People often tell me how positive I am, and for the most part, I think that’s true. But after living with dystonia for more than two decades, my understanding of…
When life changes in a way we never wanted or expected, there are often two struggles taking place: the hardship itself and our struggle against the fact that it is…
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…
Editor's Note: This article by Tom Seaman was originally shared by Patient Worthy on 12/15/22. I believe very strongly in the power of thoughts and words as it relates to…
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…
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…
Click here to see Part 1 of of this 3 part pain series. If you suffer with chronic pain, you not only live with the unrelenting sensation of pain, but probably…
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…
Editor's Note: This story share was submitted by Beverly Smith, a retired schoolteacher from Canada. I was diagnosed after treatment for PTSD and having had a strange rash. The cause…
We all know that changing habits of behavior changes our life experiences, but putting this to practice is where a lot of us get stuck. Either we doubt our ability,…
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,…
When I developed a neurological movement disorder called dystonia back in 2001, one of the first things I was told is that there is no cure. This terrified me. No…
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…
What does it mean to you to be living with a rare disease or chronic illness at this time of year? Over the years, since I was diagnosed I've never…
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. Since I…
Most things in life don’t always go as expected. None of us ever truly prepares for a hardship that throws our life off course. Even in the case of a…
As I reflect on over 20 years living with dystonia and pain and other symptoms that changed my life in many ways, I want to share some of the things…
If you have dystonia and chronic pain like I do, or one of many other thousands of health conditions, or just dealing with some tough life situations...you are not alone.…
Occasionally the acronym NEGU may appear in a social media post. It has been established as a rallying cry and support for people with cancer or other debilitating diseases. It…
If you have read my books or articles, you have probably noticed that I talk about self-care quite a bit. I think self-care is extremely important for anyone, whether they…
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