focal dystonia

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focal dystonia
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Community Voices

Lately the stress in my life has been messing with my language abilities, more than usual. Mostly expressive, but of course, since I have developmental receptive language difficulties as well, that's affected too. It's reminded me (over and over again) that the basic, underlying , fundamental difficulties that have been with me all my life really haven't changed, even though I've got oodles more compensatory skills than I used to. Many of which I've been losing to various degrees, for varying lengths of time.

I really don't have anyone in my life anymore who understands what it's like to struggle with language, to struggle with communication, to struggle even with the concepts that underlie these things. Much less the physical difficulties that present themselves periodically as well. (Movement disorder type things, which may or may not be partially diagnosed). #Apraxia #ApraxiaOfSpeech #VocalCordDysfunction #FocalDystonia #SensoryProcessingDisorder #SensoryIntegration

I feel like such an alien sometimes... having difficulty understanding concepts other people (even children) take for granted, yet easily understanding and being able to do things other people find difficult, easily.

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Community Voices

Should I continue taking Baclofen after having Botox injection?

I had my first Botox injections yesterday and I'm wondering if I should continue taking Baclofen 2x a day or if I should taper off. Any advice? #FocalDystonia

Community Voices

When the “miracle injections” don’t work..

<p>When the “miracle injections” don’t work..</p>
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How One Song Unlocked the Secret to Treating This Man's Untreatable Disorder

In 2007, Frederico Bitti, an Italian journalist, was conducting an interview when he was suddenly unable to look at his colleague. Each time he tried to look to his left, an unknown force pushed his head in the opposite direction. At first, doctors couldn’t diagnose his condition, so his symptoms worsened, according to The Globe and Mail. Bitti began experiencing painful muscle contractions and involuntary tremors in his neck muscles that made everyday actions, such as shaving and drinking from a glass, incredibly difficult. Bitti was eventually diagnosed with focal dystonia, a disorder characterized by involuntary muscle movement and stiffness. Its causes are mostly unknown, so doctors weren’t sure how to treat him. He tried Botox injections and a variety of medication, which did little to relieve the symptoms. Doctors even recommended brain surgery. Nothing seemed to work. Desperate, Bitti flew to Toronto to meet with Dr. Joaquin Farias, a dystonia therapist known for treating patients by reteaching them to use affected muscles rather than by prescribing medication. Bitti had been working with Dr. Farias for a few weeks when he reached a turning point in his recovery. One day while he was walking back to his hotel room, “Vogue” by Madonna came on his iPod. “As I followed the music, I noticed my walking was better,” Bitti says in the video below. “I got home, I filmed myself dancing, and I showed it to him [Farias]. He was like, ‘Oh my god. This is your treatment!’” Hear Bitti’s story in the video below — and check out his awesome dance moves at 2:50. Want to celebrate the human spirit? Like us on Facebook . And sign up for what we hope will be your favorite thing to read at night .