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New Jersey man with epilepsy uses hand-painted seashells to help find a cure

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New Jersey man with epilepsy uses hand-painted seashells to help find a cure

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Greater epilepsy awareness could be as simple as a walk on the beach, thanks to one New Jersey man.

Kyle Adamkiewicz, 33, has lived with epilepsy since being diagnosed at age 6. He is now combining his love of art with the power of nature to help bring his seizure disorder into the spotlight.

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In Oct. 2022, Adamkiewicz began collecting seashells from the New Jersey shore, then painting and decorating them with heartfelt messages in search of a cure. He places his works of art along the seaside boardwalks in the hopes that they will inspire strangers to spread the word — and the shells.

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“It started with just painting a few shells, and I figured no one would find them,” Adamkiewicz said in an interview with Fox News Digital. 

“And then I saw people posting them online, and writing so many good and positive comments about the shells and about finding a cure for epilepsy. That motivated me to keep making more and more and more.”

Kyle Adamkiewicz, shown above, now 33, has lived with epilepsy since he was diagnosed at age 6. He is combining his love of art with the power of nature to help raise awareness of his disease. (Adamkiewicz family)

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“And now they have been around the entire world.”

Adamkiewicz doesn’t drive, so his parents — Chuck and Laurie Adamkiewicz — drive him to place his shells.

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“We have shells with us in the car all the time, and he places them in different locations, different towns,” his mother told Fox News Digital.

Adamkiewicz estimates that he’s painted some 1,100 shells so far.

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Many include messages about finding a cure for epilepsy, but he has also created themed designs for various occasions, like Shark Week and Halloween.

Kyle Adamkiewicz

Adamkiewicz has painted over 1,000 shells so far. “Our entire living room consists of nothing but shells and paint,” joked Adamkiewicz’s mother. (Adamkiewicz family)

“Our entire living room consists of nothing but shells and paint,” joked Adamkiewicz’s mother.

In addition to a hand-painted design, each shell contains Adamkiewicz’s initials, the year he decorated it and a QR code.

When people find the shells and scan the QR code, it takes them to a website. From there, they can access Adamkiewicz’s Facebook group, his Instagram account and a GoFundMe page set up to help raise funds for people to get “seizure alert” dogs.

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It also links to the Epilepsy Foundation website, where people can learn what to do if they witness someone having a seizure.

“Most people don’t really know how to handle someone if they’re having a seizure,” Adamkiewicz told Fox News Digital. “They just turn their back and walk the opposite way.”

Epilepsy shell

In addition to a hand-painted design, each shell contains Adamkiewiczs’s initials, the year he decorated it and a QR code. (Adamkiewicz family)

“One out of 26 people in the world have epilepsy, but it’s basically a hidden disease that nobody really wants to know about.”

The Adamkiewicz family has a map of the world hanging on the wall — with pushpins to mark where the shells have been found, they told Fox News Digital.

In addition to locations across the U.S., shells have also been scanned in Mexico City, Greece, Italy, Panama, Canada, Nova Scotia, France, South Korea and Germany, Adamkiewicz said.

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“One out of 26 people in the world have epilepsy, but it’s basically a hidden disease.”

“People will find the shells and take them to those places,” Adamkiewicz said. “And sometimes people will ask me for shells to take to wherever they are traveling.”

He’s also partnered with the hospital to get kids with epilepsy involved in his project, bringing shells in for them so they can paint their own designs.

Touching lives

Beyond helping to find a cure, Adamkiewicz has a goal of reducing bullying of people with epilepsy.

Kyle and Laurie Adamkiewicz

Adamkiewicz is pictured with his mother, Laurie Adamkiewicz. In April, he underwent a procedure to implant a responsive neurostimulation (RNS) device in his brain, which will gather data about his seizure activity. (Adamkiewicz family)

“When I was growing up, if my parents or brother weren’t there, I was always made fun of in school and in the neighborhood,” Adamkiewicz said. “Especially right after I had a seizure — the kids would just stare at me and make fun of me.”

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He went on, “I want people to know it’s OK to be friends with someone with epilepsy.”

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At one point, during second and third grade, he estimates that he was having 100 seizures per day.

“It’s been a very hard and lonely life for Kyle, and very painful to see as a mother and father,” Laurie Adamkiewicz added.

The goal, she said, is that the shells will help to make life a little easier for those with epilepsy — and their families.

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Epilepsy shells

Adamkiewicz said his seashell project has been a therapeutic endeavor for him. “If it’s been a really bad day, that’s mostly what I’ll be doing,” he said. (Adamkiewicz family)

Adamkiewicz’s mother recalled a man who posted about a personal experience on the Facebook group.

“His son had passed away, and the man goes to the ocean every morning to say good morning to his son,” she said. “And there was the epilepsy shell, and he said he started crying. He said it was just like a gift to him.”

She added, “You never know whose lives you’re touching.”

Taking control

Since age 12, Adamkiewicz has been a patient at NYU Langone’s Comprehensive Epilepsy Center, one of the largest programs in the nation, where he’s had a series of brain surgeries.

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In April, he underwent a procedure to implant a responsive neurostimulation (RNS) device in his brain, which will gather data about his seizure activity.

Neurosurgeon Peter Rozman, M.D., performed the surgery alongside his mentor, Werner K. Doyle, M.D., Adamkiewicz’s longtime doctor.

laurie-kyle-adamkiewicz

Adamkiewicz and his mom, Laurie Adamkiewiz, are pictured with some of his painted shells. (Adamkiewicz family)

“This system has the capacity to actually record brain activity in the form of electrical waves that detect when the seizures start, so it can deliver an impulse to the brain at that time, with the goal of aborting the seizure,” Rozman said in an interview with Fox News Digital.

The data collected by the device is sent to the neurologist, who uses that information to program the device to better capture and treat the seizures, he said.

“Over time, people see more and more improvement in their seizures,” Rozman said.

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Rozman praised Adamkiewicz’s seashell project, emphasizing the importance of increasing awareness of the condition.

“And it gives him an outlet, too,” the doctor said. “Having other people to talk about your condition with and being part of a community can be very helpful.”

Epilepsy shell

Each shell contains a QR code that a person can scan to access information, resources and fundraisers for epilepsy. (Adamkiewicz family)

In a way, Rozman said, Adamkiewicz is turning his epilepsy into a good thing.

“It’s beneficial on both sides — for raising awareness and also allowing Kyle to have more control and to drive the story,” he said. 

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“It can be such a devastating thing to have to deal with on a daily basis, and having some sort of license and control over that is really important.”

Adamkiewicz agreed that his project has been a therapeutic endeavor for him.

“We want to teach people how to be kind, and how to help.”

“If it’s been a really bad day, that’s mostly what I’ll be doing,” he said.

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“Like earlier today, I was painting some shells and had my ear buds in, just listening to some music. I’m just so focused on painting the shells that I zone everybody else out.”

Epilepsy shell

Adamkiewicz’s shells have been found in many cities and countries around the world, including in Paris, France. (Adamkiewicz family)

Adamkiewicz and his mother are also working on a children’s book to teach kids more about epilepsy and what to do if someone is having a seizure.

“When someone has a seizure, it can be frightening to other children,” said Laurie Adamkiewicz mother.

For more Health articles, visit www.foxnews/health 

“So the goal is to get some information out there, to take the stigma away from the person who has epilepsy … We want to teach people how to be kind, and how to help.”

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Chronic Pain Afflicts Billions of People. It’s Time for a Revolution.

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Chronic Pain Afflicts Billions of People. It’s Time for a Revolution.

“In the beginning, everyone thought they were going to find this one breakthrough pain drug that would replace opioids,” Gereau said. Increasingly, though, it’s looking like chronic pain, like cancer, could end up having a range of genetic and cellular drivers that vary both by condition and by the particular makeup of the person experiencing it. “What we’re learning is that pain is not just one thing,” Gereau added. “It’s a thousand different things, all called ‘pain.’”

For patients, too, the landscape of chronic pain is wildly varied. Some people endure a miserable year of low-back pain, only to have it vanish for no clear reason. Others aren’t so lucky. A friend of a friend spent five years with extreme pain in his arm and face after roughhousing with his son. He had to stop working, couldn’t drive, couldn’t even ride in a car without a neck brace. His doctors prescribed endless medications: the maximum dose of gabapentin, plus duloxetine and others. At one point, he admitted himself to a psychiatric ward, because his pain was so bad that he’d become suicidal. There, he met other people who also became suicidal after years of living with terrible pain day in and day out.

The thing that makes chronic pain so awful is that it’s chronic: a grinding distress that never ends. For those with extreme pain, that’s easy to understand. But even less severe cases can be miserable. A pain rating of 3 or 4 out of 10 sounds mild, but having it almost all the time is grueling — and limiting. Unlike a broken arm, which gets better, or tendinitis, which hurts mostly in response to overuse, chronic pain makes your whole world shrink. It’s harder to work, and to exercise, and even to do the many smaller things that make life rewarding and rich.

It’s also lonely. When my arms first went crazy, I could barely function. But even after the worst had passed, I saw friends rarely; I still couldn’t drive more than a few minutes, or sit comfortably in a chair, and I felt guilty inviting people over when there wasn’t anything to do. As Christin Veasley, director and co-founder of the Chronic Pain Research Alliance, puts it: “With acute pain, medications, if you take them, they get you over a hump, and you go on your way. What people don’t realize is that when you have chronic pain, even if you’re also taking meds, you rarely feel like you were before. At best, they can reduce your pain, but usually don’t eliminate it.”

A cruel Catch-22 around chronic pain is that it often leads to anxiety and depression, both of which can make pain worse. That’s partly because focusing on a thing can reinforce it, but also because emotional states have physical effects. Both anxiety and depression are known to increase inflammation, which can also worsen pain. As a result, pain management often includes cognitive behavioral therapy, meditation practice or other coping skills. But while those tools are vital, it’s notoriously hard to reprogram our reactions. Our minds and bodies have evolved both to anticipate pain and to remember it, making it hard not to worry. And because chronic pain is so uncomfortable and isolating, it’s also depressing.

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7 blood pressure mistakes that could be throwing off your readings

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7 blood pressure mistakes that could be throwing off your readings

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Several key mistakes could throw off the accuracy of blood pressure readings for people who take them at home.

The average “normal” blood pressure is 120/80, according to the American Heart Association.

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Almost half of all U.S. adults have elevated blood pressure (systolic pressure between 120 and 19 and diastolic pressure less than 80). High blood pressure (hypertension, which is when the systolic pressure is between 130 and 139 or diastolic pressure is between 80 and 89) can raise the risk of heart attack and stroke if left untreated, per the AHA.

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“It is very common to see patients with bad data,” said Dr. Bradley Serwer, a Maryland-based cardiologist and chief medical officer at VitalSolution, an Ingenovis Health company that offers cardiovascular and anesthesiology services to hospitals.

The average “normal” blood pressure is 120/80, according to the American Heart Association. (iStock)

“It is essential to follow the proper standardized instructions.”

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The cardiologist shared with Fox News Digital the following common mistakes he often sees patients make when monitoring their blood pressure.

1. Using the wrong arm position

Certain arm positions can lead to inflated results and misdiagnoses of hypertension. This was supported by recent research from Johns Hopkins Medicine.

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People who rested their arms on their laps drove up the top number in the blood pressure reading (systolic pressure) by nearly 4 mmHg, while leaving their arm hanging at their side increased it by nearly 7 mmHg.

For the most accurate results, the guidelines are to rest the arm on a desk or another firm surface at the same level as the heart, Serwer told Fox News Digital.

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2. Sitting in the wrong position

“The proper position is to sit upright with your feet on the floor and your legs uncrossed, resting your arm on a flat surface that is level with your heart,” Serwer advised.

Blood pressure

Certain arm positions can lead to inflated results and misdiagnoses of hypertension, research has shown. (iStock)

3. Using the wrong type or size of cuff

If the cuff is too large or small, measurements will be abnormal, the cardiologist cautioned. 

“Most blood pressure monitors use either an arm cuff or a wrist cuff,” he said. “Arm cuffs tend to be more accurate and require fewer steps to ensure accuracy.”

4. Not calibrating the cuff

Serwer said he typically asks all patients to bring their home cuff to the office, where he first measures their blood pressure manually and then uses the patient’s cuff.  

“We can then assess the accuracy of their cuff,” he said.

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5. Not allowing enough time to equilibrate

The most accurate results are obtained after sitting in a low-stress environment for five minutes, Serwer noted.

“Know your blood pressure, even if you are healthy.”

6. Drinking caffeine beforehand

“Avoid stimulants before measuring your pressure, as caffeine will raise it,” Serwer said.

7. Checking at different times of day

When taking blood pressure, Serwer recommends checking it twice and waiting at least one minute between measurements. 

     

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“Blood pressure fluctuates throughout the day, so checking your pressure at the same time each day gives us a better trend,” he added.

Serwer also advises his patients to track their blood pressure readings in a log.

Blood pressure reading

“If the average blood pressure reading is greater than 130/80, they have stage I hypertension and should be evaluated by their primary care provider,” a cardiologist said.  (iStock)

“If the average blood pressure reading is greater than 130/80, they have stage I hypertension and should be evaluated by their primary care provider,” he said. 

“If their blood pressure is greater than 180/100 or if they have symptoms of chest pain, shortness of breath or severe headache, they should seek immediate attention.”

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Even if there are no other symptoms other than high blood pressure, Serwer emphasizes that people shouldn’t wait until they have complications before treating hypertension.

“Heart attacks, strokes, renal failure and peripheral vascular disease can often be avoided with early interventions,” he said.

Healthy living

In most cases, making lifestyle changes such as improving your diet, exercising regularly and maintaining a healthy weight can help keep blood pressure within a safe range, according to the AHA. (iStock)

“Know your blood pressure, even if you are healthy.”

In most cases, making lifestyle changes such as improving your diet, exercising regularly and maintaining a healthy weight can help keep blood pressure within a safe range, according to the AHA.

For more Health articles, visit www.foxnews.com/health

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When necessary, a doctor can provide guidance on medications to treat hypertension that does not respond to lifestyle changes.

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Words and game of Scrabble keep married couple in wedded bliss for decades

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Words and game of Scrabble keep married couple in wedded bliss for decades

A married couple who have long enjoyed the game of Scrabble both together and separately before they even met are never at a loss for words — and attribute their wedded bliss in part to their love of the nostalgic game.

They’re still playing in tournaments built around the game decades after they began doing so.

Graham Harding and his wife Helen Harding, both in their 60s, have been married for over 20 years.

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They met in the 1990s at Scrabble tournaments, as news agency SWNS reported.

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But it was a “special match” in 2000 that brought the couple together — and has kept them together now.

Graham and Helen Harding on their wedding day. They’ve been playing in Scrabble tournaments for some 30 years.  (Courtesy Graham and Helen Harding via SWNS)

Graham Harding is from the East Berkshire Scrabble Club, while his wife Helen is from the Leicester Scrabble Club in the U.K.

They have been taking part in the UK Open Scrabble Championship in Reading this week.

“The more words you know, the more ammunition you’ve got.”

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“Scrabble is all about having a good vocabulary,” said Graham Harding, SWNS noted.

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“But it is a Scrabble vocabulary — not necessarily everyday English.”

Added Helen Harding, “The more words you know, the more ammunition you’ve got.”

Graham and Helen Harding at their wedding.

Graham and Helen Harding’s wedding cake. They bonded over their love of Scrabble – and are still playing in tournaments together.  (Courtesy Graham and Helen Harding via SWNS)

The couple said they were “vague acquaintances” for about five years after they first met.

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Then they got together after a special match in Swindon.

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They maintained a long-distance relationship before they got married in 2004.

The couple even brought their Scrabble board to their wedding. 

Graham and Helen Harding at their wedding.

The couple likely have played thousands of games between them.  (Courtesy Graham and Helen Harding via SWNS)

It featured a message with Scrabble pieces that said, “Congratulations on your wedding day” — while their wedding cake said, in Scrabble letters, “Helen and Graham.”

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They each took up the hobby early in life well before they met each other. 

The tournament that’s been taking place this week is the first since the COVID pandemic after a five-year break — and the couple has played some two dozen games in it as of Friday, SWNS reported. 

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