Dr. Norman Marcus Pain Institute presentation

Dr. Norman Marcus launched his eponymous Pain Institute in 1998. He is the pioneering author of two books: Freedom from Pain and End Back Pain Forever. A past president of the American Academy of Pain Medicine, Dr. Marcus is a member of five professional societies and has presented over 100 lectures about diagnosing and treating pain to audiences throughout the world.

In 1977, Dr. Marcus co-founded and directed the first pain center in NYC at Montefiore Hospital. He went on to establish and direct pain centers at Lenox Hill Hospital in NYC (1983-1998) and The Princess Margaret Hospital in Windsor, England (1997-2001). Currently he is both the Director of Muscle Pain Research and an Associate Professor of anesthesiology and psychiatry at the NYU School of Medicine.

Dr. Marcus is a media favorite having appeared on The Today Show, CBS This Morning, Good Morning America, Fox & Friends, and The Early Show.

April 20, 2016, Dr. Marcus gave a presentation to our group.

Download the presentation here.

The video had some issues however the 105 slides from the presentation cover pretty much everything he said.

Dr. Albina Tamalonis talk: “Less Is More: Meeting the challenge of living happily with EDS”

This is part 1, 1hr 34min long

Part 2, 10mins

Part 3, 7 mins

Monday, November 9, 2015 talk on coping strategies for EDS by Dr. Albina Tamalonis, a therapist with EDS.

Living with the psychological challenges from the many limitations of EDS can be daunting to the person who has EDS, and their family and friends. The pains, restrictions, injuries, disappointments and feelings of embarrassment are hard to manage. This presentation will help with coping strategies to eliminate these issues and feelings. The focus is on hope, what strengths you have and living your life to the fullest now.

Helping people adjust to physical challenges by making a change in their thinking that less can be more. Less weight, less possibilities, less complexity and less rushing can be freeing. With an Ericksonian approach to therapy and active guided meditation this workshop will illustrate how a person can come to terms with the chronic EDS illness and reframe pain, uncertainty and insomnia. The workshop will end with an active guided meditation set to music.

Educational Objectives
1. To learn the essence of reframing for chronic illness,.
2. To learn Erickson’s guiding life principle of focusing on what is left in ones life rather than what is lost with any chronic illnesses.

Albina M. Tamalonis, Psy.D, is a licensed clinical psychologist with a full time private practice in NYC for over 25 years. She has one Masters degree in psychological research, one Masters degree in school psychology, and a Doctorate in child and adult clinical psychology. She treats people from 12 years of age and up, with an assortment of disorders. Dr. Tamalonis specializes in brief approaches to psychotherapy, which uses: meditation, relaxation and other mental techniques that alter consciousness to more easily help people change their ways of thinking and behaving. She uses active guided meditation that upgrades meditation to trance therapy to help her patients with many mind/body problems such as pain, insomnia, preparation for surgeries and healing.

Dr. Tamalonis has taught internationally at various professional societies around the world, and nationally at the American Society of Clinical Hypnosis, and the Myasthenia Gravis Foundation, to name a few. Dr. Tamalonis current interest is helping people with EDS and other chronic physical disorders, repetitive injuries and aging. She has special insight in EDS because she has it herself. Dr. Tamalonis has appeared on radio, television and a movie. She produces active guided meditation CDs with original music by her husband, Thomas Tamalonis-Olofsson. For more information about Dr. Tamalonis you can go to TherapySolutionsForChange.com.
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EDS Documentary NY Premiere and Q&A with writer/lead 8/19/15

Issues_with_my_TissuesWednesday night we screened the NY premiere of Issues With My Tissues with Lara Bloom at the 92nd St. Y

Lara Bloom, the CEO of EDS International, brought her infectious enthusiasm to the meeting and answered questions about this truly inspirational film of trials and triumph. Shane Robinson, the Executive Director of EDNF also attended.

“The documentary follows Lara Bloom’s journey as she became the first person with EDS to walk the London Marathon and features interviews with medical professionals, families with EDS and individuals who have suffered from misdiagnosis.” – IMDB

Watch it here now! 48 minutes

Why Some Meds Don’t Work – April 23, 2015

Video for the presentation is at:
EDS-NYC YouScript Video Page

Ever feel one of these?
o anxiety
o ‘brain fog’
o dizziness,
o forgetfulness,
o headache,
o GI problems,
o seizure

Or have you ever said…
o “Certain medicines don’t work for me.”
o “I’m sensitive to many medications.”
o “I need a very low starting dose.”

Then come to our next meeting for the talk titled:
“Why some medications don’t work – or make you feel worse – and what you can do about it.”

Genetic differences in how bodies metabolize drugs can cause all these problems. With genetic testing we can identify bad combinations of specific medicines and certain genes, find alternative meds, and avoid dangerous side effects.

We are extremely fortunate to have Dan Doherty, of Genelex, come speak about the YouScript Personalized Prescribing System, the only medication management system that assesses the cumulative effect of a patient’s genetics and entire drug regimen to determine adverse drug event risk and recommend safer alternatives.

EDSers tend to take a number of meds which tends to increase the risk of side effects. Learn what’s going on and, more importantly, what to do about it.

Dan, has been with Genelex since 2006 helping thousands of clinicians improve patient safety with personalized prescribing. He’s had a unique opportunity to speak regularly with patients and heard the impact CYP450 testing has had on the quality of their lives. He previously worked onsite 24/5 managing the daily routine for residents in a non-profit group home, seeing both the positive and negative impacts of psychiatric medication management on a daily basis. He’s previously spoken at The Children’s Coalition Against Pediatric Pain, The Mastocytosis Society and the Chiari & Syringomyelia Foundation.

Company overview:
Genelex’s high complexity, CLIA laboratory has more than 25 years of DNA testing experience and in 2000 became one of the first laboratories in the US to provide personalized prescribing testing for pharmacogenetics. When used while prescribing, YouScript can help providers prevent adverse drug events, improve treatment and reduce healthcare costs.

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Video for the presentation is at:
YouScript Video Page

 

 

Slides and Video for Pain Management Meeting

Noted pain management researcher Dr. Barbara Siminovich-Blok addressed out group, and here are the slides and video of her presentation.

Slides: EDS integrative therapies presentation PDF

Video:

Dr. Barbara Simonovich Block

If all else fails here’s the
Video download link.

EDS-NYC Support Group Meeting September 30

Tuesday, September 30, at 7:00-9:00 EDS-NYC-NYC will have a support group meeting at the 92nd Street Y, 1395 Lexington Avenue, (between 91st and 92nd)

Michael Bihovsky, a chronic illness advocate and activist best known for his integration of health awareness and musical theater will serve as a guest facilitator. He is the co-founder of the Philadelphia POTS support group, and writes for Stanford Medical Journal’s SCOPE project, including the article “Live Because: Living a fuller life with chronic illness.”
www.michaelbihovsky.com

All are welcome, especially those who are not yet diagnosed but have questions. We will also conduct other normal meeting business.

Please RSVP via email as estimating turnout helps us prepare.
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Directions:
The meeting is at the 92nd Street Y. 1395 Lexington is between 91st and 92nd streets. For transportation information, the number 6 local subway stops at 96th St. and the 4 & 5 line stops at 86th St.

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Mark your calendar
This event is another in our continuing effort to provide useful information and events to support the EDS community in NYC and improve the quality of life for our members. I hope you can join us Tuesday, September 30, at 7:00-9:00

www.eds-nyc.com

Pain Management speaker May 7

Wednesday, May 7, 2014, at 7PM, noted pain management researcher Dr. Barbara Siminovich-Blok will join us to discuss effective pain management strategies. (Rescheduled from April 9)
DrSimonovichBlok
Dr. Siminovich-Blok is a Naturopathic Doctor and a Licensed Acupuncturist for the States of CT and NY. She specializes in pain management, sports, integrative medicine and nutrition. She is a researcher and a clinician in Integrative Medicine at NYU Langone Medical center, Rusk rehabilitation/Hospital of Joint diseases. Her research is oriented to pain management and rehabilitation. Dr Siminovich-Blok has experience practicing integrative medicine at inpatient and outpatient settings and has a specialized private practice in midtown (Equilibrium LLC).

Having been selected for the only hospital based residence for Naturopathic Physicians in Yale/Griffin Prevention Research center, Dr. Barbara Siminovich-Blok received her degree in Naturopathic Medicine and was the recipient of the Douglas Lab Clinical Excellence Award. She possesses two Master degrees in Biochemistry and in Biotechnology. Her Bachelor Degree is in Chemical Engineering. In 2010, she graduated Summa Cum Laude with an MS in Acupuncture from the University Of Bridgeport (UB) Acupuncture Institute.

All are welcome, especially those who are not yet diagnosed but have questions. We will also conduct other normal meeting business.

Directions:
The meeting is at the 92nd Street Y. 1395 Lexington is between 91st and 92nd streets. For transportation information, the number 6 local subway stops at 96th St. and the 4 & 5 line stops at 86th St.

Mark your calendar
This event is another in our continuing effort to provide useful information and events to support the EDS community in NYC and improve the quality of life for our members. I hope you can join us Wednesday, May 7 at 7PM at the 92nd St. Y (on Lex).

Shane Robinson, Exec Dir EDNF 12/12/13

The download link works.
Download link:
Shane Robinson video


Shane Robinson video

EDS-NYC Meeting with EDNF Exec Director Thur Dec 12

Thursday, December 12, at 7:00PM, Shane Robinson, Executive Director of the Ehlers Danlos National Foundation, will join us for our December meeting. He brings news of:

  • o The EDNF Center for Clinical Care and Research at GBMC,
  • o National Convention highlights,
  • o Current research efforts, and
  • o Plans for the future

This promises to be one of the most informative meetings concerning a broad range of policy and activities on a national scale. Please join us to learn about the dramatic efforts currently taking place around the country.

All are welcome, especially those who are not yet diagnosed but have questions. We will also conduct other normal meeting business.

Directions:
The meeting is at the 92nd Street Y. 1395 Lexington is between 91st and 92nd streets. For transportation information, the number 6 local subway stops at 96th St. and the 4 & 5 line stops at 86th St.

Mark your calendar
This event is another in our continuing effort to provide useful information and events to support the EDS community in NYC and improve the quality of life for our members. I hope you can join us Thursday, December 12th, 7PM at the 92nd St. Y.

eds-nyc.com