MAY 2016

6370 LBJ Freeway

Suite 170

Dallas, TX 75240

(972) 620-7600

www.daps.us

speaker bio 2

march refreshment thank you 2

march speaker recap: dr pavasia 3

appreciation plaques 4

executive director’s message 5

donations to non-event 5

memorials, honors, donations 6

group schedules 7

calendar of events 8

INSIDE

MAY

general

membership

meeting

speaker:

Karl Robb

topic:

A Soft Voice in a

Noisy World

Monday, May 9, 2016

1:00 p.m.

As always, light refreshments

will be available.

We look forward to seeing you!

University Park

United Methodist Church

4024 Caruth Blvd (at Preston)

Dallas, TX 75225

See page 2 for speaker bio.

April’s Parkinson’s Awareness Luncheon

Spotlights Services Offered by DAPS

Picture a room full of people who

have just finished eating a delicious

Italian meal—thanks to Sean Duncan

and Medtronic—all joining in with

several seated dances and

participating in exercises designed

to move with intent. Those present

were reminded of the importance of

speech therapy in maintaining one’s

voice and the ability to communicate

clearly. There was also a very

informative presentation about the

DAPS Partners-in-Care groups and the support that is available for the

caregivers. Last, but not least, was an inspiring video of Parkinsonians

participating in Title Boxing’s non-contact boxing program that is available to

DAPS members at a reduced cost.

Not all DAPS members participate in the services and classes that DAPS has

to offer and the leaders who presented were only representative of a few of

those who work with DAPS. Seeing and hearing all that the talented group of

class leaders do in speech therapy, exercise classes, Partners-in-Care support

groups, Dance for PD®, and non-contact boxing was quite impressive—

especially to those who have never been to a class!

Misty Owens leading a dance.

From left to right are 4 of the

6 leaders who presented:

Barb Mack, exercise

instructor; Heidi Weimer,

boxing; Lue Taff,

Partners-in-Care;

Michelle Currier, boxing.

Presenters not pictured are

Misty Owens (dance) and

Pat Warner (speech).

Luncheon continues on page 3

PAGE 2 · DAPS · MAY 2016

Board of Directors

Chad Swank, Ph.D., President

Barbara Glass, Vice President

Cindy Weatherall, Advisory Council Liaison

Diana Winkelmann, Treasurer

Chris Clausen

Liza Farrow-Gillespie, J.D.

Bentley Foster

Ann Heidger

Mary Ellen Malone

Chick Martin

Heather Stevens

Jim Struble

Greg Wood

Dedicated to impacting and improving

the lives of those affected by

Parkinson’s disease

Medical Advisory Board

Shilpa Chitnis, MD, Ph.D.

Richard B. Dewey, Jr., M.D.

Richard L. Fulbright, Ph.D.

Dwight C. German, Ph.D.

R. Malcolm Stewart, M.D.

Gary L. Tunell, M.D.

Newsletter

Jill Dominguez, Editor

The DAPS newsletter is published monthly as an

information guide only, and does not serve as legal or

medical advice. We welcome your feedback,

contributions or requests. Please send to or contact:

Jill Dominguez

Phone: 972-620-7600

jill@daps.us

www.daps.us · facebook.com/daps.us

Submissions must be received by the 1st of the month

preceding publication date and are subject to editing.

Advisory Council

Sarah Atwood

Dusty Berry

Jean Blomquist

Ben Casey

Carlie Dorshaw-Moe

Shirley Hand

Charlene Noe

Sandi Pautler

Joyce Susman

Barbara Taylor

Executive Director

Mike Miles

May Speaker Bio:

Karl Robb

Karl Robb has had Parkinson’s disease

(PD) for over twenty-five years. Karl

believes he has had PD since he was

seventeen years old and was diagnosed at

the age of 23. Now almost 50, he is a

Parkinson’s advocate, entrepreneur,

inventor, writer, blogger, photographer,

and speaker on PD issues.

Karl is the author of the book, A Soft Voice

in a Noisy World: A Guide to Dealing and

Healing with Parkinson’s Disease. He has

been chosen as a blogger partner for the

4th World Parkinson Congress

(www.wpc2016.org) being held this

September in Portland, Oregon.

He has a bachelor’s degree in English

from the University of North Carolina at

Chapel Hill. His writing has been featured in The New York Post and he has

appeared on BBC radio, the CBS Saturday Evening News, Japanese

television, and several local Washington, D.C. television stations.

Karl’s blog is www.asoftvoice.com. You may contact him via email

at asoftvoice@gmail.com, on Facebook, or via Twitter @asoftvoicepdvisit.

Refreshments for the

March General Membership Meeting

were provided by

SENIORS Helping SENIORS®

You can learn about their services at

seniorcaredallasnorth.com.

We appreciate their generosity!

MAY 2016 · DAPS · PAGE 3

Luncheon continued from front page

by Margaret B. Schroeder

Dr Nirav Pavasia is a movement disorders specialist

with the Neurology Consultants of Dallas,

specializing in Parkinson’s disease (PD) and Parkinson’s

Plus in addition to many other neurodegenerative disorders.

“With Parkinson’s disease,” he said, “you have to

move, laugh, and connect. You’ve gotta get exercise.”

He showed a brief video featuring several of our DAPS

members dancing and rapping to the beat, proving that

PD doesn’t have to get you down. Through the audience’s

laughter, Pavasia quoted early civil rights leader,

Booker T. Washington:

“If you want to lift yourself up, lift someone else up.”

Pavasia stated that PD is classically considered a motor

disease. However, it actually manifests as a multitude of

symptoms, both motor and non-motor. Traditional treatment

has focused predominantly on the motor symptoms, but

in the last decade it has been found that the non-motor

symptoms can be even more disabling. Examples of

non-motor symptoms of PD include:

Depression

Anxiety

Hallucinations

Impulse control problems

Impairment of executive function (managing time,

paying attention, planning, organizing)

Impairment of autonomic functions (drooling,

swallowing, urinary control, sleep disorders)

“Things are changing now,” said Pavasia. “Research is

looking for biomarkers for PD.” Such biomarkers can

occur 10 years before PD is normally diagnosed by motor

symptoms such as stiffness and rigidity. Non-motor

biomarkers include loss of sense of smell (hyposmia),

sleep disorders, and gastrointestinal (GI) dysfunction.

There are imaging biomarkers which can be detected by

the Flourodopa PET scan or the DAT scan with which

many of our DAPS members are familiar. In the case of

the Flouradopa PET scan, PD may be distinguished from

other forms of neurodegeneration. The DAT scan is useful

for possibly determining the course of the disease and

predicting how advanced the disease may be in the next

five years.

Changing Directions for the

Treatment of Parkinson’s

Disease

Changing continues on page 4

In addition to the class leaders’ presentations, we

celebrated and recognized the Outstanding Volunteer of

2015, Leo Dagley (below on right), Outstanding

Instructor of 2015, Barb Mack (below on left), and

Outstanding Corporate Donor of 2015, Briggs

Equipment. Briggs was unable to send a representative

to the luncheon, so DAPS Executive Director, Mike

Miles, went to the Briggs Equipment offices later to

present the award. Accepting the award (below) is

Brenda Allen, Executive Assistant to Chris Meinecke,

President/COO of Briggs US.

Comments pouring into

the DAPS office following

the luncheon have been

overwhelmingly positive!

Some expressed that they

thought this was the best

DAPS meeting they have

ever attended. Others

were amazed at the

talented people at DAPS

or were surprised to learn

how much DAPS does.

DAPS President, Chad Swank, says he is often

reminded of the tremendous scope of all DAPS offers.

“The April Parkinson’s Awareness luncheon was a fun

occasion to spotlight a few of those opportunities,” said

Chad. “Of course, it’s the people of DAPS who make the

programs work and the meetings meaningful. Their

passion, devotion, and creativity were on display! From

group leaders to volunteers to members, DAPS is

impacting lives.”

The success of this luncheon would not have been

possible without the enthusiastic participation of the

112 people who attended, some for the first time.

Thank you all for coming!

PAGE 4 · DAPS · MAY 2016

Coming in the future are GI biomarkers. “The same

pathology in the brain can be found in the colon,” stated

Pavasia. Tests are being developed now for diagnosis

in the future using colon biopsy and salivary gland biopsy.

There are also new options coming soon that offer better

and more direct delivery of medication. These include

methods of administering medication through inhalation,

injection, and the PEG tube. In addition, medications are

being developed in extended release form. A transdermal

patch is in Phase II trial which will deliver levodopa directly

through the skin.

For “sudden off” symptoms, there is a rescue medication

called apomorphine that was approved by the FDA in 2004

for the ultrafast reversal of off time. It works within 10

minutes and has effects lasting more than 30 minutes.

Currently, it’s in Phase III research trials.

Other drugs approved by the FDA and undergoing

additional studies include:

Mirabergron – for the treatment of an overactive

bladder

Droxydopa – for the treatment of orthostatic

hypotension (dizzy spells when suddenly

standing up)

Pimavanserin – for the treatment of hallucinations

and psychosis in PD without worsening the effects

of motor symptoms

There are many good reasons for treating the non-motor

symptoms of PD. For example, excessive drooling is

caused by saliva pooling at the front of the mouth because

the patient isn’t swallowing automatically. This may lead to

aspiration (choking). Impulse control problems are another

form of non-motor symptoms of PD and are important to

treat because they may lead to over-shopping, gambling,

and overeating. Constipation is a non-motor symptom of

PD that prevents absorption of medications and nutrients in

food, and is therefore important to treat.

One of the best treatments for PD is physical therapy and exercise. “It delays the progression of the disease,” said Pavasia. “Build yourself up slowly until you can exercise for

one hour a day. The progression [of the disease] will be much slower and your meds will be much more effective,” he stated.

Deep Brain Stimulation (DBS) has been thought of as a last

resort in the treatment of PD but “that is not how it should be,” stated Pavasia. “Now the FDA is revising their criteria,” he said. “If you get it in the earlier stage of PD, the outcome is often quite a bit better. Yes, there are complications.

Yes, DBS makes motor symptoms better but it can also make cognitive symptoms worse.” A neurologist can test to see whether DBS is appropriate in the earlier stages of PD. New surgical options were released in 2015 that allow a Bluetooth wireless connection to the DBS inputs with

advanced security. “An iPod or iPad can be used to change the settings,” he stated. By the expression on Pavasia’s face, you could tell that he is very excited about this new development.

Other up and coming technologies include the Kinesia ONE

and the Kinesia 360. “You wear the Kinesia ONE device on

your finger and it generates a report that tells me exactly

what I need to work on in the DBS settings or the

medications,” Pavasia explained. The Kinesia 360 is a small

wrist bracelet that you wear all the time. It generates

a report containing objective measurements of tremor,

dyskinesia, and mobility. It connects to an app on an

Android tablet where users input medication and diary

information. Studies are showing a 51% improvement in

users’ rating of quality of life. “That is huge,” stated Pavasia.

Although much work is yet to be done in the prevention,

detection, and treatment of PD, we know that the National

Institutes of Health is investing in research that improves

the lives of people with Parkinson’s. DAPS would like to

thank Dr. Pavasia for taking the time to come out to our

monthly membership meeting for this presentation.

Members are encouraged to ask their movement disorders

specialist about these new and exciting treatment options.

Dr. Pavasia can be found online at

www.neurologydallas.com.

Continued from previous page

During Parkinson’s Awareness Month, DAPS was proud to

present plaques of appreciation at two locations where

No-Charge classes for local Parkinsonians are offered.

On the left, Mike Miles presents a plaque at Lakeside

Baptist Church in Garland. On the right, Larry Davis, pastor

of South Garland Baptist Church, passes their plaque to

Charlene Noe, the DAPS facilitator there, in recognition of

all she does to keep classes running smoothly.

MAY 2016 · DAPS · PAGE 5

Feed the Rabbits

Here in the office, Jill was talking about an upcoming family

trip and she said that because one of their daughters was

not feeling well, she “would stay in the hotel and feed her

rabbits.” Maybe this was one of those times that I should

have just let it go, but I didn’t. My curiosity got the best of

me. Several sentences later, I had to interject, “I didn’t

know y’all had rabbits.” Well, even if I didn’t show my

surprise at the thought of the rabbits traveling with the

family, Jill clearly showed her surprise at my question

about the rabbits. “We don’t have rabbits.” “But you said

that your daughter would stay in the hotel room and feed

her rabbits.” Jill just smiled and said, “No, I said my

daughter would stay in the hotel room in CEDAR RAPIDS.”

Jill and I had a good laugh at this exchange. I hope that

you have as well and that some of you can relate to this.

I would hate to think I am the only one this happens to.

Clear communication is not always as easy as one might

believe. Here at DAPS, we are working hard to get the

word out that DAPS really does make a difference and we

are strongly committed to impacting and improving the

lives of those affected by Parkinson’s disease. There is no

mistaking what we are hearing. Our efforts are paying off.

There is a growing sense of energy and excitement about

DAPS and the services that we are providing the

Parkinson’s community. Some, but not all, of that energy

and excitement is being generated by the leadership team

of DAPS. That team is made up of the DAPS Board, the

DAPS Advisory Council, the group leaders, the staff, and

all of our volunteers. But, it doesn’t stop there. I am also

hearing from people who say, I heard about DAPS from my

neighbor, from my friend, from my doctor, and on and on.

So, whether you are in Dallas, Plano, Garland, McKinney,

Carrolton, Duncanville, Las Colinas, Richardson,

Mesquite, or even if you should find yourself in Cedar

Rapids, thank you for being one of the many DAPS Good

Will Ambassadors. We have a story to tell that is worth

telling—and it will take us all. I hope you never miss a

chance to share a good word about DAPS!

Kindest Regards,

A message from Mike Miles

Executive Director

Donations to

Eighth Annual

Non-Event

“Tour Yellowstone National Park”

Fountain Geyser

Donna Burson

Barbara Mack

Lion Geyser

Mike & Donna Miles

Lone Star Geyser

Gina Borgognoni in memory of

Gary Atwood

Jack Brown in honor of

Joannne Brown

Ben & Sue Casey

Janet & Joseph Cuevas

Raul & Jill Dominguez in memory of

Abe & Marianne Lichtenstein

Carlie Dorshaw-Moe

Barillon Dougherty in memory of

Clarice & Brook Dougherty

Dwight German

Mr. & Mrs. Chester Haschke

Dotty & George Kilpatrick

Sara Staley

Joyce Susman in memory of

Beril Susman

Old Faithful

Rosemary Francis in memory of

Richard Francis

Lee Mann

Charles & Pat Patterson in memory of

Gary Atwood

Sylvia Reber

Joseph Sailors

Anita & Andy Schoeneberger

Margie Semke in memory of

Charles Semke

Caren & Bob Tate

For the 3rd consecutive year,

an anonymous donor

will match up to $20,000

of contributions made

to the Non-Event!

Donations received in April will appear in the

June newsletter.

PAGE 6 · DAPS · OCTOBER 2014 PAGE 6 · DAPS · MAY 2016

MEMORIALS · HONORS · DONATIONS

MARCH 2016

In memory of Allen J. Hargis

From: Juanita Wagener

In memory of David Summer

From: Sue & Lee Hassell

In memory of Ernie Martin

From: Scott MacPherson

Charles Schlinke

In memory of Ken Casaday

From: Darryl & Charlotte Taylor

Linda Bass

Raul & Jill Dominguez

Independence Tube Corporation

Jean & Darrell Arnold

Sue McCaslan

John P. Morrow

Joann Mullins

Ernestine Naylor

Curtis Sawyer

Shirley Wolfe

Amigos en Azul

Mike & Carolyn Gilmore

Christi Jiannino

Mike Miles

Cindy Seago

In memory of William “Bill” Russell Hall

From: Rod & Cathy Erakovich

David, Karla, Jackson & Easton Descoteau

Jan & Bob Firth

Zelda Goldwyn

Beth & Britt Langford

Mike Miles

Billie Anderson

Ron & Judy Broadwell

Judy Drotman

Shirley Lockridge

Robert G. Marshall

Mike & Dee Miller

Norm & Nicole Oost

Joyce Phillips

Laird F. Schaller

In memory of Shirley Miller

From: Sonny & Elketha Goodman

In honor of Jack L. Witherspoon

From: Marc W. Wallace

Donation to DAPS

From: Anonymous individuals via Bank of America

Employee Giving Campaign

Anonymous individuals at March General

Membership Meeting

Anonymous individuals matching gift

Edna Buentipo

Joe & Janet Cuevas

Barbara Glass

Mary Pat & Peter Maguire

Nick Payzant

Heritage Ranch Country Club Car & Truck Show

CNC Home Care

Kroger Community Rewards

DAPS at Lakeside Baptist Church (Dallas)

DAPS at Preston Hollow (Dallas)

DAPS at McKinney

DAPS at Custer Road (Plano)

DAPS at Trinity (Duncanville)

Ian Andersen

Dusty Berry

Edna Buentipo

Jill Dominguez

Raul Dominguez

Bentley Foster

Liza Farrow-Gillespie

Barbara Glass

Ann Heidger

Pam & Matt Michel

Mike Miles

Donna Miles

Sandi Pautler

Jackie Reis

Debora Schoene

Joyce Susman

Cindy Weatherall

Diana Winkelmann

Greg Wood

GEMs are donors who Give Every Month.

Our GEMs are very valuable!

Sign up on the DAPS website.

Your monthly

donation

of this amount...

1 exercise class session

2 speech therapy class sessions

12 Dance for Movement Disorders Classes

12 care partner support group sessions

12 General Membership Meeting room rental fees

$5.00

$15.00

$25.00

$50.00

$100.00

...will provide for this each year:

DAPS’ NO-CHARGE

exercise · speech therapy · support groups

MAY 2016 · DAPS · PAGE 7

THPHD GROUPS & CLASSES

The Movement Disorders Education and Resource Center

at Texas Health Presbyterian Hospital Dallas (THPHD)

at 8200 Walnut Hill Lane, Dallas, TX 75231 offers the following for free:

PD Patient Support Group Care Partner Support Group

3rd Thursday each month at 6 pm 4th Monday each month at 1 pm

Essential Tremor Support Group Atypical Parkinson’s Support Group

2nd Wednesday of odd months at 1 pm (PSP/MSA/CBD)

3rd Saturday each month at 10 am

For more information or to RSVP, please contact Kathryn MacDonell at

214-345-4224 or DallasMovementDisorders@TexasHealth.org.

CARROLLTON:

Nor’kirk Presbyterian

3915 N. Josey Lane (972-492-1578)

Group Exercise:

Wednesday...10:00 to 11:00 am

Speech Therapy:

Wednesday…11:15 am to 12:00 pm

DALLAS:

Baylor Institute for Rehabilitation

909 N. Washington (214-820-9353)

Water Therapy: (nominal fee)

Wednesday...11:00 am to 12:00 pm

Finley Ewing Cardiovascular &

Fitness Center, Studio 3

5721 Phoenix Drive (214-345-7074)

Dance for Movement Disorders:

Tuesday…2:00 to 3:15 pm

Thursday...2:00 to 3:15 pm

1st Saturday...11:00 am to 12:15 pm

Lakeside Baptist Church

9150 Garland Rd. (214-324-1425)

Group Exercise:

Wednesday...9:30 to 10:30 am

Speech Therapy:

Wednesday...10:30 to 11:15 am

Partners-in-Care Group:

2nd Wed...10:15 to 11:15 am

Preston Hollow United Methodist

Church

6315 Walnut Hill Lane (214-363-4393)

Speech Therapy:

Tuesday...11:30 am to 12:30 pm

Group Exercise:

Tuesday...10:30 to 11:30 am

Thursday...10:30 to 11:30 am

DUNCANVILLE:

Trinity United Methodist Church

1302 S. Clark Rd. (972-296-2155)

Speech Therapy:

Thursday...1:00 to 1:45 pm

Group Exercise:

Monday...3:30 to 4:30 pm

No class last Monday of the month

Thursday...2:00 to 3:00 pm

Support Meeting:

Last Monday...6:30 to 8:00 pm

Partners-in-Care Group:

3rd Thursday...1:00 to 2:00 pm

Dance for PD®:

Monday...1:30 to 2:30 pm

No class last Monday of the month

GARLAND:

South Garland Baptist Church

1330 E. Centerville Rd. (972-271-5428)

Group Speech:

1st & 3rd Monday… 9:30 to 10:15 am

Thursday… 9:30 to 10:15 am

Group Exercise:

Monday...10:30 to 11:30 am

Thursday...10:30 to 11:30 am

Discussion Group:

Monday...9:30 to 10:30 am

Partners-in-Care Group:

Thursday...10:30 to 11:30 am

IRVING:

MacArthur Hills Sr. Living

1295 Kinwest Pkwy. (469-251-4349)

Group Exercise:

Tuesday...10:00 to 11:00 am

Friday...10:00 to 11:00 am

MESQUITE:

Mesquite Rehabilitation Institute

1023 North Belt Line Rd.

(972-216-2400)

Speech Therapy: Tuesday...9:30 to 10:00 am

Group Exercise:

Tuesday...10:00 to 11:00 am

PLANO:

Custer Road United Methodist

Church

6601 Custer Road (972-618-3450)

Speech Therapy:

Thursday...11:00 to 11:45 am

Group Exercise:

Monday...9:45 to 10:45 am

Thursday...9:45 to 10:45 am

Partners-in-Care Group:

Monday...9:45 to 10:45 am

Da nce for PD®:

Monday...11:00 am to 12:00 pm

RICHARDSON:

Arapaho United Methodist Church

1400 W. Arapaho Rd. (972-231-1005)

Group Exercise:

Tuesday...10:00 to 11:00 am

Friday...10:00 to 11:00 am

NON-CONTACT BOXING

FOR PARKINSON’S DISEASE

Title Boxing Club of Allen

300 N. Greenville Ave.

214-644-2640

allen-greenville.titleboxingclub.com

Tuesday/Thursday..10:30 to 11:30 am

DAPS has partnered with

Title Boxing of Allen to obtain

reduced rates. Learn more about the

program at FreeMotionPD.com.

Contact the class trainer, Heidi

Weimer, with any questions or

concerns.

Tuesday...10:30 to 11:30 am

Wednesday...8:15 to 9:15 pm

Saturday...10:15 to 11:15 am

Non-Profit

Organization

U.S. POSTAGE

PAID

Dallas, TX

Permit No. 3255

RETURN SERVICE

REQUESTED

Dallas Area Parkinsonism Society

6370 LBJ Freeway, Suite 170

Dallas, Texas 75240

(972) 620-7600

All General Membership and Board Meetings are held at University

Park United Methodist Church, 4024 Caruth Blvd., Dallas, TX 75225.

For more information, call 972-620-7600.

DAPS McKinney meets on the 3rd Tuesday of every month at

St. Gabriel the Archangel Church, 110 St. Gabriel Way, McKinney,

TX 75070. Email mckinney@daps.us for more information.

MARK YOUR CALENDAR

disclaimer: The contents or opinions expressed in this Newsletter are those of the individual writers or presenters and do not constitute an endorsement or approval by DAPS staff. Please consult your personal physician regarding your individual medical problems.

For change of address or corrections, please indicate the changes on this page and mail it to DAPS, or email: daps@daps.us

daps general membership meeting

Monday, May 9 - 1:00 p.m.

Speaker: Karl Robb

Topic: A Soft Voice in a Noisy World

open board meeting

Monday, May 16 - 1:00 p.m.

next month

Monday, June 6 - 1:00 p.m.

Speaker: Tim Powell, Cerna Homecare

Topic: Beyond Homecare: Advocacy and

Entertainment for Patients and Caregivers

daps mckinney

Tuesday, May 17 - 10:00 a.m.

Videotaped Program: Karl Robb

Topic: A Soft Voice in a Noisy World

next month in mckinney

Tuesday, June 14 - 10:00 a.m.

Videotaped Program: Tim Powell

Topic: Beyond Homecare: Advocacy and

Entertainment for Patients and Caregivers

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