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…
In a word, nothing. In two words, don’t panic. In two other words that are the same but are more positive and action oriented…be calm. Let me explain…when we experience…
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…
The other day I read a post in a dystonia support group that is similar to something I see and hear very often. I’m sure you have as well, and…
We have all at one time or another experienced pain and suffering of some kind. I sure have, living with dystonia for over 20 years, the first 5 of those years being…
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 day… and…
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,…
I believe very strongly in the power of thoughts and words as it relates to my health. I say this because I have lived with a painful chronic neurological movement…
I love quotes. Some of them I read or hear and they go in one ear and out the other. Those that really resonate stick with me and help change…
This may sound like a strange title so let me explain. I live with a health condition called dystonia, which is a neurological movement disorder. It is the third most…
In 2001, dystonia totally changed my life. I put together a video that shares my 20+ year pictorial journey with dystonia, chronic pain, and overcoming anxiety, depression, and morbid obesity…
For most of my 21 years with chronic pain and other symptoms from dystonia, a neurological movement disorder, I viewed it as a curse; an evil intruder that ruined my life.…
In an investor news release from biopharmaceutical company Avidity Biosciences, Inc., the company shared that the FDA placed a partial clinical hold on new enrollment for the Phase 1/2…
Happy Friday! A tropical storm system will be traveling up through the mid-Atlantic this weekend, bringing wind and rain. Hunker down! This week, we have stories on Duke University being…
According to a story from neurology.duke.edu, Duke University has recently been recognized as a Center of Excellence for Dystonia treatment by the Tyler's Hope for a Dystonia Cure Foundation. This…
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…
Having lived for over 20 years with chronic pain and persistent involuntary muscle contractions from dystonia, a neurological movement disorder, I have experienced a lot of suffering. If you have read…
Having lived over 20 years with chronic pain from dystonia (a neurological movement disorder) in order to best manage my condition, I have to be very mindful of the way I live…
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…
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…
This is an interview I did with Dr. Carly Hudson on the Healing Ground Movement podcast discussing my life with dystonia and chronic pain, as well as the various ways…
If you have chronic pain like I do (mine is caused by a movement disorder called dystonia), or one of many other thousands of health conditions, or just dealing with…
Life is filled with endless ups and downs. The first 5 of my ongoing 20 years living with dystonia were pretty much nothing but down times. I experienced the most horrible pain…
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…
Human beings are wired to run away from things that are painful and difficult. I sure as heck did the first 5 years of my dystonia diagnosis. It often seems that…
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