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
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 [email protected], 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 [email protected].
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 [email protected] 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: [email protected]
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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