September is OT Awareness Month

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September is OT Awareness Month

Post by admin »

The following is the email that has been sent to Forum Members:

Dear Friend of OT—

September is the very first Orthostatic Tremor (OT) Awareness Month and you can help get the word out! The more everyone learns about OT, the better: for those who have it, for the clinicians who treat it and for those of us who are raising money for OT research to cure it.

Please send the attached news release to your local newspapers during the first week in September. You can cut, paste and send it electronically at your newspaper’s website under SUBMIT NEWS or you can mail a hard copy via the postal service to the editor. It’s that simple.

If each of us sends the release to at least two of our local papers, chances are that hundreds of thousands, and maybe millions, of people will begin to know about OT.

Mark your calendars now for March 10-11, 2016 when Dr. Joseph Jankovic, Professor of Neurology and Director, Parkinson’s Disease Center and Movement Disorders Clinic at the Department of Neurology, Baylor College of Medicine in Houston, will make a presentation to members of the OT Community who will be meeting in Houston. More information about hotels and sightseeing to follow, this fall, on The OT Forum at Orthostatictremor.org

We plan to arrive in Houston on March 9, hear a presentation by Dr. Jankovic on March 10, offer OT meetings for participants and their companions on March 11, along with sightseeing suggestions and group dinners on March 10 and 11, returning home on March 12th.

Anyone who has OT (along with a companion) is welcome to attend. It’s a wonderful opportunity to share information, personal history, coping skills and ideas with others who have the same unique challenges, questions and stories about this rare disorder.
Together, we can stand up to OT!

Thank you,

Gloria, Peggy, Helen, Maggie, Pat, Betty, Myrna, Lori, Patty, Mike, Stella, Rosemary, Rita, Cindy, Morris, Beth, Chris, Harriet, Lanita, Lydia, Mary, Rich, Sandy, Wini, Janet, Sheila and Mary Ann and all of the growing OT Family.
PS: If you prefer not to receive emails about fundraising and OT research in the future, please reply and simply state "OT-- no email" in the subject line of the email

Cut and paste the release below and send to your local newspapers

_______________________________________

FOR IMMEDIATE RELEASE: September 2015
CONTACT: Pat Whitney pat@orthostatictremor.org

Orthostatic Tremor: Imagine Being Able to Walk, But Not Stand

September is Orthostatic Tremor Awareness Month. Never heard of Orthostatic Tremor (OT)? Most physicians haven’t, let alone the general public. But for the small number of adults who develop OT around midlife, it’s very real, very life limiting and it’s very, very hard to explain to others.

With OT, one can walk quite well at a brisk pace, but slow down or stand still, and your legs no longer hold you up! Orthostatic Tremor means weight-bearing tremor, a high-speed muscular tremor that begins the minute one slows down or stands still and makes the legs weak and unsteady. First identified in 1970 by Dr. Elio Lugaresi and defined as Orthostatic Tremor by Dr. Kenneth Heilman (USA) in 1984, it’s been compared to riding a bicycle: you’re fine when you’re riding along, wobbly when you slow down and unable to stand upright on two wheels.

When other people see someone with OT who is walking, they have a hard time understanding why that person can’t just stand and chat with them. But try to explain, when no one’s ever heard of OT, and it doesn’t compute. For people with OT, receptions, buffets, receiving lines, or any lines at all are mostly not manageable. People with OT can also have difficulty carrying heavy items and extending their arms as in changing a lightbulb or reaching to fix something or even holding a digital camera. Standing chores must be done, sitting, as in making a bed while sitting on it.

An obvious suggestion might be to use a wheelchair, but who would use a wheelchair when they can walk? One instance where wheelchairs do work is at museums, especially if one has a companion to push it. And most museums have wheelchairs to use.

Orthostatic Tremor has been confused with restless leg syndrome and it’s been called shaky legs syndrome. But mostly it’s been misdiagnosed or not diagnosed at all.

In 2000, Gloria Nelson MacWright who was newly diagnosed, created a website, Orthostatictremor.org, to see if there was anyone else out there. She began hearing from others, worldwide, and over 1,100 people have now registered on the site.

During the last 15 years, thanks to the website, a core group of people with OT from around the world and all over the US and Canada, have met biennially to exchange information and hear presentations on OT at the Mayo Clinic in Rochester, MN, at the University of Nebraska Medical Center in Omaha and at a medical conference in Sydney, Australia. They have raised thousands of dollars for OT research, awarded through the National Organization for Rare Disorders (NORD) OT Research in Connecticut and the University of Nebraska Medical Center Foundation, OT Research Fund.

Dr. Diego Torres-Russotto, a neurologist with the University of Nebraska Medical Center in Omaha, is the lead investigator in a series of clinical studies he has been conducting since 2012 to unravel the origins of this little known and greatly misunderstood mobility disorder. More than 50 people are currently participating in Dr. Torres-Russotto’s project, the largest OT study ever conducted. Dr. Torres-Russotto was featured in one of three presentations on Orthostatic Tremor at the 19th International Congress of Parkinson’s Disease and Movement Disorders, June 14-18 this year in San Diego, CA.

Neurologists Cécile Gallea, Sabine Meunier, and Marie Vidailhet recently completed a study at Movement Disorders Clinic, Pitié-Salpêtrié Hospital in Paris, funded in part by a NORD grant. Nine patients with OT received artificial stimulation of the cerebellum and while all nine showed a significant decrease in the amplitude of the tremor as measured by electrodes, the patients, themselves, did not see an improvement, suggesting that the stimulation was effective, but not enough to be beneficial.

In January of this year, NORD awarded a $33,000 grant for the study of Primary Orthostatic Tremor, made possible by donations from the OT patient community and a grant of $10,000 from Lundbeck, Inc., and its Raise Your Hand to Fight Rare Diseases campaign, to Aparna Wagle Shukla, MD, University of Florida, for rTMS Therapy for Primary Orthostatic Tremor: A Novel Treatment Approach.

Rare disorders such as Orthostatic Tremor do not attract the kind of research funding that produces treatments and medicines that can be mass-marketed. But people with OT have found solidarity through their website, meetings and clinical studies, raising awareness in their personal networks, and raising support for smaller research projects that may someday unlock where in the brain OT originates and how to treat it. In the meantime, they continue to walk briskly and to always be on the lookout for a place to sit!

For more information, go to Orthostatictremor.org.
admin
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Re: September is OT Awareness Month

Post by admin »

Image

to help build awareness this has been posted on the OT Facebook page....... and no, that's not me :)
admin
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Posts: 548
Joined: Fri Jan 16, 2004 5:25 pm

Re: September is OT Awareness Month

Post by admin »

Thank you to PatW for her work in compiling and writing the Press Release!
admin
Site Admin
Posts: 548
Joined: Fri Jan 16, 2004 5:25 pm

Re: September is OT Awareness Month

Post by admin »

A new page has been added to the website which includes OT awareness resources. Make a difference and become part of the cure for this rare and disabling disease. You are the key to creating awareness and research for Orthostatic Tremor.

OT Awareness Resources:
-Educational material
-Press release / sample letter to newspaper
-Social media graphics
-Links to information about research and donating

View OT Awareness Resources
Mary Gorski
Posts: 5
Joined: Mon Mar 05, 2012 7:54 pm
Location: Katy, TX USA

Re: September is OT Awareness Month

Post by Mary Gorski »

Great description of OT. Hope to see some of you in Houston, in March. :)
admin
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Re: September is OT Awareness Month

Post by admin »

OT Awareness Wristbands


Interested in an OT Awareness wristband? there are a few remaining. Read how to get one, free! -

During the meeting in Omaha last year we handed out wristbands which read "Stand up to OT". We have 20 OT awareness wristbands remaining. You now have chance to get one of these highly collectable and value items! (just kidding, but they are nice to have, or you can give it to a friend).

For the OT Awareness Month we will send out the remaining wristbands to the first people that respond. If you were not at the meeting, or attended but didn't receive one, send me an Email via the forum. Include your address. Unfortunately, I can only send these within the USA.

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Marie47
Posts: 3
Joined: Tue Oct 21, 2014 6:25 am
Location: FRANCE

Re: September is OT Awareness Month

Post by Marie47 »

Bonsoir,

Avez-vous la possibilité d'envoyer des bracelets en FRANCE ??
Etant OT, je serais évidemment intéressée pour en porter un. Je vous donne mes coordonnées :

Merci d'avance.
admin
Site Admin
Posts: 548
Joined: Fri Jan 16, 2004 5:25 pm

Re: September is OT Awareness Month

Post by admin »

Hi Marie

I've sent you a message.

best regards,
admin
Site Admin
Posts: 548
Joined: Fri Jan 16, 2004 5:25 pm

Re: September is OT Awareness Month

Post by admin »

Image
admin
Site Admin
Posts: 548
Joined: Fri Jan 16, 2004 5:25 pm

Re: September is OT Awareness Month

Post by admin »

The Katy News of Katy, Texas has posted the story : "Orthostatic Tremor - imagine being able to walk but not stand"

Link to article

If anyone sees the OT story/press release printed or online please post a link. Thank you.
admin
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Posts: 548
Joined: Fri Jan 16, 2004 5:25 pm

OT AWARENESS MONTH • INFO SERIES #1

Post by admin »

OT AWARENESS MONTH • INFO SERIES #1

The CBC documentary on Orthostatic Tremor - “Out of Step” by Erik White 12/2012

Listen to the CBC radio documentary on Orthostatic Tremor
admin
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Posts: 548
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OT AWARENESS MONTH • INFO SERIES #2

Post by admin »

OT AWARENESS MONTH • INFO SERIES #2

The OT tremor can be so fast and fine that it may not appear to be a tremor, so what do you look for? .... The HELICOPTER SIGN

This video and accompanying text by Vincent S. DeOrchis, MD, MS, Howard L. Geyer, MD, PhD and Steven Herskovitz, MD combines an EMG chart with the audio of the OT signature sign of the ”helicopter" sound.

Image<Click Image to watch

Link to full article on Neurology.org website

Neurology.org
Teaching Video NeuroImages: Orthostatic tremor - The helicopter sign
Neurology April 2, 2013 vol. 80 no. 14 e161
MikeS
Posts: 110
Joined: Wed Mar 19, 2008 2:51 pm
Location: Marbella Spain

Re: September is OT Awareness Month

Post by MikeS »

Hi all
Im pleased to say theat the Euro Weekly News ,the biggest English speaking newspaper in Spain has printed OT awareness article they claim to have half a million readers !!
Heres link to there online papper

Link to Euro Weekly News article on Orthostatic Tremor


Im also going to do a catch up in our How is everyone forum
Keep Smiling
Mike
:)

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admin
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Re: September is OT Awareness Month

Post by admin »

Hi Mike

That's terrific!

all the best,

Jeff
gloria
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Location: New Jersey, USA

Re: September is OT Awareness Month

Post by gloria »

Mike you are always there to help get the word out.... what a great job!!!!!!!!! Gloria
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