Issuu on Google+

THE PARKINSON’S PERSPECTIVE Newsletter Volume 36, Issue 4

JULY/AUGUST 2016

Serving OR and S. WA

SUMMER EXPLORATION

by Holly Chaimov

“SUMMERTIME AND THE LIVING IS EASY” -- ISN’T THAT WHAT THE SONG SAYS? For many of us, just the idea of summer brings up a yearning for days on end with a relaxed schedule and more time for friends, family, and travel. Sounds lovely, doesn’t it? Yet our daily reality is one of staring Parkinson’s disease in the face. It is hard to envision and embrace a free and easy summer when you feel chained to an unforgiving medication schedule, caregiving needs, daily uncertainty about how you will feel, and possibly other limitations as well. Everything new — even having fun — can be made easier when broken down into small and manageable bits, and you don’t need to make a long-term commitment to just give something a try. We’d like to propose that each of you commits to exploring something new this summer to help expand your world, make new friends, give of yourself, or take steps toward a goal that has been on your “to-do” list for longer than you care to admit. Let’s start with exercise. By now, everyone knows how important it is. Yet just the other day at a support group, a show of hands suggested that most of the group members had yet to find a way to incorporate regular movement into their routine. Excuses abounded. “It is too expensive to join a gym.” “I tried a class, but it wasn’t convenient for me.” “I’m afraid I won’t be able to keep up, and I’ll feel embarrassed.” All legitimate

concerns, but each is surmountable with a little creative thinking and an approach that allows you to ease your way in. For example, taking a walk in a neighborhood park doesn’t cost anything, and certainly no one will be evaluating your speed or form! Walking can be done on your own schedule in all kinds of places. Best yet? No special equipment is required. Want to make it social? Invite a friend or consider one of the PRO-supported hikes occurring this summer in Eugene, Hillsboro, Portland, and Tualatin. (www.pro.eventbrite.com for info) One couple I’ve been impressed with for their willingness to try new things is Cork and Carolyn Higgins. Together they recognized an unmet need in their community, and started the Alternative & Supplemental Group in Lane County. With the group, they have explored new ideas and have tapped into technology (Skype) to expand presentation options. Now that the group is up, running, and stable, they’ve started looking at widening their involvement and will soon be organizing a trial run of pickleball for group members. Pickleball. Just the name makes me smile! I’m not sure how many group members already know the game, but I applaud all who are going to sign up and give it a try.

Here are a few other ideas you might want to explore: If you aren’t part of a support group, find out if your local group is hosting a summer picnic. Such a fun and informal way to feel out a group to see if it will be a good fit for you. Table tennis. Yes, I mean ping-pong! Both Eugene and Bend now have active, informal ping-pong gatherings — no prior experience or talent required. Get Smart from home. See page 2 for two upcoming online learning opportunities. Call your local library or community center. Ask if they have any volunteer needs. Reading to children is a great opportunity as it gives kids access to stories, and gives you a chance to practice with your voice. We would love to hear how you explore summer. Drop me a note at holly@ parkinsonsresources.org.

(Cork & Carolyn Higgins) JULY/AUGUST 2016

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

PAGE 1


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

Summer Movement Classes JULY Many of the PRO Supported Movement and Exercise classes start up their summer sessions in early July. The programs are free for registration, although donations to support the expenses are encouraged. Details at www.pro.eventbrite.com. PRO sponsored classes may not be available in your area or suit the experience you are looking for. Fortunately, other options exist in most communities! Please call our helpline at 800.426.6806 if we can help you get moving! EUGENE July 8th Art Therapy Workshop for Care Partners Family caregivers so often find themselves jumping from task to task with very little time for much else. We invite you to enjoy getting “lost” in the art process and creatively express yourself while also engaging in a supportive community atmosphere. Special thanks to Art with Grace and Crescent Park.

NEWPORT. July 22nd. Noon. Lecture: Tackling Non-Motor Symptoms Dr. Richard Rosenbaum will discuss the “invisible” symptoms of PD, including depression, constipation, and sleep disorders. Learn how non-motor symptoms can manifest and treatment options to mitigate symptoms and improve quality of life. Join us for this presentation at the Samaritan Center for Health Education. PORTLAND. August 10. Portland Hike Enjoy a chance to visit with Sukhee So, Physical Therapist, as she leads the hike. She will be happy to answer your questions about balance, exercise, and staying active with PD. This is a great place to meet new people and socialize as you exercise! We will gather and start the hike in Forest Park. ONLINE: August 17th. Noon. Making the Most of your WPC Experience. The World Parkinson Congress (WPC) provides an unparalleled opportunity for learning about what’s new in the world of

Parkinson’s disease. Four days of making connections might also leave you breathless. You may have questions about the program or about the travelling. You may feel anxious about how you will cope. This webinar will help you prepare and plan for Congress. It will provide guidelines and tips for pacing yourself and will teach you how to take charge of your time in Portland. Join us and be prepared to make the WPC 2016 the best it can be … for you.

In the first quarter of this year PRO provided more than 5,000 hours of direct service through our workshops, lectures, classes and special activities. This is possible because people just like you support this work so we can continue making services available throughout the region. One easy way to “pay it forward” and contribute to these important programs is to register for Sole Support and help us recruit more walkers and participants. Even if you can’t make it to one of the locations, you can participate as a “virtual walker”! See page 3 for more info or call us to help get you started: 800.426.6808.

HILLSBORO. July 13th. Hillsboro Hike Enjoy a chance to visit with Sukhee So, Physical Therapist, as she leads the hike. She will be happy to answer your questions about balance, exercise, and staying active with PD. This is a great place to meet new people and socialize as you exercise! We will be exploring the Jackson Bottom Wetlands Preserve. VANCOUVER. July 18th Noon. Lecture: Pain in Parkinson’s While managing Parkinson’s disease is unpredictable and a challenge, adding the discomfort of chronic pain is another hurdle that you may have to overcome and can affect your quality of life. Join us for a lecture by Dr. Kieran Tuck at Legacy Salmon Creek.

JULY/AUGUST 2016

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

PAGE 2


JULY/AUGUST 2016

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

PAGE 3


(PRO Staff embraced the theme at the Gala in April, There’s No Place Like PRO.)

(Guest Speaker Dr. Marcus Cranston and his wife Lila.)

THANK YOU ABBVIE AND BANNINGS FOR YOUR INVESTMENT IN PRO AND OUR EVENTS!!!

(Everyone got in on the fun and excitement!) JULY/AUGUST 2016

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

PAGE 4


TAKING CARE (by Jane Manchee)

CHANGING SEATS, CHANGING LANES When my dad was told he would no longer be able to drive a car due to his Alzheimer’s, he railed fiercely at the news, afraid that his beloved farm, which he had worked so hard to maintain, would become his prison. Defiant at the news, he drove his car into the field only to get it stuck. His belligerence eventually subsided when my mom explained that he could lose the farm if he were ever in an accident. Even if it wasn’t his fault he could be sued and his doctor could lose his license to practice medicine. He didn’t care so much about his doctor, but he did care about the farm, and relinquished his keys to Mom, finally realizing he couldn’t continue behind the wheel. I was concerned that reaction of defiance and anger might be similar from Joe when the time came to broach the subject of whether he should still be driving with his Parkinson’s. He and I had talked about it last year in vague terms, but last summer when some relatives told me it might be time for him to stop driving, I listened, and then wiggled away from the topic, feeling very uncomfortable with the idea of limiting his independence.

While his inability to react as quickly as he once did and his loss of flexibility when trying to turn his head were motivating factors, Joe’s greatest concern was based on the moral dilemma he faced over the possibility of hurting someone. He valued his independence, but he valued the lives of others more. Joe knew he couldn’t live with the idea that he might get into an accident and severely hurt someone, be it a passenger in his car, someone in another car, or a pedestrian. It weighed heavily on him, and it wasn’t until we delved into his reasons why it was so easy for him to choose not to drive that I learned my unspoken concern was his too. Letting go can be an uneasy process and one that those with PD unfortunately experience on a near daily basis. This time, although it was a big piece for Joe to let go, it wasn’t as difficult as other things have been. But that is a topic for another column. Being the only driver in the family has its pluses and minuses. I get to decide where

we’re going and when, yet at the same time I’m also a slave to his schedule. It can be a burden to some extent because I can’t jump into my car and blithely take off for the day without first taking into consideration what classes or appointments he might need to go to, whether he needs a prescription or dry cleaning picked up, or if I need to run any other errands that we used to share, and meeting friends or clients definitely requires planning ahead. I’m self-employed, which luckily provides some flexibility, but if I am gone for the day, he is at home unless we arrange for a friend or family member to pick him up. We have registered with Ride Connection and will experiment with TriMet, however with both of those you need to plan ahead, and even then Ride Connection can’t always guarantee they’ll have a driver since they are volunteers. We haven’t tried Uber or Lyft yet, but we will. Overall I think we’re both glad he isn’t driving, in spite of the loss of spontaneous freedom for us. I have the peace of mind that he is safe, and he doesn’t have to listen to a piece of my mind, constantly asking how he feels and whether he’s taken his meds, and telling him to watch out, etc. Now it’s his turn to take over the backseatdriving duties.

Over the next few months, his driving time naturally reduced and, to my delighted surprise, one night in January while we were having dinner with a friend he turned to Tom and said matter-of-factly, “I’m not driving anymore.” Tom nodded. “You’re not,” I gulped. “Nope.” “Oh.” Well, that was a non-event, I thought to myself. However, it wasn’t entirely true. Since December I can count on four fingers the number of times he has driven — three times on stretches of open highway during a couple of our road trips and once through a residential area near our home. JULY/AUGUST 2016

(Joe on the Open Road)

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

PAGE 5


OHSU RESEARCH STUDY RECRUITING Have you been diagnosed with Parkinson’s disease (PD) in the past three years and have not started any medication for your symptoms? Purpose: While there are many treatments available for the symptoms of Parkinson’s disease, there is currently not any medication known to slow the progression of PD. The purpose of this study is to see if a new drug is safe, effective, and well tolerated in slowing the progression of PD in people who have been recently diagnosed. Right now the study drug is not approved for treatment of PD because we don’t know enough about it. Participation Requirements: In order to participate in the study you must have been diagnosed with PD in the past three years and were at least age 30 at the time of your diagnosis. With the exception of a stable dose of rasagiline/Azilect or selegiline/ Eldepryl/Zelapar, you must not be taking any medication for your PD symptoms and do not expect to begin taking medication

for your symptoms for at least three months after your first study visit. You also must not have a history of gout, heart attack, or stroke. There will be a total of approximately 15 study visits over 2 1/2 years. The study drug is a pill taken by mouth between one and six times daily. At most, two capsules are taken three times per day. Participants will be randomized (like the flip of a coin) to receive either the study drug or identical placebo for the entire length of the study. A placebo is a drug that looks like the study drug but has no real medicine in it. Neither the participant nor the study doctor can choose whether study drug or placebo is assigned. While in the study, participants will be able to begin taking medication for their PD symptoms. You can continue being in the study even after these medications are started. Eligible participants will receive study-related evaluations, laboratory tests, and the study drug at no cost. Participants will be compensated for their time and transportation. For more information please contact Eric Serres at (503) 494-0276 or serres@ohsu.edu. eIRB #15480

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

Lucien Burke, M.D 1st Vice President

Greg Moore Treasurer

Kristin Whitney Secretary

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

DRIVING TIPS ARE YOU CONCERNED ABOUT YOUR OWN DRIVING ABILITY OR THAT OF A LOVED ONE? YOU CAN FIND LOTS OF INFORMATION ON HOW TO DISCUSS THE ISSUE AT THE OREGON DMV “DRIVERS 50+” WEBSITE AT WWW.OREGONDMV.COM.

Stopping driving is often much more complicated than just hanging up the keys. Without ready access to transportation, PwP (and families) need to consider ways that they will still remain active in the community, get to social gatherings, shop, and run other errands. Granted, larger towns and cities will have more options for supported transportation but with a little creativity, diligence and pre-planning, most people can find ways to meet their basic needs. Ideas to Explore: Call your local Senior Center and ask what services they can refer you to If there is a bus system in your community, explore curbside service The Area Agencies on Aging (800)282-8096 can help connect you with local service providers Friends, neighbors and family are usually very happy to help – especially with some advance notice Taxi, Uber and Lyft may all be great in a pinch as well. Yes, there is a fee, but remember, driving your own vehicle isn’t free either! If you need help exploring resources or talking about this sometimes tricky issue, please call the PRO Helpline at 800.426.6806. JULY/AUGUST 2016

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

PAGE 6


Area Group Meetings

Family, friends & care partners are welcome at all of our groups. Albany  1st Tuesday, 2:00 pm Lynn, 541.936.6154

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

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

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

Astoria 2nd Monday, 1:00 pm Darlene, 503.440.1970 Baker City 3rd Tuesday, 2:30 pm Richard, 541.523.0013 Bend 3rd Wednesday, 2:00 pm Julie, 541.633.7436 Chehalis, WA 2nd Thursday, 1:00 pm Ken, 360.520.4889 Coos Bay/North Bend 2nd Monday, 2:00 pm Jeff, 541.200.4632 Cottage Grove 4th Thursday Libby, 541.345.2988

Medford 3rd Saturday, 11:00 am PRO, 800.426.6806 Milwaukie 3rd Monday, 10:00 am Doug, 503.652.6519 Newberg 3rd Thursday, 10:00 am John, 503.487.6390 Louise, 971.344.4384 Newport / Toledo 2nd Tuesday, 11:00 am Faye, 541.336.2481 Oregon City 1st Tuesday, 10:00 am Greg, 541.912.0972

Corvallis 2nd Wednesday, 12:15 pm Roger & Iris, 520.456.9799

Redmond 3rd Thursday, 1:00 pm Liz, 541.639.5989

Eugene/Springfield 2nd Tuesday, 10:30 am Judie, 541.485.2304 David, 541.686.8615

Roseburg 2nd Monday, 1:30 pm Sandy, 541.430.1286

Florence 4th Wednesday, 1:30 pm Carole, 805.587.3394 Forest Grove 1st Monday, 10:00 am Charles, 503.359.5820 Grants Pass 1st Tuesday, 1:00 pm Jeff, 541.479.2578 Gresham 3rd Tuesday, 2:00 pm Patty, 503.761.2792 Hermiston 1st Monday, 1:00 pm Carol, 541.720.4256 Charles, 541.567.9420 Klamath Falls 3rd Tuesday, 1:00 pm Ron, 541.591.0686 Lake Oswego 1st Thursday, 9:00 am Charlene, 503.421.5058 LaGrande 3rd Mondays, 4:30pm Wendy, 509-946-4217

JULY/AUGUST 2016

Salem / Mid-Willamette Valley 2nd Tuesday, 2:00 pm Dana, 503.588.1596 Jim, 503.364.8520

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

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

Wallowa County 2nd Sunday Every other month, 2:00 pm Mike, 541.426.8604

Young Onset Groups

Welches 4th Tuesday, 11:00 am Senior Center, 503-622-3331 Wilsonville 2nd Thursday, 11:00 am Cindy, 503.694.0303

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

Portland Groups East Portland 2nd Thursday , 10:00 am Kevin, 503.278.0516 East Portland, Russellville 3rd Wednesday, 12:00 pm Barbara, 503.254.5900 Inner NE Portland 2nd Saturday, 10:00 am Marge, 503.252.6480 Laurelhurst “PD Avengers” 1st Friday, 10:00 am YuWen, 612.356.8164 West Portland/Bethany 2nd Wednesday, 3:30 pm Cathy, 503-690-8317

Care-Partner Groups

St. Helens / Columbia Co. 1st Wednesday, 3:00PM Mary Jo, (503) 543-7090

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

The Dalles 1st Wednesday, 2:00 pm Chad, 541.340.0142

Eugene/Springfield 4th Tuesday, 1:30 pm PRO, 541.345.2988

Tillamook 2nd Thursday, 1:00 pm Michael & Joanne, 503.355.2573

Portland SE 1st Thursday, 4:00 pm Janet, 503.516.5917

Tualatin 3rd Saturday, 9:30 am Trudy, 503.692.7988

Tigard Lewy Body Dementia 2nd Saturday, 1:00 pm Kathy, 503.244.4714

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

Tigard - Male Caregivers 1st Friday, 10:30 am Chuck, 408.373.9875

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

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

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

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

“PD Plus” Diseases MSA/PSP Support Group Portland 3rd Saturday, 10:00 am Marquis Assisted Living PRO, 800.426.6806 PD+ Support Group Eugene 2nd Wednesday, 1:30 Lori & Gordon, 541.999.0949

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

Golf Support Group

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

PAGE 7


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 Summer Exploration

pg 1

Calendar of Events

pg 2

Sole Support

pg 3

Thank you!

pg 4

Taking Care

pg 5

Research Study

pg 6

Group Meetings

pg 7

Return Service requested

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

World Parkinson Congress pg 8 Contact Us info@parkinsonsresourcs.org toll-free: (800) 426-6820

SAVE THE DATE: SOLE SUPPORT PORTLAND - SEPT 17 EUGENE - OCT 1 VANCOUVER - OCT 8

If you no longer wish to receive this newsletter, please call our office at (800) 426-6806.

WORLD PARKINSON CONGRESS, COMING SOON The World Parkinson Congress (www.wpc2016.org) is coming to Oregon in just a few months – and we can’t wait! We feel very fortunate that Portland was chosen as the host city for this international conference, and have been working alongside our partners here in the Northwest to support this learning opportunity and to showcase our local commitment to providing world-class care and services for those with PD. From training hotel staff to alerting emergency responders to providing scholarships for healthcare professionals, PRO, our partners and volunteers are taking steps to make sure that Portland is Parkinson’s Ready!

Important Dates & Activities

(full schedule at www.wpc2016.org) First Tuesday of Every Month Portland Countdown Podcast is released 7/5/2016 - Early Registration Deadline

9/18/2016 Power Through Project MOB workout presented by Brian Grant Foundation

7/11/2016 to 7/15/2016 Vote for WPC People Choice Video Award

9/19/2016 National Parkinson Foundation Caregiver Summit

8/17/16 Webinar on making the most of your WPC experience

9/20/2016 to 9/23/2016 4th World Parkinson Congress

9/17/2016 Sole Support for Parkinson’s welcomes international delegates at Portland walk JULY/AUGUST 2016

9/21/2016 International Support Group Facilitator Network hosted by PRO with support from Providence Brain and Spine Institute and Medtronic

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

PAGE 8


PRO Newsletter - July/Aug 2016