The Parkinson’s Perspective
A Letter from Holly
For nearly 25 years, PRO has been my passion and my most important professional undertaking. From when I took on the position in the summer of 1999 to today, I have been deeply committed to our work to help families navigate a diagnosis of Parkinson’s disease.
In August 1999 I was hired as the first professional staff member – a leap of faith by all involved! Working alongside a board that was willing to take risks, learn with me, and share the commitment to our local community has made the years fly by! Earlier this year, I shared the news with our leadership of my intention to retire in August 2024 –almost 25 years to the day later.
We’ve been preparing for transition for a while. PRO is well positioned to continue as advocates for those we serve without missing a beat. Following a rigorous evaluation process, the PRO Board of Directors has selected Melissa Greer to continue and expand upon this legacy.
I couldn’t be stronger in my support of this decision. Anyone in our community who has interacted with Melissa during her decade of service here at PRO will be as enthusiastic as I am that she has agreed to step
into the role of Executive Director. When you have a chance to see her next, please give her a warm welcome!
Even as this is my goodbye, there is much to celebrate. 2023 was a remarkable year – expanding our reach and numbers of clients served by nearly every measure. We have advanced our sources of financial support, too, making this growth possible. Gathering thoughts and perspectives from the community we serve is core to who we are. I know that even as the board looks to the future and refreshes our vision, you will be called upon and invited into the process.
I wholeheartedly believe that PRO is special and that our culture, supporters, and community are the source of all that is valuable within our organization. As we’ve grown, we have always kept our mission and clients at the forefront, leading the way. Together we’ve taken some risks, expanded our reach, and provided comfort and assurance to thousands of lives.
All this is possible because we have a talented and capable staff – with collective decades of experience and institutional knowledge. As-
sembling and cultivating this team may, in fact, be my proudest accomplishment.
I know there will be changes that happen over time, indeed I HOPE they happen! New leadership with a commitment to our vision and deep history with our programs, like that embodied by Melissa, will ensure both continuity and an exciting future full of new opportunity.
I sincerely thank each of you for your commitment to Parkinson’s Resources of Oregon, and by extension, those who face a diagnosis of Parkinson’s disease. My last day as an employee at PRO will be August 16th. After a short break, I’m sure we will be crossing paths again!
Warm Regards, Holly Chaimov
Executive Director from August '99 to August '24
Sole Support Q&A with Holly and Melissa
Q: How many Sole Support walks have you been to?
H: “Between the two of us? Probably more than 70! I’m positive I’ve got 50 or more and Melissa has at least 20.”
Q: What’s your favorite memory from Sole Support?
M: “My favorite memories from Sole Support are the people. I love to see the faces of families that come together to support their loved ones or are there in memory of a loved one. These are people I don’t always see during the year, but they always come back for Sole Support! Attending Eugene and Bend walks, it’s such a joy to meet people in person that I have connected with either through the phone or a program.”
H: “Well, there was that year we walked in a tropical storm. It could have been a disaster, but if you ever
doubt the resilience of this community and their commitment to supporting PRO, well that walk proved it! Smiles, parkas and rainboots ruled the day! Sole Support is full of memories like that, people coming together and making something special from tough circumstances.”
Q: What do you wish people knew about Sole Support?
M: “I wish people knew how much FUN it is! While it holds so much meaning for people with Parkinson’s and their families to celebrate and spread awareness, there is an energy there that cannot be described, it’s only felt!”
H: “You won’t regret getting involved. Seriously. Even folks who just come for the music, exhibitors and community leave feeling so much more optimistic about the future.”
Peer Mentor - Is it right for you?
Have you heard about PRO’s Peerto-Peer Mentoring Program? During the two years we have been offering this program we have matched over 40 individuals with Parkinson’s with a mentor to provide personalized support, encouragement and resources.
For a person who is newly diagnosed or experiencing some changes in
Q: Do you have any tips for fundraising?
H: “Every year I hear from participants overwhelmed by the outpouring of support from friends and family. People care about you. They want to help, they just don’t always know how. An invitation to walk with you or donate toward your efforts is a simple first step toward expanding your community of care.”
managing their symptoms, a mentor can be an invaluable guide. The mentor is there to answer questions about PD, offer understanding and support, share information about available resources, and nurture a relationship of trust to count on in their journey with PD.
Does becoming a mentor pique your interest? If so, we are currently accepting applications from folks interested in becoming a mentor. Mentors receive ongoing training and support from PRO with direct
access to our Program Coordinator. Does PD feel lonely or isolating to you? Ready to lean on the support of a peer who has been who has been where you are in the Parkinson’s journey? You might benefit from connection with one of our PRO Mentors.
If you are interested in any of these opportunities, please email Mike Mulligan, PRO’s Community Health Education Coordinator at mike@parkinsonsresources.org or call our main office to reach him.
Holly Chaimov & Melissa Greer
Let’s Celebrate our Bright Future CONTRIBUTED BY JUSTIN N. SMITH, BOARD CHAIR
A decade ago, I took part in a Sole Support walk. I was new to Portland and wanted to get connected to the community. The cause was also personal. My grandfather, my hero, lived with Parkinson’s disease for many years in rural Washington state. There were few resources available to help him and my family manage the physical, social, and financial impacts of the disease. I walked that fall day wit h my spouse Christine. We were impressed by the hundreds of people, of all ages and all abilities, hitting the streets to ensure no one with Parkinson’s faces the disease alone. At the Portland event, I met Jerry Hulsman – the guy I call “Portland’s volunteer” – and he encouraged me to join the PRO board. Boards can always use someone with management and fundraising skills. Because it was Jerry, I took his advice and stepped onto the PRO board in 2014.
I’m so glad I did. Watching PRO grow in size and sophistication under the leadership of long-time executive director Holly Chaimov is a joy. For 10 years, I’ve had a front row seat to the positive and powerful impact this organization has on thousands of people affected by Parkinson’s disease. Much of that can be attributed to Holly’s care, stewardship, and extraordinary management of the resources entrusted to PRO. With a stellar team that she assembled, Holly provided a stable foundation and drove greater reach and impact for every stakeholder. Her legacy will be felt for months and years to come.
This spring, I had the bittersweet honor to lead the process to replace Holly after 25 incredible years. We’re happy that our friend and colleague
will start a new chapter, but we’re sad to see her go. The board, however, didn’t go far to find a successor. In May, we voted unanimously to offer the executive director position to PRO’s own Melissa Greer. Melissa was mentored by Holly and sees the entire PRO team – Nia, Libby, Jess, Mike, Ginger, Jeannine, Nancy, and Helen – as invaluable partners.
Join me on Thursday, August 8, from 4 to 7 p.m. at the PRO office at 8880 SW Nimbus Avenue in Beaverton to thank Holly as she heads into retirement, welcome Melissa as PRO’s new executive director, and raise a glass to the PRO team. Our organization has a bright future.
As the PRO program director, Melissa has been instrumental to PRO’s success. She knows the organization, she’s committed to the mission, and she has a deep and genuine passion for the community. Melissa joined PRO in 2014 – the same year I did – and is a major champion of the organization’s rural outreach initiative. The organization she inherits has a cohesive staff, effective programs, and a growing reach in Oregon and Southwest Washington. The board wanted to maintain that momentum in partnership with a leader who shared our values and supported our culture of care and excellence. We wanted to keep PRO’s heart. Melissa will do this. We know she is the leader we need.
I can tell you that the hiring process was rigorous – and needed to be. Hiring an executive director is the most important job that nonprofit boards do.
While our board is fortunate to have
communications, management, human resources, and organizational transition expertise represented, we went above and beyond and hired a non-profit management consultant. We worked with her to create a detailed job description and a thorough hiring process that included two rounds of board panel interviews and a scored evaluation system. We were prepared to recruit an external candidate if necessary – but Melissa sailed through the scoring.
I want to thank board members for their commitment to PRO, and for their partnership during the search process. I want to thank you – volunteers and sponsors, donors and staff – for the time, talent, treasure, ties, and testimonials you give to PRO so we can support people living with a Parkinson’s diagnosis. Finally, I extend my thanks to Holly and Melissa, our leaders old and new, for keeping our PRO heart beating so strongly in the past, in the present, and in the years to come.
MELISSA GREER, NEWEST EXECUTIVE DIRECTOR
Celebrating 20 Years!!
20 years of Sole Support for Parkinson’s is a remarkable milestone! It’s a testament to the dedication, passion, and perseverance of everyone involved in supporting those affected by Parkinson’s disease in our communities. From the first walks at Willamette Park in Portland and Esther Short in Vancouver to the addition of Eugene and Bend, Sole Support is now our largest awareness and fundraising event each year!
Over the past two decades, Sole Support has grown, adapted, and endured, while maintaining its primary purpose of gathering friends and family together to celebrate
the triumphs, challenges, and the support of a community united in a common cause. Reaching our fundraising goals each year allows PRO to provide vital services, programs, and resources at no cost to the growing number of people diagnosed every year.
As we celebrate 20 years, let’s take the time to remember and createthe new friendships, the stories shared, and the impact made by Sole Support.
Please join us this year in the 1k, 5k walk, or as a cheerleader to celebrate and make more Sole Support memories!
1. Find Your City or Where You Live Join us in person or walk on your own at home. We hope we will see you in person!
2. Start a Team or Join a Team While not required. It’s always more fun when you’re with friends and family.
FUNDRAISE
2023 raised the most money in Sole Support history! LET’S DO IT AGAIN! Follow these simple steps to get started. Set a goal – make it ambitious – and take action! Start with your own contribution then ask your friends and family to support your effort to help those with Parkinson’s.
The sooner you register, the more we can help you achieve your goals supporting this vibrant community. The needs for services provided by PRO are pressing and unrelenting. 100% of every dollar we collectively raise t Sole Support is invested in our local communities.
Let’s Get Started!!
1. REGISTER online www.solesupport.org or 800.426.6806
2. STRIVE to raise at least $300, helping your team achieve a higher goal. When you raise $100 you will receive the exclusive 20-year Sole Support t-shirt with a chance for additional incentive gifts along the way!
3. JUMP-START your fundraising by making a personal donation.
4. CUSTOMIZE your Sole Support walker page. Share a personal picture and story showcasing your motivation in supporting Parkinson’s programs in your community. Contact us for ideas and support.
5. INVITE others to join you. Make a personal request for donations and share your walker page via email/ social media. There are many ways to ask – it is never too early, and we can help!
Contact Jeannine (jeannine@ parkinsonsresources.org) if you want custom postcards, donation envelopes, or flyers to share.
FOLLOW us on Facebook and Instagram for updates and ideas.
CELEBRATE and make memories with family and friends!
“WALK IN A BOX”
Don’t live near or can’t attend a scheduled Sole Support walk? No problem.
This year we are introducing the “Walk in a Box” planning tool for smaller communities to join the fun and organize their own Sole Support walks. For more information contact Jeannine at jeannine@parkinsonsresources.org 800.426.6806.
Want to walk with family and friends in your neighborhood? Register at “Walk Where You Are” choose the date of the city closest to you or a date that works best for you before October 15th.
Calendar of Events
REGISTRATION AT WWW.PRO.EVENTBRITE.COM OR CALL 800.426.6806
Some of the details on these (and other programs) are still being finalized as we go to print. Please check our website (parkinsonsresources. org) or the event registration site (pro.eventbrite.com) for the latest information! It is critical that you register, so that we may plan materials and send links for virtual programs.
Want to stay current with updates and new program additions that occur between the quarterly print publication? Sign up for our emails! We send two emails a month with a focus on activity and services that are targeted for your interests and local geography. Call PRO if you aren’t receiving email from us at 800426-6806.
WELLNESS
Fill your week with a variety of classes!
Communication Skills Group
The new session starts July 12thJoin at any time. Fridays, 11 AM -------- VIRTUAL --------
Parkinson’s can take a toll on voice strength and clarity – research shows that people with Parkinson’s speak about 60% less than similarly-aged people without Parkinson’s! Join us to see if practice might help you avoid this situation.
This virtual series is led by Julia Robinson, Speech-Language Pathologist from Legacy Health. Just as you exercise your body to maintain movement, participating in voice exercise will help to maintain your voice clarity, volume and breathing! This class is great whether you have
participated in speech therapy or not; practicing within a group setting allows for some fun social connection as well!.
Thank you to Legacy Health for your support and partnership with this program.
Singing with PD- Hybrid
3rd Thursday of the month 2 - 3 PM
-------- HYBRID
All are welcome. We’ll have a Zoom link to share for those who are not able to join us in person at the PRO offices in Beaverton. Participants who join the fun virtually will also receive a song list and lyrics in advance of the group.
You will sing along with our gifted and beloved volunteers, Michelle Garratt, Jill Williams and Kera Magarill!
Movement Classes w/Laura Lou
New sessions start the first week of July
Mondays, Wednesdays at 11 AM & Fridays at 1 PM
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If you’re looking for an exercise class that helps with mobility but also leaves you with a smile on your face, join our virtual Movement class with instructor Laura Lou! Designed specifically for those with PD, the program combines yoga, tai chi, and dance to improve flexibility, strength, and balance. Instructor Laura Lou Pape-McCarthy also works to improve the use of facial muscles and incorporates vocal exercises while you move.
McMinnville Movement Series Thursdays 11 AM | McMinnville Senior Center
New session starts July 11th
-------- IN PERSON
The focus is on mobility and safety, with movements that improve strength, balance, endurance, and flexibility. Classes are designed to accommodate varying degrees of ability and limitations. Movements include gentle stretching, both seated and standing exercises, and hand-eye coordination. The class is a light-hearted, friendly environment of camaraderie where all are welcome with open arms! We share moments in life that bring a smile and a laugh! Instructed by longtime local fitness trainer Bill Wilson, BA, CPT-CSCS (ret.) who brings many years of expertise working with neurological challenges.
Breathing Yoga - Ongoing Mondays 5:15 - 5:45 PM
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Practice breath control and synchronizing breath with movement. Just 30 minutes helps energize the body and mind and reduce stress. This practice may benefit those with tremors, improve memory and cognitive functions, help with sleeping disorders, provide mental-emotional stability, build confidence, and improve quality of life.
Mindful Meditation Class
Wednesdays at 12:15 - 1 PM
Next session starts August 21September 25 (no class Aug 28) OK to start any time!
-------- VIRTUAL
If you are feeling anxious, stressed, or depressed, we offer Mindfulness FREE. Mindfulness activates brain circuits that help with feeling happy and regulate emotions. Instructor Martha McJacobs has been a mindful practitioner and teacher for over 40 years.
Carepartners are welcome to attend. Thank you to Washington County for sponsoring.
EVENTS AND EDUCATION
SUMMER HIKE SERIES – Hikes move to Wellness Returns! With Physical Therapist Sukhee So Chinn -------- IN PERSON
July 10th (Wednesday) 10:00 AM –starting at Fanno Creek Beaverton
August 14th (Wednesday)10:00 AM – starting at Tryon Creek State Natural Area
Join PRO and volunteer Sukhee So Chinn, Physical Therapist, as she leads the PRO hike series! This is a great place to meet new people and socialize as you exercise! Hikes are generally 1.5 miles total on mostly flat terrain, you set the pace for yourself and abilities! Sukhee has been leading hikes with PRO for over 10 years! Sukhee is happy to hike with you but also answer your questions about balance, exercise, and staying active with PD. You are welcome to bring trekking poles if you have them.
Newly Diagnosed and New to P-Town Meet Up
July 19 (Friday) 4pm – 5:30pm PRO Office Beaverton -------- IN PERSON
Whether you are newly diagnosed or new to the Portland metro area, you may be feeling a bit like a fish out of water. Change can be difficult when you don’t have people by your side. The goal of this event is to provide a place and space for people to make connections with others navigating similar changes. Keeping it casual, we’ll have some games to play and snacks to enjoy.
We welcome those who have recently relocated to the area, people who are newly diagnosed, care
partners, family, and friends to join us for a meetup and social hour at the PRO office in Beaverton. Typically, newly diagnosed includes people who have been diagnosed in the past three years or so.
Deep Brain Stimulation (DBS) Conversation - VIRTUAL July 26th (Friday) 4 - 5:30 PM -------- VIRTUAL
DBS is a surgical procedure to treat motor complications in Parkinson’s disease. If you are considering DBS, this is the place for you to learn more, ask questions, and hear about other’s experiences. If you’ve had DBS and would like to share or compare your experience with others, this is the forum for that connection. Registering is required!
-------- HYBRID
In this presentation, Joan Laguzza, LCSW will explore how to take care of your mental health if you are a family caregiver to someone with Parkinson’s.
Joan will share information about how to foster awareness of your mental health, how to understand what to do if you think you need help, and when/if to share emotional challenges with the person receiving care.
Joan Laguzza is a mental health therapist specializing in working with older adults and people with chronic and complex medical issues. She works in private practice in Lake Oswego.
Understanding OFF Episodes in Parkinson’s Disease
PERSON --------
Preparing for the Unexpected August 1st (Thursday) 2:00 p.m. Boomerang Therapy Works, Vancouver -------- IN
Illness, family obligations, and medical needs can all come unexpectedly for any of us, and for those of us in crucial roles as caregivers (for ourselves or others), it is important to plan.
In this discussion, Mike Mulligan, PRO Community Health Education Coordinator, will assist participants to identify the steps to take to get prepared. This includes rallying support and identifying roles ahead of time for family and friends, finding care resources, and gathering and organizing crucial information. By taking steps to prepare and communicate with your larger network, we hope to lessen the stress of “what will happen if I can’t be there?” and “What will happen if I need help?”
Mental Health and Caregivers
August 7th, (Wednesday) 1:00 p.m PRO Beaverton Office and Online
August 10th (Saturday) 1:00 p.m. Hilyard Community Center, Eugene -------- IN PERSON --------
Plan to attend this informative discussion led by Dr. Pinky Agarwal, MD. Dr. Agarwal will explore the impact of OFF episodes and dyskinesia on daily lives. As well as explain how Gocovri treats these episodes. There will be time for questions at the end.
Dr. Agarwal is a Neurology Specialist with over 24 years of experience in the medical field. She currently practices at the Evergreen Health Medical Center in Kirkland Washington. Presented by PRO Annual Sponsor, Supernus
Getting Back More Green Lights
- What to Do When Levodopa Stops Providing Consistent Symptom Benefit
PRO Beaverton Office and Online
August 21st (Wednesday) 1:00 p.m.
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HYBRID
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In this presentation, Dr. Zoltan Mari, MD, will discuss Parkinson’s and Off
Calendar of Events
periods and the role the medication Apokyn can play in addressing these episodes. Apokyn is different than other Parkinson’s medications in that it bypasses the GI tract. Because it uses a different route of administration, it is readily available in the brain to end off time and let you return to activity.
Dr. Mari is an expert in Parkinson’s Disease. Currently, he is the Ruvo Family Chair and Director for Parkinson’s Disease and Movement Disorders Program at the Cleveland Clinic’s Lou Ruvo Center for Brain Health in Las Vegas NV. Dr. Mari has previously served as full time faculty at Johns Hopkins University. Dr. Mari has been a part of dozens of clinical studies. Presented by PRO Annual Sponsor, Supernus.
Living Well Series, MondayVIRTUAL
August 19th & August 26th (Mondays) 1:00 p.m.
-------- VIRTUAL
Join us for an afternoon 2-part series workshop focused on lifestyle strategies to live your best life. Between visits to the doctor, your daily choices can help you manage symptoms. We will discuss the evidence behind recommendations about exercise, nutrition, provide strategies to manage healthcare information (including creating a healthcare notebook), building your care team, and discuss available resources. This educational program is for those living with PD, their families, and care givers. Whether you are new to PD, or you have been living with it for many years, there will be something of interest to everyone -along with opportunities to ask questions. Presented by PRO staff.
Parkinson’s 101 with Dr. Sara Bayta– VIRTUAL
September 7th (Saturday) 1011:30 am
-------- VIRTUAL --------
Are you concerned about symptoms you notice in yourself or a loved one? Have you recently been diagnosed? This program may help you understand what Parkinson's is and is not and why it is difficult to diagnose. During this lecture, Dr. Bayta will cover:
• What is PD? Disease progression and prognosis
• Initial Treatment: Medication, Rehab and Exercise
• Living with Parkinson’s: Non-motor symptoms
• Surgical and future therapies Dr. Sara Bayta, Movement Disorder Specialist with PeaceHealth Neurology in Springfield.
Advanced Stage Family Caregiver Workshop- VIRTUAL
September 9th and 16th (Mondays) 11:00 a.m.
-------- VIRTUAL --------
The advanced stages of Parkinson’s disease may last anywhere from several months to several years. Intensive, around-the-clock assistance is usually required. In the advanced stages of PD families are called upon to make difficult decisions about their loved one’s care. Even with the understanding that Parkinson’s disease is progressive, it is hard to be prepared. This education workshop will prepare family members and caregivers to approach the advanced stages of the disease with more confidence. Topics include the medical aspects of advanced PD, legal and estate planning, and hospice care.
Recognizing every family situation is unique, the program will educate caregivers about the issues and decisions impacting quality of life. [Speakers will include Dr. Lauren Talman, MD, Meredith Williamson,
J.D., and James Knoll, LCSW Hospice Clinical Education.]
Exploring the Option of DBS, Is it for You? With Dr. Seth Oliveria MD, PhD
September 30th (Monday) 4:00 PM
Providence Portland Hospital -------- IN PERSON
An in-person PRO event on the Eastside! Join us for this discussion led by Dr. Seth Oliveria. Dr. Oliveria is the Director of Functional Neurosurgery, Providence Brain and Spine Institute and with The Oregon Clinic Neurosurgery and Spine. This talk will address important questions you may have like: What is DBS? What benefits can I reasonably expect with DBS and what are its limitations? Am I a suitable candidate for DBS? What does DBS surgery involve and what is the recovery process like? How does treatment with DBS evolve as my Parkinson’s progresses and What is coming in the future for DBS treatment? Dr. Oliveria will also answer your questions. .
SOCIAL, COMMUNITY & FUN
SPIN Health Fair
August 3rd (Saturday) 10 am - 4 pm Campbell Community Center, 155 High St, Eugene -------- IN PERSON --------
15th Annual Health & Wellness fair in Eugene. This annual event is a great way to find out about local resources. Libby Kennard, Program Lead, will be there to share information and services about Parkinson’s disease with the local community.
Bend Sole Support Kick-off Event! 2024
August 25 (Sunday) 2:00-4:00, Boneyard Beer Pub -------- IN PERSON
Come join the fun at Boneyard Beer Pub for the Central Oregon
Calendar of Events
Sole Support Kick-off event. This is a special day for PRO. Boneyard is hosting their “Summer End Motorcycle Ride” benefiting PRO. So, we get proceeds from the ride and $1 for every pint sold! The Ride festivities are happening all day. Join us at the Kick-off from 2:00-4:00 and stay for the live band at 4:30. We can’t wait to see you and celebrate Parkinson’s Resources and PRO staff will be there to tell you about the Sole Support walks!
Eugene Summer Picnic
July 17th (Wednesday) 11 am -1 pm Emerald Park, 1400 Lake Dr., Eugene OR -------- IN PERSON
Eugene/Springfield Support Group hosts an annual picnic every summer. There will be good food, pie
and ice cream. We always have a great time. Anyone with PD is welcome. PRO staff will be there to tell you about the Sole Support walks.
Table Tennis at PRO Multiple Locations! -------- IN PERSON --------
There is strong evidence to support Ping Pong for Parkinson’s as therapeutic with benefits as a form of exercise and helpful with eyehand coordination. Join us Monday and Wednesday afternoons for a session with our coach and a little friendly competition at the PRO Beaverton office. Table Tennis for PD at the West Linn Senior Center on Tuesdays 1 PM. Drop in or call 800.426.6806 for details.
Home Care Reimbursement Program
For years, PRO has offered the Family Caregiver Respite Program, which aims to provide family care partners with some respite from caregiving tasks through the reimbursement of up to $600 for paid caregiver expenses.
Delivering programs that are relevant and accessible is an important part of our vision here at PRO, so we have decided to expand this program to include individuals who have Parkinson’s and live alone, who would benefit from the assistance of a paid caregiver to help them with their daily needs.
To reflect this expansion, we have renamed the program as the Home Care Reimbursement Program. The program is available to individuals who would benefit from the services from a paid caregiver, whether the services are for themselves or for a loved one with Parkinson’s in their home, and who are facing a financial barrier to obtaining the assistance. If approved for the program, individuals can have up to $600 in caregiver services reimbursed per year, for a maximum of two years.
For more information or to request an application, please call PRO at 800-426-6806.
BOARD OF DIRECTORS
Chair: Justin N. Smith
Vice Chair: Kristin Whitney
2nd Vice Chair: Scott Philips
Treasurer: David de Fiebre
Secretary: Laurie Ayers Pino
Immediate Past President: Kelly Sweeney
Directors at Large: Elise Anderson, MD
Todd Bauman
Melody Boyce
Larry Bradley
Barney Hyde
Jerry Hulsman
George Lee
Chad Naganuma
Joseph Quinn, MD
Ann Usher
Area Group Meetings
Our peer-led groups are meeting in person, online, and hybrid. If a group is hybrid, you can join via Zoom or in person. We also have PRO staff hosted meetings for all clients and carepartners needing support or engagement.
GENERAL INTEREST PD GROUPS
All Area General - Zoom
1st Wed, 1:00 pm PRO, 800.426.6806
Albany - In Person
2nd Wed, 4:00 pm
Lynn, 541.936.6154
Ashland - In Person
3rd Wed, 3:30 pm
Laurie, 650.575.8434
Astoria - In Person
2nd Mon, 1:00 pm
Donna, 503.738.5295
Beaverton - In Person
1st Thur, 12:00 pm PRO, 1.800.426.6806
Bend - In Person
3rd Wed, 2:00 pm Jess, 541.668.6599
Canby - In Person
1st Mon, 2:00 pm
Shirley, 503.380.1712
Clackamas - In Person 3rd Tue, 3:00 pm
Kim, 503.698.1600
Coos Bay - In Person
2nd Thur, 1:00 pm Aaron, 541.808.1336
Corvallis - Hybrid
2nd Tue, 11:00 am
Betty, 541.760.1737
Eugene/SpringfieldHybrid
2nd Tue, 10:30 am
Dave, 541.686.8615
Florence - In Person
4th Thur, 1:00 pm
JoAnne, 541.633.3330
Gresham - In Person
2nd Tue, 2:00 pm Kevin, 503.278.0516
Hermiston - In Person
3rd Wed, 1:30 pm Carol, 541.720.4256
Hillsboro - In Person
2nd Mon, 2:30 pm Mark, 503.718.7484
Klamath Falls - In Person
4th Tue, 1:00 pm Ron, 541.591.0686 Kate, 541.882.3928
La Grande - In Person
1st Thur, 4:00 pm Kate, 541.969.0883
Medford - In Person
3rd Sat, 12:00 pm Curt, 541.601.0602
Medford, Rogue Valley Manor - In Person 3rd Tue, 1:30 pm Meridel, 541.857.6605
Newberg - In Person
3rd Thur, 10:00 am Marshall, 503.550.7670
Pendleton - In Person
2nd Tue, 1:00 pm Michelle, 503.758.9648
Providence PortlandZoom 2nd Tue, 10:00 am Theresa, 971.358.9499
Redmond - In Person
2nd Mon, 1:00 pm Ginny, 541.548.6310
Roseburg - In Person 2nd Mon, 1:30 pm Sandy, 541.430.1286
Salem - In Person
2nd Tue, 1:30 pm Jayne, 503.930.4239
The Dalles - In Person 1st Thur, 10:45 am Chad, ChadSw@mcmc.net
The Springs at Tanasbourne - In Person 3rd Fri, 10:15 am Tina, 971.803.8144
Tigard - In Person 2nd Wed, 10:00 am Jane, 630.564.2624 Caren, 336.202.6601
Tillamook - Hybrid 2nd Thur, 2:00 pm Randy, 314.458.1970
Vancouver, WA - In Person 4th Mon, 1:00 pm Jan, 360.433.6400
West Vancouver, WAHybrid 3rd Fri, 1:00 pm Hope, 518.265.0340 Pat, 360.823.6683
West Linn - In Person 2nd Thur, 1:30 pm Tiffany, 503.557.4704
Area Group Meetings
Continued from Page 10
SPECIAL INTEREST GROUPS
Alternative ApproachesZoom
2nd Tue, 7:00 pm (alternates months)
Tasha, 503.788.2333
Beyond Parkinson’sZoom
Care Partner Loss Group
2nd Wed, 3:00 pm Libby, 541.345.2988
Caring for a ParentZoom
Care Partner Group
3rd Thurs, 5:00 pm
PRO, 800.426.6806
Eugene/Springfield YOPD <50- Zoom
3rd Tue, 6:30 pm
Libby, 541.345.2988
MSA/PSP - Zoom
4th Sat, 10:30 am
Akiko, 503.853.9584
CARE PARTNER GROUPS
All Area Care PartnerZoom
4th Wed, 1:00 pm
PRO, 800.426.6806
Ashland - Zoom
Care Partner Group
1st & 3rd Fri, 9:30 am
Ann, 415.279.8754
Astoria - In Person Care Partner Group
4th Tue, 1:00 pm
Donna, 503.738.5295
Dementia and PD - Zoom Care Partner Group
1st Thurs, 1:30 pm PRO, 800.426.6806
AM Women Care Partners - Hybrid Care Partner Group
1st Tues, 11:00 am Martha, 503.830.7246
Eugene/SpringfieldZoom
Care Partner Group
4th Tue, 1:30 pm Carla, 541.515.6604
Lewy Body DementiaZoom
Care Partner Group
2nd Sat, 1:00 pm 4th Wed, 10:00 am Kathy, 971.222.7526
Newly Diagnosed < 3 yrsZoom
2nd Wed, 1:30 pm PRO, 800.426.6806
PD without a PartnerZoom
4th Thurs, 1:00 pm
Sheri, 503.348.2665
Portland YOPD Happy Hour - Zoom
3rd Fri, 4:30pm Jeff, jeff.lasley@gmail.com
Women with PD - Zoom 1st Mon, 5:00 pm Nicol, 253.226.4069
MSA/PSP - Zoom Care Partner Group
3rd Fri, 12:00 pm PRO, 800.426.6806
Portland - Zoom Care Partner Group
1st Tue, 7:00 pm Jennifer, 503.318.5283
Women Care PartnersZoom Care Partner Group
1st Wed, 3:00 pm Mary, 503.579.2792
Vancouver, WA - In Person Care Partner Group 1st Mon, 1:00 pm Jan, 360.433.6400
Vancouver, WA - Zoom Care Partner Group 2nd Fri, 1:00 pm Diana, 360.892.1985
SUPPORT GROUP FOR TIME OF LOSS
Beyond PD Support Group meets online on the 2nd Wednesday of each month at 3pm. This meeting is for people who have lost someone to Parkinson’s recently. It is a small, newly formed group that is welcoming new members. Please contact Libby Kennard for information - 541.345.2988.
PERSPECTIVES
Letter from Holly pg 1
Holly & Melissa pg 2
Peer Mentor Program pg 2
Our Bright Future- Letter from Chairman pg 3
Sole Support pg 4
Walk in a Box pg 5
Calendar of Events pg 6
Home Care Reimbursement
Program pg 9
Area Group Meetings pg 10
Research Studies Recruiting
Locally pg 12
CONTACT US
info@parkinsonsresources.org toll-free: (800) 426-6806
Parkinson’s Resources of Oregon
8880 SW Nimbus Ave Ste B Beaverton, OR 97008
Return Service requested If
Permit No. 145 Beaverton, OR
Research Studies Recruiting Locally
Are you interested in participating in genetic testing research for Parkinson’s disease? OHSU has two active recruiting studies that may be a good fit for you!
1. PD GENEration: Mapping the Future of Parkinson’s Disease
The initiative, sponsored by the Parkinson’s Foundation, offers free testing for the “top 7” genes associated with PD. Participation involves signing a research consent document, providing some background information about yourself, and then having a blood draw for genetic analysis. Results are shared with the patient participating and, if necessary, genetic counseling is available for explaining complicated results. Patients with positive tests can then be referred to research oriented for specific gene
mutations, such as our BIAL trial (see below for details).
2. ACTIVATE: A clinical trial to test a new medication for the treatment of Parkinson’s disease in patients with a GBA1 gene mutation
This trial is a two-part study that involves a genetic screening (Part A) in which you will be tested for GBA1 gene variations. To complete Part A of the trial, you will come into campus and our team will conduct a few assessments and collect blood for genetic screening. If we find out that you have a variant of the GBA1 gene, you will be invited to participate in Part B of this clinical trial. If you have a known GBA1 mutation from previous testing, such as with PDGene, you will be able to start participation with Part B. In Part B we will be testing a
new investigational medication called BIA 28-6156. You will be assigned to one of three treatment groups. Depending on the group you are in, you will take active medication or placebo. The study will require daily dosing of the study medication for 78 weeks (about 1 and a half years) and periodic visits to OHSU’s campus for assessments including: scales and questionnaires, vital signs, electrocardiograms, blood and urine collection. You will also wear a smartwatch daily and complete assessments using a smartphone at home.
If you are interested in participation or in learning more about Parkinson’s disease research opportunities at OHSU, please email or call us at PDResearch@ohsu.edu or (503)494-8881.
