By Jodee Redmond from In The Cloud Copy Dr. Kristina Simonyan has been studying patients with laryngeal dystonia. Through the scope of her work, she has heard numerous anecdotal accounts…
Uncertain times may be the understatement of the year so far. When the news of COVID-19 (coronavirus) caught our attention, there were a lot of people frozen in disbelief and…
I recently had the pleasure of being interviewed by Sunshine Mugrabi about how I transformed my life over the past 20 years in the face of immense pain and suffering…
In another article I wrote for Patient Worthy, I talked about the emotional pain of “victim mentality” when faced with a health or other life challenge. In this article, I…
People often tell me how upbeat and positive I am, despite living with pain from dystonia all day, every day for the last 20 years. I would say this is accurate…
If you are like me and probably most people, in today’s busy world it is a big challenge to be still and mentally at ease. This is such an important…
This interview was originally published on the AMADYS website I was recently interviewed by Matthieu Creson for AMADYS to share my experience living with dystonia for nearly 20 years, as…
Have you ever been judged by others for the things you do or the way you live your life? I know this is a rhetorical question because we have all…
When I was 30, I developed a painful neurological movement disorder called dystonia. It totally turned my life upside down where I went from being fully functional and very active,…
Having lived with chronic pain from dystonia for almost 20 years, I spent most of that time focused on treating the physical symptoms. This has been very important and helpful, but for…
According to a story from ScienceBlog, the results of an international research study which was led by a team of scientists in Oakland, California and Munich, Germany, has led to…
IPain The International Pain Foundation (IPain) is a nonprofit organization dedicated to supporting those with chronic pain due to neurological, musculoskeletal, inflammatory, degenerative, and emotional conditions. They aim to improve…
Living with a chronic long-term health condition, can have a devastating effect on someone’s life as it affects everything we do. It’s like finding yourself on a new path without…
I was diagnosed with benign essential blepharospasm at the end of 2015. This is a neurological condition which causes the muscles around my eyes to contract, resulting in uncontrollable blinking…
I have lived with pain almost my entire life. Prior to the age of 30, when I developed chronic pain from a neurological movement disorder called dystonia, I experienced pain primarily…
Bontulinum Neurotoxins (BoNTs) are a protein that are used to treat a wide array of conditions including cervical dystonia, blepharospasm, neurogenic detrusor overactivity, and sialorrhea to name a few. These proteins…
This is an interview I did with Scott Davidson who has a podcast called Living Adaptive, where he interviews people that have adapted to significantly difficult situations in their lives.…
In 2001, I developed severe chronic pain from a neurological movement disorder called dystonia. My life before and after dystonia are as different as night and day. I went from a very active lifestyle to…
I live in North Carolina. where we were recently hit with a powerful hurricane that caused a lot of damage. Many trees fell on and around my house. One tree…
This is a video presentation I created called Living Well with Dystonia. It shares some of the many things I have learned in my almost 20 years of living with…
If you have a health condition where you are misunderstood and perhaps judged by others for how you live your life to battle your symptoms, I invite you to read…
September is Dystonia Awareness Month! Dystonia is a chronic movement disorder, existing in the same family as the more well-known Parkinson’s disease. Symptoms of dystonia are defined by involuntary muscle contractions which…
If you suffer with anxiety, you know just how crippling it can be. Anxiety* is actually a natural response to our environment that is designed to protect us from danger.…
Pain is one of the most intrusive things we can experience because it impacts nearly every aspect of our lives, especially if it is chronic. As Bonnie Prudden said, “Pain,…
How someone deals with adversity is very unique to the situation and the individual. I have faced great adversity at different times in my life, some of which I handled…
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