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‘Jeremy’s Journey’ — teen with Tourette syndrome getting closer to scheduling brain surgery

Now 19, Jeremy Schreifels is still waiting for his much-anticipated Deep Brain Stimulation (DBS) surgery that will hopefully alleviate the often-violent tics he has suffered with since he was 3.

“I feel like my life has been at a standstill, and at times I feel like I’m going backwards,” Jeremy said.

With Jeremy, the disorder is throughout his entire body. At its worst it has caused him to jump, or his arms to jerk, his shoulders to shrug or his head to turn, almost like he’s being slapped or punched in the face by an invisible hand.

In the past, his vocal tic has sounded like he’s sneezing.

Also, the tics have been so severe that he would get hurt – tripping and falling, hitting his head on something, crashing into things.

Last year, beginning in May 2021, the community came together to raise more than $245,000 to pay for the surgery and the related preliminary and follow-up costs.

His health insurance won’t cover it because it’s still considered experimental for Tourette syndrome, although it has been approved for Parkinson’s disease.

The procedure involves implanting an electrode deep within the brain to deliver stimulation that is controlled by a pacemaker- like device placed under the skin of a person’s chest with a wire under the skin connecting the device to the electrode.

Jeremy and his parents, Ronnie and Jennifer Schreifels, had hoped the surgery would happen by now, but in the past months they’ve encountered a number of setbacks, including Jeremy getting COVID.

For the past year, the medication he currently takes has alleviated his violent tics, but it has also altered his personality, making him either emotionally flat or in an angry rage.

In addition, the doctors kept postponing a surgery date, because surgery is a last resort and they want to do everything else they can first, Ronnie Schreifels explained.

But now, Jeremy is about to take a step closer to a surgery date. Beginning this coming week, he will undergo an intensive treatment program to regulate his current “cocktail” of medications and to eliminate the medical cannabis he has been using since he was 14.

The treatment also includes behavioral therapy, which will help him be able to self-control his anxiety level, which is exacerbated by Tourette syndrome.

From the beginning when they first talked to Jeremy’s team of doctors at UF Health Shands, they said lowering the anxiety is key to the surgery’s success, Schreifels said.

“There are no guarantees that the surgery will even work, so this will help him no matter what,” he said.

Jeremy said he’s a little nervous, but ready for this next leg of his journey.

“Tourettes has set me back for the longest time,” he said, adding that he’s willing to do whatever it takes to move forward with his life.

This past year he’s been working for Flash Trash garbage collection service, whose owners Jeremy said have been extremely understanding of his situation, even of his outbursts of anger.

At one point he had wanted to go into law enforcement, but after thinking it through he realized it “wouldn’t be a good idea to give a gun to someone with Tourettes,” he said.

“I don’t know exactly what I want to do, but I know I want to do something where I can help people,” he said.

Ronnie Schreifels said he and his wife want people to know they are “beyond grateful” to everyone who has helped them along the way.

“We’ve been wanting to say something for the longest time,” he said. “People ask about Jeremy all the time, but there hasn’t been any news until now.”


Local
Homemade
Ed’s WorkShop and 'June Bugg'

Editor’s note: According to the Small Business Association, an estimated 50 percent of the 31.7 million small businesses in the U.S. are run from home.

That’s about 15 million people who manufacture products or provide services using their homes as their base of operation.

The Chronicle’s occasional series, Homemade, tells the stories of, not just a person’s home-based business, but of the why and the “how-I-got-here” behind it.

Today we’re telling the stories of three woodcrafters: Ed Bryant and his partner June Tolputt, and in a second story, their friend, Dawn Horton.

•••

Ed Bryant can tell you the story of a tree.

“When I cut a log and I split the log, I’m the first one to see the inside, and let me tell you, some trees are prettier inside than others,” he said from his workshop where, if he’s not out hunting or fishing, he’s there with his saws and sanders and his lathe.

He also has a portable sawmill.

mattbeck / Matthew Beck Chronicle photo editor 

Ed Bryant uses a gouge to carve out a bowl from a solid piece of cherry wood. The wood is turned on a full-size lathe that spins the wood as it is carved. “Camphor is one of my favorite woods; cherry is a favorite, too,” he said. “They’re all different.” Bryant and June “June Bugg” Tolputt, of Ed’s WorkShop, both woodworkers and woodcrafters, live on a piece of property in Inverness, surrounded by trees. Ed makes bowls and boxes and platters, furniture and big stuff. June generally makes smaller, more delicate things.

“Camphor is one of my favorite woods; cherry is a favorite, too,” he said. “They’re all different.”

As he pointed out the pattern in a slice of wood, he explained the various lines.

“When you see the outside of a tree, when you see wrinkles, that’s where the tree moved, shifted in the wind.

“And the wrinkles on the outside will be bright colored lines on the inside. The burls, that’s where the tree got damaged and healed itself,” he said.

“This is sweet gum I got from some people who cut down a massive tree and gave it to me. The wood was snow white, but it sat for a year and started to turn black. That’s called spalting, dark lines. It’s actually a fungus in the bark.”

Bryant picked up another piece of wood, ambrosia maple. “A beetle bites it, and everywhere the beetle bites it makes lines in the wood,” he said. “It darkens, and some of it will turn pink, and it’s really beautiful.”

Ed Bryant and June “June Bugg” Tolputt, of Ed’s WorkShop, both woodworkers and woodcrafters, live on a piece of property in Inverness, surrounded by trees.

Ed makes bowls and boxes and platters, furniture and big stuff.

June generally makes smaller, more delicate things, ink pens and trays and one-of-a-kind things from Bryant’s discard pile, although she’s not afraid to tackle something big, like making a planter from a tree stump.

mattbeck / Matthew Beck Chronicle photo editor 

Wooden items like these bowls, lazy Susan, candleholders, vases and pens are just some of the ornate wooden pieces created by Ed Bryant and Jane Tolputt.

She especially likes the wood pieces Bryant has thrown in the burn pile, pieces that are filled with wormholes. She’ll look them over, finish them, put a light in them and sell every one of them at a craft show or festival.

“I do a lot with magnolia seed pods and pine cones,” Tolputt said. “I stepped on a seed pod one day and said, ‘I can do something with that.’

“Ed and I met about three years ago, and I watched him turn (on the lathe), and I said, ‘I want to do something.’ So, the first thing I made was an ink pen,” she said. “It took me four hours to make, but now I can do one in 10 minutes.

“He’s a good teacher,” she said, “and I’m a good learner.”

It’s in their blood

Tolputt grew up on a dairy farm in upstate New York, one of six kids.

mattbeck / Photos by Matthew Beck / Chronicle photo editor 

Wood chips are strewn about the workshop June Tolputt works in with her partner Ed Bryant. She carves the bowl above from a block of spalted sweet gum.

220501-CC-wood-5.jpg

“My dad had a sawmill and I started using a chainsaw when I was 8 or 9,” she said. “We heated with wood, so with six kids, we all took turns cutting wood.”

Bryant is from Orlando, but his grandfather was a coal miner from Jasper, Alabama, who was also a cabinetmaker and made violins and fiddles.

“He died when I was 14 or 15, but I watched how everything he did was perfect; everything he made was perfect,” Bryant said. “I was in construction and did a lot of framing. I’ve always enjoyed working with wood.”

mattbeck / Matthew Beck Chronicle photo editor 

Wood shavings fill the floor at Ed Bryant's feet in his Inverness woodturning shop. Above, Bryant uses a lathe and a gouge to turn a solid chunk of cheery into a perfectly smooth bowl.

With his portable sawmill, he meets all kinds of people, some who, like him, love wood, and others who just want something done with their trees.

“People call and say, ‘Hey, I’ve got logs down. Can you come and cut them?’” he said.

That’s how he and Tolputt met Dawn Horton, another woodcrafter who has become a friend and a business partner of sorts.

At craft shows and festivals, Horton and Tolputt always share a booth or have their tables next to each other. Bryant and Tolputt cut wood for Horton to use and Horton adds her laser cutting or engraving touches to some of Tolputt’s pieces.

“We’re separate businesses, but we’re working on merging our logos and our webpages together,” Horton said. “We met by accident. My daughter had cut down a tree and I was looking for someone to cut the tree into slices so I could use them as boards that I make everything on.

mattbeck / Matthew Beck Chronicle photo editor 

June Tolputt turns a block of spalted sweet gum wood in the workshop where she and Ed Bryant create a variety of wooden décor. They use metal gouges to carve their work.

“Someone directed me to Ed and June and they invited me to come to the workshop, and we’ve been together ever since,” she said.

“She was paying a fortune for that pressed board, and now she’s making stuff out of nice, pretty wood,” Bryant said.

It’s all about the wood.

“I had a guy give me wood from an old, mid-18th century ship,” Bryant said. “When you’re a woodworker, you never have enough wood. You’re always looking for more. We’ll be riding down the road and see someone cutting down a tree and we’ll stop and they’ll say, ‘Take all you want!’

“You cherish it, and you want to make stuff, but you don’t want to use it all up,” he said, adding, “I have more wood than I can use in two lifetimes.”

INFO:

Facebook: www.facebook.com/EDSWORKSHOP2016

Website: www.edsworkshop.com

Email: adaired1@gmail.com

Phone: 352-637-9688


Local
‘Horton House Handcrafted Wood Decor’

As a registered nurse, Dawn Horton often sees people at their worst, when they’re sick or in pain.

Sometimes her patients don’t get better. Sometimes they die.

“Nursing is definitely stressful, especially through COVID,” Horton said. “I was the director of nursing at an assisted living facility when COVID hit. Everything was new. We had to follow new protocols, lock down the building.

“When everyone had to wear masks, I noticed a lot of anxiety ... nobody knew what COVID was,” she said. “We had to tell people they couldn’t see their families, and I saw a lot of decline with the residents because of an inability to interact with people. We lost a lot of staff and residents because of COVID.

“It was so stressful, I left that job,” she said.

She returned to a job as a home health nurse, the field in which she started and the field she’s in now.

Horton also took up woodcrafting at that time as a way of de-stressing.

mattbeck / Matthew Beck / Chronicle photo editor 

Dawn. Horton says these types of wooden welcome signs are one of the most popular items she creates.

“I began making things at home because I could take my mind off things and my responsibilities,” she said. “I didn’t have to fix anything; all I had to do was create. As a nurse, we have people’s lives in our hands. You make a wrong decision as a nurse and you could kill somebody.”

She bought a Cricut digital die-cutting machine and started working with vinyl and then switched to wood and bought a Glowforge laser cutter and started her home-based business, The Horton House, making handcrafted wood signs with cut-outs and engraving and other wood crafts.

‘Somebody told me I couldn’t do it’

Dawn Horton, now 58, got a rough start in life, dropping out of school in the eighth grade in Maryland.

“I moved from place to place, trying to find a home,” she said.

Her mom was in Florida, Pinellas County, and at 17 she moved there, too.

“I had my kids here, then I moved to Georgia and raised my kids there,” she said. “When I eventually came back to Florida, I didn’t want to go back to Pinellas County, so I found Citrus County.”

She had always supported herself by working at a variety of jobs, burger places like McDonald’s or Bob’s Big Boy or doing medical billing.

At 20, she got her GED. When her youngest daughter was 10, she and her daughter did some modeling together, and then Horton modeled and did some acting on her own.

“Then I decided I needed to do something to give back, so in my late 40s I went to nursing school,” she said. “Somebody told me I couldn’t do it, that I was ‘too stupid’ because I had no education. So I said, ‘Watch me.’

“I took the entrance exam and got into all accelerated classes, except for math. I’m terrible at math,” she said. “I set a goal: I had to finish nursing school by the time my youngest graduated high school. I graduated 10 days before she did, in 2011.”

From there, Horton, who had been in the nurse intern program at Citrus Memorial Hospital, now HCA Florida Citrus Hospital, worked as a registered nurse in the home health department.

She did that until 2015 then worked as director of nursing for Comfort Keepers, an assessment RN for Florida Caregivers and taught at the College of Central Florida as an interim clinical educator.

“I love teaching, and I love that with home health nursing teaching is part of the job,” she said. “It’s education and wound care, chronic disease management. We get to see the patient through to progress or to transition to hospice.

“It’s wonderful, because we form bonds with our patients, and they come to trust us.”

As for crafting, Horton said it’s something she has always done whenever she could.

“I’ve been crafting since I was little,” she said. “When we lived in Georgia, we lived in a 220-year-old grist mill on 170 acres, and the whole third floor of the grist mill was my craft room – it was huge. I did all kinds of things, painted, made jewelry, whatever I could make.”

She said what she’s doing now, laser cutting and engraving, is more high-tech, but can still be creative, especially as she hand-paints her creations.

And it’s something she needs, because even in a job you love, some days are stressful.

“Yesterday, I had a very long day, and I went home and started designing a sign for someone,” she said. “It lets me put my mind on other things. I can’t fix people; I don’t have any control over my patients or their disease, but I do have control over this.”

As part of Creative Connections Local Artisans (CCLA), Horton shows her creations at local craft shows and festivals. Also, she regularly posts photos of her work on Facebook at www.facebook.com/Hand craftedattheHortonHouse.

Email: hortonhouse@ tampabay.rr.com.


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