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…
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 have lived with chronic pain from a neurological movement disorder called dystonia for over 20 years. Chronic pain does not follow any rules, and after multiple beatings, we can lose our…
If you live with any form of pain, I’m hoping the following information will be of help. Many of us look at pain the wrong way that exacerbates our problem,…
On April 26th, I had the honor of speaking at the American Brain Foundation’s Commitment to Cures fundraising dinner during the American Academy of Neurology annual convention in Boston. I…
I have lived with dystonia (a neurological movement disorder) and chronic pain for over 20 years. The very active life prior to dystonia is night and day compared to the forced sedentary…
Chronic pain reminds me of a bully that picks on kids in the schoolyard every day. Like the bully, chronic pain does not follow any rules and after multiple beatings,…
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. I have to be honest…
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…
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 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…
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…
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…
Current treatments for cervical dystonia provide inadequate relief to many. Dystonia twists people and leads to strange postures, involuntary movements and pain. It affects men, women and children. Check out more…
When that moment happened, and again I don’t know when it happened, but when that moment in my head just clicked and I stopped being, or stopped putting myself in…
Una enfermedad incurable que causa espasmos musculares dolorosos acaba de recibir $ 45,000 más cerca de una cura. La distonía es una condición incómoda que hace que los músculos se…
September was dystonia awareness month [but that doesn't mean we can't keep promoting awareness]! Dystonia is a rare neurological movement disorder that can cause involuntary muscle spasms and contractions, tremors,…
Life is filled with endless opportunities. Sometimes the opportunities, or silver lining, are hard to see when we have problems with our health, finances, family, or career, but they exist.…
How many 22 year old kids do YOU know who live WELL with a chronic illness? Uh, I can’t say I know many other than one kid who has type…
I shared it with my family. I shared it with my wife, my mother and my brother of course, and they were grateful that it wasn’t something that was going to…
There [are] treatment[s] for symptoms for dystonia. For neuropathy they can give you things like anti-depressants which have been known to curb neuropathy. They can do botox injections into the muscles…
I think, the earliest I can remember of any issues that I was having with dystonia were just not being able to hold a drumstick or a mallet. I used…
The process to get diagnosed was a very long one. It was over two years that I first started seeing a neurologist regarding the concerns and issues that I was…
I discovered this neurologist, my current neurologist, through an occupational therapist who was trying to help me learn to live with whatever condition I had at the time, because I…
My name is Nolan,and I'm from Virginia Beach, Virginia. At this time the dystonia will effect just about anything that I do, but my one true passion is running. I…
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