Parkinson Pathfinder, Summer 2013

Page 1

for your 4 Preparing Neurology Appointment

5 Gait in Parkinson’s Disease 8 Mucuna Pruriens Preventing falls, maximizing mobility

A medical analysis

PA R K I N SO N

Pathfinder SUMMER 2013

Washington Chapter American Parkinson Disease Association


summer 2 013

Table of Contents 1 Letter from the Executive Director 2 Letter from the Coordinator 3 Who We Are and What We Do 4 Preparing for your neurology

appointment: Helping your neurologist to help YOU!

APDA Information and Referral Center GRECC-S-182 1660 S Columbian Way Seattle, WA 98108 Phone: 206.277.5516 Fax: 206.764.2476 Hours: Monday–Friday 9:00AM–5:00PM coordinator@waparkinsons.org www.waparkinsons.org

Diane L. Church, PhD

5

Gait in Parkinson’s Disease Sindhu Srivatsal, MD

7 8

Medical Director

James Leverenz, MD Co Medical Directors

Music Therapy

Ali Samii, MD Phil Swanson, MD, PhD

Bill Dluhosh, MT-BC

Center Coordinator

Zeljka Jurcevic

Mucuna Pruriens Paul J. Nicolai, ND and Laurie Mischley, ND

9 Support Groups 11 Donations 13 Upcoming Events

How to get the most out of your upcoming appointment page 4

Washington Chapter APDA Board

Kristi Murphy Executive Director Peggy O’Neil Shortt President Wendell Matas Immediate Past President Kirsten Richards Accounting & Administration Loryn Heath Secretary Board Members

Stephen Bergenholtz Daniel Burdick, MD Suzanne Cameron Bryan Coluccio Kelly Condefer, MD Suzanna Eller, MA. LMHC Nancy Griese Loryn Heath Valerie Kelly, PT, PhD Jeanne Kieffer Rene Spatz William Struyk Kimia Talajour Debbie Thenutai Ann Zylstra, PT Board Address

P.O. Box 75169, Seattle, WA 98175-0169 Please Send Donations to the Board Address


from our

E x ecuti ve D irector

Welcome to our new and improved newsletter! The Parkinson Pathfinder has undergone a transformation, one I am finding reflective of our organization as a whole. We are breathing new life into our board with the recruitment of new members; we have brought on Zeljka Jurcevic as our new Information & Referral Center Coordinator, and I have transitioned into the role of Executive Director. In January, we welcomed Leslie Chambers, our National organization’s recently elected President and CEO, to Washington State. The Yoga for Parkinson’s class at Northwest Hospital welcomed Leslie and I as group participants, and we both enjoyed waking up on a Monday morning to instructor Peter Lynch’s gentle and effective yoga. Leslie’s visit is indicative of the revitalization that is happening with our National APDA organization. With fresh faces and ideas, we are excited to be on board and help guide this transformation, as we strive to better fulfill our mission to “ease the burden and find the cure.” As a part of our newly redesigned newsletter, we thought it would be a great opportunity to take a moment and remind our many supporters and community members of who we are, and what we do. You may have connected with us at an education program, or through our Taxi Voucher or Caregiver’s programs, but may not have a complete picture of our reach and breadth. Or perhaps you have just picked up this newsletter, and are hearing about us for the first time. To find out more, see our article “Washington Chapter, American Parkinson Disease Association: Who We Are and What We Do” on page 3. In upcoming events, we are excited to announce our First Annual American Parkinson’s Optimism Walk. It will be held on Saturday, September 28th at Lincoln Park in West Seattle, and promises to be a day full of hope, community, and fun! Help us raise awareness and funds for Parkinson’s care, support, and critical research. Learn more at www.waparkinsons.org/walk or by contacting us. I look forward to meeting and reconnecting with many of you in the coming months. Always feel free to reach out with your ideas, suggestions, or to just say hello. You can reach me at kristi@waparkinsons.org or 206.419.7872.

Kristi Murphy Executive Director

ParkinsonPathfinder | SUMMER 2013

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Meet your Information and Referral Center Coordinator! As I settle into my new role

as the Information & Referral Center

Coordinator, I’d like to take the time to introduce myself to you all. I was born in Rijeka, Croatia, and although I was only 6 years old when I left, it has greatly shaped who I am. As an only child of non-English speaking parents, they relied on me for daily life. My mother’s chronic health conditions required constant trips to the doctor and I quickly realized the difficulties involved in getting adequate care and support. At eight years old I was a daughter, an interpreter, and an advocate. As time went on, I became increasingly fascinated by health and it came to be one of my greatest interests. A blessing in disguise, my parent’s struggles in adapting to a new country allowed me to discover what I wanted to do for the rest of my life. My multicultural perspective and interest in health led me to a degree in globalization, health, and development from the University of Washington. During my studies I worked as a caregiver, and although professionally I am still fairly new to the field, I have a great passion for health, science, and research stemming from my childhood. I am very excited about this new role because it brings together everything that I love about this profession; hearing individual stories, constantly learning, and making an impact in the community. Most of all, I want to hear from all of you, I am a firm believer that we all have something to learn from each other. So whether you have a general question, need a referral, or just want to talk, I’m here to listen.

Zeljka Jurcevic

Connect with the APDA: Visit our website at

www.waparkinsons.org...

Visit our

website by scanning this QR code, and sign up for our emails 2

ParkinsonPathfinder | SUMMER 2013

...and like us on


Washington Chapter, American Parkinson Disease Association: Who We Are and What We Do

Founded in 1961, the American Parkinson Disease

reason, we are committed to putting dollars directly

Association has fought the battle against Parkinson’s

toward Parkinson’s research in Washington State. We

disease for more than 50 years. Our mission to “ease

fund the Washington State Parkinson’s Disease Regis-

the burden, and find the cure,” has been made possible

try in addition to other local research studies.

by the passion and dedication of our volunteers, board

We are all in this together. Advocating the impor-

of directors, sponsors, and most importantly – you. The

tance of social support, we endeavor to strengthen and

APDA is a not-for-profit organization that is funded,

maintain support group networks by providing educa-

almost exclusively, by the generous donations of indi-

tional materials, professional facilitators, individual

viduals like you. Our local Washington Chapter has

counseling, and trainings for facilitators. We strive to

been working to ease the burden for more than 15,000

bring patients together around common interests by

Parkinson’s patients in Washington State since 1984.

funding yoga, dance, and singing classes statewide

Our approach to serving the community is compre-

that are designed specifically for people with Parkin-

hensive, focusing on research, patient education and

son’s. Recognizing that every story is unique, we aim

support. We believe in the power of knowledge, the strength in a sense of community, and the importance of independence and mobility. Our efforts aim to improve the quality of life of

We believe that life does not need to be put on hold because you have Parkinson’s.

vidual and provide a variety of programs that fit every lifestyle. We believe that life does not need to be put on hold because you have Parkinson’s. The Washington APDA funds

those living with Parkinson’s while actively supporting the search for better treat-

programs that help maintain independence and mo-

ments and a cure.

bility. Through our popular Taxi Voucher program,

The Information & Referral Center provides educaPhoto courtesy Flickr user dHerrera_96

to tailor our service to the indi-

we provide $300 per year to provide transportation

tion and access to resources through our newsletter,

assistance to those who can no longer drive due

website and comprehensive library of literature. We

to Parkinson’s. Similarly, our Caregiver’s Day Off

keep the community informed of the latest research

program allows caregivers time away to renew and

and treatments by implementing education programs

revitalize themselves, without concern for their loved

for patients, their families, and healthcare providers.

one’s care. P

Our annual HOPE Conference brings together people from all over the country for the common purpose of

I encourage you all to take advantage of our pro-

a healthier life. While working to raise awareness and

grams and services. If you would like more informa-

improve quality of life, we are simultaneously de-

tion about how we can be of service to you, please

voted to understanding the causes of Parkinson’s and

reach out to our Information & Referral Center at

developing treatments to stop its progression. For this

206.277.5516 or coordinator@waparkinsons.org.

ParkinsonPathfinder | SUMMER 2013

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TIPS

Preparing for your neurology appointment:

Helping your neurologist to help YOU!

Changes in mental status (depression, anxiety, cognition, ability to make plans, hallucinations, compulsive or excessive behaviors such as shopping, gambling, or sex) List three items that you most

want to discuss with the neurologist (There may not be time to address everything during your appointment, so it is important to prioritize your needs.)

On your mark! An appointment with your neu-

were discontinued? Have you experienced any side effects? List of Parkinson’s symptoms

Arrive early to allow time for park-

rologist will be most productive if

you are experiencing

ing, using the restroom, getting

you are prepared to share your in-

Which are new? Which are

to the appropriate reception desk,

formation and concerns. Here is a

most troublesome?

checking in, and filling out paper-

checklist to help you get organized.

Get ready!

work. Movement symptoms (walking, getting out of chair, moving in bed etc)

ask the neurologist’s office what

Bring along water, a snack, and any medications you might need in case your appointment is delayed.

If this is your first appointment, Fluctuations in your symptoms

types of information you should

(typically correlated with

bring. These may include office

medication cycle, eating,

Ask a family member or friend to accompany you, to take notes and

notes from other doctors, MRI or

sleeping, and exercise)

remind you anything that seems

CT images of your brain, and lab reports. Medication list

important has not been discussed. Dyskinesias (involuntary movements caused

At your neurology appointment:

by Parkinson’s medications)

You did your homework, so you

Document all prescription medications (including non-Parkin-

4

Go!

are prepared when your neurolo Non-movement symptoms

gist asks about your symptoms and

son’s drugs), over-the-counter

(swallowing, speech, nausea,

medications, vitamins, and

constipation, urinary frequency

supplements; dosages; when

and/or urgency, drooling,

Special requests Ask early in the

medications are taken; and

excessive sweating, dizziness

appointment about prescription

when you first start taking each.

upon standing, swollen ankles,

refills, disability forms, handi-

Are there any medications that

sleep disorders, restless legs,

capped parking permits, etc; often

you were on in the past that

and more)

ParkinsonPathfinder | SUMMER 2013

medications!

continued on page 6


For t h e Caretaker

Gait

in Parkinson’s Disease Sindhu Srivatsal, MD Movement Disorders Neurologist

P

arkinson’s disease has four important features, namely rigidity or stiffness,

slowness of movements, tremor and instability of posture which affects gait. Gait disturbance is often noted during the progression of Parkinson’s disease. It can result from a combination of any of the above factors as well as from abnormal muscle postures such as dystonia and abnormal movements such as dyskinesias. Some of the earliest noted changes in gait might be reduction in the arm swing, a mildly stooped posture, dragging of the affected foot and shuffling while walking. It is important to be aware of gait impairment in PD, as this is a significant risk factor for falls. Falls have been noted in up to 60% of patients with PD, with the risk increasing over time. Impaired gait in Parkinson’s disease can manifest as reduced step height, stride length and speed of movement. There may also be a tendency for subsequent steps to become increasingly shorter and quicker resulting in a running pace. Freezing of gait is another important manifestation

It is important to be aware of gait impairment in PD, as this is a significant risk factor for falls. Falls have been noted in up to 60% of patients with PD, with the risk increasing over time.

of impaired gait where the patient has the sense that the feet are “glued” to the ground and cannot be lifted. It can occur at the start of walking, in straight walking, in narrow or crowded spaces, and during turns. This manifestation can often result in falls. Both pharmacologic and non-pharmacologic means can help manage gait impairment, depending on the cause. Early on, the shuffling and freezing in Parkinson’s often responds to standard medications such as

ParkinsonPathfinder | SUMMER 2013

5


Another study on the effects of tai chi on patients with

continued from previous page dopamine agonists and levodopa. Freezing in “off ”

mild to moderate PD showed improvement in multiple

state is the term used when freezing occurs as the

parameters of gait, such as stride length and functional

medication is wearing off. This freezing responds well

reach, as well as a reduced risk of falls, which was main-

to adjustments of dopaminergic therapy. MAOB inhibi-

tained for months after the training ended.

tors such as selegiline and rasagiline have also been shown to improve gait in Parkinson’s in the long run. As Parkinson’s disease progresses, gait impairment

While multitasking is currently a way of life, patients with a compromised neurological function, such as Parkinsonian patients, are at a high risk of

and freezing can occur independent of medication

falls when they attempt to multitask while walking.

use, and are often associated with significant postural

The cognitive load produced by multitasking has been

instability. While optimizing medication use might

shown to increase the risk of falling as the complex-

still be a reasonable option, one often needs to turn

ity of the load increases. This is partly due to lack of

to non-pharmacologic methods to help manage the

attention to the task of walking and the maintenance

same. The use of visual and auditory cues can often

of gait. This is more apparent in patients with freez-

help improve freezing of gait, as well as gait velocity

ing of gait, and therefore such patients need to pay

and stride length. Visual cues could include focusing

especially close attention to visual and verbal cues, as

on carpet patterns, stepping over objects, and even

well as to avoid multitasking while walking.

laser light cues built into canes and walkers. Auditory

Gait impairment in Parkinson’s disease has been

cues, such as using a metronome or set rhythms, can

shown to be multifactorial, bringing with it challenges

help patients improve gait dynamics, whether they

such as an increased risk of falls. However, tools exist

have freezing or not.

to help manage these symptoms and mitigate the risk.

Freezing during the “on” state of a medication is

Finding the optimal dose of medication as well as ear-

an uncommon phenomenon that can be seen shortly

ly assessments for behavioral and non-pharmacologic

after taking dopaminergic medications. This often

methods of management can help improve the quality

responds to lowering the dopaminergic medication

of life for patients with Parkinson’s disease. P

dose. It is important to differentiate this from the freezing which occurs during the “off ” state, and responds to increasing the dose of the medications. Exercise of mild to moderate intensity several times

Dr. Sindhu Srivatsal is a Movement Disorders Neurologist at the Virginia Mason Neuroscience Institute in

per week can help maintain stability and slow down

Seattle, WA and the Booth Gardner Parkinson’s Care

functional decline in PD. A recent study investigated

Center in Kirkland, WA. She completed her Movement

the effects of community dance in managing PD, and

Disorders Fellowship at the University of Washington

found that patients showed improvement in motor and

and VA Puget Sound. Dr. Srivatsal also has a master’s de-

non-motor aspects of PD, as well as in postural stability.

gree in Public Health from the University of Maryland.

tions, and adaptations to make

Ask the best way to get in touch

a nurse or secretary is available

dressing, grooming, cooking, and

with the neurologist in between ap-

to work on these during your

eating easier.

pointments: Contact with nurse or

continued from page 4

secretary, by phone or email?

wappointment.

Address those three major concerns on your list of priorities.

Ask for a referral to a speech language pathologist for help with speech and communication problems (including vocal volume, clar-

Ask for a referral to a physical therapist for help with balance, gait,

Ask where you can get more information about Parkinson’s disease. P

ity of speech, and increasing facial expressivity) and swallowing.

strength, pain, and flexibility issues.

Ask for recommendations regard-

6

Prepared by Diane L. Church, PhD

Ask for a referral to an occupational therapist for help with handwrit-

ing exercise and nutrition.

ing, home modifications, driver

Ask about participation in clinical

Center at Dartmouth-Hitchcock

evaluations, computer modifica-

research trials.

Medical Center, Lebanon, NH

ParkinsonPathfinder | SUMMER 2013

Courtesy of the APDA Parkinson’s


Music TherapY Music, the Brain, and Technology

Bill Dluhosh, MT-BC Certified Neurologic Music Therapist

Have you ever been driving down the road with

therapy, as well as to help treat depression and anxiety

your mind drifting between hunger, fatigue, traffic,

while promoting relaxation. As in the example above,

to-do lists, etc. when that song comes on the radio?

our brains respond to music in very unique and versa-

The song you haven’t heard in years, but instantly

tile ways. One way people with Parkinson’s disease are

sparks something within you? Almost automatically,

using music to help with freezing is by using technol-

you find your hand reaching for the volume, and you

ogy such as iPhones and MP3 players to listen to their

begin smiling and singing along as if you had only

favorite music as they walk. Research has shown that

heard the song yesterday. Your mood changes, you sit

people who listen to music as they walk have signifi-

up taller, and everything you were thinking of before

cantly less episodes of freezing. What a wonderful

disappears. This is one of the many unique ways that

reason to listen to your favorite music!

music affects our lives. Music therapy is defined by

Other areas where research is being done is with

the American Music Therapy Association (AMTA)

Alzheimer’s disease and Dementia. Some people with

as “the clinical and evidence-based use of music

Alzheimer’s disease may not remember what they

interventions to accomplish individualized goals

had for breakfast or the names of family members,

within a therapeutic relationship by a credentialed

but they do remember music from their lives, and will

professional who has completed an approved music

sing and play instruments (such as tambourines and

therapy program.”

shakers) along with this music. With the internet,

Music therapists don’t teach people how to play

many different types of music and songs can be at

instruments, but rather use music to work on non-

your fingertips, and this may open up a window that

musical goals in a variety of settings and situations.

other forms of stimulus alone, like pictures, cannot.

The people who seek music therapy include children

A soon to be released documentary entitled “Alive

and adults with various neurological disorders such

Inside” discusses how music is being used with elders

as autism, Alzheimer’s disease, Dementia, and Par-

in a variety of ways. P

kinson’s disease, as well as physical injuries including traumatic brain injuries and strokes. Music has also been shown to be very effective in pain management, promoting relaxation and improving the quality of life. People with Parkinson’s disease are using music to provide motor support and motivation for physical

Bill Dluhosh, MT-BC, is a Board Certified Music Therapist certified in neurologic music therapy in Richland, WA.

ParkinsonPathfinder | SUMMER 2013

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H O M EO PAT H IC N E W S

Mucuna Pruriens Paul J. Nicolai, ND (Portland, OR) and Laurie Mischley, ND (Seattle, WA)

Caribbean. The seeds of this plant have historically been

movement and implicated in PD). • Another rodent study demonstrated an effect resem-

used in Ayurvedic medicine as an aphrodisiac, to in-

bling that of carbidopa in a water-soluble extract of

crease sexual function, to treat snakebites and, perhaps

M. pruriens as well as an antiparkinsonian effect

most notably, in the treatment of Parkinson’s disease

similar to an equivalent amount of levodopa, but

(PD). Levodopa, a chemical used in drugs for the clinical

with much less dyskinesia.

treatment of PD, was first isolated from the seeds of this

• M. pruriens extracts with negligible amounts of

plant in 1937. Since then, it has been determined that M.

levodopa still show significant neuroprotective ac-

pruriens contains the highest concentration of levodopa

tivity, suggesting that some of its other components

of any known botanical source, lending credence to

may also have therapeutic potential.

stories of its successful historical use in patients with

• Nicotine adenine dinucleotide (NADH) and coen-

PD. While there have been relatively few clinical trials

zyme Q-10, which may have therapeutic benefits

conducted using M. pruriens, preliminary research sup-

in treating parkinsonism, are present in the seed

ports the potential usefulness of some preparations in

powder of M. pruriens.

the symptomatic management of PD. A 2004 study compared M. pruriens with carbidopa/

However, it is important to keep in mind the possible disadvantages to consider before using M.pruriens,

levodopa (C/L) in efficacy, duration of action, and side

which include the following:

effects in eight Parkinson’s patients. In these patients,

• M. pruriens is not typically a covered benefit of most

M. pruriens demonstrated a considerably faster onset

insurance policies, and will probably cost more than

of effect (35 minutes versus 69 minutes) and longer “on” time (37 minutes) compared to C/L, with no significant

an equivalent dose of C/L. • There have been no long-term studies to determine

differences in dyskinesias or tolerability. The authors

the safety or efficacy of M. pruriens, and searches of

concluded that these benefits “might possess advan-

scientific databases such as clinicaltrials.gov do not

tages over conventional L-dopa preparations in the long-term management of PD,” yet also stating that “[a]

show that there are any currently being conducted. • Most of the studies on M. pruriens have been per-

ssessment of long-term efficacy and tolerability in a

formed using animal models of PD, not on humans.

randomized, controlled study is warranted.”

It can be difficult to find a medical practitioner who

Herbalists have long held that the various components

is willing and able to help guide a patient in making

of whole plants work synergistically with one another.

this choice safely and effectively. If you decide to use

This appears to be true in the case of M. pruriens, as the

M. pruriens, please make sure your physician knows

use of whole plant extracts have demonstrated several

that you are experimenting with alternative sources

advantages not associated with C/L. Possible advantages

of levodopa.

to be gained by using M. pruriens include the following:

Numerous M. pruriens preparations are available from

• M. pruriens cotyledon powder (MPCP) has been

a variety of sources. Because several serious toxici-

shown to have antiparkinsonian and neuroprotec-

ties have been attributed to Ayurvedic and Chinese

tive effects in animal models of Parkinson’s disease

medicines in recent years, it is imperative that patients

that are superior to those of synthetic levodopa.

considering a trial of M. pruriens purchase only from

• Another recent study suggested that the ability of

8

stantia nigra (the part of the brain associated with

reputable companies who can demonstrate that their

MPCP to protect against PD-associated DNA dam-

products have been independently certified to be au-

age may be due to its ability to chelate copper.

thentic and free of contaminants such as heavy metals.

• In a mouse model of PD, M. pruriens significantly

Unlike pharmaceutical preparations of C/L, which are

increased the brain mitochondrial complex-I activ-

chemically standardized and thus can be reliably dosed,

ity. Unlike synthetic levodopa treatment, it signifi-

the composition of M. pruriens extracts may vary

cantly restored the endogenous L-dopa, dopamine,

tremendously based on how and where the plant was

norepinephrine, and serotonin content in the sub-

grown, harvested, and packaged. P

ParkinsonPathfinder | SUMMER 2013

Photo courtesy Carl-Evert Kangas on Flickr

Mucuna pruriens , also known as “velvet bean” or “cowitch,” is a legume found in Africa, India, and the


Support Groups

ALASKA Parkinson’s Support Group 3rd Saturday of the month at 3:30 pm 923 W 11th Ave, Anchorage, AK 99501 Peter Dunlap-Shohl, (907)350-9691 dunlapshohl@gmail.com ANACORTES Anacortes PD Support Group 3rd Thursday of the month at 1:00 pm Island Hospital 1211 24th St., Anacortes, WA 98221 Jerry Ramsey and Nola Beeler (360)293-2185 / njbeeler@yahoo.com BELLEVUE Bellevue Young Onset Support Group 1st Wednesday of the month at 7:00 pm North Bellevue Community Center 4063 148th Ave NE, Bellevue, WA 98007 Suzanna Eller, (206)938-8298 suzanna.eller@providence.org BLAINE Parkinson’s Support Group Blaine UCC 2nd Friday of the month at 5:00 pm 885 4th Street, Blaine, WA 98230 Inge Reuter, (360)332-4564 blaine-pdsg@hotmail.com BOTHELL Parkinson’s Support Group 3rd Tuesday of the month at 10:00 am North Shore Senior Center 10201 E Riverside Dr., Bothell, WA 98011 Susan Quinn, (425)488-4821 susanq@seniorservices.org BREMERTON Parkinson’s Support Group 1st Tuesday of the month at 1:30 pm Canterbury Manor 703 Callahan Dr., Bremerton, WA 98310 David Hull, (360)895-6220

Photo courtesy DHerrera_96 on Flickr

CHEHALIS Parkinson’s Support Group 2nd Thursday of the month at 1:00 pm Bethel Church 132 Kirkland Rd., Napavine, WA Jan Erickson, (360)273-9987 COVINGTON PD Support Group 3rd Tuesday of the month at 10:30 am St. John the Baptist Catholic Church 25810 156th Avenue SE Covington, WA 98042 Stephanie De Leon Lawson steph.pdgroup@gmail.com

in the Pacific Northwest

COEUR D’ALENE Coeur d’Alene Parkinson’s Support Group 1st Friday of the month at 1:00 pm Lake City Senior Center 1916 N Lakewood Dr., Coeur d’Alene, ID 83814 Beth Hatcher, (208)635-5243 cdapsg@hotmail.com

ISSAQUAH Issaquah Support Group 2nd Monday of the month at 2:00 pm Our Savior Lutheran Church 745 Front St. S, Issaquah, WA 98027 Suzanna Eller, (206)938-8298 suzanna.eller@providence.org

DES MOINES Parkinson’s Support Group 3rd Wednesday of the month at 10:00 am Wesley Homes, 815 S. 216th St. Des Moines, WA 98198 *contact group leader before attending* Rita Lambert, (206)870-1302 rlambert@wesleyhomes.org

KIRKLAND Parkinson’s Caregiver Support Group 2nd & 4th Tuesday of the month at 1:00 pm EvergreenHealth room TAN-121 12040 NE 128th St., Kirkland, WA 98034 Amy Cole, (425)899-3122 alcole@evergreenhealth.org

EDMONDS Deep Brain Stimulation (DBS) Support Group *group meets quarterly; date, time and location to be determined* Michelle Bauer, (206)320-2883 michelle.bauer@swedish.org Parkinson’s Support Group 2nd Wednesday of the month at 1:00 pm Edmonds Senior Center 220 Railroad Ave, Edmonds, WA 98020 Carol Agueyo, (425)743-6029 agua549@frontier.com EVERETT Lewy Body Dementia Caregiver Support Group *contact facilitator for date/time info* Carl Gipson Senior Center 3025 Lombard Ave, Everett, WA 98201 Joy Walker, (425)457-4793 joyincaregiving@yahoo.com FEDERAL WAY PD Support Group 3rd Tuesday of the month at 1:30 pm Life Care Center of Federal Way 1045 S. 308th, Federal Way WA 98003 Sandra Machado, (206)334-8440 Sandra_machado@lcca.com GIG HARBOR Gig Harbor Parkinson’s Support Group 2nd Wednesday of the month 4:00 pm St. Anthony’s Hospital 11567 Canterwood Blvd. NW, Gig Harbor, WA 98332 Doug Manuel, (253)858-8741 manuel@harbornet.com HOQUIAM PD Support Group Last Tuesday of the month at 6:00 pm Hoquiam Library, 420 7th St., Hoquiam, WA 98550 Betsy Seidel, (360)533-5968 betsycamel@yahoo.com

LONGVIEW Parkinson’s Support Group 3rd Wednesday of the month at 1:45 pm Canterbury Inn in the Chateau Dining Room 1324 3rd Ave, Longview, WA 98632 Barbara Sudar, bnbsudar@msn.com LOPEZ ISLAND PD Support Group 3rd Monday of the month at 4:30 pm The Gathering Place Lopez Village Lopez Island Jackie Ashe, (360)468-2435 jackieashe@centurytel.net MOUNT VERNON / BURLINGTON Logan Creek Support Group 1st Monday of the month at 10:00 am Logan Creek Retirement Community 2311 East Division St. Mount Vernon, WA 98274 Ginger Dollarhide and Tori Kelly (360)629-8426 / (360)939-0640 weewiseginger@gmail.com OLYMPIA PD Support Group Every Wednesday at 11:00 am *membership required* 1 year=$30/individual $55/couple Olympia Senior Center 222 Columbia Street NW, Olympia, WA 98501 Joyce Beckwith, (360)586-6181 admintemp@southsoundseniors.org PD Support Group/Exercise Class Support Group meets: 3rd Tuesday of the month at 11 am *exercise Class meets every Tuesday at 11 am* Olympia Senior Center 222 Columbia Street NW, Olympia, WA 98501 Rozanne Rants, (360)705-8520 ORCAS ISLAND Orcas Senior Center Tuesdays at 1:00 pm Ted Grossman, (360)376-4979 tfgrossman@yahoo.com

ParkinsonPathfinder | SUMMER 2013

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SU P P O RT G ROUP S

PORT ANGELES Dance with Parkinson’s 3rd Saturday of the month Sons of Norway 131 West 5th St., Port Angeles, WA 98362 Darlene Jones, (360)457-7004 djones@olypen.com

Caregivers of Veterans Every Monday at 1:00 pm Seattle VA Medical Center 1600 S. Columbian Way, Seattle, WA 98108 Room 1D-146gg (near the West Clinic) Kris Fredrickson, (206)764-2188 kris.fredrickson@va.gov

PA Senior Center 4th Wednesday of the month at 10:30 am 328 E. 7th Street (On the SW corner of 7th & Peabody), Port Angeles, WA 98362 Darlene Jones, (360)457-7004 djones@olypen.com

Caregiving Northwest Support Group Studio Evolve Pilates and Bodywork 333 Wallingford Ave N, Seattle, WA 98103 Joy Walker, (206)457-4793 joyincaregiving@yahoo.com

POULSBO Parkinson’s Exercise Class 3rd Monday of the month at 1:30 pm Poulsbo Athletic Club 19611 7th Avenue NE, Poulsbo, WA 98370 Lana Gills, (360)779-7178 lanagale@earthlink.net Young at Heart Support Group 1st Monday of the month at 1:00 pm North Point Church 1779 NE Hostmark St. Poulsbo, WA 98370 Lana Gills, (360)779-7178 lanagale@earthlink.net REDMOND PD Support Group 3rd Wednesday of the month at 1:00 pm Emerald Heights 10901 176th Cir NE, Redmond, WA 98052 John Waltner, (425)556-8140 johnw@emeraldheights.com PUYALLUP Caregiver Support Group 1st Tuesday of the month at 1:30 pm Life Care Center of Puyallup 511 10th Ave SE, Puyallup, WA 98372 Karen Williams, (253)845-7566 karen_williams@lcca.com Parkinson’s Support Group 3rd Thursday of the month at 11:45 am Life Care Center of Puyallup 511 10th Ave SE, Puyallup, WA 98372 Karen Williams, (253)845-7566 karen_williams@lcca.com RICHLAND Parkinson’s Supper Club 3rd Thursday of the month at 4:30 pm Kadlec Neurological Resource Center 560 Gage Blvd, Ste 106, Richland, WA 99352 Heidi Hill, (509)943-8455 Heidi.hill@kadlecmed.org PD Support Group 3nd Monday of the month at 1:30 pm Kadlec Neurological Resource Center 560 Gage Blvd, Ste 106, Richland, WA 99352 Heidi Hill, (509)943-8455 Heidi.hill@kadlecmed.org SEATTLE Atypical PD Support Group (PSP, MSA, CBD) 4th Monday of the month at 4:00 pm Virginia Mason Lindeman Pavilion 1201 Terry Ave, Seattle, WA 98101 James Jones, (206)281-8446 jonesblake@aol.com

10

ParkinsonPathfinder | SUMMER 2013

The Hearthstone 2nd Tuesday of the month at 2:00 pm 6720 East Green Lake Way N Seattle, WA 98103 Erica Campbell, (206)774-5173 MSA Support Group 4th Monday of the month at 11:00 am Lindeman Pavilion at Virginia Mason 1201Terry Ave, Seattle, WA 98101 Carin Mack, (206)230-0166 socialwkr@earthlink.net Parkinson’s Partners Support Group 2nd Tuesday of the month at 1:00 pm Greenwood Senior Center 525 North 85th Street, Seattle, WA 98103 Carin Mack, (206)230-0166 socialwkr@earthlink.net Parkinson’s Support Group 4th Monday of the month at 1:30 pm Horizon House 900 University Street, Seattle, WA 98101 Carin Mack, (206)230-0166 socialwkr@earthlink.net Parkinson’s Young Onset Support Group 2nd Tuesday of the month at 7:00 pm *please contact facilitator for current location* Suzanna Eller, (206)938-8298 suzzana.eller@providence.org PD Support Group 2nd Thursday of the month at 2:30 pm University House Wallingford Northwest Conference Room, 1st Floor 4400 Stone Way N, Seattle 98103 Susanne M. Rossi, (206)470-8041 Susanne.rossi@eraliving.com SPOKANE Parkinson’s Support Group 2nd Wednesday of the month at 1:30 pm Deaconess Health & Education Center 800 West 5th Ave, Spokane, WA 99204 Cyndi Cook, (509)473-2490 center@spokaneparkinsons.org Young Onset Support Group *contact group leader for time and location information* Cyndi Cook, (509)473-2490 center@spokaneparkinsons.org STANWOOD Stanwood Support Group 2nd Monday of the month at 10:00 am Stanwood Senior Center; center social room 7340 276th Street NW, Stanwood, WA Victoria Kelly and Ginger Dollarhide (425)422-1067 / kellytori7@gmail.com

TACOMA Parkinson’s Support Group 3rd Tuesday of the month at 2:00 pm Franke Tobey Jones, Continuing Care Retirement Community 5340 N Bristol St., Tacoma, WA 98407 Kathlyn Neal, (253)752-6621 ext. 313 kneal@franketobeyjones.com Tacoma Lutheran Home Voice Group 3rd and 4th Friday of the month at 11:30 am 1301 N Highlands Parkway, Tacoma, WA 98406 Sharon Jung, (253)752-7112 psnhogan@aol.com VANCOUVER Parkinson’s Family Caregiver Support Group 2nd and 4th Tuesday of the month at 1:30 The Quarry Senior Living Private Dining Room (1st floor) 415 SE 177th Ave, Vancouver, WA 98683 Maria Jokela (360)944-6000 office/(503)290-4443 cell mjokela@thequarryliving.net Parkinson’s Support Group 2nd Tuesday of the month at 12:15 pm *bring brown bag lunch, snacks and drinks provided* The Quarry Senior Living Marble Room (2nd Floor) 415 SE 177th Ave, Vancouver, WA 98683 Maria Jokela (360)944-6000 office/(503)290-4443 cell mjokela@thequarryliving.net VASHON Vashon Lutheran Church Support Group 1st Friday of every month Vashon Lutheran Church Fellowship Hall 18623 Vashon Hwy SW, Vashon, WA 98070 Steve Steffen, (206)463-2655 steve_steffen@yahoo.com WENATCHEE PD Support Group 3rd Tuesday of the month at 2:00 pm LaVerna Armintrout, (509)884-6833 condovikings@gmail.com WEST SEATTLE The Kenney Parkinson’s Support Group 4th Monday of the month at 2:00 pm 7125 Fauntleroy Way SW, Seattle, WA 98136 Michael Byus, (206)937-2800 ext. 5232 MByus@TheKenney.org Parkinson’s Support Group 1st Tuesday of the month at 1:30 pm Providence Mt. St. Vincent 4831 35th Ave SW, Seattle, WA 98126 Suzanna Eller, (206)938-8298 suzzana.eller@providence.org


Thank you

for your generous donations

Donations received January 2012–March 2013

In Honor Of (and Donor)

Brooks Carwin (Jack & Mary Higgins)

James Krogh (Barbara Krogh)

Evelyn Prewitt (Ivan & Betty Hess)

Derry Bowles (Marilyn Bowles)

Melvin Cummins (Mary Jayne Cummins)

Steve Lamken (Donna & Richard Clarke)

Mike Shanahan (Ferdinand Schmitz)

Paul Crowder (Bronwen Lindskog)

Neil Dickinsen (Karen & Ken Giselson)

Bill Mason (John & Joy Dunne)

Robert Vernon Unglaub (Anonymous)

Ed Ewell (Jacquie Ewell)

Steve Dorsett (Sallie Fingarson)

Jeanne Costello Masters (Margaret Teramoto)

Donald Wade (Guyla M Wade)

Eric & Andrea Johnson (SueEllen Blacknall, Jana Ferguson, Nancy & Rocky Griese, Thelma Nies)

Gerald Ecklund (L&J Kinunen Trust, Theodore & Marie Spearman)

Stell McEnear (Shirley Custer)

Dr. Flory Wagenaar (Mr. & Mrs. Joseph Budne)

Gordon & Coral Lee Johnson (Betsy Lardent)

Stanley A Enebo (Joanne Mackay)

Malcolm McLendon (Gail Hovard, Virginia Tubbs, Raymond & Edith Wicks)

Donald Waldron (Suzanna Eller, Providence Mount St. Vincent)

Randy Mosher (Darlean Mosher)

Carol Ruth Erb (Raymond D & Audrey Gay Geist)

Wilbert McWain Sr (Marilyn Corbin)

Bernard A Whitney (Glen Johnson)

Marv Merkel (Mary Keys & Joseph Hettman)

Phyllis Hinkins Wilbur (James R Walesby)

Curt Mikkelsen (Summit Family foundation c/o Mary Hirschfield)

Business

Fred Nelson Jr (Kathy Nelson) Eric Paulsen (Frances B Paulsen) Bernard Robertson (Sharon Robertson) Cal Severns (Jo Ann Fjellman) Fred Van Ieperen (Peggy A Van Ieperen) Son of Alton & Jacquelyn Williams (Alton & Jacquelyn Williams) In Memory Of (and Donor) Jack Abravanel (Lore & Marvin Coe) Gerry Achziger (Sheila & Robert Pollock) Marley Anderson (Ralph & Sharyn McDonald) Harvey Armintrout (Richard & Patricia McLaren, Wenatchee Area PD Support Group) Denis Berthon (Lois Mansperger) Dick Brown (Carin Mack) Mike Carlson (Bill & Joan Carlson) Paul Carter (Virginia Davies) R. Paul Carter (Donald & Elaine Anderson)

Jerry Grafa (Nancy Courtright) Jack Hanning (Barbara & Earle Addis, Richard & Dolores Barnecut, William Beck, Aggie & David Byers, Robert & Geraldine Craig, Robert & Audrey Crowley, Mary Lynn Dalzell, George & Trudy Halverson, Bettie Hanning, Buell & Gloria Hembree, Charles & Micheala Hoppe, David & Elizabeth Knightly, Henry & Mavis Norton, Francis Ratcliff & Family, Harry & Patricia Rollins, James & Carol Shorett, Gwin & Florene Smith, Lois Turner, Jami Vaux, Vicki Vaux, Cal & Joyce Wiseman)

Albert Mindell (Maxine Mindell)

AllState The Giving Campaign BECU Gift Matching Program Bill and Melinda Gates Foundation

Beverly Murphy (Lois & Alan Sands)

Bridge Partners LLC

Kathleen Myhre (Glenn Myhre)

Cameron Catering

Ronald G Nelson (Jerry & Linda Loney)

Curves of Seattle-Ballard

Costco Wholesale Dell

Don Nettleton (Vesta & Everil Loyd) Perry T Newman (Keith & Sophie Wallinder) Uncle Dick Nies (Patti Nies)

Employees Community Fund of the Boeing Company Evergreen Healthcare Gibraltar, LLC Google

Ellen Hauge (William & Cora Auerswald)

John Nixon (Kenneth L Martin, MD)

Hawthorn Retirement Group LLC

John L. Hinkle (Frances Hinkle)

Norma Oberg (Kathleen Strickland)

Hewlett Packard

Joan Holcomb (Janet Zema)

John O’Heron (Willis & Carolyn Calhoun)

Medtronic

Kenneth Hunter (John & Jackie Hoggatt)

Rudolph L Peden (Eric Robertson, Brent Swearingen)

Joe Jay (Nancy Courtright) Herb Jenkins (Larry & Mary Robertson) Henry H Judson, Jr (Phillip Gladfelter) Vic & Vicki Keeran (Linda & Gregg Ridder)

Tony Petrich (Victor Grabar, Susan Jacobsen, Betty Petrick) Stella Petrucci (ML Renie & Teresa Barnes, Paul & Judith Gilliland)

Libertee World Microsoft Matching Gifts Program Moneytree Muckleshoot Casino Providence Mount St. Vincent (gift shop tip jar) Puget Sound Energy Foundation Rock This Sway / Amie Schumer Seattle Foundation

ParkinsonPathfinder | SUMMER 2013

11


D O NO RS

12

Swedish

Henry & Doris Demko

Diane Hutchins

Susan Richardson

Teva Pharmaceuticals

Shwu-jen Hwang

Lawrence Rogovoy

Trident Seafoods

Tamera Van Ness & Dean Desilet

Anthony Jacob

Estate of Helen Ruark

Virginia Mason

Leanne & Randall Devitt

Peter Janni

Donald Russell

Kyle Dunn

Richard D Johnson

Jim & Lari Ryan

Individual Donors

Marvin & Jean Durning

James & Dianne Johnston

Vasanti Sangani

Noor & Bibi Aaf

Frank & Dorothy Duvall

Thomas Juvik

Margaret Schmidt

Sarah Bee & James Aga

Toni Eaton

Owen & Irene Kennedy

Larry & Cheryl Scott

Paul & Virginia Almeida

William Eddy

EJ Kim

Gloria Seitel

Chris Altwegg

Stanley & Ruth Felgar

Robert Koch

Patrick Shanahan

Marie Anchordoguy

Virginia Fergueson

Julie Koehler

R & Julie Sharif

Audrey Anderson

James Ferguson

Nelda Krohn

Paul Sherland

Anonymous

Clive & Jeannie Fleming

Robert & Pamela Krotz

Peggy O’Neil Shortt

Les Apigian

Michele Flotlin

Earline LaFreniere

Miya Cohen-Sieg & Ross Sieg

HP & LJ Armintrout

Patrick & Cora Forgette

Teri Lazzara

Rex & Donna Sines

Kelly Askew

Cindi Forslund

Elizabeth & Charles Lee

John Sirianni

Joelle Averbuch

Hisao & Keiko Fukui

Charles Lenhart

Chester & Marilyn Smith

Thale Balding

Edward Gaborski

Bruce Leone

Kathy Snyder

Robert Ballinger

Susan Geisler

George Lowen

Harold & Barbara Solberg

Ian & Amanda Barr

Dale & Cindy George

Robert & Maureen Lucas

Stephen A Sprenger

Robert Bartell

David & Ruth Ann Getchell

Deborah Magallanes

Madeline & Manny Stermlicht

Susan & James Bates

K. Roger & Martha Gilbert

Ken & Alisa Malloch

Tyler Story

Thomas & Nola Beeler

Helene Gilroy

Rafael & Erlinda Manzanares

Jim & Diane Stump

Stephen & Katy Bergenholtz

Todd & Toni Goins

Dan McGuire

Joanne & Stephen Syre

Robert Beveridge

Betty Greiwe

Rachel J McGuire

Patricia Taylor

Ellen Blackstone

Stephen & Celia Grether

Roy & Linda McIntosh

Kerry Thurman

Perry Bourlier

Nancy & Rocky Griese

Mark McKay

Sandra Timmer

Paul & Debbi Brainerd

James & Judy Grimes

Michael McKinlay

Mr. & Mrs. Thomas Turner

Barbara & John Brassfield

Jewell Hanna

Mary Means

Robert Utter

Scott & Laura Breckenridge

Gary & Jana Hannon

Molly Meyer

Samuel & Lisa Verhovek

Mary Jane Hansen

Curtis & Mary Mikkelsen

Judith Watson

Aaron & Ginadoria Brown

Jeffery & Angela Harbaugh

Robert & Mildred Roach

Thomas Wells

William Brown

Brendan & Patricia Hardy

Barbara Miller

Donella Westfall

Camie Bruns

Nicole Harris

James Miller

Mark Whipple

Estelle & Joseph Budne

Robert & Dawn Hatch

Harold & Evelyn Minea

Glenn & Jean White

Stephen Butler

LL & GL Haugsven

Opal Mitchell

Marylou Whiteford

Eric Camplin

Loryn Heath

Pam Mitchell

Herbert & Dolores Wiegand

Beth Carlyle

Maurice & Gwena Hedlund

Terri Morrison

Daniel & Kay Wilkerson

Arthur Carrier

Richard & Nancy Heembrock

Glenn & Kathleen Myhre

Andrew & Barbara Wold

Beverly & Brent Carter

Margaret Hellyer

Harold & Marlene Nelson

Parvin Zabetian

Paul & Virginia Carter

Leslie Helm

Deborah O’Brien

Sue Zimmermann

Lorrie Church

Judith Herrigel

Gabrielle Omalley

Lisa Clausen

Richard Hile

David & Barbara O’Sullivan

John Clay Jr.

Linda Hilliard & Louis Hilliard

Mummaneni Padmalatha

Jim & Linda Clevering

Patrick Hogan, MD

Snehal Pandya

Kathleen Conner

Dale Hoisington

Frances Paulsen

Glenn & Sarah Corey

Jerald Hollenback

Lisa & Kevin Peake

Patricia Cosner

Wendy Holman

Jay & Francoise Pearlman

Suzanne Cowan

John Hopkins

Arthur Piehler

Michael J Creeden

Leon Hopper

Gerry Pigotti

Ayele & Yeshearg Dagne

Paula Houston

Dewey Potter

T. Dean

James R Hoyt

Harlan & Darlene Prater

Claudia Delgrosso

Dawn Bourdo & William Hughes

Kathryn Rhodes

ParkinsonPathfinder | SUMMER 2013


MARK your CALENDARS! American Parkinson Optimism Walk september

28 2013

Supporting research and information and Referral Centers Lincoln Park in West Seattle To register or find out more information call the

Scan this QR code on your smartphone to be linked directly to our calendar of events on our website

Information and Referral Center at 206.277.5516.

november

16 2013

HOPE Conference New Location at the Meydenbauer

Ne loca w tion

!

Convention Center in Bellevue, Washington

Patient and Caregiver Education Programs 2013 For the most up-to-date information about upcoming programs check our website at www.waparkinsons.org AUGUST

SEPTEMBER

OCTOBER

Bellingham, WA

Wenatchee, WA Ellensburg, WA Tri-Cities, WA Yakima, WA

Moses Lake, WA Lewiston, ID

YADA:

Learning About Disabilities through Fun! YADA (Youth Awareness Disability Assemblies) is a unique program seeking help in Seattle-area elementary schools. Our program was started by the vision of Sue Dahlin, a former physical education teacher sidelined by multiple sclerosis. It has now met the needs of schools for over a decade. YADA guides students through fun and informative activities about the brain, service animals, the senses and more. A follow-up Q&A session then allows participants to meet adults with various disabling conditions and learn how they adapt to everyday life. So far, we’ve been invited to take our interactive program to forty elementary schools in King County and we are booked for another year. YADA is a completely volunteer-run endeavor, relying on a core group of station leaders and other on-call volunteers. We have been overjoyed to receive glowing evaluations from principals, teachers, PTA members and, most importantly, the students. We love what we do and are committed to continue, but as a group that primarily consists of individuals challenged by disabling conditions, we need more people to join us in our inspiring work. Recent media coverage has resulted in greater interest locally and beyond. We hope to meet the new demand for programs with an emphasis on anti-bullying and respect for diversity.

You can help us in the following ways: Assist in the development of a “how-to” resource guide for interested parties Join us as a part of the Board Get involved in local organizations to spread awareness Connect with additional volunteers for YADA school events

To learn more about YADA, contact us at YADA4Kids@msn.com. ParkinsonPathfinder | SUMMER 2013

13


Yes!

I want to help “ease the burden, and find the cure” for Parkinson’s Disease.

Enclosed is my tax-deductible gift of: (check boxes) $25

$50

$100

$250

$500

$1000

Other amount

My employer will match my gift Please send me information on wills and how a bequest can support WA APDA. I’m interested in learning more about Parkinson’s Disease. Please send me information.

Please clip and return with your check, made payable to: Washington APDA Send checks to us at PO Box 75169 Seattle, WA 98175 To donate by credit/ debit card, please visit our website www.waparkinsons.org or call 425.243.2732

This gift is given in honor of/in memory of

Please notify the individual(s) listed above Address

City

State Zip

Donor’s name Address

City

State Zip

Email address

The Washington State Chapter of the American Parkinson Disease Association is a nonprofit 501(c)3 organization. Our tax ID number is 13-1962771.

Thank you for your generosity!

APDA Information and Referral Center GRECC-S-182 1660 S Columbian Way Seattle, WA 98108

S U B S CR IB E TO OUR N E W S L E T T E R! Sign up for our newsletter by visiting our website

www.waparkinsons.org or emailing coordinator@waparkinsons.org


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