PRO Newsletter - Jan/Feb 2016

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

THE PARKINSON’SPERSPECTIVENewsletter

Volume 36, Issue 1 January/February 2016 Serving OR and S. WA

Celebrating35 years

EAT WITH EASE IN 2016

BOOK RECOMMENDATIONS FEATURING RECIPES USEFUL FOR SWALLOWING ISSUES AND/OR SENSE OF TASTE

Well, the holidays are over and the special food preparation is behind us. However, if you’re a person with Parkinson’s or a care partner, special food preparation may be a year-round challenge because of issues with swallowing and/or sense of taste. Here are some books that may be helpful:

The Dysphagia Cookbook by Elayne Achilles • Every recipe has a classification of S, G, or P indicating consistency levels of soft, ground, or puréed. • Included is a list of ready-made products that have been tested for thickness, flavor, ease of chewing, and ease of purchase and preparation. • A section on must-have kitchen supplies helps cooks deal with the new ways of preparing food for people with swallowing difficulties.

Down Easy: A Cookbook for Those With Swallowing Difficulties by Judy Best • Recipes focus on organic and whole foods and are graded for ease of swallowing. • Some gluten-free recipes are included. • Includes suggestions for foods to prepare ahead for traveling.

Easy-to-Swallow, Easy-to-Chew Cookbook: Over 150 Tasty and

Nutritious Recipes for People Who Have Difficulty Swallowing by Paula Sullivan *hint: borrow from PRO library.• The author is a speech pathologist who specializes in swallowing rehabilitation. • Includes an extensive chapter with helpful tips and techniques to make eating easier.

Soft Foods for Easier Eating Cookbook: Easy-to-Follow Recipes for People Who Have Chewing and Swallowing Problems by Sandra Woodruff • Many deal with swallowing issues by

puréeing their food. The unfortunate result is that food becomes unappetizing and nutrition needs may go unmet. • This cookbook focuses on guidelines for modifying recipes for soft and smooth texture while maintaining taste.

Speaking of taste, here are two books that are fascinating and useful if you like to cook a lot. Please note they are expensive ($40 and $38) and contain no recipes. Why would you buy cookbooks with no recipes? Read on…

The Flavor Bible: The Essential Guide to Culinary Creativity, Based on the Wisdom of America’s Most Imaginative Chefs and The Vegetarian Flavor Bible: The Essential Guide to Culinary Creativity With Vegetables, Fruits, Grains, Legumes, Nuts, Seeds, and More, Based on the Wisdom of Leading American Chefs both by Karen Page • Contain thousands of ingredient entries, organized alphabetically and cross-referenced with the herbs, spices, and other seasonings that best enhance their flavor, resulting in thousands of recommended pairings. • Create flavor combinations that may help overcome issues with sense of taste.

by Tony Borcich, LCSW


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

Directors at Large:Sandy AyersGreg ChailleSusan Flad

George GregoresHank Grootendorst

Gerald HulsmanBarney Hyde

Larry JacobsonPaul Labby

Kay ParrJoseph Quinn, MD

Derek RantaRichard Rosenbaum, MD

Kelly SweeneyKristin Whitney

Peggy Wood

Officers:

TAKING CAREby Jane Manchee

“Hon, it’s time to go. Have you got everything?”“Yes.”“Have you got your phone?”“Yes.”“Have you got your eyeglasses?”“Yes.”“Got your notebook?”“Yes.”“Got your watch?”“Yes.”“Got your meds?”“Yes.”“Okay, let’s go.”

We climb into the car, get settled, and head off to our appointment.

Rounding the corner from home.

“Oh, wait.”“What is it?”“I forgot my wallet.”

I laugh. “The one thing I forgot to ask you. No problem, we aren’t far from home and I’m glad you remembered now and not when we were halfway there. Thanks.”

Crud, I think to myself, and we spin around to get it. As I run into the house the I can’t do this, I can barely keep track of myself monologue rears its ugly head. It chatters for a moment like a hamster on a wheel and then I push it away because I know there’s no point going there, and coming back to the house isn’t the end of the world.

We’re still searching for the right balance when it comes to keeping track of everything. Joe recognizes that when he gets distracted he loses sight of what he might have been working on. Consequently, dishes are left half done, damp towels are left on the bed, fridge doors remain partially open, lights are left on, items are misplaced — you get my drift.

Leaving reminder notes in obvious places doesn’t seem to help — he either doesn’t see them or possibly he ignores them — I’m not sure which.

Sometimes it’s hard not to attribute misplacing something to the aging process. We all do it, we all forget things, so I’m not sure how much is Parkinson’s related and how much is inevitable. It can be frustrating for both of us. I feel like I’m constantly picking up after him, and he gets annoyed when he misplaces things. I do it too. “Where are my glasses?” “On your head.” “Oh, right. Thanks!”

The one thing we haven’t lost is our sense of humor. It’s what gets us through our days. To borrow the title of Richard Carlson’s book, we don’t sweat the small stuff.

Well, sometimes I do, but if we step back, take a deep breath, and survey the situation, there is usually something silly to laugh at — something to lighten our moods — to help us forgive each other’s impatience.

I’ve learned that having the capacity for compassion and forgiveness goes a long way when you’re living with PD. Plus a healthy sense of humor with a dash of fun and a willingness to laugh at yourself.

Any coping tips would be gratefully accepted: [email protected]

GETTING OUT THE DOOR...

(Jane Manchee)


REPORT FROM THE ROAD: I’VE BEEN EVERYWHERE

by Heather Balducci, LCSW

A primary component of my work here at PRO involves staying connected with our 60-plus support groups in Oregon and Southwest Washington. This past year, I have had the chance to visit each of these groups, meet the members, and share information and resources relevant to their journeys with Parkinson’s. My hope is that as I continue visiting groups in the coming years, members will feel even more connected and welcome to call our helpline for support, attend education programs, or access other services that PRO provides. Here are some of the major observations that I’ve noticed during my travels:

1. Our support group facilitators! Our leaders bring their own unique perspectives from living with Parkinson’s, and their energy and ideas help bring educational content to groups, engage supportive and uplifting discussions, and build meaningful PD communities. Outside of the monthly group time, facilitators often spend many hours researching topics for the group, finding guest speakers, and connecting with people from the community interested in attending. Facilitators volunteer their time to the group, and allow resources and support to personally touch thousands on a regular basis.

2. Our lovely meeting spaces! All of PRO’s groups meet in donated space, and we are grateful for the organizations that generously offer their cozy and comfortable meeting rooms to the Parkinson’s community as a show of support to people with the disease. Support groups meet in health education centers, community centers, churches, and retirement communities, to name a few. My personal favorite venue was one of our more unique locations: the Desert Lanes Bowling Alley in Hermiston.

3. Our group members! Attendees at the support groups are often eager to share their personal perspectives and knowledge

about Parkinson’s with their peers. Though groups are often a safe place to vent about the frustrations of living with the disease, members of the groups keep their focus on the positive side of things: physical and emotional wellness and ways that they’ve developed strength and resiliency through the disease. Most groups include several “unofficial” leaders who help the facilitators by assisting with tasks like publicizing the groups, distributing name tags, or bringing treats to the meetings.

Thanks to those of you who shared your stories and input with me over this past year during my travels to the various groups. I was thrilled to have the opportunity to meet each of you.

If you are interested in starting or joining a support group or have feedback about a group you’ve attended, please contact me at the PRO helpline number or at [email protected]. I’m looking forward to another action-packed year and many more miles on my trusty red Prius!

I’VE BEEN EVERYWHERE, MANI’VE BEEN EVERYWHERE

CROSSED THE DESERTS BARE, MAN BREATHED THE MOUNTAIN AIR, MAN

TRAVEL, I’VE HAD MY SHARE, OHI’VE BEEN EVERYWHERE.

(JOHNNY CASH)

PRO Support Groups Visited!


Strive to Thrive: Self-Management Program for PDWith a couple of pilot classes behind us and a great team of volunteers; Parkinson’s Resources of Oregon (PRO) and The Parkinson Center of Oregon at OHSU (PCO) are ready to roll out Strive to Thrive classes in the Metro Portland area in 2016. Based upon the Chronic Disease Self-Management Program (CDSMP) developed at Stanford University, Strive to Thrive combines the proven self-efficacy theory of the CDSMP with the synergy of learning with and from people managing the same diagnosis of PD.

Participants will learn techniques necessary for managing chronic disease and can expect to leave the program with skills for self-monitoring, problem-solving, making informed decisions, and taking action to engage in healthy behaviors.

This is a 7 week curriculum, class participants should be able to commit to availability for the entire course participants rely upon each other for goal setting and accountability. Individuals diagnosed with PD as well as care partners are invited to attend.

PWR! Instructor Training coming to PDXThis February 20 & 21 PRO is sponsoring Instructor training for the acclaimed PWR! Program developed by Dr. Beck Farley. Learn more about PWR! and access complete registration information at www.pwr4life.org. Instructor training is appropriate for Personal Trainers and Group Fitness Instructors as well as PT’s, PTA’s, and OT’s.

In conjunction with the professional training, Dr. Farley will present a free class for the PwP and Carepartner community on Friday, February 19th. Registration for the community program at www.pro.eventbrite.com.

Levodopa: New Way vs Old Way January 25th – Noon, Tualatin, Legacy Meridian Park HospitalRegister: www.pro.eventbrite.comMedication is central to effective management of Parkinson’s Disease symptoms. Within the past year, two new methods of delivery of Carbidopa/Levodopa have been released by the FDA. Learn more about these medications and ways to talk to your doctor about medication options.

Kathy Dodson, RN, MN, is a Family Nurse Practitioner at The Oregon Clinic. Kathy has been practicing neurology since 2010. This program presented in partnership with the Portland Parkinson’s Program, The Oregon Clinic, and Legacy Health.

PwP attendance. Scholarship information available at www.parkinsonsresources.org/wpc2016.

Portland CountdownThe podcast series sponsored by Parkinson’s Resources of Oregon continues with new releases on the first Tuesday of every month. Join the international community of learners and download the topics of interest to you! Each podcast is just 20-30 minutes in length. With an easy and conversational format, listeners gain insight and understanding of some of the most current and interesting developments in the field of PD research and understanding.

Look for topics and download links at www.wpc2016.org. Join more than 5000 others representing 30 Countries in your journey to better understand PD!

Planning for the FutureThe PADRECC is a program of the VA to provide care and services for the Parkinson’s community. Each year they host education opportunities for the veteran community with live and broadcast/remote viewing options.

On Feb. 19th 10-11:30 at the VA Auditorium Kristi Ketchum LCSW and others from the

CALENDAR OF EVENTSPLEASE STAY IN TOUCH VIA EMAIL, FACEBOOK, TWITTER, THIS NEWSLETTER,

AND OUR EVENT REGISTRATION SITE. WWW.PRO.EVENTBRITE.COM

World Parkinson Congress Registration OpensRegistration for the 2016 World Parkinson Congress (WPC) will be open beginning January 11, 2016. As the Congress is coming to Portland this year (September 20-23) we are anticipating a fantastic turn-out of delegates from the Pacific NW.The WPC is for everyone! Researchers, clinicians, allied health and the patient/caregiver community as well. In order to support access for our local community, PRO has created a scholarship fund for Clinicians/Researchers, Allied Health and

Kathy Dodson, RN, MN


VA Portland Health Care Services team will present on Planning for the Future. Registration by calling 503.721.1420. Not in Portland? Be sure to ask about remote viewing locations around the region.

PRO Sponsored Wellness Classes Throughout the year, PRO hosts classes designed to support and encourage patient and carepartner wellness. Whether Tai Chi, Movement, Singing, Communication or **new this year in Eugene** Art Therapy, we strive to provide a comfortable and safe environment to explore new activities and make connections.

The Winter Schedule of Classes is now available online for registration. www.pro.

eventbrite.com. Many of these programs fill up and we do have to limit registrations for space and safety concerns, so act quickly!

We will be adding some new locations and formats as the year unfolds – watch for expanded offerings in Ashland, Hillsboro, Eugene and Central Oregon. In addition to PRO hosted activities, many communities have wonderful existing programs you should check out! For example, Dance in Eugene and the Portland area, exercise and yoga with NW Rehab in Salem, and a class for PwP in Corvallis, to name just a few options. Call or email if you would like help connecting.

New Dance for Parkinson’s Program in Central OregonAfter a year of successfully partnering to launch a Tai Chi for PD program in Bend, Parkinson’s Resources and the First Presbyterian Church are expanding their partnership for 2016 to add a new Dance for Parkinson’s program to the schedule. Starting this January, local residents will be able to enroll in both Tai Chi and Dance at the new well-being center called Connections located at First Presbyterian.

“Connections is a natural extension of our interest in supporting the health and wellbeing of our greater community and will be host for a variety of programs and services” said Elizabeth Stephen, Center Coordinator. The Center creates a safe and supportive environment for people with Parkinson’s to explore exercise and movement to maintain wellness. PRO is pleased to continue this collaboration as services for PwP grow in the region.

Registration and Class scheduling is coordinated with the First Presbyterian Church. Contact Elizabeth Stephan at [email protected] or 541 382 4401.


SAVE THE DATE - GALA - APRIL 29, 2016PLANNING FOR THE 7TH ANNUAL CELEBRATE HOPE GALA AND AUCTION IS UNDERWAY!

This year, guests will enjoy an unforgettably elegant evening based around the theme “There’s No Place Like PRO.” In keeping with our theme, we will follow the yellow brick road as we celebrate the “courage” of PRO’s clients, the “brain” of local experts and resources, the “heart” of an organization dedicated to improving the quality of life for those facing this disease in the Northwest, and the “magic” of supporters like you who make this work possible! We will welcome clients, physicians, professionals,

community leaders, and donors with a goal of raising $280,000 to enrich and expand programs for individuals diagnosed with Parkinson’s, their family members, and health care professionals.

We are honored to welcome Dr. Mark Cranston as our guest speaker! Dr. Cranston served 21 years as an Air Force physician before retiring four years after being diagnosed with Parkinson’s at the age of 44. In April 2014, the OHSU alum completed an individual challenge to run 4 miles in 44 different countries in 4 weeks, dubbing the effort “Run-the-World 4 Parkinson Disease.” After circling the globe, Dr. Cranston was inspired to continue his efforts to further Parkinson’s awareness. He intends to stretch that goal by running in 196 countries by 2017.

For event updates, information about our speaker, and a sneak peek at auction packages, continue to visit www.progala.org and be sure you’ve liked “Celebrate Hope” on Facebook!

Thank you to our enthusiastic and dedicated gala committee members, who are volunteering their time to make

this event memorable and meaningful — Connie Helleson (chair), Helena Snyder, Jane Manchee, Jeannine Walker, Jessica McCluskey, Karyl Whelan, Kimberly Brecko, Maria Cura, and Peggy Rau!

Mark your calendars and find some sparkly red shoes! Tickets go on sale January 4, 2016, at www.progala.org.

Questions? Contact Lauren Tietsort, development director, at 503.344.6952 or [email protected].

We are committed to being able to provide this level of access in an effort to break down common barriers to wellness, like geography and finances. However, we can’t do it alone and are able to expand our reach much further when we have the support of generous community members putting on “third-party events.”

A third-party event is one that is organized and managed by one or a group of volunteers, in which PRO is either the sole

beneficiary or shares the event’s proceeds. These events are a FANTASTIC way to engage friends and community members in supporting a cause that means so much to you! This past August, World Famous Nick’s hosted a poker run, raising over $1,000 for PRO! We received a call the other day from a dinner club that planned on collecting donations for PRO in honor of one of its members who has PD.

If you’re interested in learning more about holding a third-party event, contact Lauren Tietsort at 503.344.6952 or [email protected].

EVENTS IN EVERY SHAPE AND SIZEDID YOU KNOW THAT PRO OFFERS ITS PROGRAMS AND SERVICES TO MORE THAN 10,000 CLIENTS

IN OREGON AND SOUTHWEST WASHINGTON, ALL WITHOUT REQUIRING PAYMENT?!

Dr. Mark Cranston, Guest Speaker

Lebanon2nd Wednesday, 1:30 pmRon & Maxine 541.259.3564

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

McMinnville1st Thursday at 1:00 pmCharles, 503.359.5820

Medford3rd Saturday, 11:00 amJanet, 541.282.7822

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 Bev, 503.535.4988

Redmond 3rd Thursday, 1:00 pmJulie, 541.633.7436

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. **NEW**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 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

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

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 Dave, 541.979.9622

Ashland3rd Wednesday, 3:00 pmBill, 541.201.0954

Astoria2nd Monday, 1:00 pmDarlene, 503.440.1970

Bend3rd Wednesday, 2:00 pmJulie, 541.633.7436

Chehalis, WA2nd Thursday, 1:00 pmKen, 360.520.4889

Coos Bay/North Bend2nd Monday, 2 pmMelissa, 850.207.1469Jeff, 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 amShirley, 503.357.3937

Grants Pass1st Tuesday, 1:00 pmJeff, 541.479.2578

Gresham3rd Tuesday, 2:00 pmPatty, 503.761.2792

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

La Pine3rd Tuesday, 10:30 amJulie, 541.633.7436

Vancouver2nd Tuesday, 11:30 amJan, 360.433.6400

Young Onset Groups

Eugene3rd Wednesday, 6:30 pm Call PRO 541.345.2988

Gresham **NEW**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, 1:30pmCarolyn 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 Eugene2nd Wednesday, 1:30Lori & 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.

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) 426-6820


PERSPECTIVES

Eat With Ease pg 1

Taking Care pg 2

Report from the Road pg 3

Calendar of Events pg 4

Calendar of Events pg 5

GALA! pg 6

Group Meetings pg 7

Squash & Apple Bake pg 8

Contact Us

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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

1 medium butternut squash (1 ½ lbs)1 tablespoon butter or margarine½ teaspoon salt¼ teaspoon pepper1 tablespoon brown sugar2 medium apples, peeled, cored, and cut into thin slices¼ teaspoon cinnamon2 tablespoons sugarTOPPING:1 cup corn flakes, slightly crushed¼ cup chopped pecans (optional)1 tablespoon butter, melted1 tablespoon brown sugar

Peel squash and cut into large pieces. Place in a large pan with 2 inches of water. Cover and boil gently over medium heat for 20-30 minutes or until squash is tender. Drain well. Add butter, salt, pepper, and brown sugar. Mash with electric mixer. Set aside.

Preheat oven to 350 degrees. Butter a deep 9-inch round pie pan. Arrange apples in pan. Sprinkle with cinnamon & sugar. Spread mashed squash over apples. Combine topping ingredients in a small bowl & sprinkle over squash. Bake for 25-30 minutes or until apples are tender.

Nutritional info/serving: calories 125; fat 4g; protein 1g; carbohydrate 22g; cholesterol 10mg; fiber 1.2g

BUTTERNUT SQUASH AND APPLE BAKEfrom Easy to Swallow, Easy to Chew

PRO Newsletter - Jan/Feb 2016

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