I Thou Shalt Love Thy Self as Thy NeighborAdmittedly, a reversal from the original ten in Judeo-Christian tradition! Many caregivers become quite skilled over time at meeting the needs of others -- not just their primary care recipients, but those in the family and periphery who always seem to need help. This is an admonition to reserve some time and caring for your own physical and mental health in addition to what you devote to that deserving “other.”

II Thou Shalt Take Thine Own AdviceThis commandment is like unto the first. Seasoned caregivers not only have advice to give, but it’s often quite good advice, based on a wealth of experience. Would you not encourage a neighbor or good friend to make sure her mammogram is done on time or get a flu shot? Do you treat yourself as kindly?

III Thou Shalt Not Take Ridiculous RisksDavid Letterman on late night television once had a segment called, Stupid Human Tricks. This refers to things like climbing on ladders ten years after that practice was safe for you, moving furniture by yourself, mowing the lawn at High Noon in August, etc. You get the idea. People are lured into doing these things because their care partner is no longer able to do them, or they don’t know who to call, or don’t want to pay someone else to do the job. I often remind caregivers that they are just one broken hip away from a family disaster. If a house or yard task is out of your reach or above your pay grade, Just Say No!

IV Thou Shalt Not Take Thy Doctors Too SeriouslyNot to demean my colleagues in the medical profession.... but sometimes physicians, patients, and caregivers indulge in a small group hallucination regarding who is in charge of the patient’s regimen. Rather than consider the neurologist or other doctor as the “boss of you,” consider re-framing the relationship into one where the doctor is the head coach.

Even the best medical coach cannot be out on the field, at home with you every day observing subtle changes in the patient, responses to medications, etc. An educated caregiver is in the best position to collaborate with the patient to take the lead on the healthcare team.

What’s Inside

OHSU Parkinson Center of Oregon

• Caregiver Tips & Experiences (continued inside)

• Director’s Corner

• DBS at OHSU

• Managing Your Medication List

• Rehab: PD Thinking

• PCO Research Opportunities

• CoQ10 Study Stopped

• PAWS: Pups Partner for PD Success

• Calendar of Events: Annual Symposium 9/10

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Oregon Health & Science UniversityDepartment of NeurologyParkinson Center of Oregon, OP323181 Sam Jackson Park RoadPortland, OR 97239-3098

OHSU is an Equal Opportunity Employer

Medical DirectorJohn Nutt,MD

Associate DirectorJulie Carter, ANP.

Research DirectorPenny Hogarth, MD

Newsletter CoordinatorsLisa Mann, RN, BSN, MADiana Potts, BS, MAAmy Achterman, BA

Mailing List/Change of Address:503.494.7231townseka@ohsu.edu

Charitable Giving800 462-6608 or 503 494-7504www.ohsufoundation.orgLori Sweeneysweeneyl@ohsu.eduNeurosciences Development Office

OHSU Parkinson Center of OregonPhone: 503 494-7231Fax: 503 494.9059www.ohsu.edu/pco

Parkinson Center of Oregon

Ten Commandments for Family CaregiversSusan C. Imke, FNP, GNP-C

Parkinson's Resources of Oregon (PRO)800-426-6806

FRI, AUG 12. Argentine Tango for PD Workshop and Dance - 6:30pm to 8:00pmTry something new–-one night only commitment! $10/person. Registration required. Call PRO for details and to register.

SUN, SEP 11, 17, 25. Sole Support 7th Annual Parkinson’s Awareness Walk - 1K and 5K course – wheelchair, walker, stroller & pedestrian friendly.

Individuals, families, and teams welcome. Proceeds benefit Parkinson’s Resources of Oregon.

9/11/2011 – Eugene, Oregon9/17/2011 – Medford, Oregon9/25/2011 – Portland, Oregon

Details and Registration: www.SoleSupport.org.

Calendar of Upcoming Events

28th Annual SymposiumOptions & Opportunities

Continued on page 2

OHSU Parkinson Center of Oregon

• What’s Hot in PD Research & Care• Sight in PD: The Eyes Have It• Speaking Your Mind: Communication

Supports• Nighty-Night: Sleeping Challenges in PD• Ask the Experts• Special Caregiver Breakout: Caregiver Connections - Healthy Caregiving

Also, exhibitors will also share helpful information on managing PD for optimal function and quality of life. PD artists and hobbyists will also share their amazing work to inspire us all.

If you haven’t already received a registration brochure, visit our website at www.ohsu.edu/pco or call 503-494-7231. The registration deadline is September 2nd. We hope to see you there!

Published by the OHSU Parkinson Center of OregonA National Parkinson Foundation Center of Excellence

Hope FROM THE HillSummer-Fall| 2011

SaturdaySept. 10, 2011Red Lion Inn

Jantzen Beach9:00am - 3:30pm

NEWLY DIAGNOSED WITH PD?EVERY OTHER MONTH the OHSU PCO offers a three hour session for people recently diagnosed with PD and their spouse or family member. Participants may ask any and all questions of a PD specialist and long-time patient. $20/person; refreshments served. Call Amy at 503-494-9054 for more information.

Our Newly Diagnosed Education TeamJill White, Julie Carter, John White

Physical therapists (PT) from Oregon, Washington, and Idaho plus representatives from our TEAM-PD network attended a special symposium designed for PTs who treat people with neurological disorders that affect gait and balance, including those with Parkinson's disease (PD).

Ninety (90) therapists listened to presentations by OHSU Parkinson Center experts, including Associate Director, July Carter, ANP; Fay Horak, PhD, PT; and Laurie King, PhD, PT. The two-

day conference sought to improve evaluation skills and treatment options by teaching programs designed and researched by Dr. Horak.

Uniquely, this training also

offered a hands-on application opportunity, where therapists practiced what they learned with the help of people with PD. The PD volunteers were instrumental in training the PTs, and many therapists commented on this as a highlight of the conference.

Our TEAM-PD attendees took what they learned and returned to their home sites performing two inservices for other TEAM-PD members and PTs at their facilities. We hope to do more conferences in the future for other rehab therapists and continue to disseminate improved care models throughout the Northwest.

OHSU Parkinson CenterImproving Care through Outreach

TEAM-PD: Therapists Educated & Aligned in Managing PD

Follow us on...

OHSU Caregiving Conference Reflections

Kay Parr

As the wife of a relatively recently diagnosed, wonderful man with Parkinson's Disease I hated the term "caregiver" and was unwilling to identify with that label. I still find it rather revolting; especially since, as a long-time critical care nurse, it evokes visions of nursing homes and geri-chairs. I wish we could come up with a different term: "nurturer", "concerned, loving person"? None of those terms work. We are what we are--caregivers.

So, when a friend of mine sent me a flyer about a caregivers symposium at OHSU and asked me if I wanted to go with her I mentally called myself a "caring-spouse-of-a-person-with-Parkinson's Disease" and registered. Free massage? A glass of wine? Are you kidding me? I'm in! And, I am very glad that I went.

PD Hikes in Forest Park

Dr. Matt Brodsky of the OHSU Parkinson Center of Oregon is leading a series of hikes organized by PRO this summer. • Wed, AUG 3rd. 5 mile, fairly fast paced hike.• Tue, SEP 13th. 3 mile, moderate paced hike.Registration required; call PRO at 503-594-0901.

OHSU Parkinson Center of Oregon

OHSU PCO specialist, Dr. Matt Brodsky (center) with dog, Balu, and fellow hikers: Sally and Randy Calhoun, Patrick Sousa, Jeff Adlong, Linda and Mike O’Leary, (and PRO's Anna Sanger Reed taking the picture!)

If you are a PD artists or hobbyist, we would love to have you share your talents and exhibit your work. Please call Amy at 503-494-9054 if you are interested.

Park inson Update

SAT, SEP 10 - PORTLAND, OROPTIONS & OPPORTUNITIESJoin us for our 28th annual PD symposium. See detailed information above.

Pictured above: Joy St Peter and Mason, assistance dog-in-training, demonstrate how a dog might help with undressing during the Paws for a Cause benefit. PhotobySaraKaufman.

Training Physical Therapists in Better Assessment & Treatment of PD

Parkinson’s Disease RegistriesJay Nutt, MD

Many of you who attend our clinics are asked about participation in the National Parkinson Foundation (NPF) registry, part of the NPF Quality Improvement Initiative. This registry will produce evidence for best practices for care of Parkinson's disease (PD).

But there is another registry, the Washington State PD Registry that has a different role. This registry has people with PD who are willing to participate in clinical research studies conducted in Washington and Oregon. If you join this registry, and there is no reason that you cannot be in both the NPF and the Washington State PD registries, you will receive invitations to participate in research projects which may range from questionnaires to giving a blood sample to taking an experimental drug. The studies must be approved by the investigator’s institution and the governing board of the Washington State PD registry.

Enrolling in the Washington State PD registry does not commit you to participate in any study but does offer you the opportunity to advance research on PD. You can learn about the Washington State PD Registry from fliers in our clinics or at their website, www.registerparkinsons.org.

Join us for our 28th Annual Parkinson’s Disease Symposium

This year, we are pleased to present as our keynote speaker, Dr. Andrew Siderowf (pictured right) of the University of Pennsylvania Morris K. Udall Center of Excellence in Parkinson's Research. Dr. Siderowf will speak on the latest findings in Parkinson's disease (PD) research and care. But there is so much more....

VA PADRECC (Parkinson's Disease Research, Edu-cation, & Clinical Care)

FRI, AUG 12 - Hospice: Caring for Move-ment Disorder Patients at the End of Life

All presentations are held at the VA Portland Medical Center auditorium from 10 am to 11 am. For more information or to register, call the VA PADRECC office at 503-721-1091.

PTs learn from someone with PD what it means to live with the disease daily.

SEPTEMBER 10th

28th Annual SymposiumOPTIONS &

OPPORTUNITIES

More info on back page.

Continued on page 5

Susan Imke was the keynote speaker at the OHSU Parkinson Center 2011 Caregiver Conference. She is an advanced nurse practitioner based in Ft. Worth, TX and educational consultant to the Society for Progressive Supranuclear Palsy and the National Parkinson Foundation.

OHSU Parkinson Center of Oregon OHSU PCOOHSU_PCO

People with Parkinson’s disease (PD) are resourceful when it comes to managing their disease. That is why the OHSU Parkinson Center of Oregon always acknowledges that we are partners with people and families who live with PD. We share knowledge and cannot achieve improved care without one another. Recently, I was giving a support group talk at the Salem area support group, talking about medications and the importance of keeping an updated list with you, but George Spangler upped the ante. He shared his format with us (below).

He keeps the file on his computer in a MS Word document, so he can easily update it with changes. Brilliant! I’d like to challenge all the support groups (and everyone who has a medical condition) to make this a project for one of their meetings: creating your own portable PD card to be kept in your wallet. Email me at mannli@ohsu.edu if you would like a MS Word file similar to Mr. Spangler's to start your own personalized list.

Paws for a Cause brought new definition to “the dog days of summer.” Although it was not the hot sultry day implied by the saying, it was a day of dogs and fun and purpose. People with Parkinson's disease and those who love and support them (including their dogs) turned out for a walk and fun activities to raise money for OHSU Parkinson Center

of Oregon. We want to thank all of you who supported us. The money will be used to support research, our caregiver specialist, and educational efforts that we provide for our PD community. Without you this could not happen....

Our sincerest thanks, Jay Nutt, MD Julie Carter, ANP

Director Associate Director

Caregiver Symposiumcontinued from page 1

This was a very well organized affair with friendly people with packets and name-tags, goody bags and a selection of excel-lent handouts. The buffet was lovely: delicious antipasta, a sinfully good baked brie, crusty bread and really good wine (believe it). And nice little treats at the tables like good chocolate labeled "you are wonderful" and squishy hand exercisers shaped like brains! I was so interested in talking to the people I was sit-ting with that I forgot to have my massage, which I didn't remem-ber until we were leaving! So...I'm thinking: these people don't look old and tired and crabby, like "caregivers" are supposed to look! They are

smart, articulate, caring (like they are supposed to be) and involved. I was very impressed. And that was before the lecture!

The speaker was Susan Imke, a nurse practitioner specializing in Parkinson's Disease from Texas. She was very bright, funny and interesting. All the information was new to me and I absorbed it like a sponge. She was extremely good.

I will be at every symposium they have up there--you know they have to be good to be at the OHSU Parkinson Center of Oregon in the first place, so register early for the next one!

Med List at Your Finger Tips...Always!Lisa Mann, RN

Page 2

COMMANDMENTS FOR CAREGIVERS(continued from page 1)

V Thou Shalt Claim Both Rest and RespiteIt’s helpful to differentiate the two terms. Rest means literally taking time during the day to sit down and put your feet up, or maybe even grab a 30-minute power nap. It means getting a good night’s sleep, even if doing so requires occupying a different bedroom part of the time. Respite is better defined as those lovely little slices of time when a caregiver permits a break from the usual responsibilities.

I urge caregivers to think in terms of one hour all to themselves every day, one day out every week (remember Mother’s Day Out when your children were small?), and one long week-end away every month. For full-time primary caregivers, this is the tricky one. You have to train and trust a back-up caregiver, and you have to define "away." Being available by cell phone with no boundaries hardly qualifies! But with advanced planning and deliberate attention to expanding your circle of support, it is possible.

VI Thou Shalt Not Roll Thine EyesLong-term care-giving puts you at risk of becoming weary and cynical. The unthinkable question, “Can I continue to do this indefinitely?” creeps into one’s consciousness. There is a very thin line between constructive coaching of your loved one (“Honey, why don’t you try it this way?) and criticism-sliding-into-contempt: (“You’ve got to quit jumping up to get the phone; you’re driving me crazy!”). Contempt is never a good thing in a committed relationship.

VII Thou Shalt Observe Regular News BreaksI recently toured the CNN Studios in Atlanta, and despite the operation being quite impressive, I was struck with the reality that the 24-hour/7day news addiction in this country is truly bad for our mental health! People who are at home a great deal during the day with TV for companionship are particularly at risk.

Watching the network and local news before bedtime is hardly a prescription for feeling at peace with the world and ready for a restful night’s sleep! Remind yourself and your care recipient that the most important feature of the remote control is the “Off” button.

VIII Thou Shalt Know When Thy Warranty is UpBluntly, if you’re over 70, your warranty is up...and you could begin to have parts failures at any time! Why dwell on this sobering fact? First, it solidly reminds caregivers to take good care of themselves (like the quip, “If I’d known I was going to live this long, I’d have taken better care of myself!”) Second, but perhaps even more important, the warranty analogy reminds us to get busy doing the things we really want to accomplish or experience in our lifetime. I often urge caregivers to see the movie Bucket List, and begin thinking about their own wish lists.

IX Thou Shalt Cultivate Thy Sense of HumorHumorist Erma Bombeck was speaking to an audience of professional speakers when I was practicing in Phoenix a few years ago. She taught us that a sense of humor is not the art of being funny, it’s simply recognizing what’s truly funny all around us. Fine-tuning this skill can immensely improve quality of life for family caregivers. We can learn to take our care-giving mission seriously without having to take ourselves too seriously. Laughter really is the best medicine!

X Thou Shalt Hope Without CeasingWorking with the hospice movement the past few years has taught me incredible things about the power of hope. For instance, there is no such thing as “false” hope; there is just hope. Whether it is hope for world peace, hope for life after death, hope that lunch will be on time, or hope that a visitor won’t drop in during your favorite TV program, HOPE is all powerful and it stands alone.

Emily Dickinson’s famous poem about hope begins with this inspiring stanza: “Hope is the thing with feathers That perches in the soul And sings the tune without the words And never stops at all”

*This article summarizes a presentation for patients and family caregivers prepared for the Veteran’s Administration PADRECC and the National Parkinson Foundation.

The Effects of Coenzyme Q10 in Parkinson’s disease (“QE3”) research trial was the largest placebo-controlled blinded trial to date to evaluate whether or not CoQ10 slows the progression of Parkinson’s disease (PD). The premise of this research was that CoQ10 levels are decreased in PD which leads to dysfunction of mitochondria, the source of energy supply for cells in the body, and that this in turn may contribute to neuronal (brain) cell death. Six hundred participants with relatively mild and recently diag-nosed PD, untreated with other medications, were enrolled. The plan was to follow participants for 18 months, and the main question was whether CoQ10, at a dose of 1200 mg and 2400 mg daily, had any effect on slow-ing progression of PD compared to placebo. This phase III study built upon the phase II CoQ10 study that suggested the possibility that 1200mg CoQ10 daily might slow disease progression.

The data was analyzed after everyone was enrolled, but prior to the last participant completing their 18 month visit, as is often done in large trials like this when the results might be significant enough to make a conclu-sion at an earlier time point. Indeed, the results showed no effect of either CoQ10 dose versus placebo on the progression of PD signs and symp-toms. The decision was made, therefore, to stop the study prematurely and relay this information to the greater PD community as soon as pos-sible. Many people with PD outside of this study take CoQ10, at a vari-ety of strengths and from a variety of sources, and often at considerable expense.

The question still remains what effect a compound like CoQ10 might have at an earlier “premotor” stage of PD, when fewer irreversible changes in the nervous system have taken place, so therefore it would be premature to conclude that CoQ10 will have no role in the future of therapeutics for PD. Given these preliminary results of the QE3 study, however, my recommendation would be to discontinue taking it if the expectation is that it might slow disease progression. It has already been demonstrated in separate well-designed studies that CoQ10 does not provide benefit to symptoms such as slow movement, tremor or muscle rigidity.

Strike Out PD! AnOther SucceSSful YeAr

On Saturday, May 7, 2011, every lane was filled at Sunset Lanes in Beaverton for the 7th annual (and largest ever) Strike Out Parkinson’s Disease event. Sunset Lanes generously donated their facility and staff to support this benefit for the OHSU Parkinson Center of Oregon and Parkinson’s Resources of Oregon.

Over 180 people attended the bowling event, contributing to over $8,000 raised!

Event coordinators Roger and Karen Anderson had the pleasure of giving away the Grand Prize of $1000 to Marc Potts. Other prizes won during the raffle drawing were restaurant gift certificates, performing arts show tickets, and themed gift baskets.

We are grateful to the events' sponsors: Canfield Place The Quarry Serenity Palliative CareAnd a special thanks to the Andersons and Sunset Lanes for their generosity and hard work!

Disappointing Results from Coenzyme Q10 ResearchMatthew Brodsky, MD

Page 5

BRADYPHRENIA: Slowed Thinking Manageable with Right ToolsJenny Clemens MS CCC-SLPSpeech Language Pathologist

Bradyphrenia refers to slowed mental processing. Many individuals with Parkinson’s disease (PD) have complaints of difficulty responding quickly to information. Slowed mental processing can have a significant impact on an individual’s participation in the activities they enjoy such as conversing with friends and family. Slowness in information processing can also impact other cognitive processes (retrieving information and problem solving), which can limit one’s independence. Living with a cognitive impairment is difficult. Cognitive deficits at any severity level can have profound effects on an individual and their loved ones. Everyday tasks can quickly become daunting affecting quality of life.

Improvement in cognitive functions can occur well into older age. This is also true for individuals living with PD. The ability for the brain to change and compensate for lost cells is called neuroplasticity. Many research studies have indicated that exercise plays an important role in this compensation. Compensatory strategies and cognitive exercises learned in Speech Therapy can help an individual cope with bradyphrenia and help improve speed of processing.

Cognitive stimulation plays an important role in aiding this process. Maintaining an exercise program, participating in cognitively stimulating activities, such as being socially involved, are all excellent ways to maintain and improve physical and mental functioning.

Learning new techniques such as compensatory strategies can also be very beneficial. Individual’s living with PD often have complaints of difficulty keeping up in conversation. Speaker control strategies are excellent tools you can use to converse more effectively. 10 Speaker Control StrategieS

1. Ask the person to repeat their statement 2. Ask the person to slow down or speak up. 3. Asking someone to give one piece of information at a time can

be very helpful. 4. Ask questions to clarify information.5. Maintain eye contact with the speaker.6. Clear your mind – try to listen and not focus on what you

are going to say next in the conversation or other wandering thoughts.

7. Take advantage of opportunities to self-reflect. Ask yourself: “Did I understand that statement?”

8. Repeat instructions to yourself and write them down when possible for review.

9. Taking notes such as key words or phrases can help you recall the information.

10. Rephrase the information back to your speaker to make sure you understood them correctly.

Susan Imke, FNP, GNP-C

Dog Days of Summer Director aNd Associate Director’s

CORNER

The OHSU Parkinson Center of Oregon (PCO) has been a leader in DBS surgery, research, and programming for many years. Our DBS program is staffed by six physicians and a physician assistant, Shannon Donovan, PA-C (pictured left), and a neuro rehabilitation team. Our neurosurgeon,Dr.KimBurchiel,wasthefirstneurosurgeontodotheprocedure in the United States in 1991. For more information about our DBS Program, please feel free to contact Shannon at 503-494-7950.

What DBS is. Most patients with Parkinson’s disease (PD) are familiar with the many different medications used to treat their symptoms. For some patients, there comes a time when those medications, specifically levodopa (Sinemet ®, carbidopa/levodopa), don’t seem to work as

well as they once had. They may experience side effects such as dyskinesias (involuntary, uncoordinated movements) that limit the amount of levodopa the patient can take. The patient may also experience motor fluctuations where the patient suddenly goes from an “on” state to an “off” state numerous times throughout the day or when there is a question as to whether levodopa will work at all.

For these patients, a surgical procedure known as Deep Brain Stimulation (DBS), has been shown to be helpful in managing the motor symptoms of Parkinson’s disease such as tremor, muscle rigidity and slowness (bradykinesia) with a dramatic decrease in dyskinesia and motor fluctuations. Deep brain stimulation involves inserting very thin wire electrodes into specific targets in the brain: the Subthalamic nucleus (STN) or the Globus Pallidus pars interna (GPi). The electrodes are attached to a generator implanted under the skin in the chest, much like a pacemaker (see diagram on right). The DBS clinician programs the stimulator based on the symptoms and side effects seen in the individual patient. Since no two PD patients’ disease looks the same, there are a number of different parameters that can be programmed in an attempt to get the best symptom control for each individual patient.

What DBS does. Deep brain stimulation has been shown to be extremely effective in helping those symptoms that respond to levodopa. The goal of the programming is to achieve the best “on” the patient received from levodopa prior to the surgery for a greater proportion of the day without dyskinesias. Consequently, the amount of levodopa a patient is taking may be significantly reduced, thus possibly alleviating other side effects from high doses of levodopa such as extreme lightheadedness due to drops in blood pressure, excessive daytime sleepiness, or levodopa-induced hallucinations. A couple of programming sessions are often needed to find the right parameters which achieve these goals.

What DBS does not do. DBS will not help those symptoms that don’t get better on levodopa. For example, non-motor symptoms such as constipation, depression, anxiety, sleep disturbances, or difficulties with memory will not be helped by DBS. Cognition is an area that may worsen after surgery either temporarily or on a more long term basis. For this reason, an extremely thorough neuropsychological assessment is performed on all PD patients prior to surgery to assess those areas that are most at risk. This information has been shown to be extremely helpful to the patient, their family, and the DBS team in assessing whether DBS is the best treatment option for that patient. Another aspect of PD that may not improve with surgery is gait and balance. For this reason, patients have an appointment with physical therapy prior to surgery to look at their balance both off and on levodopa. Our physical therapists are experts in gait difficulties in Parkinson’s disease, and a vital part of the DBS treatment team post-surgically.

OHSU is unique. OHSU is unique in that the surgery can be performed in two different ways. The first is using microelectrode recording to identify the precise location. Neurons in different areas of the brain fire in different ways, and the neurosurgeon is able to locate the STN or GPi based on the characteristics of the firing patterns. The neurosurgeon also evaluates the patient’s symptoms in the operating room to confirm the correct location of the electrode, and for this reason, the patient is alert and awake for the procedure. This is how the procedure is performed at the majority of DBS centers throughout the world. The second approach is unique to OHSU. This procedure uses imaging in the operating room to identify the target. The neurosurgeon obtains a CT scan in the operating room and merges that image with an MRI that is obtained a few days before. Since the neurosurgeon is using imaging to locate the targets,

general anesthesia is used. In other words, the patient is “asleep” for the entire procedure.

Three keys to success. Three factors ensure that DBS is a successful procedure are:• proper placement by the neurosurgeon• optimal programming by the DBS neurology clinician• realistic patient expectationsThe primary goal of the DBS program here at OHSU is to deliver the best possible comprehensive care for patients receiving this treatment and to continually improve in all three areas.

Understanding Deep Brain Stimulation (DBS) Surgery for Parkinson’s Disease

Shannon Donovan, PA-C

tipS for family and friendS

1. Speak slowly and with a clear voice. 2. Make sure you are looking at your listener. 3. Ask if they need clarification about your statement or

question. 4. Break down long statements into shorter phrases.5. Be patient and give your listener time to respond.

"I will be at every symposium they have..."

Name: DOB: Sex: Primary Care: Dr. (Name and phone #) Neurologist: Dr. (Name and phone #) Emergency Contacts: Blood Type: Current Medications: (list supplements too) Problem Medication Dose Freq Parkinson’s carbidopa/levodopa (Sinemet) 25/100 # tabs taken at (state times) Parkinson’s rasagiline (Azilect) 1mg # tab taken at (state time)

Allergies: (note food allergies as well as drug allergies) Medical Conditions: Parkinson’s disease, … Contraindicated medications for Parkinson’s disease: prochlorperazine (Compazine), metoclopramide, (Reglan), promethazine (Phenergen), droperidol (Inapsine), meperidine (Demerol), all antipsychotics except seroquel and cloazaril

Surgeries: (date: type)

Bradyphrenia - slowed thought processing

A knowledgeable speech therapists can help instruct people with PD how to improve and manage bradyphrenia through:

• cognitive stimulation

• speaker control strategies

Dr. Burchiel performs DBS surgery with the latest technology in the field.

Caregiver rest & respite urged:

One hour per day,One day per week,One weekend per

month.

Page 3

PAWS FOR A CAUSEDogs & Dog Lovers

Unite to Advance the Work of the

OHSU Parkinson Center

Jack Vandyke, PD assistance dog extraordinaire.

Joseph Carter, active supporter of the OHSU PCO.

Melissa Ortiz and Bubba howl away to first place in the Best Trick contest. Courtney Baker and Abby (behind Melissa) lend moral support.

Support eagerly awaits during the “pie” eating contest.

Steve Vandyke and Jack welcome participants. Steve explains the freedom Jack gives him as his PD assistance dog.

Joy St Peter explains how Jack and other assistance dogs are trained (see article below).

Dr. Jeff Kraakevik and Shannon Donovan, DBS PA, try to coax Lucy OVER the limbo bar. No go.

Displays included dog-related vendors as well as education on Parkinson’s disease.

Brian Grant, former Trailblazer, joined the fun with family, friends, and his dog.

Hey, Mom & Dad, can I go do the “pie” eating contest?

Ready to walk with matching coiffures and bandanas.

Grand Marshals, Steve and Jack, welcome partic-ipants. Steve shares PD’s impact on his life.

Jack and I want to thank you for your support and help in this exciting and yet important fund raiser for the center. The research and train-ing that you are instrumental in supporting is making a difference today, will make a greater difference tomorrow and will ultimately give relief to thousands of people suffering from Parkinson’s disease in the future. The OHSU Parkinson Center of Oregon is a forerunner in an international effort to research, treat and hopefully eradicate Parkinson’s from our lives. Parkinson’s has been the worst and the best thing that has ever happened to me. The worst part is obvious. The day I was diagnosed was the day that changed my life forever. At that point, it felt that I was given a life sentence without parole, a debilitating disease with no cure. What does one do? One gets going! With the help of the OHSU Parkinson Center of Oregon, I became in-formed. I found out about treatment options, disease symptoms and reviewed new research

into alternative ways to combat the progression of this illness. I said before the worst and the best. Let me explain the latter. Having Parkinson’s has given me a different perspective on life. What I once took for granted I now look at as a gift. I have a wonderful family, a great life and of course a sidekick named Jack. Let me tell you about my best friend here. He is the secret to my success. He keeps me grounded not only to the ground but life as a whole. With Jack at my side I am once again able to go places restricted by my illness. He is my four-pawed drive that allows me to carry on life pretty much the way it was before Parkin-son’s. Jack, who was trained by Joys of Living As-sistance Dogs in Salem-Keizer, knows more commands than I can remember. Besides him being a counter balance, he also serves as another perspective that allows my brain to process the function of walking. When I freeze he is the locomotive that starts me going. When I stumble he sidesteps to keep me upright. When I do fall, which has not happened when attached to Jack, he is trained to help me in

several ways. He acts as a post so that I can lever myself up. He can be used as a bench to sit on or lever against as needs dictate. But, the most important factor is his training to seek help if either: 1) I request it, or 2) I fall and do not stir for two minutes. He has done this twice since we have been together. Both times I had fallen and injured myself. Jack was told to find a person and bring them back. Which he did with eagerness and practiced expertise. These skills are instrumental in my ability to lead a successful, productive life that just hap-pens to be impacted by Parkinson’s. My won-derful wife, Diane, and I have adopted a crucial line into our daily conversations. We call it the “Silver lining” With out Parkinson’s I would not have the “Silver lining” of Jack. Without Parkinson’s I would not have the “Silver lin-ing” of a different more positive out look on life, AND with out Parkinson’s I would not have the “Silver lining” of meeting and becoming part of the family here at the OHSU Parkinson Center of Oregon. So let us spend the day celebrating the OHSU Parkinson Center of Oregon’s Paws for a Cause with our four footed friends in a day of fun and excitement. ...and we did! Thanks, Steve & Jack

The Worst & Best of Parkinson’s DiseaseSteve Vandyke

Jack, Joseph & all their friends

say thank you too!

If you still want to donate, visit our website at www.ohsu.edu/pco and choose the “Giving” page. Thank you!!

Dogs and dog-lovers alike had a great time at the OHSU Parkinson Center’s Paws for a Cause benefit Saturday, July 16th.

While we started with some of Oregon’s summer liquid sunshine, it did not dampen the spirits of the approximately 275 attendees, who participated in the 4K (by droves) and 1K walks in front of the OHSU Center for Health and Healing building on Portland’s south waterfront.

Dog owner activities (have you ever seen limbo with dogs and their owners? (Hilarious!) and contests (Best Look Alike, Best Dressed, Best Trick, and Dog “Pie” Eating Contest) proved entertaining for all. But we also had an opportunity to make new friends and educate folks about Parkinson’s disease.

In the process, we reached our goal (with your help!!!) and raised over $50,000 to support ongoing and new program initiatives at the center. The money will help fund our Family Caregiver Specialist, our educational outreach to train healthcare providers to improve care for people with Parkinson’s disease everywhere, and our research program. Our top fund raisers earned the status of Top Dog and Royal Court with commensurate recognition, dog goodies, and applause. Top Dog Jim McMullen Royal Court Hunter O’Harrow Kay Parr Heather Geiger Dan Baker

We can’t thank enough all the planning committee, sponsors, fund raisers, volunteers, and dog-lovers. Not to mention, our wonderful Grand Marshals, Steve Vandyke and Jack, his Parkinson disease assistance dog (see article below). We are grateful to everyone for your support!! Hope you will join us again next year.

Joy St Peter has aptly named her business--Joys of Living Assistance Dogs, because she trains service dogs that bring love and increased freedom into the lives of disabled people. While it is a relatively new concept for Parkinson’s disease, Joy trained Jack, Steve Vandyke’s PD assistance dog.

Joy breeds and trains dogs specifically to become assistance dogs, starting with choosing (with a genetics adviser) appropriate parents and continuing until they are placed up to two years later. From a litter’s birth, Joy begins the socialization process (volunteers come to hold and play with puppies while still with mom—tough job!). At 8 weeks they go to volunteer “puppy raisers” who will work with the litter for the next 18-months training them to become service dogs under Joy’s tutelage.

I was lucky enough to attend one of Joy’s training classes for the younger dogs. This class featured the “I” litter (all dogs had names starting with “I”), all 6-month old labradoodles (bred for those who have dog allergies) who were learning to turn on light switches—yes, at 6-months old! In spite of the breeding and intensive training, Joy says

it still takes a special dog to complete the training and be matched with an owner. To have 30-50% of a litter become assistance dogs is a high pass rate, but I’m sure you can imagine those that don’t are still coveted companions.

Most of Joy’s charges are placed with people who have problems with physical mobility, allowing them greater freedom and independence. Steve’s dog, Jack, has learned over 40 different tasks to assist him. Arguably the most important one has been providing a counter balance to Steve’s PD related imbalance. While many people with PD tend to self-isolate, Steve credits Jack for his freedom: “Without Jack, I wouldn’t be able to go where I go. Jack allows me to go to the woods, go to the mall. He’s expanding my horizons.” Kayaking is one of the latest adventures they’ve undertaken.

Joy attended and demonstrated what a service dog can do at our recent fund raiser, Paws for a Cause. She, Steve, and Jack, have opened our horizons to seeing yet another way people with PD can gain greater independence from the disease with a unique partnership that has the added benefit of the gift of unconditional love.

If you are interested in knowing more about Joys of Assistance Living Dogs (supporting, volunteering, puppy raising), visit www.joydogs.org.

Joy St Peter (with student, Ivy) instructs a group of puppy raisers and their pups in how to train them to turn on a light switch.

Training Jack:Joys of Living

Assistance Dogs

Lisa Mann, RN

We also wish to thank our sponsors: Golden Retriever level: Nay & Friedenberg; Jack Russell level: Swanson, Thomas & Coon; McGee Financial; Poodle level: Medtronic and Teva Pharmaceuticals; Chihuahua level: Care Medical, Kettle Chip, SoundSource at OHSU, Finley Sunset Hills, In-Step Mobility; plus Montgomery Promotions, Joe M. Valentine, Graphic Artist.

Let’s get walking! (Who’s walking whom?)

Julie and Jim Carter are walked by their trusty corgi, Joseph.

Pictures by Sara Kaufman

The OHSU Parkinson Center of Oregon (PCO) is a national leader in Parkinson’s disease research and is recognized as a National Parkinson Foundation Center of Excellence. The OHSU PCO is involved in many studies that are fully recruited; other studies are in the planning stage. Those already fully recruited include studies on drugs to delay progression, new symptomatic drugs, family care research, balance, falls, and genetics. The following research studies are currently needing participants. Thank you for considering involvement; we can’t do it without you.

Do you have early Parkinson’s disease that you aren’t currently treating with any PD medications? – Or –Are you a healthy control interested in volunteering in PD Research? Purpose: The Parkinson’s Progression Markers Initiative (PPMI) is an observational research study to identify biomarkers of PD progression. A biomarker is a substance or characteristic in our bodies that is associated with the presence of disease, or that changes over time in a way that can be linked to the progression of disease. The purpose of this study is to identify one or more biomarkers of PD. The discovery of a biomarker of PD is critical to the development of new and better treatments for PD, particularly treatments that could slow or stop the progression of the disease, something no currently available treatment can do. Participation Requirements: This study will recruit both PD subjects and healthy volunteer subjects. In order to participate in this study as a PD subject you must have been diagnosed with PD within the last two years. You must have been 30 years or older at the time of your PD diagnosis. You also must not be taking any medications for your Parkinson’s disease. In order to participate as a healthy volunteer subject you must not have a first degree relative diagnosed with PD. You must be 30 years old at the time of the screening appointment and you must not have a current or active neurological disorder. The study will use a combination of imaging techniques, collection of blood, urine and spinal fluid and clinical tests. If enrolled subjects will undergo four study visits in their first year, with visits twice a year thereafter. Subjects will be enrolled in the study for 3-5 years depending on their date of enrollment. For more information please contact Emily Pighetti at 503-494-1382 or pighetti@ohsu.edu. eIRB#6459.

Have you been diagnosed with Parkinson’s disease within the last three years? Purpose: There is some recent evidence that higher levels of urate may be related to a slower decline in Parkinson’s disease. The purpose of this study is to see if inosine can safely be used to raise urate levels in people with early Parkinson’s disease. This information will help us decide if we should continue with a larger study of inosine’s ability to slow down the rate of progression or worsening disability in PD. Participation Requirements: In order to participate in the study you must have been diagnosed with PD within the last three years. You must have been age 30 or older at the time of your PD diagnosis. You may qualify if you’re taking no PD meds or just rasagiline to treat your Parkinson’s disease. In this study you will be randomly assigned to receive the study drug, inosine, or a placebo (inactive substance). Taking the study drug poses small but likely increased risks of gout and kidney stones (made of uric acid). This is because the study drug is known to raise blood levels of urate. Therefore, if you have a history of gout or kidney stones you will not be eligible to participate in the study. There will be 16 clinic visits over 27 months. Eligible participants will receive study-related evaluations, laboratory tests, and the investigational drug at no cost. For more information please contact Emily Pighetti at 503-494-1382 or pighetti@ohsu.edu. eIRB #5081

Have you been diagnosed with Parkinson’s disease for less than 5 years and currently taking rasagiline or selegiline as your only treatment for PD? Purpose: Recent studies show that the study drug pioglitazone, currently used to treat Type II diabetes, may protect nerve cells in various ways. The purpose of this study is to determine if the study drug is safe and well tolerated in patients with Parkinson’s disease and explore any effects on thinking abilities. Participation Requirements: Participation in this study will include at least six clinic visits and one telephone visit over 48 weeks. The study drug or a placebo will be taken for 44 weeks. A placebo is a pill that looks like the study drug but has no active medicine in it. To qualify for this study, you must have been diagnosed with Parkinson’s disease within the last five years and be currently taking either rasagiline or selegiline as your only treatment for PD for less than 8 months. If you have a diagnosis of Type I or II diabetes you will not be eligible to participate. Eligible participants will receive study-related evaluations, laboratory tests, and the investigational drug at no cost. Julie Carter is the investigator for this study. For more information, please contact April Wilson at 503-418-1769 or wilsonap@ohsu.edu.OHSU eIRB# 7084

Do you have troublesome dyskinesia (involuntary movements) from your Parkinson’s disease medication? Purpose: The purpose of this study is to evaluate different scales used to rate dyskinesia in order to see how well each scale works, and to identify the best scale that can detect changes in dyskinesia in subjects who are treated with Amantadine or placebo. Participation Requirements: Participation in this study will include 4 clinic visits and 2 telephone calls over 11 weeks. In order to qualify you must be diagnosed with PD, experience dyskinesia (involuntary movements) and have a caregiver that is willing to participate with you. Kathy Chung is the investigator for this study. For more information, please contact Anna Lovelace at 503-494-9531 or lovelaca@ohsu.edu. eIRB #5873

Are you interested in Exercise for your Parkinson’s disease? Purpose: Clinicians and scientists at OHSU are currently investigating the most beneficial way to deliver an exercise program aimed at preventing mobility and balance problems in people with Parkinson’s disease (PD). We are testing the same exercise program provided as either a home exercise program, individualized therapy or as a group program. We are also interested in how common co-morbidities of aging (such as; depression or orthopedic problems) along with PD affect outcomes of exercise. All three arms of the study will be conducted and overseen by physical therapists at OHSU. Participation Requirements: Participation in this study requires being randomized into one of three exercise groups and potentially going to OHSU to participate in the exercise program, 3 times a week for 4 weeks. You will also undergo tests of your balance and physical performance 2 times

(once before the exercise program begins and once after). Transportation will not be provided and you will be paid for participation. To qualify for this study you must have a diagnosis of PD. Dr. Laurie King is the investigator for this study. For more information, please contact Kelsey Priest; 503-575-8401 and priest@ohsu.edu. eIRB #4402.

Do you have Parkinson’s disease and difficulty with balance? Purpose: OHSU’s Balance Disorders Laboratory is seeking people with PD to measure balance using small (watch-sized) movement sensors on the limbs and trunk, while subjects are on/ off Levodopa medication. Participation Requirements: You are qualified for enrollment if you have a diagnosis of PD, are between 50-80 years old, currently taking some form of Levodopa, are free of other neurological disorders, have no significant orthopedic or muscular impairments and are able to stand independently for at least 20 minutes. There is no cost to participate in this study. This is a research study and not part of treatment or diagnosis of PD. You will not benefit by participating in this study but you may learn more about your disease and balance. This study entails a one-time-only visit to the Hatfield Research Building on OHSU’s main campus for approximately 4 hours. There will also be a falls tracking diary for 12 months after your visit- you will be contacted once a month via phone or email (*you will still qualify even if you don’t have falls*). In exchange for the session, participants will be paid $35.00. Dr. Fay Horak, Professor of Neurology is the principal investigator. Please contact Kelsey Priest, research assistant at 503-575-8401 or priest@ohsu.edu. eIRB #5029

Do you have freezing of gait or start hesitation?OHSU’s Balance Disorders Laboratory is seeking people with Parkinson’s disease and freezing of gait for a study investigating the relations between freezing of gait, mental function, and brain circuits. Qualifying participants will have a diagnosis of Parkinson’s disease and experience occasional or frequent episodes in which they feel “stuck” when trying to walk. Participants must be free of other neurological disorders, have no significant orthopedic or muscular impairments for standing, be able to stand independently for at least 20 minutes, and not suffer from claustrophobia. The study takes approximately 4 hours to complete. In exchange for each session, participants will be paid. If interested please call 503-418-2602 or email: balance@ohsu.edu. Fay Horak, Ph.D., PT, IRB# 5279

Healthy Volunteers Needed for Balance Study. OHSU’s Human Spatial Orientation Laboratory and Human Balance Disorders Laboratory are seeking healthy individuals to serve as age-matched controls for patients with neurological involvement for studies in balance function. Participants must be 18-80 years of age, in excellent general health, and have no history of dizziness or balance problems. In exchange for each 2 to 4-hour session, participants will be paid. If interested, please call 503-418-2602 or email: balance@ohsu.edu Fay Horak, PhD, PT, IRB#: 811, 1065, 5279

Page 4

There is an FDA-approved drug used to treat diabetes that is receiving a lot of attention in the Parkinson’s disease research community for its potential neuroprotective benefits in treating neurological disorders such as Parkinson’s disease (PD) and Alzheimer’s disease (AD). Pioglitazone, also known by its trade name of Actos, is currently approved to reduce insulin resistance in individuals with Type II diabetes. This drug may also have other beneficial qualities including anti-inflammatory properties, the ability to assist in repairing damage to cells, and reducing oxidative stress. These are all processes that lead to the death of dopamine producing cells in the brain. The loss of the neurochemical dopamine causes PD and leads to chronic tremors, rigid movement and other debilitating symptoms. Although this drug has not been tested in humans with PD, results from animal studies showed that the drug prevented the death of dopamine cells in mice. Although results from animal studies are promising, this cannot provide conclusive proof as to whether this drug can provide any beneficial effects for humans with PD. However, there is enough evidence to move forward with

a trial to measure the safety and effectiveness of pioglitazone in people with PD.

OHSU’s Parkinson Center of Oregon (PCO) has a long history of focusing their research on drugs and therapies that have shown promise as being neuroprotective. This is because drugs and therapies that have neuroprotective qualities may be able to prevent or slow down the progression of PD. The PCO is participating in a new investigational trial to find out more about how this drug might affect individuals who are in the early stages of Parkinson’s disease. This study is a collaboration between the National Institute of Neurological Disorders and Strokes (NINDS) and the Michael J. Fox Foundation, two strong leaders in the world of PD research and treatment development.

The purpose of this study is to determine if the study drug (pioglitazone) is safe and well tolerated in patients with PD and explore any effects on thinking abilities. Individuals who participate in this study will attend at least six clinic visits and one

telephone visit over 48 weeks. There are two dosages of the study drug (15mg, 45mg) being studied in this trial. Subjects will be randomized to either one of the two dosages of study drug or placebo and will remain on that dose for 44 weeks. Subjects have an equal chance of being randomized to any one of the three groups (15mg, 45mg, or placebo). A placebo is a pill that looks like the study drug but has no active medicine in it. To qualify for this study, you must have been diagnosed with PD within the last five years and currently taking either rasagiline or selegiline as your only treatment for PD for less than 8 months. If you have a diagnosis of Type I or II diabetes you will not be eligible to participate. Eligible participants will receive study-related evaluations, laboratory tests, and the investigational drug at no cost. Julie Carter, ANP, is the investigator for this study.

For more information, please contact April Wilson at 503-418-1769 or wilsonap@ohsu.edu . OHSU eIRB# 7084.

CAN A DIABETES DRUG HELP PATIENTS WITH PARKINSON’S DISEASE?

E A R LY S TA G E P D (NOT on PD medications)

EARLY- to MID-STAGE PD

EARLY, MID-, or LATE-STAGE PD

B A L A N C E / E X E R C I S E

RESEARCH FOCUSR

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PP

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People with Parkinson’s disease (PD) are resourceful when it comes to managing their disease. That is why the OHSU Parkinson Center of Oregon always acknowledges that we are partners with people and families who live with PD. We share knowledge and cannot achieve improved care without one another. Recently, I was giving a support group talk at the Salem area support group, talking about medications and the importance of keeping an updated list with you, but George Spangler upped the ante. He shared his format with us (below).

He keeps the file on his computer in a MS Word document, so he can easily update it with changes. Brilliant! I’d like to challenge all the support groups (and everyone who has a medical condition) to make this a project for one of their meetings: creating your own portable PD card to be kept in your wallet. Email me at mannli@ohsu.edu if you would like a MS Word file similar to Mr. Spangler's to start your own personalized list.

Paws for a Cause brought new definition to “the dog days of summer.” Although it was not the hot sultry day implied by the saying, it was a day of dogs and fun and purpose. People with Parkinson's disease and those who love and support them (including their dogs) turned out for a walk and fun activities to raise money for OHSU Parkinson Center

of Oregon. We want to thank all of you who supported us. The money will be used to support research, our caregiver specialist, and educational efforts that we provide for our PD community. Without you this could not happen....

Our sincerest thanks, Jay Nutt, MD Julie Carter, ANP

Director Associate Director

Caregiver Symposiumcontinued from page 1

This was a very well organized affair with friendly people with packets and name-tags, goody bags and a selection of excel-lent handouts. The buffet was lovely: delicious antipasta, a sinfully good baked brie, crusty bread and really good wine (believe it). And nice little treats at the tables like good chocolate labeled "you are wonderful" and squishy hand exercisers shaped like brains! I was so interested in talking to the people I was sit-ting with that I forgot to have my massage, which I didn't remem-ber until we were leaving! So...I'm thinking: these people don't look old and tired and crabby, like "caregivers" are supposed to look! They are

smart, articulate, caring (like they are supposed to be) and involved. I was very impressed. And that was before the lecture!

The speaker was Susan Imke, a nurse practitioner specializing in Parkinson's Disease from Texas. She was very bright, funny and interesting. All the information was new to me and I absorbed it like a sponge. She was extremely good.

I will be at every symposium they have up there--you know they have to be good to be at the OHSU Parkinson Center of Oregon in the first place, so register early for the next one!

Med List at Your Finger Tips...Always!Lisa Mann, RN

Page 2

COMMANDMENTS FOR CAREGIVERS(continued from page 1)

V Thou Shalt Claim Both Rest and RespiteIt’s helpful to differentiate the two terms. Rest means literally taking time during the day to sit down and put your feet up, or maybe even grab a 30-minute power nap. It means getting a good night’s sleep, even if doing so requires occupying a different bedroom part of the time. Respite is better defined as those lovely little slices of time when a caregiver permits a break from the usual responsibilities.

I urge caregivers to think in terms of one hour all to themselves every day, one day out every week (remember Mother’s Day Out when your children were small?), and one long week-end away every month. For full-time primary caregivers, this is the tricky one. You have to train and trust a back-up caregiver, and you have to define "away." Being available by cell phone with no boundaries hardly qualifies! But with advanced planning and deliberate attention to expanding your circle of support, it is possible.

VI Thou Shalt Not Roll Thine EyesLong-term care-giving puts you at risk of becoming weary and cynical. The unthinkable question, “Can I continue to do this indefinitely?” creeps into one’s consciousness. There is a very thin line between constructive coaching of your loved one (“Honey, why don’t you try it this way?) and criticism-sliding-into-contempt: (“You’ve got to quit jumping up to get the phone; you’re driving me crazy!”). Contempt is never a good thing in a committed relationship.

VII Thou Shalt Observe Regular News BreaksI recently toured the CNN Studios in Atlanta, and despite the operation being quite impressive, I was struck with the reality that the 24-hour/7day news addiction in this country is truly bad for our mental health! People who are at home a great deal during the day with TV for companionship are particularly at risk.

Watching the network and local news before bedtime is hardly a prescription for feeling at peace with the world and ready for a restful night’s sleep! Remind yourself and your care recipient that the most important feature of the remote control is the “Off” button.

VIII Thou Shalt Know When Thy Warranty is UpBluntly, if you’re over 70, your warranty is up...and you could begin to have parts failures at any time! Why dwell on this sobering fact? First, it solidly reminds caregivers to take good care of themselves (like the quip, “If I’d known I was going to live this long, I’d have taken better care of myself!”) Second, but perhaps even more important, the warranty analogy reminds us to get busy doing the things we really want to accomplish or experience in our lifetime. I often urge caregivers to see the movie Bucket List, and begin thinking about their own wish lists.

IX Thou Shalt Cultivate Thy Sense of HumorHumorist Erma Bombeck was speaking to an audience of professional speakers when I was practicing in Phoenix a few years ago. She taught us that a sense of humor is not the art of being funny, it’s simply recognizing what’s truly funny all around us. Fine-tuning this skill can immensely improve quality of life for family caregivers. We can learn to take our care-giving mission seriously without having to take ourselves too seriously. Laughter really is the best medicine!

X Thou Shalt Hope Without CeasingWorking with the hospice movement the past few years has taught me incredible things about the power of hope. For instance, there is no such thing as “false” hope; there is just hope. Whether it is hope for world peace, hope for life after death, hope that lunch will be on time, or hope that a visitor won’t drop in during your favorite TV program, HOPE is all powerful and it stands alone.

Emily Dickinson’s famous poem about hope begins with this inspiring stanza: “Hope is the thing with feathers That perches in the soul And sings the tune without the words And never stops at all”

*This article summarizes a presentation for patients and family caregivers prepared for the Veteran’s Administration PADRECC and the National Parkinson Foundation.

The Effects of Coenzyme Q10 in Parkinson’s disease (“QE3”) research trial was the largest placebo-controlled blinded trial to date to evaluate whether or not CoQ10 slows the progression of Parkinson’s disease (PD). The premise of this research was that CoQ10 levels are decreased in PD which leads to dysfunction of mitochondria, the source of energy supply for cells in the body, and that this in turn may contribute to neuronal (brain) cell death. Six hundred participants with relatively mild and recently diag-nosed PD, untreated with other medications, were enrolled. The plan was to follow participants for 18 months, and the main question was whether CoQ10, at a dose of 1200 mg and 2400 mg daily, had any effect on slow-ing progression of PD compared to placebo. This phase III study built upon the phase II CoQ10 study that suggested the possibility that 1200mg CoQ10 daily might slow disease progression.

The data was analyzed after everyone was enrolled, but prior to the last participant completing their 18 month visit, as is often done in large trials like this when the results might be significant enough to make a conclu-sion at an earlier time point. Indeed, the results showed no effect of either CoQ10 dose versus placebo on the progression of PD signs and symp-toms. The decision was made, therefore, to stop the study prematurely and relay this information to the greater PD community as soon as pos-sible. Many people with PD outside of this study take CoQ10, at a vari-ety of strengths and from a variety of sources, and often at considerable expense.

The question still remains what effect a compound like CoQ10 might have at an earlier “premotor” stage of PD, when fewer irreversible changes in the nervous system have taken place, so therefore it would be premature to conclude that CoQ10 will have no role in the future of therapeutics for PD. Given these preliminary results of the QE3 study, however, my recommendation would be to discontinue taking it if the expectation is that it might slow disease progression. It has already been demonstrated in separate well-designed studies that CoQ10 does not provide benefit to symptoms such as slow movement, tremor or muscle rigidity.

Strike Out PD! AnOther SucceSSful YeAr

On Saturday, May 7, 2011, every lane was filled at Sunset Lanes in Beaverton for the 7th annual (and largest ever) Strike Out Parkinson’s Disease event. Sunset Lanes generously donated their facility and staff to support this benefit for the OHSU Parkinson Center of Oregon and Parkinson’s Resources of Oregon.

Over 180 people attended the bowling event, contributing to over $8,000 raised!

Event coordinators Roger and Karen Anderson had the pleasure of giving away the Grand Prize of $1000 to Marc Potts. Other prizes won during the raffle drawing were restaurant gift certificates, performing arts show tickets, and themed gift baskets.

We are grateful to the events' sponsors: Canfield Place The Quarry Serenity Palliative CareAnd a special thanks to the Andersons and Sunset Lanes for their generosity and hard work!

Disappointing Results from Coenzyme Q10 ResearchMatthew Brodsky, MD

Page 5

BRADYPHRENIA: Slowed Thinking Manageable with Right ToolsJenny Clemens MS CCC-SLPSpeech Language Pathologist

Bradyphrenia refers to slowed mental processing. Many individuals with Parkinson’s disease (PD) have complaints of difficulty responding quickly to information. Slowed mental processing can have a significant impact on an individual’s participation in the activities they enjoy such as conversing with friends and family. Slowness in information processing can also impact other cognitive processes (retrieving information and problem solving), which can limit one’s independence. Living with a cognitive impairment is difficult. Cognitive deficits at any severity level can have profound effects on an individual and their loved ones. Everyday tasks can quickly become daunting affecting quality of life.

Improvement in cognitive functions can occur well into older age. This is also true for individuals living with PD. The ability for the brain to change and compensate for lost cells is called neuroplasticity. Many research studies have indicated that exercise plays an important role in this compensation. Compensatory strategies and cognitive exercises learned in Speech Therapy can help an individual cope with bradyphrenia and help improve speed of processing.

Cognitive stimulation plays an important role in aiding this process. Maintaining an exercise program, participating in cognitively stimulating activities, such as being socially involved, are all excellent ways to maintain and improve physical and mental functioning.

Learning new techniques such as compensatory strategies can also be very beneficial. Individual’s living with PD often have complaints of difficulty keeping up in conversation. Speaker control strategies are excellent tools you can use to converse more effectively. 10 Speaker Control StrategieS

1. Ask the person to repeat their statement 2. Ask the person to slow down or speak up. 3. Asking someone to give one piece of information at a time can

be very helpful. 4. Ask questions to clarify information.5. Maintain eye contact with the speaker.6. Clear your mind – try to listen and not focus on what you

are going to say next in the conversation or other wandering thoughts.

7. Take advantage of opportunities to self-reflect. Ask yourself: “Did I understand that statement?”

8. Repeat instructions to yourself and write them down when possible for review.

9. Taking notes such as key words or phrases can help you recall the information.

10. Rephrase the information back to your speaker to make sure you understood them correctly.

Susan Imke, FNP, GNP-C

Dog Days of Summer Director aNd Associate Director’s

CORNER

The OHSU Parkinson Center of Oregon (PCO) has been a leader in DBS surgery, research, and programming for many years. Our DBS program is staffed by six physicians and a physician assistant, Shannon Donovan, PA-C (pictured left), and a neuro rehabilitation team. Our neurosurgeon,Dr.KimBurchiel,wasthefirstneurosurgeontodotheprocedure in the United States in 1991. For more information about our DBS Program, please feel free to contact Shannon at 503-494-7950.

What DBS is. Most patients with Parkinson’s disease (PD) are familiar with the many different medications used to treat their symptoms. For some patients, there comes a time when those medications, specifically levodopa (Sinemet ®, carbidopa/levodopa), don’t seem to work as

well as they once had. They may experience side effects such as dyskinesias (involuntary, uncoordinated movements) that limit the amount of levodopa the patient can take. The patient may also experience motor fluctuations where the patient suddenly goes from an “on” state to an “off” state numerous times throughout the day or when there is a question as to whether levodopa will work at all.

For these patients, a surgical procedure known as Deep Brain Stimulation (DBS), has been shown to be helpful in managing the motor symptoms of Parkinson’s disease such as tremor, muscle rigidity and slowness (bradykinesia) with a dramatic decrease in dyskinesia and motor fluctuations. Deep brain stimulation involves inserting very thin wire electrodes into specific targets in the brain: the Subthalamic nucleus (STN) or the Globus Pallidus pars interna (GPi). The electrodes are attached to a generator implanted under the skin in the chest, much like a pacemaker (see diagram on right). The DBS clinician programs the stimulator based on the symptoms and side effects seen in the individual patient. Since no two PD patients’ disease looks the same, there are a number of different parameters that can be programmed in an attempt to get the best symptom control for each individual patient.

What DBS does. Deep brain stimulation has been shown to be extremely effective in helping those symptoms that respond to levodopa. The goal of the programming is to achieve the best “on” the patient received from levodopa prior to the surgery for a greater proportion of the day without dyskinesias. Consequently, the amount of levodopa a patient is taking may be significantly reduced, thus possibly alleviating other side effects from high doses of levodopa such as extreme lightheadedness due to drops in blood pressure, excessive daytime sleepiness, or levodopa-induced hallucinations. A couple of programming sessions are often needed to find the right parameters which achieve these goals.

What DBS does not do. DBS will not help those symptoms that don’t get better on levodopa. For example, non-motor symptoms such as constipation, depression, anxiety, sleep disturbances, or difficulties with memory will not be helped by DBS. Cognition is an area that may worsen after surgery either temporarily or on a more long term basis. For this reason, an extremely thorough neuropsychological assessment is performed on all PD patients prior to surgery to assess those areas that are most at risk. This information has been shown to be extremely helpful to the patient, their family, and the DBS team in assessing whether DBS is the best treatment option for that patient. Another aspect of PD that may not improve with surgery is gait and balance. For this reason, patients have an appointment with physical therapy prior to surgery to look at their balance both off and on levodopa. Our physical therapists are experts in gait difficulties in Parkinson’s disease, and a vital part of the DBS treatment team post-surgically.

OHSU is unique. OHSU is unique in that the surgery can be performed in two different ways. The first is using microelectrode recording to identify the precise location. Neurons in different areas of the brain fire in different ways, and the neurosurgeon is able to locate the STN or GPi based on the characteristics of the firing patterns. The neurosurgeon also evaluates the patient’s symptoms in the operating room to confirm the correct location of the electrode, and for this reason, the patient is alert and awake for the procedure. This is how the procedure is performed at the majority of DBS centers throughout the world. The second approach is unique to OHSU. This procedure uses imaging in the operating room to identify the target. The neurosurgeon obtains a CT scan in the operating room and merges that image with an MRI that is obtained a few days before. Since the neurosurgeon is using imaging to locate the targets,

general anesthesia is used. In other words, the patient is “asleep” for the entire procedure.

Three keys to success. Three factors ensure that DBS is a successful procedure are:• proper placement by the neurosurgeon• optimal programming by the DBS neurology clinician• realistic patient expectationsThe primary goal of the DBS program here at OHSU is to deliver the best possible comprehensive care for patients receiving this treatment and to continually improve in all three areas.

Understanding Deep Brain Stimulation (DBS) Surgery for Parkinson’s Disease

Shannon Donovan, PA-C

tipS for family and friendS

1. Speak slowly and with a clear voice. 2. Make sure you are looking at your listener. 3. Ask if they need clarification about your statement or

question. 4. Break down long statements into shorter phrases.5. Be patient and give your listener time to respond.

"I will be at every symposium they have..."

Name: DOB: Sex: Primary Care: Dr. (Name and phone #) Neurologist: Dr. (Name and phone #) Emergency Contacts: Blood Type: Current Medications: (list supplements too) Problem Medication Dose Freq Parkinson’s carbidopa/levodopa (Sinemet) 25/100 # tabs taken at (state times) Parkinson’s rasagiline (Azilect) 1mg # tab taken at (state time)

Allergies: (note food allergies as well as drug allergies) Medical Conditions: Parkinson’s disease, … Contraindicated medications for Parkinson’s disease: prochlorperazine (Compazine), metoclopramide, (Reglan), promethazine (Phenergen), droperidol (Inapsine), meperidine (Demerol), all antipsychotics except seroquel and cloazaril

Surgeries: (date: type)

Bradyphrenia - slowed thought processing

A knowledgeable speech therapists can help instruct people with PD how to improve and manage bradyphrenia through:

• cognitive stimulation

• speaker control strategies

Dr. Burchiel performs DBS surgery with the latest technology in the field.

Caregiver rest & respite urged:

One hour per day,One day per week,One weekend per

month.

I Thou Shalt Love Thy Self as Thy NeighborAdmittedly, a reversal from the original ten in Judeo-Christian tradition! Many caregivers become quite skilled over time at meeting the needs of others -- not just their primary care recipients, but those in the family and periphery who always seem to need help. This is an admonition to reserve some time and caring for your own physical and mental health in addition to what you devote to that deserving “other.”

II Thou Shalt Take Thine Own AdviceThis commandment is like unto the first. Seasoned caregivers not only have advice to give, but it’s often quite good advice, based on a wealth of experience. Would you not encourage a neighbor or good friend to make sure her mammogram is done on time or get a flu shot? Do you treat yourself as kindly?

III Thou Shalt Not Take Ridiculous RisksDavid Letterman on late night television once had a segment called, Stupid Human Tricks. This refers to things like climbing on ladders ten years after that practice was safe for you, moving furniture by yourself, mowing the lawn at High Noon in August, etc. You get the idea. People are lured into doing these things because their care partner is no longer able to do them, or they don’t know who to call, or don’t want to pay someone else to do the job. I often remind caregivers that they are just one broken hip away from a family disaster. If a house or yard task is out of your reach or above your pay grade, Just Say No!

IV Thou Shalt Not Take Thy Doctors Too SeriouslyNot to demean my colleagues in the medical profession.... but sometimes physicians, patients, and caregivers indulge in a small group hallucination regarding who is in charge of the patient’s regimen. Rather than consider the neurologist or other doctor as the “boss of you,” consider re-framing the relationship into one where the doctor is the head coach.

Even the best medical coach cannot be out on the field, at home with you every day observing subtle changes in the patient, responses to medications, etc. An educated caregiver is in the best position to collaborate with the patient to take the lead on the healthcare team.

What’s Inside

OHSU Parkinson Center of Oregon

• Caregiver Tips & Experiences (continued inside)

• Director’s Corner

• DBS at OHSU

• Managing Your Medication List

• Rehab: PD Thinking

• PCO Research Opportunities

• CoQ10 Study Stopped

• PAWS: Pups Partner for PD Success

• Calendar of Events: Annual Symposium 9/10

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Oregon Health & Science UniversityDepartment of NeurologyParkinson Center of Oregon, OP323181 Sam Jackson Park RoadPortland, OR 97239-3098

OHSU is an Equal Opportunity Employer

Medical DirectorJohn Nutt,MD

Associate DirectorJulie Carter, ANP.

Research DirectorPenny Hogarth, MD

Newsletter CoordinatorsLisa Mann, RN, BSN, MADiana Potts, BS, MAAmy Achterman, BA

Mailing List/Change of Address:503.494.7231townseka@ohsu.edu

Charitable Giving800 462-6608 or 503 494-7504www.ohsufoundation.orgLori Sweeneysweeneyl@ohsu.eduNeurosciences Development Office

OHSU Parkinson Center of OregonPhone: 503 494-7231Fax: 503 494.9059www.ohsu.edu/pco

Parkinson Center of Oregon

Ten Commandments for Family CaregiversSusan C. Imke, FNP, GNP-C

Parkinson's Resources of Oregon (PRO)800-426-6806

FRI, AUG 12. Argentine Tango for PD Workshop and Dance - 6:30pm to 8:00pmTry something new–-one night only commitment! $10/person. Registration required. Call PRO for details and to register.

SUN, SEP 11, 17, 25. Sole Support 7th Annual Parkinson’s Awareness Walk - 1K and 5K course – wheelchair, walker, stroller & pedestrian friendly.

Individuals, families, and teams welcome. Proceeds benefit Parkinson’s Resources of Oregon.

9/11/2011 – Eugene, Oregon9/17/2011 – Medford, Oregon9/25/2011 – Portland, Oregon

Details and Registration: www.SoleSupport.org.

Calendar of Upcoming Events

28th Annual SymposiumOptions & Opportunities

Continued on page 2

OHSU Parkinson Center of Oregon

• What’s Hot in PD Research & Care• Sight in PD: The Eyes Have It• Speaking Your Mind: Communication

Supports• Nighty-Night: Sleeping Challenges in PD• Ask the Experts• Special Caregiver Breakout: Caregiver Connections - Healthy Caregiving

Also, exhibitors will also share helpful information on managing PD for optimal function and quality of life. PD artists and hobbyists will also share their amazing work to inspire us all.

If you haven’t already received a registration brochure, visit our website at www.ohsu.edu/pco or call 503-494-7231. The registration deadline is September 2nd. We hope to see you there!

Published by the OHSU Parkinson Center of OregonA National Parkinson Foundation Center of Excellence

Hope FROM THE HillSummer-Fall| 2011

SaturdaySept. 10, 2011Red Lion Inn

Jantzen Beach9:00am - 3:30pm

NEWLY DIAGNOSED WITH PD?EVERY OTHER MONTH the OHSU PCO offers a three hour session for people recently diagnosed with PD and their spouse or family member. Participants may ask any and all questions of a PD specialist and long-time patient. $20/person; refreshments served. Call Amy at 503-494-9054 for more information.

Our Newly Diagnosed Education TeamJill White, Julie Carter, John White

Physical therapists (PT) from Oregon, Washington, and Idaho plus representatives from our TEAM-PD network attended a special symposium designed for PTs who treat people with neurological disorders that affect gait and balance, including those with Parkinson's disease (PD).

Ninety (90) therapists listened to presentations by OHSU Parkinson Center experts, including Associate Director, July Carter, ANP; Fay Horak, PhD, PT; and Laurie King, PhD, PT. The two-

day conference sought to improve evaluation skills and treatment options by teaching programs designed and researched by Dr. Horak.

Uniquely, this training also

offered a hands-on application opportunity, where therapists practiced what they learned with the help of people with PD. The PD volunteers were instrumental in training the PTs, and many therapists commented on this as a highlight of the conference.

Our TEAM-PD attendees took what they learned and returned to their home sites performing two inservices for other TEAM-PD members and PTs at their facilities. We hope to do more conferences in the future for other rehab therapists and continue to disseminate improved care models throughout the Northwest.

OHSU Parkinson CenterImproving Care through Outreach

TEAM-PD: Therapists Educated & Aligned in Managing PD

Follow us on...

OHSU Caregiving Conference Reflections

Kay Parr

As the wife of a relatively recently diagnosed, wonderful man with Parkinson's Disease I hated the term "caregiver" and was unwilling to identify with that label. I still find it rather revolting; especially since, as a long-time critical care nurse, it evokes visions of nursing homes and geri-chairs. I wish we could come up with a different term: "nurturer", "concerned, loving person"? None of those terms work. We are what we are--caregivers.

So, when a friend of mine sent me a flyer about a caregivers symposium at OHSU and asked me if I wanted to go with her I mentally called myself a "caring-spouse-of-a-person-with-Parkinson's Disease" and registered. Free massage? A glass of wine? Are you kidding me? I'm in! And, I am very glad that I went.

PD Hikes in Forest Park

Dr. Matt Brodsky of the OHSU Parkinson Center of Oregon is leading a series of hikes organized by PRO this summer. • Wed, AUG 3rd. 5 mile, fairly fast paced hike.• Tue, SEP 13th. 3 mile, moderate paced hike.Registration required; call PRO at 503-594-0901.

OHSU Parkinson Center of Oregon

OHSU PCO specialist, Dr. Matt Brodsky (center) with dog, Balu, and fellow hikers: Sally and Randy Calhoun, Patrick Sousa, Jeff Adlong, Linda and Mike O’Leary, (and PRO's Anna Sanger Reed taking the picture!)

If you are a PD artists or hobbyist, we would love to have you share your talents and exhibit your work. Please call Amy at 503-494-9054 if you are interested.

Park inson Update

SAT, SEP 10 - PORTLAND, OROPTIONS & OPPORTUNITIESJoin us for our 28th annual PD symposium. See detailed information above.

Pictured above: Joy St Peter and Mason, assistance dog-in-training, demonstrate how a dog might help with undressing during the Paws for a Cause benefit. PhotobySaraKaufman.

Training Physical Therapists in Better Assessment & Treatment of PD

Parkinson’s Disease RegistriesJay Nutt, MD

Many of you who attend our clinics are asked about participation in the National Parkinson Foundation (NPF) registry, part of the NPF Quality Improvement Initiative. This registry will produce evidence for best practices for care of Parkinson's disease (PD).

But there is another registry, the Washington State PD Registry that has a different role. This registry has people with PD who are willing to participate in clinical research studies conducted in Washington and Oregon. If you join this registry, and there is no reason that you cannot be in both the NPF and the Washington State PD registries, you will receive invitations to participate in research projects which may range from questionnaires to giving a blood sample to taking an experimental drug. The studies must be approved by the investigator’s institution and the governing board of the Washington State PD registry.

Enrolling in the Washington State PD registry does not commit you to participate in any study but does offer you the opportunity to advance research on PD. You can learn about the Washington State PD Registry from fliers in our clinics or at their website, www.registerparkinsons.org.

Join us for our 28th Annual Parkinson’s Disease Symposium

This year, we are pleased to present as our keynote speaker, Dr. Andrew Siderowf (pictured right) of the University of Pennsylvania Morris K. Udall Center of Excellence in Parkinson's Research. Dr. Siderowf will speak on the latest findings in Parkinson's disease (PD) research and care. But there is so much more....

VA PADRECC (Parkinson's Disease Research, Edu-cation, & Clinical Care)

FRI, AUG 12 - Hospice: Caring for Move-ment Disorder Patients at the End of Life

All presentations are held at the VA Portland Medical Center auditorium from 10 am to 11 am. For more information or to register, call the VA PADRECC office at 503-721-1091.

PTs learn from someone with PD what it means to live with the disease daily.

SEPTEMBER 10th

28th Annual SymposiumOPTIONS &

OPPORTUNITIES

More info on back page.

Continued on page 5

Susan Imke was the keynote speaker at the OHSU Parkinson Center 2011 Caregiver Conference. She is an advanced nurse practitioner based in Ft. Worth, TX and educational consultant to the Society for Progressive Supranuclear Palsy and the National Parkinson Foundation.

OHSU Parkinson Center of Oregon OHSU PCOOHSU_PCO