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My #DAMPersonal Story With Essential Tremor

2014 October 20

DAMBy Guest Blogger Kathleen Welker, president, Tremor Action Network (TAN)

You never forget the onset of a chronic condition; the sequence of going from being healthy to having irreversible and progressive symptoms.

It was 1986, and I was getting over strep throat. Standing in front of the bathroom mirror, I noticed my head moving abnormally. My first thought was, it’s a temporary side effect of medication. When it didn’t go away, panic set in.

Fast forward to the diagnosis of essential tremor (ET), the most common movement and tremor disorder that is now thought to be a degenerative disease, affecting the lives of over 10 million Americans. I remember the neurology specialist sharing, “It’s nothing; just act like Katharine Hepburn,” the Academy Award actress who exhibited visual symptoms of head and voice tremors. My response was, “But I’m not her. I can’t act!”

The stigma of being different took an emotional toll. ET contributed to the dissolution of my marriage and unkind remarks from friends.  I didn’t know anyone with ET. It would be 11 years before I did.

Through the International Essential Tremor Foundation, I started the first support group in the San Francisco Bay area. What a relief to see a mirror of me at the initial meeting. A year later, I co-founded the first online support group with Frank, a patient from Texas.

In 2003, we formed an online weekly chat that sparked a weekend in the Great Smoky Mountains with chat friends Jan and Jennifer, who discussed offering patients more options.

TAN, a nonprofit headquartered in California, was founded in a Tennessee log cabin! Two more people, Ann and Hok, joined the original board of directors that represented ET, dystonia and Parkinson’s patients.

Two of the board members were applying for SSDI. TAN didn’t know of Allsup, only paralegals and attorneys that took two years or longer to obtain SSDI decisions. A new online member, Mary Jane from New York, shared what a breeze her 2006 SSDI appeal had been with Allsup representation. With Allsup’s assistance, TAN added SSDI eligibility as a service

TAN’s Facebook page describes the organization as providing boutique one-on-one support and guidance. Thanks to Allsup, TAN services include Medicare and mental health. Our motto is: We can help you, with or without a diagnosis!

I never learned to act like Kate Hepburn. TAN and 17 years of great friendships with tremor patients helped me to accept who I am—ME regardless of ET!

13 Responses leave one →
  1. October 28, 2014

    Very good writeup, Kat. Thanks for the mention.

  2. Nannette permalink
    October 28, 2014

    Excellent blog. Allsup thank you for highlighting patient advocates who work to make a better world for all of us.

  3. January 16, 2018

    People with Benign Essential Tremor tend to grasp cups with both hands, eat soups out of cups instead of using a spoon or just use straws for liquids. Herbal Treatment of Benign Essential Tremor can help manage the symptoms effectively and lead a quality life. “Betneton” herbal supplements that can provide relief from the symptom of benign essential tremor while preventing its further progress.

  4. lendaMycle permalink
    March 19, 2018

    . . . .

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