THE PARKINSON’S PERSPECTIVE Newsletter Volume 36, Issue 6

NOVEMBER/DECEMBER 2016

Serving OR and S. WA

WORLD PARKINSON’S CONGRESS Whew! What a fall it has been! In addition to our three Sole Support for Parkinson’s walks (see page 3) PRO maintained our regular calendar of programs and participated along with more than 4,500 delegates from 67 countries in the World Parkinson’s Congress (WPC) in Portland, OR. We recognized early on what an amazing opportunity it was for our community to be the host city for the 2016 Congress. We also recognized that the event would create one-of-akind opportunities for education and engagement, and so we set to work. With a couple of years of planning, we were able to create a scholarship fund that provided resources for 150 individuals from all over our region to attend. Our scholarship participants were PwP and carepartners, volunteer support group leaders, and also doctors, OTs, nurses and speech therapists – each committed to applying and sharing learnings back in their home towns!

(Our booth at the WPC became a gathering point for NW delegates) NOV/DEC 2016

(Making new friends and sharing skills) Another way we worked to support the WPC was by leading an effort to “Make Portland Parkinson’s Ready”. What does it mean to make a city Parkinson’s Ready? Starting last January, we assembled a committee of dedicated advocates to help design a curriculum and then assist with live training. In addition to PwP and family caregivers, our team included Lisa Mann from OHSU and Dr. Richard Rosenbaum and Dr. Kieran Tuck of the Portland Parkinson’s Program. This amazing group of volunteers provided education and awareness for key hospitality and customer service personnel at 10 hotels, the Oregon Convention Center, and TriMet. Additionally, we disseminated a training video for the Portland Police and Airport personnel. Medical staff at two area hospitals received PD specific training in the weeks leading up to the WPC and event staff also received a briefing. We have had very positive

feedback and it feels wonderful to know that the information provided will continue to have a benefit in our community for some time to come. Anticipating the great education opportunities, PRO arranged for our volunteer support group facilitators to attend the WPC as local delegates. Following a long day of learning at the Congress’ first full day, Parkinson’s Resources of Oregon hosted 200 Support Group facilitators from five continents as we gathered for food, drinks and to connect with one another. Those who attended were reminded of the importance of their work by Providence Movement Disorder Specialist Dr. Elise Anderson, and had an open time of sharing resources, ideas and support in their unique and often challenging roles. Participants with particular areas of interest were encouraged to connect with others with the same interests at “focus tables,” while others relaxed and connected informally. PRO staff and board members enjoyed joining in the fun and camaraderie, and helped encourage connections between facilitators. During my time

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SAVE THE DATE

HOLIDAY GIVING

PLEASE STAY IN TOUCH VIA EMAIL, FACEBOOK, TWITTER, THIS NEWSLETTER, AND OUR EVENT REGISTRATION SITE. WWW.PRO.EVENTBRITE.COM

This holiday season we ask you to consider making a meaningful contribution to PRO and support the many resources available to caregivers like social services, education, support groups, and a respite fund. You can make a donation at www.parkinsonsresources.org, by calling 800.426.6806, or mail your contribution to PRO 3975 Mercantile Drive, Suite 154 Lake Oswego, OR 97035. Thank you!

November 8th, 2016. 6:00 pm - DBS Panel Lake Oswego April 28th, 2017 - Celebrate Hope Gala & Auction Multnomah Athletic Club, Portland. CONFERENCE - Educate. Inspire. Empower. Medford - April 22 Eugene - April 23 Bend - TBD

WORLD PARKINSON’S CONGRESS (CONTINUED FROM PAGE 1)

WE RECOGNIZED EARLY ON WHAT AN AMAZING OPPORTUNITY IT WAS FOR OUR COMMUNITY TO BE THE HOST CITY FOR THE 2016 CONGRESS. at the event, I listened to a facilitator from Malaysia share with PRO facilitators about his group’s “Karaoke Tuesday” social gatherings, overheard Young Onset Support Group facilitators talk about ways that they reach out to young people with PD, and listened to members of the “Radio Parkies” talk about reaching diverse communities through their online radio programs. Attendees of the international reception were provided with a copy of PRO’s new Support Group Facilitator Guide to take to their home groups as a resource. Our special thanks to Providence Brain and Spine and Medtronic for their generous support of the leader reception event. Additionally, we want to acknowledge Grants made in support of our efforts from the Oregon Community Foundation, Mr. & Mrs. Rippey, and an anonymous donor.

(The team at Marriott learning about PD)

Thank you to our reception sponsors:

(It was an International night of networking) NOV/DEC 2016

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SOLE SUPPORT FOR PARKINSON’S WHAT A TREMENDOUS SOLE SUPPORT SEASON!! OUR COMMUNITY STEPPED OUT ON PD, KNOCKING OUR $240,000 GOAL OUT OF THE PARK! THANK YOU!!

The Pacific Northwest showed its true colors with rain, clouds, and sunshine at our walks in Portland, Eugene, and Vancouver. A little rain didn’t stop the fun though as more than 1,500 participants donated, walked, and cheered. Walkers at each event were dancing in their seats, in the grass, and on the streets to live music including And the Beat Goes On Marching Band, Stump City Soul, Uncaged Locals, and Anita Margarita & the Rattlesnakes. Picnicking was enjoyed at all three walks with food carts from Bro Dogs, Dutch Bros. Taqueria El Rinconcito Express, Toxic, and Voodoo Donuts! To check out all the fun photos, visit our Facebook page www.facebook.com/ss4pd. If you haven’t already, there’s still time to be a part of the Sole Support success! Donate at www.solesupport.org.

sole support 2016 photo gallery

And the Beat Goes On Marching Band send our walkers off bouncing to the beat!

We hit the streets; a rainbow of balloons in Portland, bricks in Vancouver, and Busy Bees buzzed Eugene.

Strength in Numbers stepped out on Parkinson’s 88 walkers strong! The flock showed their feathers for Team Flamingo and Patsy Niggley was lovely in her daisies!

Special thanks to our Corporate Heroes who help make this work possible!

NOV/DEC 2016

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NOVEMBER IS NATIONAL CAREGIVER MONTH Join us in celebrating National Caregiver Month! PRO understands caregivers are one of the strongest elements in the quality of life and strength of those diagnosed with Parkinson’s disease. We celebrated the role of the caregiver in the There’s No Place Like PRO theme of our annual Celebrate Hope gala this past April and we continue to do so in our year-end giving campaign. In a conversation with Betty Flad - retired educator, mother, wife, grandmother, and sister we discussed her role as the full time caregiver for her younger brother, Bob, who had been living with Parkinson’s for 10 years. It was during one of Bob’s regular appointments at OHSU’s Parkinson’s Center that Betty first learned about PRO. Here is her recollection of that time. “We came in and I was probably pretty hyped up. Bob was declining and I felt as though his medications needed adjusting but he was fairly sensitive to the amount of money that he was spending on medications so he wasn’t looking for more pills but he was sort of looking for the magic cure. I recall feeling frustrated with Bob and saying, ‘These are the professionals that are helping you deal with your Parkinson’s – not from a cure standpoint but from a management standpoint and you really don’t want to hear it. As your caregiver I’m trying to listen to what they’re telling us and I’m trying to follow those protocols and you’re resisting me. That is creating a lot of frustration for me and a lot of anxiety.’ “Within five minutes of saying this there was a knock on the clinic’s exam room door. In came one of the staff members who said to me ‘I want to introduce you to an organization that I think could really, really assist you. I want to introduce you to Parkinson’s Resources of Oregon.’ Originally it was to assist me, but ultimately this referral assisted both Bob and me. I was completely unaware of PRO and as I met more people who were afflicted with Parkinson’s who

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(Betty Flad on the importance of support for caregivers) knew about PRO I thought, ‘Well, where have I been?’ That introduction was very modest. But I needed to hear it and I needed to hear it at that time. I contacted PRO the next week.” Betty admits when she entered the role of care giving it was with a great deal of naivety. For a period of about six months she describes being in a honeymoon period. “The role worked well for a number of years. I had a role, my husband had a role, and his children had theirs. As the disease progressed Bob’s needs became more prominent. This meant the burden grew, not in a negative way, but as something I thought about every single week. ‘What do we need to do for Bob and how can I fit my life around that?’ “I would tell you PRO saved my life but I would also tell you I wish we had accessed PRO earlier. I would’ve had a partner earlier. I ultimately found great salvation in PRO’s services and talking with other people walking the exact same path as me. Sometimes you walk it alone and think no one else does. Then you find an organization that shows you we’re all walking that same journey. PRO gave me strength. It gave me information. It gave me hope.” To enjoy the short video of Betty sharing her story with PRO visit www.tinyurl.com/PRObettertogether.

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BOARD OF DIRECTORS PRO is governed by a volunteer Board of Directors comprised of community members with an interest and passion for serving the PD community. Officers: Ian Smethurst Board President

Lucien Burke, M.D 1st Vice President

Greg Moore 2nd Vice President

Kristin Whitney Secretary

Barney Hyde Treasurer Directors at Large: Greg Chaille Susan Flad George Gregores Hank Grootendorst Gerald Hulsman Larry Jacobson Paul Labby Ryland Moore Kay Parr Joseph Quinn, MD Richard Rosenbaum, MD Justin N. Smith Kelly Sweeney Peggy Wood PAGE 4

INTRODUCING PRO’S JOURNEY CIRCLES WE ARE HONORED TO WELCOME EVERY LEVEL OF DONOR TO THE PRO FAMILY AND PLEASED TO ESTABLISH DONOR LEVELS THAT REFLECT THE LARGE INVESTMENTS MADE TO SUPPORT OUR SERVICES

For more than 35 years PRO has continued to rely on the dedicated support of individuals committed to our Parkinson’s community. We are honored to welcome every level of donor to the PRO family and pleased to establish donor levels that reflect the large investments made to support our services by generous individuals in our community. A common theme heard regularly with our clients is “the Parkinson’s journey” and the comfort found by being on this path together. We have applied this theme to our Journey Circles and welcome the opportunity to share more about investing in customized programming critical to the wellness of our Parkinson’s community. Board members, led by Greg Chaille (retired President of the Oregon Community Foundation) are working closely with PRO’s Development Director to grow the organization’s endowment to provide increased sustainability and longevity for programs. If you are interested in joining this effort and/or learning more about ways you can include Parkinson’s Resources in your estate plans, please email lauren@ parkinsonsresources.org or call 800.426.6806. We welcome hearing if you have already included PRO in your estate plans so we can accurately watch our Compass Circle grow.

$1,500 – Journey Circle recognizes a

donor’s steps on the journey to provide sustainable services to the Parkinson’s community.

$5,000 – Navigator Circle distinguishes a donor’s commitment to join PRO side by side and support the direction of the organization.

$10,000 – Pathfinder Circle identifies those

donors who are investing at a level that helps to clear the path to deeper services.

Legacy – Compass Circle welcomes

donors who have included PRO in their estate plans thereby providing a timeless level of support and guidance.

EXERCISE GUIDE ON WEBSITE Over the summer we made significant progress advancing the ease with which you can find and connect with Parkinson’s specific exercise and movement programs near you. Our new PD Exercise Resource Guide is now available online at the PRO website (www.parkinsonsresources.org). You can virtually flip through the pages, organized by location, to learn about classes near you. We view this as a regional effort, and welcome your thoughts and contributions to help maintain accuracy and completeness of the guide. If we are missing your favorite class, or if you find an error, please email Melissa Moran, our Education & Wellness coordinator at Melissa@parkinsonsresources.org.

NOV/DEC 2016

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DYSTONIA, MY STORY Contributed by Martha Sevcik

FOR YEARS MY HEALTH ISSUES WERE TREATED INDIVIDUALLY WITHOUT COMPLETE OR CORRECT DIAGNOSIS. MY COMBINED DIAGNOSIS ENABLES TREATMENT OF ALL OF ME.

Which would you choose? Dystonia or Parkinson’s (PD)? I didn’t choose either and didn’t choose both! It took me a long time to accept that I have incurable brain diseases – that won’t kill me soon. The key is how they’re managed, and being mindful that God doesn’t give me more than I can handle. Dystonia and PD seem to originate in the basal ganglia and both share issues with swallowing, choking, weakened voice and speech changes. Both are unique in each person, where one or both are possible. Dystonia can be an early symptom of PD and/or a side effect of Levodopa. I was first diagnosed with Spasmodic Dysphonia (SD) Dystonia (Laryngeal Dystonia), affecting my voice with uncontrollable muscle spasms disrupting my speech and voice quality. My voice may sound strangled, hoarse or breathy. I may sound semi-normal, to no voice or sound like Mickey Mouse! Before SD, my voice was clear and loud I was frequently “shushed” over the cube wall!

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My second diagnosis came when my ENT (Otolaryngologist Doctor) suspected PD. Additional tests ruled out stroke or tumor. A Movement Disorder Specialist confirmed Young Onset Parkinson’s Disease (YOPD). I started on Requip and quickly noticed a positive difference in my symptoms, a second opinion confirmed the diagnosis of YOPD. For years my health issues were treated individually without complete or correct diagnosis. My combined diagnosis enables treatment of all of me. These diagnoses are moments frozen in time. I felt relief, shock, then confusion “now what?” I needed time to accept these diagnoses before explaining it to others. What does this really mean for me? Can I still do my job? (Turned out the answer was NO.) I tried hiding my symptoms, fearing what others would think. I did research about “possible” new symptoms so I knew they were part of the diseases and not worry. Ultimately, I had to “retire” and I’m now on disability. The curling of my toes from Dystonia affects my balance, forcing a move from my home with stairs to a one

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story condo. I have the usual PD symptoms; heavy legs, gait is off, rigidity, slowness, no right arm swing, loss of smell, double vision, chronic sleeplessness, restless legs, mentally “foggy”, and I get tired quickly. I have occasional Hemifacial Spasm (Hemimasticatory) in my less expressive face. Writer’s Cramp (Hand Dystonia) curls my fingers, and a weakened grip where I drop everything. It started with tremors in my right arm and hand, then my left leg started “dancing” like it was at a party that it did not invite the rest of my body to. I kept thinking “Stop shaking. I can control this.” We all have quirks, mine just happen to be a bit more expressive than I would prefer! I work with the newly diagnosed and I see the familiar glazed look of “Oh crap! What do I do now?” My mission is to take them under my wing and say “It will be OK. You are not alone.” I try to do my best to direct them to local and Internet resources. I want to make their lives better, while they make mine better as well. I strongly believe in support groups, they are some of the best places for real-life information managing these diseases. I am the co-leader for the YOPD Gresham support group and welcome people to the Newly Diagnosed PD support group. I am also active in the Portland SD and Dystonia support groups. Only God knows what my future with Dystonia and PD will be. They are a part of me, but they do not define me. I have overcome many fears and obstacles with determination and perseverance. I reflect on my strengths and weaknesses and focus on what I can do today. I drink lots of fluids, get my rest, try to manage stress and not ignore my medication alarms. A positive attitude is required, with daily exercise can help slow the progression of PD. My life is somewhat normal and I have kept what independence I can. I know one day I will need more help but the longer I can delay, the more fulfilling my life will be. I wouldn’t be the quirky person I am today, with many wonderful Dystonia and PD friends if these diseases weren’t in my life. Now when I am asked if I could choose Dystonia and/or PD, I choose both. They have brought so many blessings into my life. PAGE 6

Area Group Meetings

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

Vancouver 2nd Tuesday, 11:30 am Jan, 360.433.6400

Albany 1st Tuesday, 2:00 pm Lynn, 541.936.6154

LaGrande 3rd Mondays, 4:30pm Wendy, 509-946-4217

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

Young Onset Groups

Ashland 3rd Wednesday, 3:00 pm Bill, 541.201.0954

Longview, WA Area 3rd Wednesday, 1:45 pm Barbara, 360.423.7012

Astoria 2nd Monday, 1:00 pm Darlene, 503.440.1970

McMinnville 1st Thursday at 1:00 pm Charles, 503.359.5820

Vancouver, WA (Touchmark) 1st Wednesday, 1:00 pm Linda, 360.882.9110 Kim, 360.433.6400

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

Baker City 3rd Tuesday, 2:30 pm Richard, 541.523.0013 Bend 3rd Wednesday, 3:00 pm Julie, 541.633.7436 Chehalis, WA 2nd Thursday, 1:00 pm Ken, 360.520.4889 Coos Bay/North Bend 2nd Monday, 2:00 pm Jeff, 541.200.4632 Betsy, 541.404.5735 Cottage Grove 4th Thursday Libby, 541.345.2988 Corvallis 2nd Wednesday, 12:15 pm Roger & Iris, 520.456.9799 Eugene/Springfield 2nd Tuesday, 10:30 am Judie, 541.485.2304 David, 541.686.8615 Florence 4th Wednesday, 1:30 pm Carole, 805.587.3394 Forest Grove 1st Monday, 10:00 am Charles, 503.359.5820 Grants Pass 1st Tuesday, 1:00 pm Jeff, 541.479.2578 Gresham 3rd Tuesday, 2:00 pm Patty, 503.761.2792 Hermiston 1st Monday, 1:00 pm Carol, 541.720.4256 Charles, 541.567.9420 Klamath Falls 3rd Tuesday, 1:00 pm Ron, 541.591.0686 Lake Oswego 1st Thursday, 9:00 am Charlene, 503.421.5058

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Medford 3rd Saturday, 11:00 am PRO, 800.426.6806 Milwaukie 3rd Monday, 10:00 am Doug, 503.652.6519 Molalla **NEW** 3rd Tuesday, 10am Debbie, 971.244.2427 Newberg 3rd Thursday, 10:00 am John, 503.487.6390 Louise, 971.344.4384 Newport / Toledo 2nd Tuesday, 3:00 pm Faye, 541.336.2481 Shirley, 541.336.3945 Oregon City 1st Tuesday, 10:00 am Greg, 541.912.0972 Redmond Group is currently on hold Call PRO for info. 800.426.6806 Roseburg 2nd Monday, 1:30 pm Sandy, 541.430.1286 Salem / Mid-Willamette Valley 2nd Tuesday, 2:00 pm Dana, 503.588.1596 Jim, 503.364.8520 St. Helens / Columbia Co. 1st Wednesday, 3:00PM Mary Jo, (503) 543-7090 The Dalles 1st Wednesday, 2:00 pm Chad, 541.340.0142 Tillamook 2nd Thursday, 1:00 pm Michael & Joanne, 503.355.2573 Tualatin 3rd Saturday, 9:30 am Trudy, 503.692.7988

Wallowa County 2nd Sunday Every other month, 2:00 pm Mike, 541.426.8604 Wilsonville 2nd Thursday, 11:00 am Cindy, 503.694.0303

Portland Groups East Portland 2nd Thursday , 10:00 am Kevin, 503.278.0516 East Portland, Russellville 3rd Wednesday, 12:00 pm Barbara, 503.254.5900 Inner NE Portland 2nd Saturday, 10:00 am Marge, 503.252.6480 Laurelhurst “PD Avengers” 1st Friday, 10:00 am YuWen, 612.356.8164

Eugene 3rd Wednesday, 6:30 pm Call PRO 541.345.2988 Gresham 4th Mondays, 7-9pm Donna 503-805-2478 PDX Area Happy Hour **NEW** Kathieshill@gmail.com

Alternative & Supplemental Groups Eugene 3rd Tuesdays, 1:30pm Carolyn 541-556-1444 Cork 541-995-8060 Lake Oswego 3rd Saturday (Quarterly) 9:30 am, Anne, 503.349.2400 Portland – Evenings 2nd Tuesday, 7:00 pm National College of Natural Medicine (west door) Carol, 503.233.4075

“PD Plus” Diseases

Care-Partner Groups

MSA/PSP Support Group Portland 3rd Saturday, 10:00 am Marquis Assisted Living PRO, 800.426.6806

Bend 2nd Wednesday, 1:30 – 3:00 pm Phyllis, 541.317.1188

PD+ Support Group Eugene 2nd Wednesday, 1:30 Lori & Gordon, 541.999.0949

West Portland/Hillsboro 2nd Wednesday, 1:00 pm Cathy, 503-690-8317

Eugene/Springfield 4th Tuesday, 1:30 pm PRO, 541.345.2988 Portland SE 1st Thursday, 4:00 pm Janet, 503.516.5917 Tigard Lewy Body Dementia 2nd Saturday, 1:00 pm Kathy, 503.244.4714 Tigard - Male Caregivers 1st Friday, 10:30 am Chuck, 408.373.9875 Tigard - Female Caregivers 1st & 3rd Wednesday, 3:00 pm Karen, 503.754.6088 Nancy, 503.642.3213

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Newly Diagnosed? Diagnosed with PD in the last year or two. Lake Oswego 1st Saturday, 10:00 am Tom, 503.303.4871 Carol, 301.237.0476

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

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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. Parkinson’s Resources of Oregon 3975 Mercantile Dr., Ste 154. Lake Oswego, OR 97035

PERSPECTIVES World PD Congress

pg 1

Save the Date

pg 2

Sole Support

pg 3

Return Service requested

Non-Profit Org. U.S. Postage PAID Permit No. 1673 Portland, OR

National Caregiver Month pg 4 PRO Journey Circles

pg 5

Dystonia, My Story

pg 6

Group Meetings

pg 7

Strive to Thrive in 2017

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Contact Us info@parkinsonsresourcs.org toll-free: (800) 426-6806

ANNUAL FUND CAMPAIGN UNDERWAY. YOUR SUPPORT IS AN IMPORTANT PART OF OUR SERVICES.

Many new households were added to our mailing list after participating in Sole Support. If you would like to be removed from this free newsletter subscription, please call 800.426.6806 or email info@parkinsonsresources.org

STRIVE TO THRIVE IN 2017

Contributed by Julie Carter, RN, MN, ANP, Professor of Neurology I want to tell you about a very important program for people with Parkinson’s disease and their spouse/partner. PRO and the PCO have been partnering over the last year to put on a 7 week program for people with PD called, Strive to Thrive, and we are getting ready to launch another year of workshops. This workshop is built on the concept that the best way to live with chronic illness is to be in charge of your disease and learn how to be a good self-manager. What does being a good self-manager mean? Like any “management” position it means being in charge and directing the way you want things to go. This is not done alone but done in consultation of others such as your health care team. As a manager you take responsibility for gathering information about your diagnosis and general health, set goals to address the things you want to change and then take responsibility for

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following through and evaluating if you need to change your approach and goals. This requires knowledge and specific skills. Strive to Thrive will teach you both. It is a workshop that was designed by Stanford University for all chronic illnesses to provide general knowledge about specific health behaviors and teach skills about how to make the changes you want to make. We have added some Parkinson disease content to make it more pertinent to your needs. The research that has been done on this program has shown significant health benefits for people who have learned to be good self-managers.

We encourage couples to sign up for this program because we believe that there is even more power in doing this together. For those who are interested: When: Sign up now until January for inclusion in the 2017 schedule of classes Where: Strive to Thrive will be offered a minimum of four times in 2017 in the Metro Portland area. Individuals and couples who sign up will be notified of schedule and location options in early January. Sign up at www.pro.eventbrite.com or www.ohsu. edu/PCO. Who: We encourage individuals or couples who are in the first 5 years of diagnosis. We hope to see you in one of these classes!

Finally we think this is important not only for individuals but also for couples. Research in other chronic illnesses has shown that couples cope best who think of an illness as “our illness” rather than “your illness”.

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