The Parkinson’s Perspective
Seeing PD Through Different Lenses: Perspective from a Daughter and Doctor
BY ANGELA SHAHBAZIAN, OD, FAAO ASST PROFESSOR OF HEALTH SCIENCES HERBERT WERTHEIM SCHOOL OF OPTOMETRY & VISION SCIENCE
As a 25-year veteran living with Parkinson’s disease (PD), my mom is an authority on the disease: how it affects everyday life in big and small ways, how it changes over time, and strategies to improve symptoms and quality of life. But even this seasoned expert experiences new and surprising challenges in her journey through PD. Her latest challenge has been in navigating how PD has changed her eyes and her vision.
At first, she noticed simply that her eyes were “tired” at the end of the day: reading became more difficult, and her eyes felt gritty and irritated. She was able to manage this relatively well by using glasses for reading and eye drops for dry eyes. Later, she noticed that even with reading glasses it was difficult to keep her place on the page and sometimes she would notice double vision. This of course made reading more slow and laborious.
One day, when visiting an eye doctor for a routine visit, she was told she had glaucoma and needed to take eye drops to manage it. While it was impossible to perceive on a day-to-day basis, her glaucoma slowly progressed over the
next decade or so and she eventually began to notice that it was difficult to see on her right side. She also noticed that she lost her depth perception and no longer felt safe driving.
Now, my mom has made many changes in her life due to the changes in her vision: she uses yellow-tinted lenses at times to cut down on the glare she experiences in bright sunlight. She closes one eye at times when reading to avoid double vision and make her vision more clear. She has had a variety of rigorous daily routines of eye drops to manage her glaucoma and advancing dry eyes. She takes care not to tire herself out during the day, and if she starts to see visual hallucinations in the evening, she takes it as a cue to retire for the day.
My mom’s visual journey has had surprises not only for her, but also for me. As a practicing optometrist who regularly lectures on ocular manifestations of systemic disease, I was aware of the symptoms she may have. But there’s nothing like real-world experience, and after several years and many doctors’ visits I can now “see” how these symptoms have changed the way she inter-
acts with her world visually. Still, my mom is the real expert on her visual needs, and through this journey she has become a fierce advocate for her eyes and her vision. I’m honored to share this journey with her.
To learn more about the challenges that come with Parkinson’s disease and vision on Monday, February 3rd for an online education program with Dr. Shahbazian. See further details on p5
Angela with her Mom, Marilyn Veomett
An Appreciation of Teamwork!
We are filled with gratitude for the resilience and dedication of our staff and we are thankful for the way our team has navigated change with grace, commitment, and a shared sense of purpose. Their leadership has been instrumental in moving our mission forward during this time of transformation.
We are also excited to welcome our newest members, whose skills and enthusiasm have brought fresh energy and perspectives to PRO. Together, we look forward to a new year of continued growth and success.
If you haven’t heard by now, May Mobbs joined the PRO team in November as the Program Coordinator for Central and Eastern Oregon. Born in Singapore and raised in Texas, May’s journey recently brought her to the breathtaking city of Bend. With a history of relationship-building in multifamily housing and senior independent living, and as President of the Senior Care Network, she felt there was more she could do to make a difference in her newfound community. Cue her role at Parkinson’s Resources of Oregon, where she combines her passion for supporting older adults with a commitment to building meaningful networks across Central and Eastern Oregon. Overseeing support groups, connecting people with resources, and organizing educational programs to empower clients and their families are just a few of the rewarding aspects of her role.
Programing in 2025
As we begin 2025, we see this year as a renewal of our commitment to our mission. We help people affected by Parkinson's understand the disease, prepare for the future, and connect with a community so that no one faces this alone. The relationships we form with people who reach out for resources or attend our support groups and education programs shape our programmatic decisions. They enhance our comprehensive helpline resources, and enable us to create more peer connections in every community we serve.
Being true to our grassroots DNA
that spans 45 years of service, we are dedicated to deepening our connections to local communities by fostering a welcoming and inclusive culture where everyone can contribute to our important work in a meaningful way. While we will continue to have some virtual programs, when we bring a program to where you are, we make a direct and personal connection. We are learning from you, as you learn from us and even more importantly you connect with and learn from each other.
The convenience of an online program means family members aren't
pulled away from caregiving responsibilities. If there is a specialized topic, it sometimes works for us to share this as an online program to make it accessible to everyone across our region. We also select some issues for inclusion in our growing online educational video library. However, our flagship is our in-person programs. We look at this opportunity to travel to regions of the state to engage with groups, both small and large, as an investment in customized, interactive workshops is worth it. We hope to meet you where you are and always appreciate your input and involvement along the way!
Book Review by Jeannine Walker
AN ALERT, WELL-HYDRATED ARTIST IN NO ACUTE DISTRESS, A MEMOIR BY CATHERINE ARMSDEN
With compassion, humor, and grit, "An Alert, Well-Hydrated, Artist in No Acute Distress" guides us on a journey of friendship bound by years of seeking a diagnosis and misdiagnosis of Parkinson's disease. In this heartfelt and deeply personal memoir, author Catherine Armsden and artist Hadley Ferguson invite us into their real-life challenges of managing and living with a debilitating disease. After meeting in an online Parkinson's support group and quickly became long-distance friends. It became apparent to Hadley she had been misdiagnosed with Parkinson's. Her traumatic and frustrating path took her to six states for numerous tests, resulting in inconclusive and contradictory diagnoses.
This book is part critical commentary on the American healthcare system and part personal handbook on Par-
kinson's disease. It is structured to alternate between Catherine and Hadley's personal experiences and insights on the causes and treatment of Parkinson's, navigating the doctor-patient relationship, errors made in diagnosis, and the role of advocacy and empathy in healthcare.
Despite the odds, Catherine and Hadley's unwavering determination is a source of inspiration for everyone. Through passion and resilience both amazing women continue to pursue their careers.
Check Off an Easy Win: Monthly Giving
Monthly giving—also known as recurring giving—is when our supporters commit to making a contribution of a fixed amount to PRO on a monthly basis, instead of just a one-time donation. This approach to charitable giving offers multiple benefits for both you (the donor) and PRO.
Monthly giving permits you the flexi-
bility of contributing an amount that fits comfortably within your budget, enabling you to spread out your support over the course of the whole year, thus making giving even more manageable. Automated giving, or “set it and forget it” payments, make it effortless for you, and this simplicity also benefits PRO by reducing administrative overhead/staff time.
After a super-simple one-time setup, your credit card or your bank account is debited automatically— and you never have to think about it again! Knowing we can count on you month after month as part of a predictable income stream also helps us address long-term initiatives and goals, and does even more to make sure everyone can access resources.
Contact our office today online at www.parkinsonsresources.org or at (800) 426-6806 to get set up in less than two minutes, and enjoy that satisfied feeling of accomplishing a new year’s goal already. Cheers to a great—and easier—new year!
Calendar of Events
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 in time 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 800-426-6806.
WELLNESS
Communication Skills Group Fridays, 11 AM
New session starts January 3 - Start any time.
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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.
Sing-Along- Hybrid 4th Thursday of the month at 2PM
-------- 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 DAY AND TIME* Saturdays at 11 AM
New sessions start January 11 - March 29
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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 sessions January 2 - March 27
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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 4:45 - 5:15 PM
New sessions January 6 - March 31 -------- VIRTUAL
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
New sessions January 15 - February 19 -------- 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. Her passion is to help people experience life in the present moment with courage and kindness. Carepartners are welcome to attend. Thank you to Washington County for sponsoring.
EVENTS & ACTIVITIES
Personal Care Series for People with PD & Care Partners
January 21 and 28 (Tuesdays) 1pm2:30pm -------- VIRTUAL
This two part series is led by Mindy Laidlaw, OTR, Occupational Therapist with St Charles Health System. Ms. Laidlaw will provide instruction and ideas regarding strategies and equipment to assist with bathing, dressing, toileting, mobility, and cooking/feeding.
Lift Workshops for Family Caregivers
Corvallis: February 1 (Saturday) 1:00pm
- 2:30pm, Hannah McAllister, OT
Beaverton: March 12 (Wednesday) 1:30pm - 3:00pm, Sukhee So Chinn, PT, DPT
Salem: Date pending! -------- IN PERSON
Does your loved one have trouble with mobility? Are you worried about how to help them out of bed or out of a car? Or do you just want to be prepared for what may lie ahead? During this hour-and-ahalf program a physical or occupational therapist will lead you through the proper and safe techniques to transfer your loved one who has mobility issues due to Parkinson’s disease. This is an interactive workshop for family caregivers only, space is limited.
Your Vision and Parkinson’s February 3 (Monday) 1pm - 2pm -------- VIRTUAL
Did you know that Parkinson's disease can impact eye health and vision? If you are living with Parkinson's disease, you may be more likely to experience dry eye disease, double vision, reading difficulties, and even optic nerve damage. This program will review the various ocular symptoms that patients with Parkinson's disease may experience and provide tools for how you can advocate for the best possible management of these symptoms. Our presenter is Angela Shahbazian, OD, FAAO, Assistant Professor of Health Sciences at the Herbert Wertheim School of Optometry & Vision Science at the University of California, Berkeley. In addition to her expertise as an optometric physician and instructor of optometry, she will share some of her insights as the daughter of someone who is living with Parkinson's and the unique perspective that brings to her clinical practice.
Basics and Beyond
March 6 (Thursday) 10:45am – 12pm
The Dalles: Adventist Health Columbia Gorge
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Whether you were recently diagnosed, going through transitions as your symptoms change, or are a family member of someone with Parkinson's disease, this
lecture will help you piece together an understanding of this complex neurological condition.
Please join Dr. John Herndon, Movement Disorders neurologist at Oregon Health & Science University, for Basics and Beyond a Parkinson's review. Equip yourself with the latest evidence-based knowledge on treatment options and best practices for working with your care team.
SOCIAL, COMMUNITY & FUN
Dance for PD® Valentines Dance
February 14 (Friday) 2:00 - 3:15 pm
Beaverton: PRO Office
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All are welcome to come enjoy some fun socializing and dancing to celebrate Valentine’s Day!
Understanding PD Dementia
March 25 (Tuesday) 7pm – 8:30pm
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This webinar is part of Oregon Care Partner's family caregiver series. Libby Kennard, Program Lead with Parkinson's Resources will discuss the distinctions between Parkinson's disease dementia and other types of dementia. It will cover effective communication strategies and address interventions for hallucinations and behavioral challenges. Register for this and any of the family caregiver webinar series at https://oregoncarepartners.com
Research Studies
Recruiting Locally at
The goal of this study is to investigate differences in physiological changes in the brain of patients with Parkinson’s disease (PD) associated with immediate release carbidopa levodopa (CL IR) compared to long-acting levodopa (Rytary) over the course of a typical cycle of medication. The relatively short period during which CLIR is effective in controlling symptoms often leads to fluctuations in clinical benefits. Such fluctuations have major negative impact in day-to-day quality of life for patients with PD. The long acting formulation of levodopa (Rytary) is associated with fewer fluctuations. The goal of this study is to examine the effects of immediate and long-acting formulations on physiological measures which relate to clinical manifestation of symptoms. This is done by collecting levodopa plasma levels (blood samples), changes in brain signals recorded with electroencephalography (EEG), and changes in quality of gait (measured with wearable sensors), before a dose and at 30-minute intervals after a dose of the relevant medication (CL IR or Rytary) for 4 hours. If selected to participate, the study compensates $50 per visit completed for a total of $150.
Study participation includes:
• Screening visit to sign consent form and collect provided at-home devices
• Using at-home devices for 8 weeks to keep track of daily medication times and complete weekly gait and balance tasks
• 5-hour baseline visit two weeks after screening visit
• Take Rytary (dosage recommended by study doctor) for 2 weeks
• 5-hour Rytary visit two weeks after baseline visit
At the Baseline and Rytary Visits you will:
• Arrive OFF of Parkinson's medication (withholding medication for 12 hours)
• Be fitted with an EEG cap
• Have an IV line placed for 9 total blood draws
• Complete OFF and ON Parkinson's symptoms testing
• Complete gait and balance tasks every 30 minutes
• Complete 1-minute finger tapping test every 30 minutes
You may be eligible to participate if you:
• Are age 50-85 with a Parkinson's Disease Diagnosis
• Are able to walk unassisted for 2-minutes when your Parkinson's medications are working well
• Have had a positive response to immediate-release carbidopa-levodopa (CL IR) medication
• Have fluctuations in your medication state (fluctuations of your ON/OFF time)
• Are currently taking CL IR 4 or more times per day
• Are willing to switch to long-acting carbidopa-levodopa (Rytary) for 2-weeks
• Have no known intolerance for long-acting carbidopa-levodopa (Rytary)
• Are willing to go without Parkinson’s medications for 12-hours prior to the two study visits
• Do not have an implanted Deep Brain Stimulator
• Do not have significant/troublesome dyskinesia, i.e., dyskinesias that impact your ability to complete your daily activities
If you are interested in learning more about this project or any of our other ongoing studies, please contact Magda Armendariz Sullivan, Clinical Research Assistant, at 503-501-8478 or Armendam@ohsu.edu
IRB Approved: 10/22/2024
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
Chad Naganuma
Joseph Quinn, MD
Ann Usher
Linda Bryans (New)
We are seeking passionate individuals to join our board or directors and help Parkinson’s Resources achieve our mission to empower individuals to meet the challenges of living with Parkinson’s disease through information, education, personal support and advocacy for a cure. Welcome lived experience with PD or as a carepartner. Interest and willingness to engage in fundraising to advance the mission is also desirable. Special interest in board members representing Clark County or Central Oregon.
Area Group Meetings
Groups are peer-led or facilitated by community members. Groups meet 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.
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 2nd Wed, 10:00 am Caren, 336.202.6601
Bend - In Person 3rd Wed, 2:00 pm Nancy, 503.799.5311
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 Thurs, 1:00 pm Aaron, 541.808.1336
Eugene/SpringfieldHybrid 2nd Tue, 10:30 am Dave, 541.686.8615
Florence - In Person 4th Thur, 1:00 pm JoAnne, 541.633.3330
Gresham - Hybrid 2nd Tue, 2:00 pm Kevin, 503.278.0516
Hermiston - In Person 3rd Wed, 1:30 pm Sheila, 541.561.7576
CARE PARTNER GROUPS
All Area Care PartnerZoom
4th Wed, 1:00 pm PRO, 800.426.6806
Ashland - Zoom 2nd & 4th Fri, 9:30 am Ann, 415.279.8754
Astoria - In Person 4th Tue, 1:00 pm
Donna, 503.738.5295
AM Women Care Partners - Hybrid 1st Tues, 11:00 am Martha, 503.830.7246
Dementia and PDZoom
1st Thurs, 4:30 pm Libby, 541.345.2988
Hillsboro - In Person 2nd Mon, 2:30 pm Mark, 503.718.7484
Hillsboro, East - In Person
3rd Fri, 10:15 am Tina, 971.803.8144
Klamath Falls - In Person
4th Tue, 1:00 pm Ron, 541.591.0686 Kate, 541.882.3928
La Grande - In Person 1st Thur, 4:30 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
Milwaukie, Rose Villa 2nd Tue, 10:00 am MaryHelen, 503.652.3044
Newberg - In Person 3rd Thur, 10:00 am Marshall, 503.550.7670
Pendleton - In Person 3rd Mon, 4:00 pm Michelle, 503.758.9648
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, swansoce@ah.org
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, WA-Hybrid 3rd Fri, 1:00 pm Hope, 518.265.0340 Pat, 360.823.6683
West Linn - In Person 2nd Thur, 1:00 pm Tiffany, 503.557.4704 Jan, 503.319.7062
Eugene/SpringfieldZoom
4th Tue, 1:30 pm Libby, 541.345.2988
Lewy Body DementiaZoom
2nd Sat, 10:00 am 4th Wed, 10:00 am Kathy, 971.222.7526
SPECIAL INTEREST GROUPS
Alternative Approaches - Zoom
2nd Tue, 7:00 pm (alternate 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
Eugene/Springfield
YOPD <50- Zoom
3rd Wed, 6:30 pm Libby, 541.345.2988
MSA/PSP - Zoom
MSA/PSP - Zoom 3rd Fri, 12:00 pm PRO, 800.426.6806
Portland - Zoom 1st Tue, 7:00 pm Jennifer, 503.318.5283
Newly Diagnosed < 3 yrs - Zoom
2nd Wed, 1:30 pm PRO, 800.426.6806
Women Care Partners - Zoom
1st Wed, 3:00 pm Mary, 503.332.1700
Vancouver, WA - In Person 1st Mon, 1:00 pm Jan, 360.433.6400
Portland YOPD Happy Hour - Zoom
3rd Fri, 4:30pm Jeff, jeff.lasley@gmail. com
3rd Thurs, 5:00 pm Dakota, 702.682.0954
4th Sat, 10:30 am Akiko, 503.853.9584
PD without a PartnerZoom
INTERESTED IN HELPING START A NEW SUPPORT GROUP FOR YOUR COMMUNITY?
4th Thurs, 1:00 pm Sheri, 503.348.2665
CONTACT PRO @ 1.800.426.6806 FOR MORE INFORMATION!
Women with PDZoom
1st Mon, 5:00 pm Nicol, 253.226.4069
PERSPECTIVES
Seeing PD Through Different Lenses pg 1
An Appreciation of Teamwork with May Mobbs pg 2
Programing in 2025 pg 2
Book Review pg 3
Monthly Giving pg 4
Calendar of Events pg 5
Researching Studies Recuitig
Locally OHSU pg 6
Area Group Meeting pg 7
Training Dance for PD pg 8
Parkinson’s Resources of Oregon
8880 SW Nimbus Ave Ste B
Beaverton, OR 97008
Return Service requested
CONTACT US
info@parkinsonsresources.org toll-free: (800) 426-6806
Training Dance for PD ® Introductory
Register now for this 2-day Training Thursday April 10th and Friday, April 11th | 9:30AM -5:30PM Location: Lakewood Center for the Arts | Lake Oswego Oregon
For Dancers, dance teachers, students, therapists and allied health professionals.
Please join this phenomenal opportunity to immerse yourself in this acclaimed global program that helps people with Parkinson’s experience the joys and benefits of dancing. Facilitated by David Leventhal, Dance for PD founding teacher and Program Director and Shawn Robert, Certified Dance for PD teaching artist.
Workshop highlights
• Learn best practice and evidence-based methods from expert Dance for PD teaching artists
• Hone your teaching skills
• Deepen your knowledge with our specially created modules and acclaimed interactive session.
• Become part of a global network of passion instructors in 30 countries
• Participate in an actual Dance for Parkinson’s community class with member of the Portland Parkinson’s community
You must apply to be considered. For tuition cost and application details, scan the code below.
*PRO is a proud supporter of this program, please note, this program is not funded by PRO or any of its affiliates. PRO does not receive any financial compensation.
