Ted Ellis is on a mission to alert others about life-altering tremors he first experienced more than 20 years ago.

The tremors were the physical signs of a hereditary neurological condition known as essential tremor disorder.

Like Parkinson’s disease, ETD is characterized by uncontrollable trembling or shaking of the extremities.

There is no known cure and no specific medication to treat it. Though EDT is not considered life-threatening, it adversely affects balance, coordination and sociability — at times because it renders the vocal chords useless, but mostly because of the embarrassment sufferers feel because they cannot control their movements.

“My grandfather, Ansel Ellis, had ETD, and his arms and head would shake involuntarily, even if he was sitting down,” Ellis said. “It was hard for him to grasp things like a pen or a spoon. So you can imagine how difficult it was or him to do something as simple as eating soup. He never complained, but he suffered silently from the disorder and all but shut himself away from the public eye in his later years.”

So, when Ellis, 68, began experiencing a slight head bobble of his own, he determined not to allow the disorder to diminish his quality of life.

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He saw a neurologist, experimented with a variety of physician-recommended treatments to control his symptoms, became a member of the International Essential Tremor Foundation and found great encouragement in attending a support group.

The sole downside to the meetings was that the closest group was in Rhode Island — a long drive for Ellis, who lives in Scarborough.

Ellis received approval from the fouondation to establish a Maine ETD Chapter Support Group that meets at the Maine Medical Center campus in Scarborough.

There were 19 attendees at the premiere meeting in December, and the March session boasted 30 attendees. The next meeting is from 2 to 3:30 p.m. Sunday.

Those sessions are open to ETD sufferers and their support partners. They are intended to educate on what is known about the condition, explain the tools, services and resources that are available to make life easier and to provide a venue for sharing.

“I always emphasize that we are not doctors and it is not our job to diagnose or prescribe a specific course of treatment for anyone,” Ellis said. “There is no cure for this disease, and the symptoms and treatments available are (wide-ranging). We tell (ETD sufferers) to see a neurologist who is qualified to diagnose and prescribe professional treatment for their condition.”

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Anonymity and the dignity of group members is a chief consideration.

Names are not shared outside the sessions, and attendees are not required to speak unless they want to.

“I see this group as an opportunity for people with various levels of essential tremor,” Ellis said.

His quest to bring awareness and relief to ETD sufferers is further fueled by the knowledge that his daughter has also been diagnosed with the condition.

“The important thing is to not give up,” he said.

Staff Writer Deborah Sayer can be contacted at 791-6308 or at: dsayer@pressherald.com

 


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