dystonia – Page 6 – Patient Worthy

Dystonia Medical Research Foundation’s NYC Dystonia Patient Symposium

Post author:Patient Worthy Contributor
Post published:May 7, 2017
Post category:

https://pixabay.com/en/concert-violin-violinist-music-1838412/

Get Ready… The NYC Dystonia Patient Symposium is Coming Up Next Week!

Post author:Erica Zahn
Post published:May 3, 2017
Post category:Dystonia Rare Disease Timely

A few years ago, a friend of mine who is a violinist suddenly developed a movement disorder called focal dystonia. His neck began to have intermittent muscle contractions. His head would…

Editor’s Choice: Overcoming Obstacles and Fulfilling Dreams with Rare Disease

Post author:Patient Worthy Contributor
Post published:April 21, 2017
Post category:Duchenne Muscular Dystrophy Dysautonomia Dystonia Gastroschisis POTS Rare Disease Trigeminal Neuralgia (Tic Douloureux)

Happy Friday Patient Worthians! PW Contributor Tom Seaman talks about what it's like to overcome the mental toll of your rare disease diagnosis. Another PW Contributor suffering from TN, dysautonomia and…

Overcoming Victim Mentality When Living with Chronic Illness

Post author:Tom Seaman
Post published:April 13, 2017
Post category:Dystonia Rare Disease

When the pain and muscles contractions from my dystonia were at their worst for me (see above), it significantly limited what I could do. For years I characterized dystonia and…

Editor’s Choice: New MS Drug Approved, Narcolepsy Realities and Building a CF Team

Post author:Patient Worthy Contributor
Post published:March 31, 2017
Post category:Cystic Fibrosis Dystonia Multiple Sclerosis Narcolepsy Rare Disease

Welcome back Patient Worthians! This week we have some exciting news for the MS community. Additionally, we have some great tips on how to build your CF dream team. Also,…

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Artist Turns His Experience with Facial Dystonia Into Stunning Works of Art

Post author:Alexa Lee
Post published:March 29, 2017
Post category:Dystonia Rare Disease

The artist's medium? Wood, mirrors, and various other materials. His art? Jarring and beautiful headpieces—Tiago Valente's way of understanding his own experience with dystonia. Tiago called it facial dystonia, and from…

Source: www.pixabay.com

Ode to Brain Surgery: This Musician Plays His Guitar on the Operating Table

Post author:Alexa Lee
Post published:February 21, 2017
Post category:Dystonia

The Chinese musician cradled a guitar, the callused fingers of his left hand flying across frets, and the fingers of his right hand plucking and strumming. But on this Tuesday…

Source: www.pixabay.com

If This Man Can Write a Book About Dystonia, So Can You!

Post author:Alexa Lee
Post published:February 20, 2017
Post category:Dystonia Rare Disease

I’m a firm believer in the fact that everyone has a story. Sure, the sentiment is a little corny. But that doesn’t make it any less true. That’s why I…

Editor’s Choice: Love and Other Drugs

Post author:Patient Worthy Contributor
Post published:February 17, 2017
Post category:Cystic Fibrosis Duchenne Muscular Dystrophy Dystonia Rare Disease Spinal Muscular Atrophy

Welcome back to Editor's Choice Patient Worthians! This week, a PW Contributor told a love story about how her husband's bipolar disorder helps her manage her rare disease. We also have an…

Este hombre cree en una curación para la distonía. ¿Y Vos?

Post author:Jean Martell
Post published:February 16, 2017
Post category:Dystonia Español Rare Disease

El ha sido presentado en el National Geographic Channel. Le ha dado la mano al presidente Obama. Ha sido detenido por el servicio secreto. Incluso después de todo eso, Jason Dunn sigue…

My Saving Grace: How My Bipolar Husband Was the Best Thing for My Cervical Dystonia

Post author:Patient Worthy Contributor
Post published:February 14, 2017
Post category:Dystonia

I love my husband. He is my best friend. When we stood before God and our family to exchange vows, we made a commitment for better or for worse. Wow,…

Editor’s Choice: Dreaming of the Golden Years on Super Bowl Sunday

Post author:Patient Worthy Contributor
Post published:February 10, 2017
Post category:Cystic Fibrosis HAE Lennox-Gastaut syndrome Myasthenia Gravis Rare Disease

Got the post-Superbowl blues? Then check out these uplifting rare disease stories! One amazing young woman with cystic fibrosis got a sweet shout-out on Super Bowl Sunday, and another older…

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Katie Finally Has a Ray of Hope Against Dystonia

Post author:Al Pendleton
Post published:February 10, 2017
Post category:Dystonia Rare Disease

Courage takes many forms. Most people think of it as a way of facing down enemies or standing on principle. However, a seven-year-old Irish girl named Katie shows her own…

Fred and me. Fred helped diagnose me with dystonia many years ago before anyone else knew what it was and I was still doctor shopping. He has dystonia also.

Self-Empowerment Tips for Healthy Living

Post author:Tom Seaman
Post published:February 2, 2017
Post category:Dystonia Rare Disease

When we are faced with a limiting health issue where performing "simple" everyday activities becomes a challenge, our self-confidence and self-worth can dwindle. This can happen with any health condition…

This little girl with dystonia needs your help!

Esta niña con distonía necesita tu ayuda en este momento

Post author:Patient Worthy Contributor
Post published:February 1, 2017
Post category:Dystonia Rare Disease

¿Cuánto cree usted que la media niña de cinco años de edad, pesa? De acuerdo con kidshealth.org, la respuesta es aproximadamente 45 libras. Ahora, ¿cuánto cree usted que una silla…

Pixabay

El destino de este hombre atrevido: distonía y Tenis

Post author:Patient Worthy Contributor
Post published:January 24, 2017
Post category:Dystonia Rare Disease

¿Quién sabía que la distonía y tenis van mano a mano ?! Por veinte años de edad, Josh, es un partido en el cielo. Él ha estado fascinado con tenis…

TheDigitalArtist / Pixabay

Cómo estimular su cerebro para tratar la distonía

Post author:Patient Worthy Contributor
Post published:January 22, 2017
Post category:Dystonia Rare Disease

El hecho de que Halloween ha pasado no significa hemos terminado de hablar de la cirugía cerebral. Specifically, deep brain stimulation therapy. No, esto no es algo así como el…

Editor’s Choice: Our Mind is a Drug and the Dangers of Superbugs

Post author:Patient Worthy Contributor
Post published:January 13, 2017
Post category:Cystic Fibrosis Cystinosis Dystonia Epidermolysis Bullosa Rare Disease

Who is excited for another long weekend coming up this Monday?! To kick off your three-day weekend, take a look at these intriguing stories... Researchers have identified a superbug that…

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The Little Gene Mutation with a Big Impact on Dystonia

Post author:Ronald Ledsen
Post published:January 12, 2017
Post category:Dystonia Rare Disease Timely

Science has a Little Engine That Could story that you may want to check out. It makes for a pretty dense read, but once you wade through the data, the…

Editor’s Choice: After Diagnosis, to Med or Not to Med?

Post author:Patient Worthy Contributor
Post published:January 6, 2017
Post category:Cystinosis Dystonia HAE Myasthenia Gravis Rare Disease

Happy New Year Everyone! How are those resolutions coming along? This week, we have a powerful post from one of our contributors who stopped taking her meds in favor of alternative…

Our Mind: As Powerful Any Drug

Post author:Tom Seaman
Post published:January 5, 2017
Post category:Dystonia Rare Disease

Did you know that we have chemicals in the brain as powerful as drugs for pain, depression, anxiety, and other conditions? Among them are neurotransmitters called endorphins, serotonin, oxytocin, and…

Asi es como se siente ir a la universidad con una enfermedad crónica

Post author:Patient Worthy Contributor
Post published:January 3, 2017
Post category:Dystonia Rare Disease

Ir a la universidad es un gran cambio para cualquier persona. Lo más probable es que vive en una ciudad nueva, que habita en una nueva habitación, y rodeado de…

Chica con distonía solo quiere bailar, esta organizacion la esta ayudando a hacerlo!

Post author:Patient Worthy Contributor
Post published:December 31, 2016
Post category:Dystonia Rare Disease

Imagine tener un trastorno que controla sus movimientos. Un trastorno que causa contracciones musculares dolorosas que no se puede detener. Imagínese estar en una silla de ruedas debido a esto…

Editor’s Choice: What is Your Resolution This New Year?

Post author:Patient Worthy Contributor
Post published:December 30, 2016
Post category:Dysautonomia Dystonia Lyme Disease Myasthenia Gravis POTS Rare Disease

Happy Almost-New-Year Patient Worthians! What is your new year resolution? As someone living with a chronic illness, mine is to get back to my cardiologist for that much-needed check-up I've…

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Amber’s Approach to the New Year with Cervical Dystonia

Post author:Patient Worthy Contributor
Post published:December 30, 2016
Post category:Rare Disease

For most people, the new year begins January 1st. me, my new year begins in early September. Why? Because I am a teacher. But not just any teacher. A full-time…

Dystonia Medical Research Foundation’s NYC Dystonia Patient Symposium

Get Ready… The NYC Dystonia Patient Symposium is Coming Up Next Week!

Editor’s Choice: Overcoming Obstacles and Fulfilling Dreams with Rare Disease

Overcoming Victim Mentality When Living with Chronic Illness

Editor’s Choice: New MS Drug Approved, Narcolepsy Realities and Building a CF Team

Artist Turns His Experience with Facial Dystonia Into Stunning Works of Art

Ode to Brain Surgery: This Musician Plays His Guitar on the Operating Table

If This Man Can Write a Book About Dystonia, So Can You!

Editor’s Choice: Love and Other Drugs

Este hombre cree en una curación para la distonía. ¿Y Vos?

My Saving Grace: How My Bipolar Husband Was the Best Thing for My Cervical Dystonia

Editor’s Choice: Dreaming of the Golden Years on Super Bowl Sunday

Katie Finally Has a Ray of Hope Against Dystonia

Self-Empowerment Tips for Healthy Living

Esta niña con distonía necesita tu ayuda en este momento

El destino de este hombre atrevido: distonía y Tenis

Cómo estimular su cerebro para tratar la distonía

Editor’s Choice: Our Mind is a Drug and the Dangers of Superbugs

The Little Gene Mutation with a Big Impact on Dystonia

Editor’s Choice: After Diagnosis, to Med or Not to Med?

Our Mind: As Powerful Any Drug

Asi es como se siente ir a la universidad con una enfermedad crónica

Chica con distonía solo quiere bailar, esta organizacion la esta ayudando a hacerlo!

Editor’s Choice: What is Your Resolution This New Year?

Amber’s Approach to the New Year with Cervical Dystonia

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