I want to share this to give some ideas I have found that help me move through difficult days with more steadiness and self compassion, especially when things are flaring…
Living with dystonia and other movement disorders means navigating far more than muscle spasms or abnormal postures—and if have dystonia, you already know this. As patients, we feel the full weight…
Living with dystonia, or any chronic condition, places the nervous system under continuous pressure and strain. When symptoms are unpredictable or uncomfortable, the brain learns to stay on high alert, anticipating…
Living with chronic pain or other health conditions is, in many ways, an exercise in perpetual, involuntary mindfulness. For those of us navigating long-term conditions—like my own twenty‑five‑year journey with…
One of the hardest things about living with dystonia is trying to explain what it feels like on the inside. People often see (not always for some) the muscle contractions, the pulling, the tension…
Having lived with chronic pain and involuntary muscle contractions from a neurological movement disorder called dystonia since 2001, I felt defeated many times. But I am still here battling every…
Putting feelings into words does more than help you reflect. Brain imaging research shows it can shift activity inside emotional circuits. If you are someone who journals or does any…
I’ve always been a nature lover. I like nothing better than going for a hike in the woods or strolling along the beach or gazing at the mountains – or…
Most of us have heard of the fight-or-flight stress response. It becomes activated when we believe there is a chance we can outfight or outrun real or perceived danger and…
This is Part 3 of three articles I wrote about pain. The first 2 are entitled: Part 1- The real impact of pain that people cannot see Part 2- Life…
After being diagnosed with a rare disease or any other chronic health condition (in my case I have dystonia) and learning it is not a temporary problem (or if you…
I have had cervical dystonia since 2001. It was very severe for many years, but over time I have been able to gain significant control over my symptoms using a…
"You have cervical dystonia", said my beloved family doctor of 20 years. He was almost exuberant, relieved to have finally uncovered the mystery of my severe neck pain, head tremors,…
Thinking about the year-end holidays brings up a kaleidoscope of images, and an array of emotions for me. And everyone else too, I imagine. There are the vivid memories of…
Living with a chronic health condition is sometimes reminiscent of the plight of Sisyphus, a king from Greek mythology. Sisyphus was king of Ephyra who was punished for chronic deceitfulness…
A major illness can rob some people of their strength and courage, but in other cases it motivates people to get help and, if possible, to help others. 20 years…
“You have dystonia” are three words that can be very confusing and frightening. Receiving the news that you have any chronic condition can bring out a lot of emotions. People…
Thinking about the year-end holidays brings up a kaleidoscope of images, and an array of emotions for me. And everyone else too, I imagine. There are the vivid memories of…
September is Dystonia Awareness Month, so I want to share a little about it and how it impacts those of us who live with it. Please share this with your…
In 2022, the U.S. Food and Drug Administration (FDA) approved DAXXIFY® (DaxibotulinumtoxinA-lanm) for the temporary treatment of fine lines and wrinkles. Many people touted DAXXIFY as a "Botox alternative."…
According to a late September 2022 news release from biopharmaceutical company AEON Biopharma, Inc., positive topline data is available from a clinical trial evaluating ABP-450 for patients with cervical…
Recently, an article highlighted one man’s life journey after being diagnosed with rare cervical dystonia. Dystonia Dystonia is a chronic movement disorder, existing in the same family as the more…
Thinking about the year-end holidays brings up a kaleidoscope of images, and an array of emotions for me. And everyone else too, I imagine. There are the vivid memories of…
Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on some of the rarest, most…
Huafrid Billimoria is a 25-year-old triathlete in India. He has just become the first person diagnosed with cervical dystonia in the country to complete a 42km marathon. In 2019 he…
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