Chester Clinic

Daps.us

6370 LBJ Freeway
Suite 170
Dallas, TX 75240
(972) 620-7600
www.daps.us
FDA Approves Two New Parkinson's Drugs Good news for the Parkinson's community came in early January this year as the FDA approved two new drugs. RYTARY™ is an extended-release oral capsule form of carbidopa/levidopa for use in early through late stages of Parkinson's disease (PD). DUOPA™ is approved for treatment of motor fluctuations in the late stages of PD. It is administered through an infusion pump that delivers carbidopa and levodopa directly into the small intestine. • RYTARY™ (pronounced rye-TAR-ee) addresses the needs of patients who experience reduced mobility as levodopa levels drop by providing a formulation of carbidopa/levidopa that releases more slowly over time. In addition to the extended-release beads, the capsule contains immediate release beads that are designed for rapid effectiveness. Studies of RYTARY showed subjects had significantly increased amount of "on" time during waking hours without troublesome dyskinesia. The manufacturer states that dosage of RYTARY will require careful monitoring, as there is not a direct 1:1 correlation between it and Liza Farrow-Gillespie, J.D. carbidopa/levidopa. However it can be taken whole, or for those experiencing See page 2 for speaker bio swallowing problems, the beads in the capsule may be sprinkled on applesauce and consumed. RYTARY is scheduled to be released in four strengths and available for commercial distribution in February 2015. For more information, please consult • DUOPA™ has been approved as an orphan drug, a designation given to Safaris to Sea Pirates: products intended to treat rare diseases or conditions that affect fewer than Adventure Travel 200,000 patients in the US. As PD progresses, it becomes increasingly difficult to treat the motor symptoms of the disease with immediate release oral As always, light refreshments carbidopa/levidopa tablets. DUOPA is administered continuously for 16 hours will be available. through a tube called a PEG-J that is surgically inserted into the stomach. A We look forward to seeing you! small pump moves the medication from a cassette into the PEG-J tube. The pump delivers DUOPA as a large dose first thing in the morning, as a Monday, February 9, 2015
continuous dose while the pump is on, and as any extra doses needed during the day. In clinical trials, patients with advanced PD who received DUOPA 1:00 p.m.
showed significantly reduced "off" times. Full prescribing information, including a medication guide, can be found at These new drugs help fill an unmet need for patients living with Parkinson's to United Methodist Church significantly increase the amount of time symptoms are adequately controlled. As always, please seek your doctor's advice when determining how best to meet your medical needs. february speaker bio 2
legislative news 4
memorials, honors, donations 6
thank you 2
weather reminder 5
group schedules 7
daps: past, present, future 3-4
executive director's message 5
calendar of events 8

february speaker: Liza Farrow-Gillespie, J.D. Liza Farrow-Gillespie is a lawyer, musician, sailor, pilot, and dedicated travel buff. From 1998 to 2005, Liza and her husband Alan Dedicated to impacting and improving lived aboard a sailboat and circumnavigated the lives of those affected by the globe. They made landfall on six Parkinson's disease continents and visited 55 countries and island Executive Director groups. A book about their adventure is set for publication in summer 2015. This past year, they got the travel bug again Board of Directors and went on safari in South Africa and Cindy Weatherall, President Zimbabwe. Liza enjoys sharing stories about Chad Swank, Ph.D., Vice President her travels and hearing stories from others Joyce Susman, Secretary and Advisory Council Liaison Diana Winkelmann, Treasurer Liza is managing partner of a law firm in Liza Farrow-Gillespie, J.D. downtown Dallas, where she practices law in the areas of estate planning, probate, nonprofit organizations, and elder law. Mary El en Malone In addition to those areas, her firm focuses on health law, employment law, litigation, corporate law, government law, and family law. Liza is a trustee of the Dallas Opera and a portfolio advisor for Texas Women Ventures Fund; and Heather Jennings Stevens she has served on the board of directors of DAPS since 2013. Advisory Council Carlie Dorshaw-Moe Medical Advisory Board Shilpa Chitnis, MD, Ph.D. Richard B. Dewey, Jr., M.D. Richard L. Fulbright, Ph.D. Dwight C. German, Ph.D. Jorge A. Romero, M.D. R. Malcolm Stewart, M.D. for their generous contribution Gary L. Tunell, M.D. Jill Dominguez, Editor December holiday luncheon! 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: Phone: 972-620-7600 Submissions must be received by the 1st of the month preceding publication date and are subject to editing. PAGE 2 · DAPS · FEBRUARY 2015 Dallas Area Parkinsonism Society: Past, Present, Future by Margaret B. Schroeder The Dallas Area Parkinsonism Society (DAPS) has a In 1980, DAPS organized the first exercise class for people strong foundation that began in 1978, explained Cindy with PD and added speech therapy classes in 1981. Weatherall, President of the Board of Directors for DAPS. These classes have always been offered free of charge to "Fiduciary duty started keeping me up at night," she said, participants, and now caregiver classes are offered as well. "so I knew I had to do something." When Cindy decides to It takes many volunteers to keep DAPS running smoothly, ‘do something,' she really goes all out. She enrolled in the Center for Philanthropy and Nonprofit Leadership at Rice University in Houston, Texas and received her Certificate in Nonprofit Leadership with distinction in 2014. "I read binders Advisory Council and binders and binders of meeting minutes," she said, as Group Facilitators she described the coursework she did. Musicians – The Reflections Band Speakers What better way to kick off 2015 than to tell the story of DAPS and the vision for its future? "It began in 1978," Snack Providers she said, "with a 73-year old woman whose husband had Newsletter Writers and Producers Parkinson's disease (PD). When she couldn't find a group Website and Database Experts in Dallas, she started her own!" And so, Clarice Dougherty Churches which provide space for classes and her husband, Brook, became the founding members Participants at monthly meetings of DAPS, modeled after HAPS, the Houston Area Parkinson Society, DAPS manages all of these volunteers which had been founded just four and activities with minimal paid staff, DAPS was founded in 1978.
years prior. Together the two including our new Executive Director, It was modeled after HAPS,
organizations are among the three Mike Miles; our Administrative oldest independent groups in the the Houston Area Parkinson
Associate, Jill Dominguez; and our nation that benefit people with PD. Society. Today, these two
exercise, speech and support group organizations are among the
"Did you know that the average lifespan of a Fortune 500 company is three oldest independent
Some of the funds used to support 40 years? We're 36!" exclaimed groups in the nation that
DAPS have come from the generous Cindy. "And relationships are the benefit people with PD.
donations of our membership. In foundation of what we do at DAPS." addition to membership contributions, For example, Dr. Malcolm Stewart we receive many honors, memorials, spoke at the DAPS "Get Acquainted" and additional donations from class meeting in 1978. About that same time, Dr. Stewart was participants. In 2014, we had a successful April Assistant Professor of Neurology at UT Southwestern Non-Event and we benefitted from the September North Medical Center at Dallas (UTSW). He later went on to Texas Giving Day. We are thankful to Briggs Equipment for become President of DAPS and earned the DAPS their generous donations in 2013 and 2014, and also to Fish Community Service Award in 1983, 1984, and 1985. He City Grill / Half Shells for their First Tuesday benefit established the Alzheimer's and Parkinson's disease donations. But the most significant donation came to us as program at Presbyterian Hospital Dallas, has been a a bequest in 1996 from someone with no known connection clinical professor of neurology at UTSW since 1995, and to DAPS. If not for the generosity of a stranger, DAPS was selected for the Best Doctors in America Award in would have fallen into the red in 2008. Other smaller 1996 and 2001. He has remained a constant friend of bequests have been given since 1980, some of which came DAPS throughout his career. from people who were connected to DAPS and others who were not. DAPS has made many longstanding connections in the Dallas area, arguably the most important being the According to DAPS Vice President Dr. Chad Swank, the University Park United Methodist Church, where our first recorded benefit of exercise for people with PD was membership meetings have been held since1979. Other published in The Journal of the American Medical area churches host various classes for DAPS, graciously Association in 1951, when the disease was known as without charging for the use of space. Paralysis Agitans. We know there is scientific evidence in FEBRUARY 2015 · DAPS · PAGE 3 neurological diseases, including Multiple Sclerosis and Parkinson's disease. The information collected will provide addition to our own personal observations that exercise is a foundation for evaluating and understanding aspects of an important part of the treatment for PD. Clearly, DAPS these diseases we currently do not have a good grasp of, provides needed services. such as the geography of diagnoses, variances in gender, DAPS has also been able to donate approximately disease burden and changes in health care practices $500,000 to Dallas area researchers, including Dr. Dwight among patients. According to Burgess, this new German of UT Southwestern Medical Center at Dallas. surveillance system could one day lead to a cure for During Cindy's presentation, she showed an archive photo of Dr. German sitting next to Clarice Dougherty in 1986. In "Because no national collecting system exists to gather data our June 2014 membership meeting, Dr. German on disease and risk, geography and incidence, diet and announced that he had recently conducted a successful trial relapse, we are hampered in our ability to understand these showing the potential existence of a blood biomarker for conditions and improve the lives of these patients," Burgess PD. Since then, he was awarded a nearly $3.5m grant from said. "What this bill does is simple and long overdue: It the National Institutes of Health to expand his research organizes and analyzes important information that will lead across 240 participants. Through this line of research, Dr. to better treatment and even a cure for neurological German and his colleagues hope to find a way to slow diseases, which are so misunderstood, yet so prevalent down, stop, or even reverse PD, something which no drug "The Advancing Research for Neurological Diseases Act will When Cindy was studying for her Certificate in Nonprofit help the CDC provide more accurate information to assist Leadership, she conducted a survey of independent those who research and treat neurological diseases, organizations serving the Parkinson's community across including Multiple Sclerosis and Parkinson's disease," Van America. Of 16 participating groups, DAPS was the only Hollen said. "I am proud to continue working with one offering significant services without the help of an Congressman Burgess on this important legislation, which executive director (ED). In order to continue our legacy and will provide a foundation for evaluating and understanding expand our vision further, Cindy decided to ask the DAPS the occurrence of these diseases and improve the Board of Directors to take a leap of faith. By investing in an prospects for discovering cures." ED, DAPS will be able to assign major responsibilities in the The bipartisan legislation has been endorsed by the areas of evaluation, management, and development. The National Multiple Sclerosis Society and the Parkinson's ED will also continue building relationships, identify new Action Network, among others. resources, and help grow DAPS' skills. We are happy that Mr. Mike Miles was selected to fill this new position. With "Having a national data collection system gathering critical Mike at the helm, we are confident that DAPS will continue information on who has Parkinson's disease would be a to sustain itself with help from volunteers and the generous game changer," Ted Thompson, CEO of the Parkinson's donations from you, our family and friends. Action Network, said. "We have advocated for the federal government to engage in this area because researchers have long said that such a system will help ensure better and more effective research, better treatments, and better Legislation Introduced services for people living with Parkinson's disease and other to Provide Better Understanding neurological disorders. Our hope is that it would one day help contribute to ultimately finding a cure for Parkinson's." of Neurological Diseases Parkinson's Action Network (PAN) partners with other A press release on January 13, 2015, issued by the office of Parkinson's organizations as well as grassroots volunteers Congressman Michael C. Burgess, M.D., (R-TX) announced around the country to educate the public and government that he and Congressman Chris Van Hollen (D-MD) have leaders on better research policies and improved quality of introduced legislation to improve and enhance the life for people living with Parkinson's. If you are interested in understanding of neurological diseases, which afflict tens other legislative issues concerning Parkinson's disease, of thousands of new patients in the U.S. each year. email alerts and updates are available by signing up on The Advancing Research for Neurological Diseases Act, PAN's website, Interested parties H.R. 292, will guide the Centers for Disease Control and may also contact PAN's Texas assistant director, Linda Prevention in tracking the incidence and prevalence of Swanson, at [email protected]. PAGE 4 · DAPS · FEBRUARY 2015 Earn money for
while you shop!

Tom Thumb Good Neighbor Program
Link your Tom Thumb Rewards card to number 3071,
A message from Mike Miles and a percentage of what you pay to Tom Thumb will Executive Director be donated to DAPS!
Kroger Plus Card
Community Rewards Program
The Kroger Plus Card Program now requires you to
First Impressions
link your card online to benefit DAPS. Picture a man washing his car with a down-on-his-luck, log in. In your Account Summary, look for Community homeless man sitting on the curb nearby. The man washing Rewards. Click Edit, type in our Organization number his car assumes that the man is going to ask for money. He (80709), and click the button next to Dallas Area
never does. Finally the homeless man speaks. Here it Parkinsonism Society. Click Save. Show your Kroger comes – he is going to ask for money. Instead he says, Plus card at the register and DAPS earns cash! "Really nice car!" The guy thanks him, but does not get iGive.com
engaged in a conversation, because, after al , the homeless The iGive mall includes your favorite stores. Best of man only wants money. Finally the guy gives in and asks, all, up to 26% of your purchases are donated to DAPS. "Do you need some help?" The homeless man's answer Just go to sign in or sign up for an really surprised him. "Don't we all?" account and choose DAPS as your cause. Next time Here at DAPS we have terms such as PWP and Caregivers. you shop, go to iGive first to sign in, click on your store Well, if we must have terms, these are as good as any to of choice, and a percentage of your purchase benefits help distinguish which side of PD you're on. But I have to THANK YOU!
believe that if it's not PD, it's something else. And the rest of the story is, that it is never just PD, never just cancer, never just finances, never just relationships. The list is endless. These things, these misfortunes don't describe who we are, unless we let them. I have to admit that sometimes I am guilty of passing someone on the street or in the marketplace and having that first impression, "There goes someone who has it all! There is someone without problems. There is someone who doesn't need a thing." My first In the event that there is bad impressions could not be farther from the truth. weather on the day of a I do believe the homeless man hit the nail right on the head. DAPS meeting, group or class, We all need help…which I think means we all need to be helping each other. we will follow decisions I bet you thought I, like the man on the street, was going to determined by the Dallas ask you for some money – a donation to DAPS. Well, we all do need help. "Just kidding about the money. Sorta." Independent School District. Wishing you and all of us a day of getting and giving the help FEBRUARY 2015 · DAPS · PAGE 5 MEMORIALS · HONORS · DONATIONS In memory of Jobea Nell Graham Bittenbender
In honor of Marie Thorpe
From: Patricia Eddings From: Cheryl Thorpe In memory of Harry and Reba Swiff
In honor of Misty Owens' birthday
From: Joseph and Helen Swiff Memorial Fund of the Dallas Jewish Community Foundation Donation to DAPS
In memory of Jerry O'Connor and Chester Maxey
From: Briggs Equipment Larry Christenson
In memory of Ramon Navarro
Doug and Judy McIntyre From: NORCAL Mutual Insurance Company Jim Ann Grandstaff In memory of Troy Sheldon Quigley
From: Brandon Quigley Jeffrey and Deborah Hamer In memory of Geoffrey Nelson
Philip Pottinger From: Sondie Rosenthal In honor of Greg Wood
Debby and Don Shannon From: Amy Anderson
In honor of Sam Farrow
Cindy Weatherall From: Liza Farrow-Gillespie Anonymous donors Half Shells Seafood Grill - Plano, In honor of Jim Harned
First Tuesday donation From: Elizabeth Kitay DAPS @ Preston Hollow (Dallas) DAPS @ Trinity (Duncanville) About Memorials, Honors, and Donations Flowers fade within days. Memorial tributes to DAPS have a lasting effect, funding our more than 25 Parkinson's exercise, speech, and support groups and education programs. Your generous donations will be listed in our DAPS newsletter. Both you and your honoree will receive letters of acknowledgement and thanks, but the dollar amount will be included in your letter only for tax purposes. Send these special tributes to the DAPS office, with instructions regarding who the donation is in honor of or in memory of and who should be recognized as the donor. You may also make memorial donations at www.daps.us. Just click the Donate button on the right side and you will be taken to PayPal, where you can add "in memory / in honor of" details by clicking the "Add special instructions to the seller" link that appears on the second web page, after you enter your payment or login information. THPD GROUPS & CLASSES
The Movement Disorders Education
exercise · speech therapy · support groups and Resource Center at Texas Health
Presbyterian Hospital Dallas (THPD)
St. Andrews Christian Church
(8200 Walnut Hil Lane, Dallas, TX 75231) 3945 N. Josey Lane Trinity United Methodist Church
offers the fol owing. For more information or to RSVP, please contact
Group Exercise:
1302 S. Clark Rd. Kathryn MacDonell at 214-345-4224 or
Wednesday.10:00 a.m. to 11:00 a.m. Speech Therapy:

Speech Therapy:
Thursday.1:00 p.m. to 1:45 p.m. Wednesday…11:15 a.m. to 12:00 p.m. Group Exercise:
Monday.3:30 p.m. to 4:30 p.m. No class last Monday of the month PD Patient Support Group
Baylor Institute for Rehabilitation
Thursday.2:00 p.m. to 3:00 p.m. 3rd Thursday of each month at 6pm in 909 N. Washington (214-820-9353) Room 111 at Texas Health Resources
Support Meeting:
University (THRU).
Water Therapy: (nominal fee)
Last Monday.6:30 p.m. to 8:00 p.m. Wednesday.11:00 a.m. to 12:00 p.m. Essential Tremor Support Group
2nd Wednesday of odd months at 1pm
Finley Ewing Cardiovascular &
South Garland Baptist Church
in Room 111 at Texas Health Resources
Fitness Center, Studio 3
1330 E. Centerville Rd. University (THRU).

5721 Phoenix Drive (214-345-7074)
Group Speech:
Atypical Parkinson's Support Group

Dance for Movement Disorders:
Thursday.9:30 a.m. to 10:15 a.m. Tuesday…2:00 p.m. to 3:15 p.m. 3rd Saturday of each month at 10am in Group Exercise:
Thursday.2:00 p.m. to 3:15 p.m. Room 111 at Texas Health Resources
Monday.10:30 a.m. to 11:30 a.m. 1st Saturday.11:00 a.m. to 12:15 p.m. University (THRU).
Thursday.10:30 a.m. to 11:30 a.m. Care Partner Support Group
Discussion Group:
Lakeside Baptist Church
4th Monday of each month at 1pm Monday.9:30 a.m. to 10:30 a.m. 9150 Garland Rd. in the Red Room at Texas Health
Partners-in-Care Group:
Resources University (THRU).
Speech Therapy:
Thursday.10:30 a.m. to 11:30 a.m. Wednesday.10:30 a.m. to 11:15 a.m. Group Exercise:
Dance for Movement Disorders
Wednesday.9:30 a.m. to 10:30 a.m. Instructed by Misty Owens, MFA. Custer Road United Methodist
Every Tues. & Thurs. 2-3:15 pm; Partners-in-Care Group:
every 1st Sat. 11am-12:15 pm in 2nd Wed.10:15 a.m. to 11:15 a.m. 6601 Custer Road Studio 3 of the CVC* This class is

Speech Therapy:
co-sponsored by Texas Health Preston Hollow United Methodist
Thursday.11:00 a.m. to 11:45 a.m. Presbyterian Hospital Dallas and
Group Exercise:
the Dallas Area Parkinsonism 6315 Walnut Hill Lane Monday.9:45 a.m. to 10:45 a.m. Society (DAPS) and is offered free to
Speech Therapy:
Thursday.9:45 a.m. to 10:45 a.m. individuals with movement disorders. Tuesday.11:30 a.m. to 12:15 p.m.
Discussion Group:
Water Exercise for Movement

Group Exercise:
Disorders
Tuesday.10:30 a.m. to 11:30 a.m. Contact DAPS office for details In the pool at the CVC* every Monday,
Thursday.10:30 a.m. to 11:30 a.m. Wednesday, & Friday at 11:15 am. Partners-in-Care Group:
(A physician release form and the Monday.9:45 a.m. to 10:45 a.m. purchase of a CVC punch card are Mesquite Rehabilitation Institute
required. Please call for more information: 1023 North Belt Line Rd. Arapaho United Methodist Church Caregivers are welcome to attend any
Group Exercise:
1400 W. Arapaho at Coit of these support groups and exercise
Tuesday.10:00 a.m. to 11:00 a.m.
Group Exercise:
classes.
Tuesday.10:00 a.m. to 11:00 a.m. *CVC = Finley Ewing Cardiovascular & Fitness Center,
5721 Phoenix Drive, across Greenville from Presbyterian
Friday.10:00 a.m. to 11:00 a.m. Hospital, Dallas. 214-345-7074 FEBRUARY 2014 · DAPS · PAGE 7 Dallas Area Parkinsonism Society
6370 LBJ Freeway, Suite 170 Dallas, Texas 75240 RETURN SERVICE
REQUESTED
MARK YOUR CALENDAR general membership meeting Find DAPS on the internet and Monday, February 9th - 1:00 p.m.
Topic: Safaris to Sea Pirates: Adventure Travel
Speaker: Liza Farrow-Gillespie, J.D.

open board meeting
Monday, February 16th - 1:00 p.m.

next month
Monday, March 9th - 1:00 p.m.
Topic: Sleep Disorders
Speaker: Sonya Merrill, MD, PhD, FACP

All General Membership and Board Meetings are held at University Park
United Methodist Church, 4024 Caruth Blvd., Dallas, TX 75225.
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.
@dapsinfo
For change of address or corrections, please indicate the changes on this page
and mail it to DAPS, or email:

Source: https://daps.us/sites/default/files/201502.pdf