Movement Disorders Center » dystonia

Introducing the first Dystonia Educational Day Center at the UFMDC

Jennifer Reichwage — Tue, 20 Oct 2009 18:22:44 +0000

The Tyler’s Hope Center for Comprehensive Dystonia Care is pleased to introduce the first Dystonia Educational Day Center which will be held on Friday, November 13th. The program will run from 8:30am – 3:00pm and will include invited guest speakers from our interdisciplinary team including psychiatry, physical therapy, communication sciences, occupational therapy and neurology. The program is open to dystonia patients and a caregiver.

For more information, please contact Jennifer Reichwage at jenniferr@neurology.ufl.edu.

Tyler’s Hope Comprehensive Care Center Website Launch

Jennifer Reichwage — Wed, 09 Sep 2009 15:12:48 +0000

Together with Tyler’s Hope for a Dystonia Cure, the UFMDC invites you to view our new dystonia website dedicated to our Comprehensive Dystonia Care Center. Our team includes specialized physicians, a physician assistant, nurses, physical therapists, speech therapists, psychologists, researchers as well as other interdisciplinary specialists.

The new pages detail what is available at our Dystonia Center including information on becoming a patient, treatment options and details about our Dystonia team.

Check out the site here…

Dystonia Awareness Day on Twitter

jacobsoc — Tue, 04 Aug 2009 17:18:59 +0000

The Dystonia Medical Research Foundation (DMRF) has a Twitter account and they put out the call for dystonia sufferers and anyone else to tweet about dystonia on one particular day, July 22nd. Twitter is a messaging system limited to 140 characters that a lot of individuals are using, mostly as a “microblog” and many companies and organizations are using for public relations.

We decided that participating in this event was important especially since a significant portion of our patients have different types of dystonia. Also, the general public and medical community needs to be more informed about it.

Through our account @UFMDC, we posted about 40 messages tagged with #dystonia. Together with the other tweeters #dystonia reached the number 38 position of most tweeted terms (or “trending topics”) for the whole day and it was #26 at around 4pm eastern. Dystonia sufferers posted their experiences while all of us posted educational links or news stories on dystonia. Many people learned about dystonia that day and dystonia patients made connections with each other.

The only organizations to participate were the DMRF, Tyler’s Hope and the UFMDC. We look forward to trying this again at some point and hopefully we can inform even more people about this disorder.

Dystonia and DBS article from Palm Beach Post

jacobsoc — Tue, 07 Jul 2009 16:16:47 +0000

This is an older article from the Palm Beach Post in 2007 about one of our patients.

One mother’s walking miracle – By Rachel Sauer – Sunday, May 13, 2007

Excerpt:

“Please,” Viviana remembers pleading. “Please. We can’t do this anymore.”

Sharma called Dr. Michael Okun, a neurologist at Shands Hospital at the University of Florida in Gainesville, medical director of the National Parkinson Foundation and valedictorian of the Palm Beach Lakes High School class of 1989.

He agreed to see Chris.

“In most cases, the dystonia presents as the turning of a foot, say, and progresses very slowly over many years,” Okun explains. “But for unexplainable reasons, we have patients like Christopher who progress very fast.”

Tyler’s Hope and UFMDC featured on CNN

jacobsoc — Mon, 22 Jun 2009 17:51:56 +0000