PRO Newsletter - July/August 2017

THE PARKINSON’S PERSPECTIVE Newsletter Volume 37, Issue 4

JULY/AUGUST 2017

Serving OR and S. WA

STEPPING OUT ON PARKINSON’S

By Lauren Tietsort

these programs through the generosity of you. You invest in PRO’s services through monthly donations, annual gifts, stock transfers, and special events – events like Sole Support.

4. Portland walk is on the move! We are looking forward to a fantastic new venue at the World Trade Center downtown, with a block party, live band, and walk route along the waterfront.

support for PRO’s customized services … and the best part is, EVERYONE can be a part of the success!! This year we have some FUNraising additions to this series we are excited to share with you.

Central Oregon Parkinson’s Council, we will have a fourth Sole Support walk including Eugene, Vancouver, and Portland.

SEE PAGE 8 FOR MORE Sole Support is an exceptional opportunity 5. Bend is joining the series!! With the GALA INFORMATION for our community to raise awareness and support of our dedicated volunteers at the

Two and a half years ago when I made my own move to PRO I hadn’t even attended a walk like Sole Support, let alone managed one. Like all things, I’ve come to learn about the magic that is PRO, we are better together. Volunteers who made the walk series such a success for the past 10 years, generously shared their time and experience partnering with me to continue that success.

YOU, our community, continue to inspire me. You inspire celebration. You inspire success. You inspire greater fundraising efforts, so PRO can do more. Our exciting program expansions will allow us to better support the communities throughout our region, including opening an office in Bend to serve Central Oregon, bringing long term care training to Southern Oregon, advanced care giving programs in Vancouver, and robust education through webinars for EVERYONE. We are only able to provide

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1. Personalized support is available through registration, personalizing your online walker page, help sending fundraising postcards and emails, team recruitment and support.

2. Support for our walkers will be expanded by the expertise of Tracy Leeper, who you may remember joined PRO’s development team in January.

3. New incentive packages will be offered for those reaching fundraising goals of $250 and higher. Not to worry … our annual t-shirts will still be available for those who fundraise at least $100!

MORE INFO! (800) 426-6806 - WWW.PARKINSONSRESOURCES.ORG

As you might be able to tell, we are really excited about this year’s Sole Support!

I hope you’ll join us – register, donate, participate. Each step you take on this Parkinson’s journey is personal. Just like that journey, your participation in Sole Support is personal and we hope to support it.

EVENT DATES: Eugene, September 17 Vancouver, September 24 Portland, October 15 Bend, stay tuned for announcement www.solesupport.org REGISTER TODAY and Step Out Parkinson’s! We are better together.

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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

Get Active! Coming off such a wet, cold winter we know you want to be getting active as much as we do! Luckily there are lots of options in the community.

PRO Sponsored Exercise Classes in Vancouver, McMinnville, Tualatin, Ashland, Eugene, Medford and Bend. Various start times and dates. Please refer to pro.eventbrite.com or call our office.

Community based programs are also ongoing... Think Dance for PD, Tai Chi, Rock Steady Boxing, Cycling for PD and more. We would love to help connect you to a program near you. Most programs do charge a fee, but many offer sliding scales where resources are a barrier.

Get Outside! Sukhee So Chinn, PT leads several hikes in the summer that are meant to help you get outside, get active, and even meet new friends. Sign up at www.pro.eventbrite. com. In Lane County? Check in with Libby (541.345.2988) for the hike schedule there.

Want to start a PD friendly walking group in your community? Please just let us know!

July 21st Lunchtime Lecture in Astoria, OR. Dr. Richard Rosenbaum joins us for a presentation the Columbia Memorial Hospital in Astoria. He will be talking about “Research and PD” with a closer look at the promise of stem cell therapies.

September 8th – LTC training in Beaverton. Stay tuned for registration and details on this full day training for professionals working in Long Term Care communities. All 5 modules will be presented and registered participants will receive certificates of attendance.

August 1st Lunchtime Lecture in Vancouver, WA. Kaplana Merchant, PhD will address: “What’s in PD Pipeline?

Why have Drugs Failed in the Past?” This is rescheduled from her postponed June talk.

October – Dr. Jason Aldred is coming back to visit in Bend! Dr. Aldred will talk about his experiences with patients using the new Duopa therapy. Stay tuned for details.

August 16th Webinar (all you need is a reliable internet connection to participate!). Noon – 1 pm. Ani Sinclair from End of Life Choices Oregon will share information about end of life decisions including information on the Death with Dignity Act.

MOVE UPDATE For those of you following along with interest, early June was significant in the progress made toward achieving two of our goals. In Central Oregon, Libby and Holly have been working closely with reginal volunteers and were able to move ahead with recruitment for our newest staff member who will be based out of Bend working to support and coordinate the needs of that community. Look for an announcement in coming issues of the PRO Perspective introducing you to our staff addition.

We also reached a key milestone with our space needs for the main office in the Metro area, signing a lease! Our new offices will have a fitness space, meeting room, lounge area, as well as a little elbow room for our hard working staff. We can’t wait to welcome you to the new office when it is ready. Summer months will be spent on the build out and customization of the space with an anticipated move date in early September. Plans are already underway for scheduling fitness classes, education programs and web broadcasts.

In November we will be celebrating Family Caregiver Month with programs in Albany, Eugene and Newberg.

(PRO Hikers at Jackson Bottom Wetlands)

SAVE THE DATE - SOLE SUPPORT FOR PARKINSON’S THIS AUTUMN! September 17th Eugene September 24th Vancouver October 15th Portland Bend - TBA

Interested in helping to support a satellite walk in your community?

Contact Tracy (tracy@parkinsonsresources.org) for a toolkit and all the info you need for success!

www.solesupport.org JULY/AUGUST 2017

MORE INFO! (800) 426-6806 - WWW.PARKINSONSRESOURCES.ORG

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CHILDREN’S BOOKS ABOUT PD

by Jess Long HOW DO I EXPLAIN A NEURODEGENERATIVE DISEASE TO A CHILD? CHILDREN’S BOOKS ARE A GREAT WAY TO SHARE THE EXPERIENCE OF STORYTELLING WHILE OPENING UP A CONVERSATION IN A COMFORTABLE WAY. Telling little ones in your life about Parkinson’s may create pause. How do I explain a neurodegenerative disease to a child? Children’s books are a great way to share the experience of storytelling while opening up a conversation in a comfortable way. Here are two books written for kiddos I reviewed this month that help create a space for dialogue about PD. Both of these titles can be borrowed from PRO Lending Library.

“Carson and His Shaky Paws Grampa” Written by Kirk Hall Illustrated by Alison Paolini Carson’s Grampa describes his tremor as “shaky paws” when his curious grandson asks about his busy hands. The book is narrated from the perspective of a sevenyear-old boy, Carson, who’s Grampa has Parkinson’s disease. Kirk Hall, author of the book, has turned his personal experience

with PD and his grandson into a teaching tool for other young ones who may be affected by PD. The story outlines Carson’s childhood adventures with his Grampa while weaving in the changes he notices in his Grampa due to Parkinson’s. These changes include physical symptoms, taking medication and a “special procedure” (deep brain stimulation) to help with his Grampa’s “shaky paws.” Additionally, there’s a list of PD resources and for each book purchased, a portion of the proceeds go toward PD and Essential Tremor research and awareness.

“Grandma’s Brain” Written by Ann Andrews Illustrations by Sally Hollis-McLeod Jack and Adam’s Grandma is reading a story at bedtime when her hand starts shaking.

Jack, the older brother, opens up the conversation by responding to his younger brother’s concern for his Grandma by telling

him she has Parkinson’s. They quickly jump into a playful conversation about the brain and how Parkinson’s affects the part that “helps us move.” The story does an excellent job of explaining the inner workings of the brain for young people! The boys use humor and imagination in relating to their Grandma as she helps them understand the various signs and symptoms that come from living with PD. The book also emphasizes the importance of exercise and how it helps Grandma.

PRO TIPS WE ARE LAUNCHING THIS NEW INFORMATION SECTION OF THE NEWSLETTER TO FEATURE TIPS AND PRODUCTS THAT MEMBERS OF OUR COMMUNITY HAVE REPORTED AS HELPFUL. One of our supporters sent us a message lately with information about a couple of useful assistive devices that she and her husband have added to their toolkit for living with Parkinson’s disease. It got us thinking … surely if it was helpful for one PwP there might be others who could also benefit. So, we are launching this new information section of the newsletter to feature tips and products that members of our community have reported as helpful.

We would love to hear from you and invite you to share your tips, tricks and gadgets.

You can post on our FaceBook site (www.facebook.com/

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parkinsonsresources) or send in an email to info@parkinsonsresources.org. Can’t wait to learn how resourceful you all are!

Look for products like this at your local medical device store or online.

The Handybar (pictured here) is helpful for those who need a steady hold when getting in and out of the car. It is small enough to be carried in a purse or stored in the glovebox. It slides easily into the door jamb creating a steady hold for balance and even to pull upon. Using the Handybar (or one of several similar products) will save wear and tear on your vehicle and ease that difficult transition point.

MORE INFO! (800) 426-6806 - WWW.PARKINSONSRESOURCES.ORG

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MEDICARE OR MEDICAID - NOT INTERCHANGEABLE Holly Chaimov, Executive Director MOST PEOPLE ARE SURPRISED TO LEARN MEDICARE DOES NOT PAY FOR LONG TERM CARE.

Every profession, hobby, and even region has its own lingo. You know, words and acronyms that get tossed about in everyday use as if the rest of us are able to readily grasp the nuances and meanings.

Aging, and certainly living with a chronic illness, comes with its own language and jargon to learn and become familiar with.

Words that we think we might understand but which will trip us up when assumptions are made. Words like Palliative Care.

Durable Medical Equipment. Respite.

Activities of Daily Living. Capacity. Making sure you stop and ask for clarification when a new term is introduced is key to success in helping to manage your own care needs.

One area where we commonly see misunderstanding and erroneous assumptions is in the representation of Medicare vs Medicaid. This comes up frequently when PRO staff and others are trying to help a family with care planning and some health decisions and there is uncertainty about whether the individual has Medicare, Medicaid, neither, or both.

Too often Medicare and Medicaid are used as if they are interchangeable, and yet, they have different eligibility criteria and provide for very different services.

What is Medicare: Medicare is health insurance available to Americans age 65 and older, and sometimes to younger persons with disabilities.

Medicare is run by the federal government and is the same in all 50 states. If you have paid payroll taxes for the last 10 years, a portion of the Medicare coverage is free.

If you have not paid the taxes, you are still eligible but you will pay higher premiums.

Medicare options include Part A (Hospital Insurance) Part B (Medical Insurance) Part C (Medicare Advantage) and Part D (Medicare prescription drug coverage). Usually you

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don’t pay a premium for Part A coverage if you paid Medicare taxes while working.

It is important to learn the details of your Medicare coverage as well as options for Medicare Supplement Insurance to make sure you aren’t making an assumption about covered services. The most frequent assumption we have to correct surrounding Medicare is that it does not pay for most long term care situations.

What is Medicaid: Medicaid is available to low-income Americans regardless of age. Each state establishes its own guidelines so having a low income may not be enough to receive benefits – you may also need to meet other requirements, such as disability. Coverage may also vary from state to state. To find out if you qualify for your state’s Medicaid program, visit http://HealthCare.gov/do-iqualify-for-medicaid.

Both of these programs are important parts of our system of health insurance and care.

If you have been working and paying taxes, you have been paying toward your Medicare coverage. Medicaid is a type of public aid, paid by US tax dollars. Individuals who are dual eligible (for example, over 65 and low-income) may receive support covering Medicare Part D (prescription coverage) and other assistance.

Staying current with information as important and relevant as your health insurance options is a big job and yet an important responsibility. Know when enrollment dates are, what your options are to change or modify coverage, and especially stay aware of changes that may come as a result of legislation enacted by Congress. The most current and reliable source of information about these benefits and eligibility requirements can be found at www.medicare.gov.

MORE INFO! (800) 426-6806 - WWW.PARKINSONSRESOURCES.ORG

DO YOU HAVE QUESTIONS OR NEED HELP CONNECTING TO RESOURCES? 800.426.6806 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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SCENES FROM SPRING We just wrapped up our Spring Education initiatives. Thank you to our staff, sponsors and the volunteers who helped produce these events in the region. If you missed one of the Educate.Inspire.Empower. Conferences, we hope to see you next year! Melissa is already studying attendee evaluations looking for ways to improve and in particular, looking for your ideas for topics and speakers to invite in 2018.

The volunteers who step forward to lead our network of regional support groups were also provided extra training and support. Jess Long has stepped into the role of leading our support group development and created a warm and inviting opportunity for our leaders to come learn from and support each other! All together, most every group in our network was represented, with volunteers sometimes traveling great distances to take advantage of this professional development. Be sure to thank your group leader for their time and dedication to your group. Better yet? Ask how you can help!

(Care partners learned about easy to swallow food)

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(Sherri Woodbridge volunteering in Medford)

MORE INFO! (800) 426-6806 - WWW.PARKINSONSRESOURCES.ORG

(Lisa Mann, RN sharing info on building a care team in Eugene)

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TAKING CARE: PASSWORDS & PRIVACY Contributed by Jane Manchee

JOE HAS HAD SOME ISSUES LATELY AROUND KEEPING TRACK OF VARIOUS PASSWORDS, BUMPING UP AGAINST ERROR MESSAGES, AND EVEN BEING LOCKED OUT WHEN THE INCORRECT PASSWORD HAS BEEN INPUT TOO MANY TIMES.

We’re still trying to figure out the best way to keep track of passwords so that they’re easy to find and utilize. For now, all I can say is – Thank God for Smart Phones!

We use a combination of our contact list and our notes section to list our passwords and have found it the most helpful for Joe to know where he can find them, and for me to keep a thorough list of the most frequently visited sites.

Any sensitive ones that we have we codify so that any website that might ask to share our contact list won’t be able to access them. Better idea though is to not share your contact list at all.

Passwords are private – to be kept to oneself and used with care. Rarely shared and only if necessary. After all they are our keys to the intricate world of online living and provide some modicum of security each time we connect to a variety of cyber links.

Parkinson’s is private – kept to oneself, often only admitted in bits and pieces until the time comes when it’s so obvious it isn’t private anymore and it’s better to share than to hide.

If you are like many people there’s a good chance you use the same password for a number of different sites. Not the best idea, but it’s so enticing to scramble a sequence and stay within an easy-to-remember theme that often a lot of us do it.

Up until a couple of years ago Joe and I kept our passwords private, sharing with each other when needed but generally keeping them to ourselves.

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These days we share them on a regular basis. In fact, I have become the keeper of all the passwords.

For some couples I suppose this isn’t all that unusual, but Joe and I got to together later in life when our lives were already well defined with a degree of self-sufficiency.

For me in particular, it’s been a lesson in compromise, heightened by the unexpected introduction of Parkinson’s.

Joe has had some issues lately around keeping track of various passwords, bumping up against error messages, and even being locked out when the incorrect password has been input too many times.

At that point we have to call the help center and create a new password, trying to remember which one is for which website.

I admit I haven’t always been as patient as I might be but I am human and after multiple occasions in one week I get a bit frustrated, maybe even a bit short tempered, like I said, I’m human.

MORE INFO! (800) 426-6806 - WWW.PARKINSONSRESOURCES.ORG

We did try one of those websites that will hold all your passwords but didn’t find it all that effective or helpful. Others might like them but it just didn’t work for us.

The biggest obstacle, and one that routinely dismantles our precarious system, is impatience and immediacy. For example; when Joe wants to check his bank account he wants the information in the moment, and instead of double-checking he recalls the correct password he jumps on his computer and into the process and gets an error message.

If anyone has a brilliant idea on how to curb the enthusiasm or ways to keep track I’m all ears.

Note: Joe will offer his perspective next issue!

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Area Group Meetings

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

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

McMinnville 1st Thursday, 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

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 PRO, 800.426.6806 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

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 1st Thursday, 1:00 pm 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

Vancouver, WA (The Quarry) 2nd Wednesday, 10:00 am Heather, 360.944.6000 Vancouver, WA (Touchmark) 1st Wednesday, 1:00 pm Linda, 360.882.9110 Jan, 360.433.6400 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 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, 10:30am 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

Klamath Falls 3rd Tuesday, 1:00 pm Ron, 541.591.0686

Tillamook 2nd Thursday, 2:00 pm Michael & Joanne, 503.355.2573

Lake Oswego 1st Thursday, 9:00 am Charlene, 503.421.5058

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 4th Friday, 1:30 pm Cathy, 503.863.4340

Tigard - Female Caregivers 1st & 3rd Wednesday, 3:00 pm Karen, 503.754.6088 Nancy, 503.642.3213

Hermiston 1st Monday, 12:00 pm Carol, 541.720.4256 Charles, 541.720.4130

LaGrande 3rd Mondays, 4:30pm Wendy, 509-946-4217 Longview, WA Area 3rd Wednesday, 1:45 pm PRO, 800.426.6806 Madras Area **NEW** 1st Monday, 10:00 am Sheila or John, 541.475.7332 JULY/AUGUST 2017

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

MORE INFO! (800) 426-6806 - WWW.PARKINSONSRESOURCES.ORG

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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 Stepping Out on PD

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Save the Date

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Children’s Books

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Medicare or Medicaid

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Scenes from Spring

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Taking Care

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Group Meetings

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Stepping Stones

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

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