerns to the breeder about the two pups possibly knocking him over. The breeder told him the two of them would focus on each other and not Joe. Despite his apprehension, Joe told me that he went along with getting the dogs because he thought I really wanted them.

Little did we realize or appreciate the very different attitudes we had toward raising dogs, not to mention the consistency required in training, the extra work for me, or critically, the toll they would take on Joe’s energy. There were times when Joe would say he wished we had never gotten them, or that we should send one back, and I’d gently remind him that we would have ended up with the more challenging dog and not benefited from the respite provided by our female. Our male, Jet, is sweet yet large, sometimes overly friendly, and more needy and talkative than our female, Fu, who for the most part is very easy to be around.

I now know, PD or no PD, that I would never raise two puppies again at the same time. It was very difficult to train them simultaneously, and to do it separately took up too much of my time while we were both dealing with the progression of Joe’s PD. I am aware of the toll it took to bring these two young pups into our life, and yet, as they have aged and slightly mellowed, it has gotten easier. They are devoted and loyal, and Joe has grown to love them too. A few weeks ago when I was picking Joe up from his exercise class, he wondered aloud about the possibility of making them official service dogs so we could travel more easily with them. Although it’s a nice thought, we both know he wasn’t serious about it.

For us, we find it best to talk about our fears, as uncomfortable as they may be, and in spite of momentarily heated emotions, to have it out in the open helps to defuse the tension. When we’re faced with a challenge, we first try to determine whether it is real or a red herring hiding a deeper issue. Once we clarify what the real issue is, we try to find a solution that works, and if it doesn’t we try to find another one.

Through our experiences with these dogs, we’re learning that, as with many things in life, the reservoir of goodwill between two people can become depleted when one of them develops a disease that takes most or all of the attention away from nurturing emotional balance. People may shut down as they tend to the disease because it takes a piece of them a bit at a time. Others may try to find a safe distance to which they can withdraw. Sometimes it is anger that surfaces to cover the fear that lies beneath.

Joe and I recognize the need for productive alone time so Joe can refill his reservoir working on projects while I can refill mine by calling Jet and Fu and heading off into the woods. But mostly it is when we talk together candidly and have a better understanding of each other that we both feel the benefits of a reservoir replenished.

Lebanon2nd Wednesday, 1:30 pmPRO, 800.426.6806.

Longview, WA Area3rd Wednesday, 1:45 pmBarbara, 360.423.7012

McMinnville1st Thursday at 1:00 pmCharles, 503.359.5820

Medford3rd Saturday, 11:00 amPRO, 800.426.6806

Milwaukie3rd Monday, 10:00 amDoug, 503.652.6519

Newberg 3rd Thursday, 10 am John, 503.487.6390 Louise, 971.344.4384

Oregon City1st Tuesday, 10 amGreg, 541.912.0972

Portland NW2nd Saturday, 10 amMarge, 503.252.6480

East Portland 2nd Thursday , 10:00 amKevin, 503.278.0516

East Portland, Russellville3rd Wednesday, 12:00 pmBarbara, 503.254.5900

East Portland, Laurelhurst 1st Friday, 10:00 am YuWen, 612.356.8164

West Portland, Bethany 2nd Wednesday, 3:30 pmCathy, 503-690-8317

Redmond 3rd Thursday, 1:00 pmLiz, 541.639.5989

Roseburg2nd Monday, 1:30 pmCarolyn, 541.673.7352

Salem / Mid-Willamette Valley2nd Tuesday, 2:00 pmDana, 503.588.1596Jim, 503.364.8520

St. Helens / Columbia Co. 1st Wednesday, 3:00PMMary Jo, (503) 543-7090Jenny, (503)366-8070

The Dalles1st Wednesday, 2:00 pmChad, 541.340.0142

Tillamook2nd Thursday, 1:00 pmMichael & Joanne, 503.355.2573

Toledo / Newport 2nd Tuesday, 11:00 amFaye, 541.336.2481

Tualatin3rd Saturday, 9:30 amTrudy, 503.692.7988

Vancouver, WA (Salmon Creek)3rd Friday at 1:00 pmCal, 360.892.1985

Vancouver, WA (The Quarry)2nd Wednesday, 10:00 amCathy, 360.944.6000

Vancouver, WA – Touchmark1st Wednesday, 1:00 pmLinda, 360.882.9110Kim, 360.433.6400

Wallowa County2nd SundayEvery other month, 2:00 pmMike, 541.426.8604

Welches **NEW**4th Tuesday, 11:00 am503-622-3331

Wilsonville2nd Thursday, 11:00 amCindy, 503.694.0303

Care-Partner Groups

Bend2nd Wednesday, 1:30 – 3:00 pmPhyllis, 541.317.1188

Eugene/Springfield 4th Tuesday, 1:30 pm541.345.2988

Portland SE 1st Thursday, 4:00 pmJanet, 503.516.5917

Tigard Lewy Body Dementia2nd Saturday, 1:00 pmKathy, 503.244.4714

Tigard - Male Caregivers 1st Friday, 10:30 amChuck, 408.373.9875

Tigard - Female Caregivers 1st & 3rd Wednesday, 3:00 pmKaren, 503.754.6088Nancy, 503.642.3213

Area Group MeetingsAlbany 1st Tuesday, 2:00 pm PRO, 800.426.6806

Ashland3rd Wednesday, 3:00 pmBill, 541.201.0954

Astoria2nd Monday, 1:00 pmDarlene, 503.440.1970

Baker City **NEW**3rd Tuesday, 2:30 p.m.Richard, 541.523.0013

Bend3rd Wednesday, 2:00 pmJulie, 541.633.7436

Chehalis, WA2nd Thursday, 1:00 pmKen, 360.520.4889

Coos Bay/North Bend2nd Monday, 2 pmJeff, 541.200.4632

Cottage Grove4th ThursdayLibby, 541.345.2988

Corvallis2nd Wednesday, 12:15 pmRoger & Iris, 520.456.9799

Eugene/Springfield2nd Tuesday, 10:30 amJudie, 541.485.2304David, 541.686.8615

Florence4th Wednesday, 1:30 pmCarole, 805.587.3394

Forest Grove 1st Monday, 10:00 amCharles, 503.354.5820

Grants Pass1st Tuesday, 1:00 pmJeff, 541.479.2578

Gresham3rd Tuesday, 2:00 pmPRO, 800.426.6806

Hermiston1st Monday, 1:00 pmCarol, 541.720.4256Charles, 541.567.9420

Klamath Falls3rd Tuesday, 1:00 pmRandy, 541.591.0977

Lake Oswego – Kruse Way1st Thursday, 9:00 amCharlene, 503.421.5058

LaGrande3rd Mondays, 4:30pmWendy, 509-946-4217

Vancouver2nd Tuesday, 11:30 amJan, 360.433.6400

Young Onset Groups

Eugene3rd Wednesday, 6:30 pm Call PRO 541.345.2988

Gresham 4th Mondays, 7-9pm Donna 503-805-2478

Alternative & Supplemental Groups

Portland4th Saturday, 9:30 amPRO Office, Lake OswegoAnne, 503.349.2400

Portland – Evenings2nd Tuesday, 7:00 pmNational College of Natural Medi-cine (west door)Carol, 503.233.4075

Eugene **NEW**3rd Tuesdays, 1:30 pmCarolyn 541-556-1444Cork 541-995-8060

“PD Plus” Diseases

MSA Support Group Portland3rd Saturday, 10:00 amMarquis Assisted LivingTony, 503.594.0901

PD+ Support Group Eugene3rd Wednesday, 2 pmLori & Gordon, 541.999.0949

Newly Diagnosed?Diagnosed with PD in the last year or two.

Lake Oswego1st Saturday, 10:00 amTom, 503.303.4871Carol, 301.237.0476

Golf Support Group Various times & courses in the greater Portland area as arranged by the groupPaul, 503.313.5013


Family, friends & care partners are welcome at all of our groups.

“You have Parkinson’s disease” transformed Nan Little from a Person into a Person with Parkinson’s. Although never considered an athlete, upon hearing this diagnosis in 2008 at age 62, she became physically and mentally stronger by setting, and meeting, unexpected goals. Mitigating her symptoms through fast cadence cycling, she has climbed mountains and cycled thousands of miles. IF I CAN CLIMB MOUNT KILIMANJARO, WHY CAN’T I BRUSH MY TEETH? COURAGE, TENACITY AND LOVE MEET PARKINSON’S DISEASE chronicles Nan’s unorthodox approach to managing PD. She tells stories, encouraging patients to draw from her experiences points that are relevant to their own lives. She doesn’t hide. Hallucinations, constipation, compulsive behaviors, and loss are all part of the picture.

Each story is laced with courage, tenacity and love. Patient efficacy, having some control over her personal Parkinson’s path, distinguishes this book from other medical memoirs. Nan encourages patients to take action based on scientific research with measurable outcomes. Although this book is about her experiences with Parkinson’s, it is appropriate for any person who endures a neurodegenerative disease, and those who work with them or care about them.

This newsletter is published six times a year.Articles published in this newsletter are solely for your information and should not be relied on as medical advice.

SAVE THE DATE:GALA

CELEBRATE HOPEAPRIL 29, 2016

[email protected]: 800.426.6806


PERSPECTIVES

PRO Conference pg 1

Call for Volunteers pg 2

PROvider PROfile pg 3

Calendar of Events pg 4

GALA Tickets! pg 5

Taking Care pg 6

Group Meetings pg 7

Book Review pg 8

Contact Us

Non-ProfitOrg.

U.S. PostagePAID

Permit No. 1673Portland, OR

If you no longer wish to receive this newsletter, please call our office at 800.426.6806

Parkinson’s Resources of Oregon3975 Mercantile Dr., Ste 154. Lake Oswego, OR 97035

Return Service requested

BOOK REVIEWIF I CAN CLIMB MT. KILIMANJARO, WHY CAN’T I BRUSH MY TEETH? BY NAN LITTLE

To meet Nan and learn more of her story, join us at the PRO Education Conference in Eugene.

Documents

PRO Newsletter - March/April 2016