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September is Dystonia Awareness Month What is Dystonia and What Does it Feel Like?

September is Dystonia Awareness Month What is Dystonia and What Does it Feel Like?

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…

Continue Reading September is Dystonia Awareness Month What is Dystonia and What Does it Feel Like?
Be Kind to Your Pain. It’s Crying for Your Attention

Be Kind to Your Pain. It’s Crying for Your Attention

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…

Continue Reading Be Kind to Your Pain. It’s Crying for Your Attention
How We Can Relate More Effectively to Our Pain

How We Can Relate More Effectively to Our Pain

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,…

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They Don’t Know What They Don’t Know: Learning to Manage Judgement and Criticism from Others When Living with a Chronic and Debilitating Condition

They Don’t Know What They Don’t Know: Learning to Manage Judgement and Criticism from Others When Living with a Chronic and Debilitating Condition

Written by Lisa Matthews I know I am not alone in my suffering…Recently, I read an article published in 2018 by The National Library of Medicine where it was estimated that,…

Continue Reading They Don’t Know What They Don’t Know: Learning to Manage Judgement and Criticism from Others When Living with a Chronic and Debilitating Condition
Living with Dystonia – A Story of Overcoming Adversity

Living with Dystonia – A Story of Overcoming Adversity

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…

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What’s the Best Thing We Can do When We Are in Pain?

What’s the Best Thing We Can do When We Are in Pain?

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…

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How Photography Helps Take my Mind off my Pain from Dystonia

How Photography Helps Take my Mind off my Pain from Dystonia

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…

Continue Reading How Photography Helps Take my Mind off my Pain from Dystonia
Managing an Overly Stimulating Environment to Protect our Health

Managing an Overly Stimulating Environment to Protect our Health

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…

Continue Reading Managing an Overly Stimulating Environment to Protect our Health
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The Mentor She Wished She Had - How Elizabeth Became a Lifeline for EB
Finding Strength Together: Scott and Katie’s Journey with Advanced Kidney
You Are Not Alone: Empowering the Advanced Kidney Cancer Community
Finding Light Through Story-The Power of Ambassadorship in the Endometrial Cancer Community
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