dystonia – Page 2 – Patient Worthy

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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

Post author:[email protected]
Post published:June 15, 2023
Post category:Dystonia

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,…

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Living with Dystonia – A Story of Overcoming Adversity

Post author:Tom Seaman
Post published:May 3, 2023
Post category:Dystonia Rare Disease

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?

Post author:Tom Seaman
Post published:March 20, 2023
Post category:Dystonia Rare Disease

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

Post author:Tom Seaman
Post published:March 15, 2023
Post category: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…

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Managing an Overly Stimulating Environment to Protect our Health

Post author:Tom Seaman
Post published:February 3, 2023
Post category:Dystonia Rare Disease

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…

How do we Move Beyond Pain and Suffering?

Post author:Tom Seaman
Post published:January 27, 2023
Post category:Dystonia

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…

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How Resilient are you Living with Rare Disease? Probably more than you Think

Post author:Tom Seaman
Post published:January 26, 2023
Post category:Dystonia Rare Disease

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…

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We Have to Stop Beating Ourselves up When We Are in Pain

Post author:Tom Seaman
Post published:December 20, 2022
Post category:Dystonia Rare Disease

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,…

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The Power of Our Inner Dialogue on Our Health

Post author:Tom Seaman
Post published:December 15, 2022
Post category:Dystonia

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…

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Thanksgiving Quotes We Can Use All Year Long

Post author:Tom Seaman
Post published:November 23, 2022
Post category:Dystonia Rare Disease

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…

When Living with a Rare Disease, Isolating Ourselves can Often Feel Less Lonely

Post author:Tom Seaman
Post published:November 3, 2022
Post category:Dystonia

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…

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How Getting Lost in Physical and Mental Pain Helped Me Find Myself

Post author:Tom Seaman
Post published:October 28, 2022
Post category:Dystonia

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…

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How Life Before and After Chronic Pain from Dystonia Changed My Entire World

Post author:Tom Seaman
Post published:October 26, 2022
Post category:Dystonia Rare Disease

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.…

Editor’s Choice: A New Dystonia Center of Excellence, A Call for Sickle Cell Blood Donors, and a New Treatment Target for Glioblastoma

Post author:James Moore
Post published:September 30, 2022
Post category:Dystonia Glioblastoma Sickle cell anemia Sickle Cell Disease

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…

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Duke Earns Recognition as Dystonia Center of Excellence

Post author:James Moore
Post published:September 26, 2022
Post category:Dystonia

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…

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

Post author:Tom Seaman
Post published:September 9, 2022
Post category:Dystonia Rare Disease

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…

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The Power of Shifting our Mindset: Living with Chronic Pain and Illness

Post author:Tom Seaman
Post published:July 18, 2022
Post category:Dystonia

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…

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Listening to Our Body to Help Reduce Pain and Anguish

Post author:Tom Seaman
Post published:June 10, 2022
Post category:Dystonia

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…

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Tips for Becoming More Self-Empowered When Living with a Chronic Health Condition

Post author:Tom Seaman
Post published:May 2, 2022
Post category:Cervical Dystonia Dystonia

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…

Patient Story: Living with Dystonia

Post author:Alyssa Stevens
Post published:April 27, 2022
Post category:Dystonia

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…

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How Do You Cope With Chronic Physical Pain and Suffering?

Post author:Tom Seaman
Post published:March 11, 2022
Post category:Dystonia

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…

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How to Choose Better for Ourselves When We Are in Pain

Post author:Tom Seaman
Post published:February 14, 2022
Post category:Dystonia Rare Disease

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…

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Coming to Terms with Painful Challenges

Post author:Tom Seaman
Post published:January 12, 2022
Post category:Dystonia

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…

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Holidays with Dystonia

Post author:Patient Worthy Contributor
Post published:December 23, 2021
Post category:Dystonia Rare Disease

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…

Try as We May, We Can’t Hide From Our Pain Forever

Post author:Tom Seaman
Post published:December 10, 2021
Post category:Dystonia

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…

Get Involved

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

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

How Photography Helps Take my Mind off my Pain from Dystonia

Managing an Overly Stimulating Environment to Protect our Health

How do we Move Beyond Pain and Suffering?

How Resilient are you Living with Rare Disease? Probably more than you Think

We Have to Stop Beating Ourselves up When We Are in Pain

The Power of Our Inner Dialogue on Our Health

Thanksgiving Quotes We Can Use All Year Long

When Living with a Rare Disease, Isolating Ourselves can Often Feel Less Lonely

How Getting Lost in Physical and Mental Pain Helped Me Find Myself

How Life Before and After Chronic Pain from Dystonia Changed My Entire World

Editor’s Choice: A New Dystonia Center of Excellence, A Call for Sickle Cell Blood Donors, and a New Treatment Target for Glioblastoma

Duke Earns Recognition as Dystonia Center of Excellence

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

The Power of Shifting our Mindset: Living with Chronic Pain and Illness

Listening to Our Body to Help Reduce Pain and Anguish

Tips for Becoming More Self-Empowered When Living with a Chronic Health Condition

Patient Story: Living with Dystonia

How Do You Cope With Chronic Physical Pain and Suffering?

How to Choose Better for Ourselves When We Are in Pain

Coming to Terms with Painful Challenges

Holidays with Dystonia

Try as We May, We Can’t Hide From Our Pain Forever

Metastatic Breast Cancer: Navigating Grief

Rethinking What It Means to Live With Acromegaly

The Let’s Chat CAR T One-on-One Mentor Program: Speaking with Someone Who Understands What You Are Going Through

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