Orchard Lake resident shares battle with movement disorder

By: Mark Vest | West Bloomfield Beacon | Published December 19, 2021

 Orchard Lake resident Shari Finsilver has lived with essential tremor since she was a child. According to a press release, essential tremor is the most common movement disorder, affecting an estimated 5% of people worldwide.

Orchard Lake resident Shari Finsilver has lived with essential tremor since she was a child. According to a press release, essential tremor is the most common movement disorder, affecting an estimated 5% of people worldwide.

Photo provided by Pat Baskin

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ORCHARD LAKE — For approximately eight years, Orchard Lake resident Shari Finsilver kept a secret from her family.

What she was hiding wasn’t anything to be ashamed of, but Finsilver said she was “just embarrassed.”

What embarrassed her is that her hands would shake for no apparent reason.

When she was 11 years old, she began to notice that she couldn’t draw a straight line at school, and she said she “could not figure out for the life of me why I couldn’t do that.”

Progressively, Finsilver said, her hands began shaking more.

It wasn’t until she was 19 that her secret came out at a holiday dinner, while sitting across from her mother.

“I picked up a spoon. My hand began shaking terribly, and the spoon flew across at my mom,” Finsilver said. “She was just horrified. She immediately thought I had Parkinson’s disease, because this was in the ’60s. No one knew of anything but Parkinson’s disease.”

Finsilver’s  mother took her to see a neurologist, and she was diagnosed with essential tremor, which, according to a press release, is the most common movement disorder, affecting an estimated 5% of people worldwide.

It is a neurological condition that primarily causes a rhythmic trembling of the hands, but it can also affect the head, voice and legs.

“I was diagnosed the first time I saw this neurologist; that is unusual,” Finsilver  said. “Most people go through many different doctors’ visits, like even five, seven times before they get properly diagnosed.”

She said that a medication was prescribed to her, but it didn’t help.

“I just threw it away and proceeded to spend probably the next 30 years or so hiding it, just never talking about it,” Finsilver said.

Finsilver said the symptoms of essential tremor can run the gamut from being mildly aggravating to “completely disabling.”

It can affect daily living activities such as cooking, eating, drinking, brushing teeth, tying shoe laces, writing and attempting to button clothes.

Patrick McCartney is the executive director of the International Essential Tremor Foundation, which is a nonprofit organization based in Kansas.

He estimated that 7 million to 10 million people in the United States have a “varying degree” of essential tremor, and he thinks the number may be even higher than that, but because some go undiagnosed, they don’t end up in the system.

From his perspective, the lack of awareness about essential tremor is “probably our biggest challenge.”

“I think the most important thing for people to know is it’s not Parkinson’s,” McCartney said. “It’s its own separate neurological disorder that has its own set of unique challenges and difficulties that (the) person has to deal with on a daily basis.”

McCartney discussed a difference between essential tremor and Parkinson’s disease.

“Essential tremor is an action tremor, so you’ll tend to notice it more doing things — reaching for your cup of coffee and bringing it back, writing a check, trying to put earrings in or makeup on for ladies. Parkinson’s tends to be more of a resting tremor,” he said. “So, if you’re just sitting in a chair, sitting on a couch, and your hand is tremoring, that’s probably not essential tremor. Essential tremor is also heredity about 50% of the time, so if there is a family history of essential tremor and you start doing it, that’s a good sign that might be what you have.”

Despite the typical onset for essential tremor not coming until someone is in the 40- to 50-year-old age range, according to McCartney, “it can come at any time.”

“We’ve seen it with small children all the way to people 70 or 80 years old when the onset begins,” he said.

Things took a dramatic turn for Finsilver when her sister “excitedly” called her about a segment she had seen on the television program “20/20.”

The segment shared details about something known as deep brain stimulation surgery, which according to the Mayo Clinic, involves implanting electrodes in certain areas of the brain. The electrodes produce electrical impulses that regulate abnormal impulses.

The amount of stimulation in deep brain stimulation is controlled by a pacemaker-like device placed under the skin in the upper chest. A wire that travels under the skin connects the device to the electrodes in the brain.

According to the Mayo Clinic, deep brain stimulation is commonly used to treat essential tremor, Parkinson’s disease, dystonia, epilepsy and obsessive-compulsive disorder, and it is being studied for potential treatment for Tourette syndrome, Huntington’s disease and chorea, chronic pain, and cluster headaches.

It is reserved for people whose symptoms aren’t controlled with medications, according to the Mayo Clinic.

Finsilver checked into it and opted to have the surgery in 1999 at Henry Ford Hospital.

“It was life-changing,” she said. “I was now able to do things that I had never been able to do before. It’s been incredible. What they do is, they place electrodes in the thalamus of the brain and they connect that to wires that run down the head, really under the scalp, that then connect to a generator that’s placed in the body.”

Finsilver said that, for some people, it didn’t work as well as they had hoped, but, “for most, it’s been an amazing surgery to have.”

“For me, it does not cure it, but it really controls it,” she added.

Finsilver said she was awake during the surgery and treated it like a science experiment.

“I thought it was fascinating,” she said. “I was not nervous at all.”

Finsilver said she was very reclusive 23 years ago and “begged off of many social engagements.”

She discussed how things have changed since her surgery.

“I’m out there all the time,” Finsilver said. “I’m involved in many organizations. I just did this speech the other day, which people who have ET do not like to speak in public because you’re shaking, people are watching you, and you’re shaking even more. … I would never have done something like that prior to the surgery.”

Finsilver was recently the keynote speaker and honorary chair at a JVS Human Services Trade Secrets event that raised more than $270,000 for the Women to Work program, which helps women learn important skills for immediate employment, according to information provided by the CKC Agency.

Following the surgery, Finsilver said, she felt like she was “leading a more normal life.”

“I could go out in public and eat,” she said. “I could do everything — cook and eat. The things that before I couldn’t do, I could do them now.”

Finsilver shared what the most noticeable thing was for her after opting to have surgery.

“The most amazing thing for me was the mental freedom, which I was able to achieve after my surgery,” she said. “My mind would be spent all day thinking about my tremor. Like, if I was in a meeting, how to avoid having to speak, how to avoid going to pass a piece of paper to somebody and having them see my hand shake, how to avoid eating if I was in a meeting with people, things like that. And once I had the surgery, I realized that all of the time, effort and mental capacity that I allowed to totally encompass with thinking about my tremor — it was gone.”

She described it as the most freeing feeling she had ever had.

Finsilver currently serves as the vice president of the International Essential Tremor Foundation, which she said has support groups all around the country.

She led the first support group in Michigan, which started in 2000.

“That’s usually the first time that anyone who’s suffering from ET will meet another person who has it, and so the support group is a wonderful place for people to come together, to share information, to help each other (and) to see that they’re not alone,” Finsilver  said. “They’ll get suggestions from other patients about maybe medications that they’re taking, devices that they’re using, or treatments that they’ve had. And they share it amongst themselves, and that patient could go to their doctor and ask about (it).”

Finsilver shared life lessons that have come as a result of her battle with essential tremor.

“No. 1 is to talk more openly about your challenges, which I never did. And two, talking about it can not only help yourself, it can help other people,” she said. “And so, the sharing of the information is very important, and I never did that. And just to be able to know that ET, although it may be a part of me, it’s not who I am.”

McCartney shared his advice for people who may have symptoms of essential tremor.

“We encourage people, when it starts, to try to get in and make an appointment with a neurologist who is a movement disorder specialist,” he said. “So, first off, you get a proper diagnosis, and then you get a proper treatment plan for whatever disorder you may or may not have.”

Those seeking information or help, including in the search for a neurologist, can visit essentialtremor.org.

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