may 2020 are we there yet? may · are we there yet continued from front page women often face...
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6370 LBJ Freeway Suite 170
Dallas, TX 75240(972) 620-7600 www.daps.us
MAY 2020
INSIDEspeaker bios 2
thank you 3volunteer spotlight 4
non-event fundraiser 4pd psychosis 5
memorials, honors, donations 5
upcoming events 6virtual classes & webinars 7
upcoming meetings 8
ARE WE THERE YET?A Message from Executive Director Mike Miles
The short answer is, “Not quite.” How close are we? It’s hard to say, but we are moving in the right direction. We’re on the way to getting there.
We’re at a place that none of us has ever been before. And, as we go through this together, there seems to be no doubt that we are making progress. We are headed in the right direction. But what will it look like when we “get there?”
Coronavirus, COVID-19, the unseen enemy, outbreak, epidemic, pandemic, essential
activities, social distancing, shelter in place, quarantine, flatten the curve…these are words and phrases that have become a part of the new normal—not just here but around the world. Life looks different, at least for now.
When we “open back up for business,” we will begin to return to our old routines that I suspect will seem refreshingly new. Until then, we make the best of it.
Something I have heard so many times is, “DAPS is like a family.” That sense of family has never been more important than it is now. Families rise to the challenge in tough times. Families check on and support each other in times like these, times when we are on the way to the other side of COVID-19.
Here’s what “on the way” looks like for the DAPS family now:• Opportunities to “come together” for care partner support
groups, exercise, and speech classes 7 days a week via live Zoom meetings.
• YouTube exercise recordings available anytime.• Some members who were attending a group and exercising once
a week are now Zooming in to exercise five times a week.
DAPS is Zooming! (Learn more on Page 8)
Visit daps.us and follow us on Facebook for the most up-to-date information and links to webinars.Are We There Yet continues on Page 3
MAY Virtual
Educational SEriES
Monday, May 11 at 1:00 p.m.
SPEAKER:
Michael Soileau, MDTOPIC:
Take ON Your OFF Periods – Recognizing Off Periods in
Parkinson’s DiseaseSponsored by Acorda Therapeutics
Tuesday, May 19 at 1:00 p.m.
SPEAKER:
Aanchal Taneja, MDTOPIC:
Taking ON Parkinson’sSponsored by Amneal
(Speaker bios on Page 2)
Dedicated to impacting and improving the lives of those affected by
Parkinson’s disease
Executive DirectorMike Miles
Board of DirectorsBentley Foster, President Jo Klein, Vice President
Barbara Glass, Secretary Greg Wood, Treasurer
Advisory CouncilSarah Atwood Charlene Noe Ben Casey Sandi Pautler Carlie Dorshaw-Moe Joyce Susman Pat Goukler Barbara Taylor Shirley Hand
Medical Advisory BoardShilpa Chitnis, M.D., Ph.D. Richard B. Dewey, Jr., M.D.
Thomas D. Franklin, Jr., Ph.D. Richard L. Fulbright, Ph.D. Dwight C. German, Ph.D. Aashoo Mentreddi, M.D.
Padraig O’Suilleabhain, M.D. Nirav Pavasia, M.D.
Alexander Peralta, M.D. R. Malcolm Stewart, M.D.
Gary L. Tunell, M.D.
NewsletterJill Dominguez, Managing Editor Pam Michel, Production Editor
DAPS StaffCarrie Marquis, Administrative Assistant
[email protected] Leisha Phipps, Program Director
The DAPS newsletter is published monthly as an information guide only, and does not
serve as legal or medical advice.
Martha BonillaMike BraitschJared CaplanChris ClausenMartha FiddesStephen Holman
Harold KelloggJim LynchGreg RectorMarcie SalamoneChuck Stewart
PAGE 2 • DAPS • MAY 2020
MAY 11, 2020 SPEAKER:Michael Soileau, MD
Michael Jayson Soileau, MD, is the Founder and Owner of Texas Movement Disorder Specialists in Georgetown and Waco, Texas, and a Clinical Assistant Professor at Texas A&M Health Science Center in Bryan, Texas.
Dr Soileau received his medical degree from the University of Texas Medical School at Houston. He completed an internship and a neurology residency at
the University of Michigan in Ann Arbor, and a movement disorder and neurodegenerative disease fellowship at the University of Texas Medical School at Houston.
Dr Soileau has coauthored many papers for peer-reviewed medical journals. He is a member of several professional organizations, including the Texas Medical Association, the American Academy of Neurology, and the Movement Disorder Society.
MAY 19, 2020 SPEAKER:Aanchal Taneja, MD
Dr. Aanchal Taneja did her General Neurology residency at UT Southwestern. She is fellowship trained in Movement Disorders and Parkinson’s Disease from the University of Texas Southwestern Medical Center at Dallas, with a special focus on Deep Brain Stimulation (DBS) programming. Dr. Taneja is also fellowship trained in Clinical Neurophysiology and Neuromuscular Disorders, which gives her an edge in Botulinum toxin
injections as a treatment for various movement disorders. Her clinical research interests include cognitive decline in patients with Parkinson’s disease and DBS as effective management for some movement disorders.
Dr. Taneja has delivered presentations at national and international conferences for which she has received awards. She is a member of the American Academy of Neurology and the Movement Disorder Society. Dr. Taneja is dedicated to providing compassionate, patient-centered care for individuals with movement disorders and believes in building a long-term relationship of caring and trust.
PAGE 3 • DAPS • MAY 2020
Thank youto Faye Elahi for her online
presentation on Diet & Nutrition for our April Educational Series!
If you missed April’s Educational Series on Diet & Nutrition with Faye Elahi, you can find a link to the recorded presentation on our website (daps.us) or go directly to:
https://youtu.be/9xtwgGufSVo
• We have added some Move.Laugh.Connect. (MLC) exercise classes to our Zoom schedule.
• People are checking on each other through calls, texts, and emails.
• On April 21st, the DAPS Educational Series was Zoomed live, allowing anyone, anywhere to participate.
• For now, more Educational Series will be Zoomed until we are meeting in person again. Check the DAPS website to see what is coming.
And, here is some of what we are hearing:
• From an adult child whose mother has PD, “Mom had not exercised in 3 months—she has had so much fun and is excited to participate again.”
• “Thank you (DAPS) for the extra work done for our loved ones,” to organize and make available the Zoom exercise classes.
• “The exercise, speech, and support groups are so helpful and appreciated and it is so great to
see and hear from our friends who are joining the classes through Zoom.”
Even in these challenging times, DAPS continues to make a difference impacting and improving the lives of those affected by Parkinson’s disease.
Now, more than ever, we need your help to fund the work of DAPS. I’ve never felt awkward asking our members and friends of DAPS to give to support the work of DAPS. And, even though these are difficult times, the mission and work of DAPS continues. I understand that not everyone will be able to give under the current circumstances, but, for those who can, please join me in making a donation to our Non-Event “Aloha! Welcome to Hawaii” fundraiser. Gifts are being matched dollar for dollar up to $20,000. We need your help as we find new ways of doing what DAPS has always done best: meeting the needs of the Parkinson’s community in the Dallas area and beyond. Please give, if you are able. Every gift makes a difference.
Stay safe. Look out for and check on each other. Join classes that are offered via Zoom
and keep exercising.
Are We There Yet continued from front page
Women often face different symptoms than men
when it comes to Parkinson's disease (PD).
If you are interested in a women’s support group
to address and share specific concerns and issues
unique to women with PD, please contact Leisha at:
Women with Parkinson's
Volunteer Spotlight
PAGE 4 • DAPS • MAY 2020
Dallas Area Parkinsonism Society Invites you to join us for ourTwelfth Annual Non-EventHonoring Parkinson’s Awareness Month April 2020
Aloha!awaiiHWelcome to
Due to the challenges of the COVID-19 pandemic, we have decided to extend the official end of the Non-Event from the end of April to the end of May. Thank you to those who have given. If you haven’t given, we hope that by extending the campaign, this will make it possible and easier for you to make a donation. For me, having given early in the campaign, this will allow me to make a second donation, not as large as the first, but every gift makes a difference.
Pam MichelAfter being diagnosed with Young Onset Parkinson’s disease (YOPD) in 2001, Pam continued working as Director of Children’s Music at a large church in Flower Mound until 2006. Early retirement meant she could focus on spending time with her two daughters before they went to college. It also meant focusing on living better with YOPD.
Pam was introduced to DAPS when she met DAPS member Sandi Pautler at an exercise class. “The exercise class wasn’t the best fit for me at the time,” says Pam, “but Sandi and I immediately connected and we’ve been friends ever since.” Sandi attended DAPS meetings, volunteered to help at meetings and in the DAPS office, and, before long, Sandi persuaded Pam to join her. Pam says she began enjoying the connections she was making in the DAPS office and in 2013 she was asked if she was interested in taking over putting together the monthly newsletter. “Since I was no longer teaching and my kids were in college, my creative outlets were community theater, church musicals, and a small mosaic art business,” Pam says, “and I wrote a small
newsletter for my art business. Sandi, of course, knew this and suggested I give it a try.”
By early 2014, Pam completed training for the DAPS newsletter and took over as Production Editor for the February 2014 edition. A small newsletter team plans, gathers, and writes content each month and Pam’s job is to compile everything into an attractive layout. She has also taken on the artistic layout for Non-Event invitations for the last 6 years. “I’m by no means a graphic artist,” she says, “but I have fun dabbling in it and have learned how to be better at it. Former office manager, Jill Dominguez, taught me a lot and I really enjoy working with her.”
When asked why she volunteers for a time-consuming job, Pam says that she likes helping people and, since she no longer teaches music, the newsletter is a way to help people in the Parkinson’s community learn more about the disease and how to deal with it. “I’m a creative person and since YOPD has negatively impacted my ability to sing and perform well on stage, the newsletter has become an excellent creative outlet that reminds me a lot of my mosaic art,” Pam says. “It also gives me a positive focus and keeps me engaged with people, like when I was working.”
Pam and her husband, Matt, live on Lake Lewisville where Pam enjoys gardening, birding, and other outdoor activities. They have two Wheaten Terriers that Pam trains, and they love to travel the world. Both daughters are grown. The oldest is married and lives nearby; the youngest is a Music Therapist practicing in the Fort Worth area.
“Aloha! Welcome to Hawaii” Non-Event Fundraiser
PAGE 5 • DAPS • MAY 2020
Mirages of the Mindby Kim Berry, Nurse Practitioner
Memorials • Honors • DonationsMarch 2020
In memory of Ottilla (Tilly) BorgesFrom: Tina & Bob Blessing David & Maria Borges In memory of Ronald RockFrom: Bob & Carol Eichelberger
Donation to DAPSFrom: J’Anna Barrington Sally Drayer George Knight Steve Kottler Kenneth Milligan
Janet Scott Johnnie Thompson Ryan Wagner Belmont Village Senior Living Benevity Causes CC Young Senior Living DAPS @ Hunters Glen (Plano) DAPS @ Lake Pointe Church at White Rock (Dallas) DAPS @ Trinity (Duncanville) DAPS McKinney Nordstrom Pepsico Employee Giving Program The Kroger Company
Sometimes the unknown is more frightening than what we know. When it comes to PD, we are learning more every day through research trials and studies within the movement disorder field. Most people are very familiar with the common symptoms associated with PD, like tremors, slowness, and difficulty with gait and balance. Some of the less-discussed symptoms of PD are often avoided in conversations—sometimes because of negative associations or a fear of the unknown. One such symptom that often goes undiagnosed and untreated is Parkinson’s Disease Psychosis (PDP). Estimates vary, likely due to underreporting, but symptoms of psychosis affect approximately 40–50% of individuals with PD. PDP is more common in individuals with a longer duration of the disease, cognitive impairment or dementia, and older age.
The word “psychosis” may conjure fear in many, but with knowledge and information these possible PD symptoms can be addressed and managed. These symptoms require ample discussion as they can impact the quality of life of individuals experiencing them as well as that of their caregivers. Symptoms can include mild confusion (disoriented thinking), misinterpreting things that are there (illusions), seeing and hearing things that aren’t there (hallucinations), or believing things that are not true (delusions).
Visual hallucinations are the most common type of psychosis symptom experienced by persons with PD. These symptoms can be mild and non-threatening;
however, they can also be severe and frightening.
Currently, there is not a clear understanding of the exact cause of PD psychosis, although certain brain chemicals and receptors (e.g. dopamine and serotonin) are believed to play a role. In general, it is thought that medication, delirium, and dementia are the three main contributors to the development of symptoms of psychosis. Many PD medications, at high doses, can potentially cause psychosis as a side effect. If medications are suspected to be the cause of psychosis, they must be appropriately adjusted by a healthcare provider. Delirium is a reversible change in a person’s cognitive status and can have several causes including fever, infections, dehydration, vitamin deficiencies, and sensory changes such as hearing loss and vision impairment. If delirium is thought to be the cause of psychosis, then the root cause of delirium should be addressed in order to reverse the psychosis symptoms. Dementia or memory and cognitive decline can occur as PD progresses and can lead to hallucinations and delusions. Treatment of psychosis requires a detailed evaluation to figure out its most probable cause, then to initiate treatment accordingly.
It is important to know that not everyone with Parkinson’s disease will develop PDP. However, it is essential to speak with your neurologist if there is any suspicion of psychosis (hallucinations, delusions, illusions, etc.). Fortunately, there are treatment options available for the management of PDP. These options can reduce both the frequency and severity of symptoms and, resultantly, improve the overall quality of life of individuals experiencing PD psychosis.
PAGE 6 • DAPS • MAY 2020
Anonymous Sarah Atwood Laura Boyle Carol Brandle Shirley Brouillette Edna Buentipo Scott Buzzell John & Wanda Call Malinda Cannon Larry Christensen Mitzi Clark Christian Clausen Bruce & Janiece Crozier Kim Dague John Davis Richard & Rita Doelling Betty Dorsey Raul & Jill Dominguez Katie & Manford Edgington Bentley & Iris Foster William & Karen George Barbara Glass
Barry & Pat Goukler Steven Holman Margery Hunter Michael Jones Geri & Harold Kellogg Jo & Bert Klein Leon & Marilyn Levin Scott MacPherson John Marty Glen & Frances Main Chip & Ginny Melara Pam & Matt Michel Donna Miles Mike Miles Carlie Moe Bobbi & John Myers Rod Myers Susan Norvell Tom & Cecilia Pajda Sandi Pautler Leisha Phipps Fred Ransdell
John Rapier Greg Rector Marguerite Riccardi David & Beverly Rivers Salvatore & Marcie Salamone Adana & Samuel Sanford Charles Schlinke Robyn & Bud Seitzler Shelby Smith Jim Struble Joyce Susman Dr. Chad Swank Linda & Mike Swanson Randy Visser John & Ruth Walker Carole Ann Watson Michele White Diana Winkelmann Sharon & Greg Wood
GEMs are donors who Give Every Month.
Our GEMs are very valuable!
Sign up on
the DAPS website:
http://bit.ly/DAPSGEM
Upcoming Events
Rescheduled:Join us in September!
Friday, September 18, 2020
7:30am – 4:30pm
Lovers Lane United Methodist Church
9200 Inwood Rd, Dallas TX 75220
www.educaredallas.com/cfs
MARK YOUR CALENDARSaturday, September 26, 2020
9 a.m. to 3:30 p.m. Lover’s Lane United Methodist Church
9200 Inwood Rd., Dallas, TX 75220
Keep an eye here for more info:
bit.ly/2020KMS-info
PAGE 7 • DAPS • MAY 2020
Virtual Classes & Webinars
Are you Zooming with DAPS?Join us for a virtual class!DAPS is working hard to continue providing the classes that we know you miss and love. Join us for recorded EXERCISE class any time at https://bit.ly/DAPSYouTubeChannel.
Below are the LIVE CLASSES DAPS is offering each week via Zoom.You can join our live exercise, speech, and support groups by contacting us at [email protected] for login details.
If you are interested in joining a DAPS class virtually for the first time, please be aware that response times to receive login information are generally during office hours: Monday – Thursday, 9:00 am–2:00 pm.
May Webinars from Other PD Organizations
Every major Parkinson’s organization has prerecorded webinars available.
Tune in to this month’s live webinar from Davis Phinney Foundation for Parkinson’s:
Sleep and Living Well with Parkinson’s with Dr. Ronald Postuma – Wednesday, May 13,12 pm
https://www.davisphinneyfoundation.org/webinar-sleep/
MONDAYS
9:45 am EXERCISE with Angie 10:45 am SUPPORT GROUP with Carol 1:00 pm SPEECH with Danielle
TUESDAYS
9:00 am SPEECH with Pat 10:00 am EXERCISE with Diana 11:30 am SPEECH with Lynn
WEDNESDAYS
9:45 am EXERCISE with Barb 11:00 am SPEECH with Lynn 12:30 pm EXERCISE with Tammy
THURSDAYS
10:00 am EXERCISE with Amanda 2:00 pm SPEECH with Pat
FRIDAYS
9:45 am EXERCISE with Barb 12:30 pm EXERCISE with Tammy
SATURDAYS
1:00 pm EXERCISE with Tammy
SUNDAYS
11:00 am EXERCISE with Diana 2:30 pm EXERCISE with Tammy
PAGE 8 • DAPS • MAY 2020
MAY EDUCATIONAL SERIES JUNE EDUCATIONAL SERIESMonday, May 11, 2020, 1:00 p.M.
Please visit bit.ly/Dal-052020-info for information on joining the webinar.
Speaker: Dr. Michael Soileau
Topic: Take ON Your OFF Periods: Recognizing OFF Periods in Parkinson’s Disease
Sponsored by Acorda Therapeutics
ALL PROGRAMS ARE CURRENTLY ONLINE ONLY Please check the DAPS website at daps.us for schedule changes.
For assistance, contact the DAPS officeMonday–Thursday, 9am–2pm at 972-620-7600 or [email protected]
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.
facebook.com/daps.us instagram.com/daps.us
@dapsinfodaps.us
Connect with DAPS!
Tuesday, May 19, 2020, 1:00 p.M.Please visit bit.ly/Mck-052020-info for information on joining the webinar.
Speaker: Dr. Aanchal Taneja
Topic: Taking ON Parkinson’s
Sponsored by Amneal Pharmaceuticals
Tuesday, June 16, 2020, TiMe TBaSpeaker: Nancy Jensen, LCSWCheck the calendar at daps.us for more details as they become available.
UPCOMINGMEETINGS
This month’s newsletter is sponsored by:
ACADIA’s mission is to be the leading pharmaceutical company dedicated to the advancement of innovative medicines that improve the lives of patients with central nervous system disorders.
To read more about ACADIA and the products they develop, visit: www.acadia-pharm.com