These types of meetings provide a wonderful opportunity to get to know each other better, share information, learn of resources, problem-solve and provide and receive support in a comfortable and safe environment. Your friends, family and others are invited too!Participation in any discussion is always completely voluntary. In addition, if you choose to not show your image, that is perfectly fine.
Please contact Martha HERE for the ZOOM LOG-IN information. We hope that you can join us! You can participate via PC, Mac, tablet, cell phone or home phone or a combination of devices. You do not need to show your image or participate any any discussion. We respect your privacy and this is a safe space where we can learn from one another and offer and receive support. RSVP's are appreciated! Click HERE to RSVP to Martha Murphy, Leader/Founder.
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5/6/23 - TOM SEAMAN joined us virtually for an excellent presentation on MANAGING THE DAILY CHALLENGES OF DYSTONIA and was kind enough to allow us to record his presentation. Tom has Cervical Dystonia, is a life coach, author and patient advocate among other things. Here is a link to his presentation: https://youtu.be/dohdd8NLH7Q Here is another link for treatments https://youtu.be/PzAefKeQiKQ To learn more about Tom, you can visit his website at www.tomseaman.com
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3/4/23 - PATRICK HOGAN, D.O., Director of Puget Sound Neurology, Tacoma, Washington spoke at our virtual zoom meeting. His topic was: Development of the Mindset for Easing the Burden of Dystonia & Overview of the Puget Sound Dystonia Symposium on Coping with Dystonia, Depression & Anxiety. Dr. Hogan allowed us to record his presentation and here is a link: https://youtu.be/OBmT2Tz8ePU Dr. Hogan also provided us with his slides and you can view them at http://www.dystoniaofsandiego.com//documents/dr_hogan.pptx Click HERE for his website.
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Cassandra Vieten, Ph.D., Clinical Psychologist, Pacific Pearl La Jolla, Associate Research Scientist, University of California, San Diego provided a very insightful and fascinating presentation on “Mindfulness Practices for Health & Well-Being.” If you weren’t able to join us, there is good news because we recorded Dr. Vieten’s presentation (not the Q/A afterwards) and she also provided me with her slides. I highly recommend that you check this out because Mindfulness is something that can be beneficial to all of us. She also mentioned that UCSD offers programs/classes on mindfulness that those of you in San Diego may want to check out.
Here is a link to Dr. Vieten’s recorded presentation:
https://youtu.be/V36qZCg2YOQ
Here is a link to Dr. Vieten’s PowerPoint slides:
http://www.dystoniaofsandiego.com//documents/Vieten_Mindfulness.pdf
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Pablo Corona, Outreach/Community Education Coordinator from the Health Insurance Counseling & Advocacy Program (HICAP) Elder Law & Advocacy Program. http://seniorlaw-sd.org/programs/ spoke on 8/27/22 on Medicare, etc. and generously shared his slides and a brochure with us.
Slides: Click HERE
Brochure: Click HERE
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Dr. David Swope from UC Irvine spoke to our group on 3/19/22 and gave an UPDATE ON DYSTONIA. We were able to record his presentation and you can view it HERE
And we also have a copy of Dr. Swope's PowerPoint slides which you can view HERE
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Dr. Neal Hermanowicz gave a very insightful presentation to our group on 1/8/22 on "Dystonia and Trauma: What Can These Cases Tell Us About Dystonia in General?" Here is a link to his presentation: https://youtu.be/BwrkiC64LMg
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Arpi Minassian, Ph.D., Clinical Professor of Psychiatry, UCSD gave a very informative presentation to our group on 11/6/21 discussing "Taking Care of Your Emotional Health in Peri-Pandemic Times." We recorded the virtual meeting and to view her presentation, click HERE She also generously provided us with her slides and to view them click HERE
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ROSE THOMAS, licensed acupuncturist, herbalist & nutritional counselor gave an excellent presentation on STRESS-LESS at our virtual meeting on 4/24/21. She discussed a brief description of the stress response and how it affects
our physiology long and short-term, mindful strategies, herbal, dietary support and
acupressure/tapping to manage stress. We recorded her presentation and it can now be viewed at https://youtu.be/KPKcEs1WXbI Rose also provided a handout which you can be viewed HERE
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PHILIP STARR, M.D., Professor of Neurological Surgery & Director of Functional Neurosurgery at UC San Francisco provided a very fascinating and informative virtual presentation on "Brain Sensing and Adaptive Deep Brain Stimulation: Potential Application for Dystonia on 3/3/2021 and he was kind enough to allow us to record it. To view his presentation click HERE
Also, UCSF is recruiting for an ADAPTIVE DEEP BRAIN STIMULATION STUDY and for a brochure click HERE To reach JULIA SUN, the study coordinator, call 415-514-8285.
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JOAQUIN ANGUERA, Ph.D. provided a very entertaining and insightful presentation on "How to Age Well" at our virtual zoom meeting on 11/14/2020. Here is a link to his presentation: http://www.dystoniaofsandiego.com//media/joaquin_anguera.mp4 Enjoy!
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MINDY BIXBY, D.O. from Scripps Health provided an excellent presentation on 10/20/2020 on Dystonia - A Comprehensive Approach to Care & Treatment. She was kind enough to allow us to share her slides and you can view them now at:
http://www.dystoniaofsandiego.com/documents/Bixby_Dr_Mindy_10_20_20.pdf
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MARY HUDSON-McKINNEY, PT, MS, DPT, NCS was our guest presenter at our first-ever zoom support group meeting on 5/30/2020. She discussed “Healthy Coping Strategies for Managing Stress during the COVID-19 Shelter-in-Place Orders: Exercise, Sleep, Eating Healthy, and Stress Relieving Activities DO Help!” It was a very informative presentation with lots of valuable information. Subsequently, Mary allowed us to record her again (this time with no attendees) and you can view her excellent presentation HERE You can also view her PowerPoint slides separately HERE
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DMRF Webinar: DYSTONIA & COVID-19 VIRUS can be viewed HERE
Michelle Sexton, N.D. spoke at our January 25th meeting and provided a very informative and interesting presentation on "Integrative and Naturopathic Medicine for Wellness, Quality of Life and Pain Management." She was kind enough to send me her PowerPoint slides so that I can share them as well as information on Dispensaries. To view her PowerPoint slides, click HERE To see the handout on Dispensaries, click HERE
Dr. Mark Wallace, Professor of Clinical Anesthesiology and the Chair, Division of Pain Medicine in the Department of Anesthesiology, UCSD School of Medicine provided an excellent and insightful presentation on "THE SCIENCE, MEDICINE & POLITICS OF MEDICAL CANNABIS TO TREAT CHRONIC PAIN" at our support group meeting on 11/2/19. We video-recorded his presentation and you can view it at https://youtu.be/bvAUgPo2hSA If you would like a DVD of the presentation, please contact Martha HERE for instructions. We do request a $10 donation to help cover the costs of materials and postage.
The DMRF's webinar on CANNABIS is now available online through YouTube. Click HERE to view.
In case you missed the outstanding presentation by David Peterson and Jeanne Vu on ADVANCES IN MEASURING MOTOR SYMPTOMS OF DYSTONIA at our meeting on 9/21/19, here are 2 pdf's that David shared: Lay Abstract on Cervical Dystonia http://www.dystoniaofsandiego.com//documents/dave_peterson_layabs.pdf
and a chapter from the book When Blue Turns to Gray: The Enigma of Musician’s Dystoniahttp://www.dystoniaofsandiego.com//documents/peterson_and_altenmuller_2018_book_ch_online.pdf
For the latest news and information including actress Selma Blair going public with living with MS and Spasmodic Dysphonia please click here to go to our announcements page. Both UCI and USC are enrolling Cervical Dystonia patients for a Revance study using a new botulinum toxin Type A. Also ASPEN is conducting a clinical trial for a new botulinum toxin DAXI. See the Research Studies page for all the information or click here. To view Dr. Fatta Nahab's PowerPoint presentation from our meeting on 4/29/17, please click HERE
Thanks to everyone who participated in and supported our first-ever DYSTONIA DAY AT THE SAN DIEGO ZOO on Sat., 11/3/18! We raised $20,608.50!!!!
To view Dr. Steven Hickman's excellent presentation to our group from 9/15/18 on MINDFULNESS, SELF-COMPASSION & YOUR OWN WELL-BEING click HERE He also provided a 16-page handout and, if you would like a copy e-mailed to you, please contact Martha HERE And if you would like to purchase a DVD of his presentation for $10, please e-mail Martha HERE
ARTICLE ON OUR SUPPORT GROUP & OUR 30 YEAR ANNIVERSARY IN THE SPRING 2017 ISSUE OF THE DYSTONIA DIALOGUE, PAGES 14-15.
https://www.dystonia-foundation.org/images/uploads/DMRF_DD_Spring_2017.pdf
If you shop on AmazonSmile, you can choose the DMRF as your charity and they will receive .5% of your purchases. To find out more, visit https://smile.amazon.com/
$5-CURE-FOR-DYSTONIA CHALLENGE. Please consider participating in this important campaign to raise funds for dystonia research that was created by Jason Dunn (who has generalized dystonia) and his friend Mike Delise. All donations will be directed by the DMRF to dystonia research. Learn more and watch powerful videos by going to www.5dollarcure.com
**IF YOU WOULD LIKE TO ORDER A DVD OF DR. SHARONA BEN-HAIM'S EXCELLENT PRESENTATION ON DEEP BRAIN STIMULATION SURGERY FROM 9/16/17, PLEASE CLICK HERE FOR MORE INFORMATION.
**IF YOU WOULD LIKE TO VIEW DR. DAVID PETERSON'S SLIDE PRESENTATION FROM SAT., 1/21/17 ON DECIPHERING DYSTONIA & THE LATEST IN RESEARCH, CLICK HERE
**DVD's OF DR. STEVEN HICKMAN'S EXCELLENT PRESENTATION ON MINDFULNESS ARE AVAILABLE FOR $10. PLEASE CLICK HERE FOR MORE INFORMATION. YOU CAN ALSO NOW VIEW HIS ENTIRE PRESENTATION ONLINE BY CLICKING HERE
**DVD's OF DAVID WEIL'S INFORMATIONAL PRESENTATION FROM 9/17/16 ON HEALTH INSURANCE, MEDICARE, MEDI-CAL, SUPPLEMENTAL PLANS, ETC. ARE AVAILABLE FOR $10. PLEASE CLICK HERE FOR MORE INFORMATION. YOU CAN ALSO VIEW HIS SLIDE PRESENTATION IN PDF FORM BY CLICKING HERE
***LISTEN TO THE INTERVIEW THAT BILLY McLAUGHLIN & MARTHA DID WITH DREW SCHLOSBERG FOR HIS UT COMMUNITY SPOTLIGHT SHOW ON 9/16/16 BY CLICKING HERE
OUR BENEFIT CONCERT WITH GRAMMY AWARD-WINNING RECORDING ARTIST JUICE NEWTON ON 10/1/15 WAS A SUCCESS! OUR PROCEEDS TOTAL $9,948.00! THESE FUNDS HAVE BEEN EQUALLY DIVIDED BETWEEN THE DMRF & THE NSDA. THANKS TO EVERYONE WHO ATTENDED THE SHOW OR WHO MADE A DONATION AND THANKS TO JUICE NEWTON, HER BAND, PAUL FOWLER & MARTINI'S ABOVE FOURTH! WE HAVE RAISED A GRAND TOTAL OF $44,745.94 FROM THE 4 BENEFITS CONCERTS WE HAVE HELD IN 2006, 2009, 2012 AND 2015!!!
For information, handouts and special offers shared by Cynthia Clark, Clinically Certified Hypnotherapist, Reiki Master & Essential Oils Educator at our meeting on 10/24/15 please click HERE If you would like to order a DVD of her presentation for $10, please click HERE
Check out the article on Medical Uses for Botulinum Toxin in A Woman's Health magazine that Martha was interviewed for at http://awomanshealth.com/beyond-botox/
WE VIDEO-RECORDED 6 RECENT MEETINGS. 1) CYNTHIA CLARK ON HYPNOTHERAPY, REIKI & ESSENTIAL OILS, 2) ROSE THOMAS ON ACUPUNCTURE/PRESSURE POINTS/FOOD/NUTRIENTS; 3) BRENT CESARE, DPT ON AYURVEDA, ENERGY & INTEGRATIVE MEDICINE; 4) JENNIFER LOGAN, YOGA THERAPIST/MEDITATION SPECIALIST; 5) DR. DAVID BARBA, NEUROSURGEON DISCUSSING SURGERIES AND 6) DR. HUSSEIN ABDULHADI, PAIN MANAGEMENT SPECIALIST, DISCUSSING METHODS FOR TREATING PAIN. IF YOU ARE INTERESTED IN PURCHASING A DVD OF ANY OF THESE PRESENTATIONS, WE ASK FOR $10 PER DVD TO COVER OUR COSTS. PLEASE CLICK HERE TO CONTACT US FOR MORE INFORMATION.
