THE PARKINSON’S PERSPECTIVE Newsletter Volume 37, Issue 3
MAY/JUNE 2017
Serving OR and S. WA
PROFESSIONAL CAREGIVER TRAINING By Libby Kennard, MA, CMC
IN HEALTHCARE EDUCATION, WE KNOW THERE IS VERY LITTLE TIME FOCUSED ON DISEASE-SPECIFIC CARE. ONE NURSE WE KNOW REPORTED AN RN TYPICALLY RECEIVES ONLY AN HOUR OF EDUCATION ABOUT PD! Without question, Parkinson’s disease presents some unique challenges in regard to motor fluctuations, vast disparities from one person to the next, extremely complicated medication regimens and a host of non-motor symptoms. In response to requests from families concerned about quality of care and with support of members of the Long Term Care profession, PRO created a long term care training program for professional caregivers as a way to improve the quality of care by bringing best practices for PD care to the staff working in care communities and in-home care setting. In the training, there is equal emphasis on understanding the disease process balanced with practical guidance about how to apply this knowledge to daily work functions. Caregivers learn to distinguish between an action tremor, resting tremor, dystonia and dyskinesia. These distinctions are important not only in connection to medication dosage and timing but also in terms of how to provide help with personal care. This knowledge helps staff observe and report changes accurately and know how to better accommodate the needs of a person with Parkinson’s. By incorporating strategies used in Parkinson’s therapies, we teach techniques to prevent freezing of gait, falls and MAY/JUNE 2017
swallowing problems. For instance, anticipating that a crowded elevator may lead to freezing, a caregiver might plan to take the person to the dining room before the rush which also gives the person who is slower more time to eat.
and anecdotes to help convey what is like to live with PD and discuss the amazing impact of available Parkinson’s therapies and wellness approaches.
SEE PAGE 8 FOR MORE GALA INFORMATION
We have an entire module dedicated to medications. It is THAT important to us to help caregivers have a strong foundation about the complexity of how the medications work at different stages of the disease. This helps them recognize the difference between “on” and “off” symptoms and it is so rewarding to see the realization that simply maintaining adherence to a medication schedule can dramatically improve quality of life! Participants problem-solve to address common barriers and discover creative solutions together.
While this program is specifically for professional (paid) caregivers, we teach a team approach and emphasize the importance of including the person with Parkinson’s and the family to actively participate in care planning and ongoing communication for better continuity. In addition to the Professional Training Series, PRO periodically offers classes specifically for family caregivers as well. To find out more about this Long Term Care Professionals training or to bring it to your community, please contact Libby in Eugene at 541.345.2988 or Melissa in Portland at 503.594.0901.
In recent months, Melissa Moran and I were in Redmond and Eugene to roll out updates and improvements to the training program. Altogether, the curriculum is nearly a full day of training covering a disease overview, medications, personal care, communication, swallowing and cognition. We encourage assisted living providers, adult foster care home owners, in-home care providers and other helping professionals to attend. We include videos
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SAVE THE DATE PLEASE STAY IN TOUCH VIA EMAIL, FACEBOOK, TWITTER, THIS NEWSLETTER, AND OUR EVENT REGISTRATION SITE. WWW.PRO.EVENTBRITE.COM
PARKINSON’S RESOURCES Events May 13th Educate.Inspire.Empower in Bend. Join us for the third and final conference of our spring series. In Bend we will learn from Dr. Pinky Agarwal as she discusses best practices in therapies and medications. Additionally, sex therapist Sheila Silver, MA, DHS, ACS will be on hand addressing concerns surrounding intimacy in the face of chronic disease. 800.426.6806. June 3rd Practical Skills for Caregivers in Milwaukie. Parkinson’s Resources of Oregon is partnering again with Providence ElderPlace to offer this workshop just for family caregivers. Lunch is included and respite care can be arranged for in advance.
June 21st. Mindfulness Program. Eugene. Learn about mindful practices that cultivate the resilience to manage PD symptoms and other chronic conditions such as pain and anxiety. We are bringing together a host of experts. You will get to try a variety of types of practice to see what’s right for you. July 21st. Lunchtime Lecture in Astoria. Dr. Rosenbaum joins us for a presentation in Astoria talking about research developments with a closer look at the promise of stem cell therapies.
OHSU Events May 18th, Essential Tools for Parkinson’s Disease. Register for this 2 hour workshop hosted by OHSU at the Residence Inn. Speakers are Dr. Joe Quinn and Dr. Joel Mack. $10 registration fee. Contact Jenn Brownstein 503-494-9054. Brian Grant Foundation Events On June 25th The Brian Grant Foundation Wellness Retreat provides a day of exercise, nutrition, and emotional health sessions for people with Parkinson’s and their care partners. Yoshida’s Garden View Estate. Registration fee is $50. https:// bgfretreat.eventbrite.com
SAVE THE DATE - SOLE SUPPORT FOR PARKINSON’S THIS AUTUMN! September 17th Eugene September 24th Vancouver October 15th Portland
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Interested in helping to support a satellite walk in your community? Contact Tracy (devsupport@parkinsonsresources.org) for a toolkit and all the info you need for success!
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PLANNED GIVING Contributed by Lauren Tietsort, Development Director WHEN YOU INCLUDE PRO IN YOUR ESTATE PLANS, YOU HELP ENSURE PEOPLE IN OUR REGION HAVE ACCESS TO INFORMATION AND PROGRAMS WHICH EDUCATE, INSPIRE, AND EMPOWER THE NORTHWEST’S PD COMMUNITY.
Due to the generosity of individuals like you, Parkinson’s Resources is able to continue serving our region by connecting residents of Oregon and Washington with local services, resources, and experts, giving voice to the community, and improving the quality of life for those living with Parkinson’s disease.
member. “We don’t have any idea how long we will live with this disease, nor how debilitating it will get. This uncertainty can make it hard to commit to nonprofits like PRO, which I want to support greatly. When I think of my kids and medical expenses – there are just so many unknowns to what will be left after my death. Because of this, I encourage donors to consider leaving a percentage to the nonprofits they wish to leave a legacy through. This allows them to generously support the longevity of the organization while relieving them of the concern of making a commitment of a firm dollar amount.” When you include PRO in your estate plans, you help ensure people in our region have access to information and programs which educate, inspire, and empower the
Did you know there are creative ways to support Parkinson’s Resources of Oregon? Ways in which PRO, you, and your loved ones all benefit at the same time? Current giving can include cash, real estate, vehicles, and other assets. With this type of giving, we welcome donors into our giving circles: Stepping Stones: recurring donations • Journey Circle: Annual giving $1,500 - $4,999 • Navigator Circle: Annual giving $5,000 - $9,999 • Pathfinder Circle: Annual giving $10,000 and up • Compass Circle: Planned giving donors
monthly
Planned Giving Options Include: • Simple Bequests are made through a donor’s will or living trust. It is easy to establish, revocable, and tax deductible. • Charitable Remainder Trusts provide a specified distribution percentage to one or more (income) beneficiaries for life, or a term of years, with the remainder interest paid to charity. • Charitable Lead Trusts establish a charity as the lead beneficiary for a lifetime or term of years, after which the remaining assets are distributed to the donor or other beneficiaries. • IRA Beneficiary Designations are free of estate and income taxes. If you would like to extend your support through your estate, or a gift that provides income during your lifetime, there are many gift options. We can help you find a plan that meets your needs and benefits our region by strengthening PRO’s long into the future. Greg Chaille and I are always available to meet with you to discuss this opportunity for a long term investment in PRO’s services. Or let us know you are interested and we will be sure to invite you to our next coffee and conversation, where we gather for an informal discussion about the various options. Lauren Tietsort, Development Director | 503.344.6952 or 800.426.6806 | lauren@ parkinsonsresources.org
“Considering planned gifts for Parkinson’s patients like me can be very difficult,” shares Greg Chaille, retired president of Oregon Community Foundation and PRO board
MAY/JUNE 2017
Northwest’s PD community. Such giving techniques are called “planned gifts,” because with thoughtful planning, you can create meaningful impact solutions for you and PRO, providing a legacy to benefit individuals and families facing Parkinson’s disease.
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PARKINSON’S DISEASE PUBLIC POLICY Holly Chaimov, Executive Director OUR DELEGATIONS FELT GREAT SUPPORT FROM THE STAFF AND OFFICIALS WE SPOKE WITH BUT WE NEED TO CONTINUE TO PRESS AND REMIND THEM THAT THEIR CONSTITUENTS AT HOME ARE COUNTING ON THEIR ACTIONS. the conversations with friends, family and colleagues, and most critically, by learning about and becoming involved with Local, State and National initiatives to improve care, advance therapies and fuel research to one day eliminate Parkinson’s. This past February I had the good fortune of joining with other delegates from the Northwest in Washington, DC for the Public Policy Forum, now hosted by the Michael J. Fox Foundation. We spent two days learning about important public policy issues that have direct impact on health and quality of life for those living with PD. Then, we took to Capitol Hill to share our passion in meetings with elected members of the Senate and House of Representatives.
By the time this article is in your mail box, Parkinson’s Disease Awareness Month will be in the record books. I saw lots of reason to be proud of our work and that of others in the community. Governor Brown declared April to be Parkinson’s Awareness Month with an official proclamation, social media lit up with special ribbons and people bravely shared their stories. There were countless exhibits and displays across the region. Just because the “designated month” is over it doesn’t mean our work is complete. In fact, we can make great progress by taking advantage of this increase in public dialog about Parkinson’s disease by continuing
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With the change in administration in Washington DC, there were some among us who were a little nervous, not wanting to wade into politics… but everyone soon realized that the issues we were there to discuss weren’t Democrat or Republican. Access to Healthcare, Supporting Family Caregivers, Improving Therapies and even simply knowing how many Americans live with Parkinson’s disease – these were the topics we sat and addressed. I am pleased to say that our meetings were productive and our Oregon and Washington delegations felt great support from the staff and officials we spoke with. We need to continue to press and remind them that their constituents at home are counting on their actions. What can you do? The first step is sometimes the hardest – share your story. You will be blown away by the support and compassion that comes back to you. Over and over again, I hear how one simple conversation had lasting impact and even helped connect other PwP with services they didn’t even know existed. Second, get informed. Learn about the public policy issues and bills that
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might be coming up this legislative session. One I am watching for is the RAISE Family Caregivers Act which would direct the Department of Health and Human Services to establish a strategy to support family caregivers. Third, sign up for Action Alerts to get emails in your inbox when important decisions and votes are being made. (email Holly@parkinsonsresources.org to add your email to her list.) And finally, send a letter, attend a town hall meeting, or make a phone call to your elected officials. Tell them your story so they know how their decisions will impact you on a personal level.
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 Barney Hyde Treasurer
Lucien Burke, M.D 1st Vice President Kristin Whitney Secretary
Directors at Large: Richard Brown Greg Chaille George Gregores Hank Grootendorst Gerald Hulsman Paul Labby Ryland Moore Kay Parr Joseph Quinn, MD Richard Rosenbaum, MD Justin N. Smith Kelly Sweeney Marilyn Veomett Peggy Wood
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VOLUNTEER OPPORTUNITIES Are you a Social Worker? The Lewy Body Dementia Care Partner Support Group is looking for additional support from a social worker. The group meets once a month on the 2nd Saturday at 1pm in Tigard. Please contact Jess if interested! 503.594.0901. Email: jess@parkinsonsresources.org Strive to Thrive Instructors Strive to Thrive is a seven-week class offered in conjunction with the Parkinson Center at OHSU. Based upon the Stanford Chronic Disease Self-Management program, volunteers undergo training so that they become certified as class instructors. Teaching is conducted in pairs, ideally a PwP with a carepartner. Please contact Melissa for more information. 800.426.6806. Picnic Planners for Southern Oregon We want to host a fun social activity this summer for our community in Southern Oregon, and need local volunteers to help make this a reality! Please contact Holly at 800.426.6806 if you are willing to help with organization, outreach and logistics.
All ages are welcome when it comes to Volunteering!
EXERCISE GRANT LAUNCH There is no surer indication of the growing interest in exercise for Parkinson’s than how quickly our recent training with Jackie Russell, of Delay the Disease filled up! More than 30 fitness professionals from around the region joined in for the Parkinson’s Resources of Oregon sponsored workshop seeking tips to help their clients get more from their workouts! We are also aware that some communities have more options than others for group and individual training specific to PD. To help address this imbalance and encourage skilled and trained instructors to consider offering programs tailored for PwP, PRO is launching a new grant program to help qualified instructors start new programs! The first round of applications will open in May for consideration in June. We will open a second round of funding in November for December consideration. As applications are considered, we will be examining the background of the applicant, training received specific to Parkinson’s disease, needs assessments, availability of other nearby options, and how the participant fee structure will be addressed. Questions? Email Melissa@ parkinsonsresources.org
MAY/JUNE 2017
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TAKING CARE: ACCEPTING ASSISTANCE Contributed by Jane Manchee
ONCE WE DECIDED TO ASK FOR THE WHEELCHAIR, WE BECAME CONVERTS FOR FUTURE FLIGHTS.
was how he felt after the Women’s March, grateful for the kindness shown to him while trying to navigate through the crowds. We haven’t taken the walker out since for a similar long trek but I suspect it might become more commonplace for us when we go on extended shopping trips or become part of our packing plan on our road trips. Following on this theme of mobility I just finished teaching a Strive to Thrive class and one of the things that came up was a concern around travel and Parkinson’s. Could they do it? How difficult would it be? How stressful?
The last column I wrote about Joe getting his walker and wondered about the impact it would have on our lives. I’ve teased him, calling it his new clothes holder, as it has been relatively idle in the house and will certainly take a while to wear out its’ wheels. Although, when friends come by he likes to show off the laser light attachment and our 6 year-old grandson enjoyed riding it when he came to visit last month. It has also been useful as an impromptu desk, holding Joe’s computer or tablet while he sits in a chair opposite it. In January, at my stepson’s insistence, Joe took the walker with him on the Women’s March. He cut quite the figure in his long white duster, his baseball cap and his walker. He marveled at how kind people were, not once, but several times, parting the masses with “Walker coming through” “Head’s up, Walker coming through!“ He loved it really. And while it took us more than a half an hour to cross the
MAY/JUNE 2017
street through the throngs of people I was grateful we had brought it so that he could rest along the way. In the past Joe had looked at people offering to help him as a negative experience – one where he perceived he looked enfeebled and unable to help himself, a sharp reminder of his loss of independence. He would grouse about it afterward especially when he had grudgingly accepted the aid. But the one time when he relaxed about someone’s offer, he recognized a deeper understanding of the benefits of acceptance. Buddhists aspiring to heightened states of consciousness include Mindfulness, Compassion and Appreciation. Joe recognized that people helping people was a way to express mindfulness, infuse compassion in the world, and his ability to appreciate their offer helped re-enforce their actions. Allowing them to open the door for him, give up a seat, or perform some small act of kindness was like the ripple effect going out into the world. That
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I was reminded that travel is possible and can be relatively easy, barring any uncomfortably long flight delays. Joe and I travel together a few times a year, usually back east to see family in Georgia or Canada, and he still occasionally travels on his own as long as the flights are direct, aren’t too long in duration, and we have made arrangements for someone to meet him at the destination. With regards to his meds, we always keep them with us in the carryon luggage and he continues to take them on his usual schedule even if we are traveling into a different time zone. It took us a few years to recognize the benefits of utilizing the wheelchair assistance available at airports. Initially Joe was embarrassed and wanted to remain independent, which I respected, but I could tell long terminal walks began to wear on him even with a walking stick or cane. Once we decided to ask for the wheelchair we became converts for future flights. On international flights it is a huge bonus, significantly cutting down the time we wait to go through security or customs lines. It’s like having your own tour guide through an airport. It’s been great for me because it will reduce my load of corralling our carryon luggage and Joe becomes our rolling Sherpa. Just know in the long run it is worth it to arrive at your plane or your gate feeling energized instead of exhausted, relaxed instead of frazzled. Whenever we fly we ask for the wheelchair now and I recommend considering it if you have flight plans in your future. PAGE 6
Area Group Meetings
Vancouver, WA (The Quarry) 2nd Wednesday, 10:00 am Heather, 360.944.6000
Albany 1st Tuesday, 2:00 pm Lynn, 541.936.6154
McMinnville 1st Thursday at 1:00 pm Charles, 503.359.5820
Ashland 3rd Wednesday, 3:00 pm Bill, 541.201.0954
Medford 3rd Saturday, 11:00 am Larry & Rae Jean, 541.772.0599 Joe & Kathy, 541.778.2919
Vancouver, WA (Touchmark) 1st Wednesday, 1:00 pm Linda, 360.882.9110 Jan, 360.433.6400
Family, friends & care partners are welcome at all of our groups.
Astoria 2nd Monday, 1:00 pm Darlene, 503.440.1970 Bend 3rd Wednesday, 2:00 pm Julie, 541.633.7436 Bethany / Hillsboro 2nd Wednesday, 1:00 pm Cathy, 503-690-8317 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 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 JoAnne, 541.633.3330 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, 12:00 pm Carol, 541.720.4256 Charles, 541.720.4130 Klamath Falls 3rd Tuesday, 1:00 pm Ron, 541.591.0686 Lake Oswego 1st Thursday, 9:00 am Charlene, 503.421.5058 LaGrande 3rd Mondays, 4:30pm Wendy, 509-946-4217 Longview, WA Area 3rd Wednesday, 1:45 pm PRO, 800.426.6806 MAY/JUNE 2017
Milwaukie 3rd Monday, 10:00 am Doug, 503.652.6519 Molalla 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 Shirley, 541.336.3945 Oregon City 1st Tuesday, 10:00 am Greg, 541.912.0972 Redmond Begins again July 6th! (1st Thursday) 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 Janet, 503.769.5727
Wallowa County 2nd Sunday Every other month, 2:00 pm Mike, 541.426.8604 Wilsonville 2nd Thursday, 11:00 am Cindy, 503.694.0303
Young Onset Groups Eugene 3rd Wednesday, 6:30 pm Call PRO 541.345.2988
Portland Groups
Gresham 4th Mondays, 7-9pm Donna 503-805-2478
East Portland 2nd Thursday , 10:00 am Kevin, 503.278.0516
PDX Area Happy Hour Kathieshill@gmail.com
East Portland, Russellville 3rd Wednesday, 12:00 pm Barbara, 503.254.5900
Alternative & Supplemental Groups
Inner NE Portland 2nd Saturday, 10:00 am Marge, 503.252.6480
Eugene 3rd Tuesdays, 1:30pm Carolyn 541-556-1444 Cork 541-995-8060
Laurelhurst “PD Avengers” 1st Friday, 10:00 am YuWen, 612.356.8164 SW Portland/Terwilligar **NEW** 1st & 3rd Mondays 3pm Linn 503.808.7431
Care-Partner Groups Bend 2nd Wednesday, 1:30 – 3:00 pm Phyllis, 541.317.1188
Portland – Evenings 2nd Tuesday, 7:00 pm National College of Natural Medicine (west door) Carol, 503.233.4075
“PD Plus” Diseases MSA/PSP Support Group Portland 3rd Saturday, 10:00 am Marquis Assisted Living Pat, 503.310.9085
St. Helens / Columbia Co. 1st Wednesday, 3:00PM Mary Jo, (503) 543-7090
Eugene/Springfield 4th Tuesday, 1:30 pm PRO, 541.345.2988
The Dalles 1st Wednesday, 2:00 pm Chad, 541.340.0142
Portland SE 1st Thursday, 4:00 pm Janet, 503.516.5917
Tillamook 2nd Thursday, 2:00 pm Michael & Joanne, 503.355.2573
Tigard Lewy Body Dementia 2nd Saturday, 1:00 pm Kathy, 503.244.4714
Tualatin 3rd Saturday, 9:30 am Trudy, 503.692.7988
Lake Oswego 1st Saturday, 9:15 am Tom, 503.303.4871 Carol, 301.237.0476
Tigard - Male Caregivers 1st Friday, 10:30 am Chuck, 408.373.9875
Golf Support Group
Vancouver/Camas, WA **NEW** 4th Friday, 10:00 am Cathy, 503.863.4340
Tigard - Female Caregivers 1st & 3rd Wednesday, 3:00 pm Karen, 503.754.6088 Nancy, 503.642.3213
Vancouver, WA (Salmon Creek) 3rd Friday at 1:00 pm Cal, 360.892.1985
Newly Diagnosed? Diagnosed with PD in the last year or two.
Various times & courses in the greater Portland area as arranged by the group Paul, 503.313.5013
Vancouver 2nd Tuesday, 11:30 am Jan, 360.433.6400
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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 Professional Caregiver
Return Service requested
Training pg 1 Save the Date
pg 2
Planned Giving
pg 3
Public Policy
pg 4
Non-Profit Org. U.S. Postage PAID Permit No. 1673 Portland, OR
Volunteer Opportunities pg 5 Welcome Jess
pg 5
Accepting Assistance
pg 6
Group Meetings
pg 7
Moving Update
pg 8
Contact Us info@parkinsonsresources.org toll-free: (800) 426-6806
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MOVING UPDATE These past months have witnessed a series of stops and starts in our progress on locating and securing a new base of operations for PRO in the metro Portland area. While a little frustrating, we remain committed to finding just the right opportunity to support our staff and more critically, provide a launch pad for program growth and expansion. Stalls and delays can also have an upside, creating time to reflect upon priority
features and collaborate with potential partners. As you might imagine, there are many elements that must be taken into consideration. Parking, location, proximity to transit, etc. In the meantime, we are still here working away! This process has also renewed the appreciation of PRO (and all who benefit from our services) to both Legacy HealthSystem and to Providence Health as these two organizations have provided pro-
bono housing for our staff and services since the early 1980’s! Central Oregon? Yes! Plans continue to move forward to locate a part-time employee in Central Oregon this summer. We are working closely with the Central Oregon Parkinson’s Council and their members to finalize plans in time to announce the newest PRO staff member this Summer.
PRO LENDING LIBRARY New in the PRO Lending Library (stop by or call to access), is A Parkinson’s Primer. John Vine has written the book that he and his wife, Joanne, wish they could have consulted when John was first diagnosed with Parkinson’s disease. A Parkinson’s Primer is a nontechnical, personal guide written from a patient’s perspective. Based on his experiences over the past 12 years, John writes knowledgeably about all aspects of the disease. John also interviewed other Parkinson’s patients and their partners, whose stories and advice he includes throughout the book. This is a nice addition to a collection of personal narratives – and one that stands out for its completeness and universally applicable insight into living with Parkinson’s disease. Copies of this title are also available for purchase from PRO for $15. MAY/JUNE 2017
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