Personal Stories – Charley, age 63

His onset of essential tremor symptoms was at 12 years old when he noticed he fumbled. His ET got bad quickly, he doesn’t know how extreme it was but certainly he cannot hold peas on a fork. His left hand is worse than his right but fortunately he is right-handed. As a teen and in college years he was an actor and was typecast as a drunk or anything that involved a spastic character. In later years, the past 5-6 years, his voice is quivering when he sings. One thing he found interesting is that he has to urinate frequently in the middle of the night , saw a urologist for this symptom and the urologist thinks it has a neurological cause and is related to the tremor.  He has been on Primidone but has also tried other things like Resveratrol which is naturally found in red wine. He found some red wines would work better like the sweet ones. Also, a shot of a mixed drink will work for a short time to alleviate the tremor.

Around 1990, Charley’s occupation was a house painter and one of his customers was a neurologist who termed Charley’s tremor “familial benign essential tremor”. Up to this time, Charley said there was no name that he knew of for the condition. Mentally the ET has had no real effect on him whereas emotionally at times he gets so frustrated that, as a teacher, he has avoided going to the teachers lounge to eat. He says to his new students as a way of introduction and explanation about his shaking that he’s not afraid of them, that he has this condition.

He shakes more when he knows he has to do something very dexterous (whether by himself or with others). The tremor is enhanced around others. Recently, at his third son’s wedding, he was convinced by others to take a few shots of alcohol beforehand since he knew he would be singing and speaking. As a result he was fine and not effected by tremors at the wedding. When Charley works out at the gym, if he works out like a bandit someone will come over, both during and after, and ask if he’s okay. Other times he notices the tremor is when he writes checks .. they are not legible and has had his signature rejected because it did not match.

In terms of what Charley has tried to alleviate the tremors, he took advice from a Hungarian doctor who focused on ketones in the body, and tried a long-term fast where he had nothing for 3 days, then water for 3 days, then raw fruit juice mixed with oil. He went as long as 48 days fasting. He also used Pat Robertson’s weight loss drink that he adapted for himself. He noticed that after maybe 7 days of fasting he lost his tremor.

For 19 years he has worked in the county school system and recently someone wanted to meet with him for accommodations, to make available a mobility device you can speak into which will automatically write what you say.

In Charley’s family, his mother-in-law had ET and wife’s sister’s son has ET and Parkinson’s Disease.

Interviewed by Lisa Gannon
Silver Spring, MD Support Group Member

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