Priest raising awareness about essential tremor
Local support group offers encouragement to patients
WHITE LAKE TOWNSHIP, Mich. – For Father Bob Humitz, it all began about 35 years ago.
"After Mass one day one of the parishioners said, 'Your head was shaking during the Mass,'" Humitz said.
He went to his doctor, who then sent him to a neurologist.
"The neurologist did all the tests, and as a result of that, he said, 'It looks like you have ET,'" Humitz said. "'E.T.' the movie? Am I going home?'"
But the doctor wasn't talking about the lost alien. ET stands for essential tremor. It's a neurological condition that causes shaking.
"It can affect the head, the voice, it can affect the hands, the arms, sometimes the legs and sometimes the whole body," said Humitz.
It's not Parkinson's disease, but ET is often misdiagnosed as Parkinson's. In fact, experts say essential tremor is eight times more common than Parkinson's.
"It's difficult when you can't name it," said Humitz. "You just wonder what's going on."
At first Humitz tried to hide his shaking during services at St. Patrick Parish of White Lake.
"Eventually, it got to the point where this is it, you might as well know," said Humitz. "It's much better that way."
Instead of hiding his condition, he now often makes a point of sharing.
"Frequently at Mass I will start by introducing who I am and that I have ET and explain it to them," Humitz said. "It kind of puts them at ease because people get preoccupied with that, and they wonder, 'What's he shaking about?'" "Invariably, I'll get people who will come to me afterwards thanking me for saying that and that they think they have the same thing, and then I tell them, 'See your doctor.'"
An estimated 10 million Americans have ET, including some children. The cause is unknown, but it often runs in families, which suggests that genetics play a role.
There are treatments for ET, including medications and even brain surgery, but they're not effective for everyone, and it often takes a lot of trial and error to find one that helps.
In spite of treatment, Humitz's ET has gotten worse with age.
"It began to creep into my hands, my voice and my writing. I couldn't write anymore. That's when it was really disabling," he said.
He relies on a computer for many tasks, but it's no help with some.
"The most difficult for me is buttoning a shirt," said Humitz. "All these little things you have to learn all over again, how to do all these basic functions."
He's found encouragement at the Metro Detroit Essential Tremor Support Group that meets once a month at Saint Joseph Mercy Oakland in Pontiac.
Tom and Sabrina Pilarski lead the group. Tom also has ET.
"So many people have essential tremor and may not know it, or haven't had it diagnosed or are too embarrassed about it," said Tom. "It's wonderful to not feel isolated. I meet with other people who have the same condition, the same problems, and you know, we talk about things, we laugh and I have never left here not feeling up."
Sabrina Pilarski lends a spouse's perspective to the group's discussions.
"The benefit of people knowing that there's somebody else out there with the same thing has been such a huge breakthrough," said Sabrina. "Watching him be able to help someone else truly is just grand for me because I get to see him say to somebody, 'I understand.'"
Understanding flows freely at their meetings, as does laughter.
On the day Local 4 visited the group, a grandfather shared a sweet story about his grandchildren asking him to draw the water when they colored together. They knew his shaking would make good waves.
A mother recounted the upsetting experience of shaking uncontrollably while trying to count out change at a cash register. Her 10-year-old son reached out to help, bringing her to tears with the gesture.
They also share tricks they've found to make life easier and talk about hope for new research that may bring new treatments.
They all want to see more people become aware of ET and what it means for those who live with it. For Humitz, the group has been a tremendous help.
"They're an inspiration to me, and I hope I'm some kind of inspiration to them," said Humitz. "We support one another and we get through it. I always call them the movers and shakers of America. We're the movers and shakers of America."
To learn more about the Metro Detroit Essential Tremor Support Group or for information about the group forming in Windsor, contact Tom Pilarski at firstname.lastname@example.org or 248-672-8448.
Click here to find out more about the Essential Tremor Awareness Walk on Saturday, March 22.
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