Monday, December 30, 2019

Anterograde amnesia

Caitlin Little’s parents spend every waking minute searching and hoping that life will soon go back to what it looked like before Oct. 12, 2017.

It was on that day that Caitlin, now 17, collided head-to-head with one of her cross-country teammates at school, and suffered a traumatic brain injury. The frightening symptoms appeared right away. After practice, when Caitlin walked with her mom Jennifer to their car, she just stared at the door.

“She didn’t know how to open it,” says Jennifer, 47, of Greensboro, North Carolina. “It was very concerning.”

As the days went on and Caitlin became even more confused, doctors told Jennifer and her husband Chris, 53, not to worry.

“They said she had a concussion and that it would go away in a few weeks,” she tells PEOPLE, “but it only got worse.” 

Every new memory seemed to vanish. “She wouldn’t remember that she’d brushed her teeth or that she’d just eaten,” says Chris.

Diagnosed with anterograde amnesia, an exceptionally rare condition that affects one’s ability to make new memories, Caitlin began to wake up every morning thinking it was the morning of the accident.

The family says one doctor said that Caitlin was “making it up” and just to “drop her off at school.” And another, says Jennifer, “gave a plausible explanation that it would take three to six months to heal.”

As they “sort of cocooned her,” she explains, “we saw her memory last from 10 minutes to 30.” And six months after the accident, she was able to hold her memories for about four to five hours.

Since then the family has sought out specialists around the country, “hoping someone can fix our daughter,” says Jennifer. They’ve already spent their life savings and, while a GoFundMe account has helped, the bills keep mounting.

Caitlin’s future looked promising and the family thought they were on the right path. By the summer of 2018, her memory lasted about 10 hours before it “reset” back to the day of the accident. She went back to school and started to learn how to play the guitar.

“She was clear-minded as long as she was running,” says Jennifer, “and could still do eight miles a day.”

Caitlin, who turned 17 last week, would frantically record everything she did in a journal, so she’d remember it all when she woke up the next day.

“She’d ask us tough questions like, ‘Do I have friends anymore?’ [and] ‘Am I a burden to my family?'” says Jennifer. “It was excruciating to watch her realize that we dealt with this every single day, but a blessing to see her improve and have her memory last longer.”

That blessing was shattered after a regular routine exam during a visit to her pediatrician in September 2018 revealed that Caitlin’s oxygen levels were critically low because there was limited blood going to the right side of her brain.

Caitlin was referred to a cervical chiropractor, who told them a misalignment between her skull and the base of her spine was cutting off blood flow to her brain.

But the adjustment made to her neck ultimately left Caitlin unable to move and in excruciating pain. Procaine injections, prescribed by another doctor, relieved the pain and restored her mobility but made her memory problems worse than before.

“Her memory went [from 10 hours] to 60 seconds right before our eyes,” says Jennifer. “She just disappeared, and it’s been like that ever since.”

The mom adds: “It’s a pain you cannot touch for a parent. They talk about the broken heart and how time heals everything. Time is not healing this.”

Caitlin can still remember everything about her life up to the day of the accident. But after the collision, she can only retain new memories for a minute at a time, before her brain “resets” and she forgets everything that just happened.

The Littles have been told time and time again that there is nothing anyone can do to get the old Caitlin back. Yet her family won’t accept it — and refuse to give up hope.

Doctors in Texas who practice integrative medicine with detoxing and nutrition weren’t able to help. And no one in North Carolina has any concrete answers. Three times a week Caitlin sees therapist Cheryl Dalton, who does structural integration, and has helped with the immense pain Caitlin has throughout her body.

“We’re running out of time and money,” says Chris, “but we will never stop looking for a cure.”

Jennifer and Chris try to stay strong, but seeing Caitlin get older and yet stuck in the past is never easy.

“She doesn’t have friends,” says Chris. “She doesn’t go see anyone. She would furiously scribble notes and write in her diary things that she wanted to remember for that day. There were things that she hoped for for tomorrow, but that’s all gone because with a one-minute memory she’s not stressed out about anything. I’m really torn from that. I am horrified that she doesn’t even recognize how precarious her situation is and I’m also grateful that at least she’s spared that pain.”

Courtesy of my daughter

One specialist, Dr. Justin Feinstein, Ph.D. — who works with people who have suffered from brain injuries and recently started consulting on Caitlin’s treatment — says “this is a very serious injury.”

“What happens when there’s a hit to the head is that the brain ends up moving back and forth within the skull,” he says. “The sheer force of impact causes the brain to usually hit the other side and bounce backwards. The areas of her brain that are connecting cables delivering information to and from different regions, called the white-matter tracks, were likely damaged by the brain injury.”

Since then the family has sought out specialists around the country, “hoping someone can fix our daughter,” says Jennifer. They’ve already spent their life savings and, while a GoFundMe account has helped, the bills keep mounting.

Jennifer has been on family leave from her elementary school teaching job ever since the accident, and Chris has had to cut back his hours during home improvements. Many of the specialists they’ve seen and tests Caitlin has undergone have also not been covered by insurance.

“We can only do so much now for Caitlin with such limited resources,” says Chris, adding that except for Dr. Feinstein, the family can’t find anyone in the U.S. who will eagerly take on their daughter’s case. “We’re running out of time and money.”

The ordeal has also taken its toll on Caitlin’s siblings —Sarah, 18, Benjamin, 14, and Daniel, 11. “It’s very stressful for them,” says Chris, “and I worry that they feel like they’re left out.”

Today, Caitlin lives her life in complete confusion. She has Post-it Notes scattered throughout their Greensboro home — reminding her of everything from the color of the family’s new van (gray) to the names of their new cats.

They try to keep her room and closet exactly as they were to avoid confusion. “It simplifies all our lives,” says Jennifer. “When people give her a new coat or pair of shoes, she’ll hang it in Sarah’s closet because she thinks it doesn’t belong to her.”

Caitlin pitches in around the house (“She’s always the first one to unload the dishes, empty the trash can, feed the animals,” says Chris, “because these are all things she’s familiar with”) and enjoys family trips to the thrift store or the farmers market.

And during a short trip to Myrtle Beach last month, Caitlin even went running on the beach. “We still see our spunky and smart Caitlin shine through,” says Chris.

Chris and Jennifer have to always be with Caitlin to reassure her that she’s okay — and yet they know that’s far from the truth.

“In the first year I never doubted that Caitlin would get better,” says Chris. “Now I worry about what will happen when we’re no longer around to care for her. I’m horrified that someday she’s going to wake up and look in the mirror — and a 35-year-old woman’s going to look back at her. And she’s going to wonder, ‘What in the w orld’s going on?’ For her it’ll be like the blink of an eye.”

A 22-year-old man had to pull out all the stops to make his fiancée fall in love with him every day for two months after she suffered injuries from an accident that left her with a severe case of amnesia, just like Adam Sandler and Drew Barrymore‘s characters in 50 First Dates.

Li Huayu has been caring for his 24-year-old fiancée, Maruyama, ever since she was hit by a car while riding her bicycle to work in February of last year, just five months before they were set to marry. After the accident, Maruyama experienced amnesia and could not remember her family, or even what “family” meant, she said in an interview on the Japanese television show, TBS’ Yume Special.

“The doctor has yet to inform me, it is difficult to know if my memory will return,” she explained on the show. “I live my life day-by-day. My boyfriend and I were scheduled to get married. However, we had to postpone it.”

Amnesia can be caused by damage to areas of the brain that are important to memory, and there is no specific treatment for the condition, according to Mayo Clinic. People with amnesia typically have issues with their short-term memory and may be able to recall things from childhood, but not something like the current year or month.

Maruyama says her case was initially so severe that she often forgot what she looked like, but could remember how to do certain physical activities.

 “I don’t remember what I look like,” she said during the TBS special. “So I look in the mirror and tell myself, ‘Oh, this is my face.’ What I do remember is what my body remembers. For example, when you use the restroom, I can do that. The most helpful was I remembered how to use my cellphone.”

In the weeks that followed her accident, Maruyama said she would wake up and forget what had happened the day before, and her life was constantly starting over day-to-day.

 “It used to be that I forgot what happened the day before so every day was a reset,” she said. “For about two months, I was resetting every day.”

During those two months, Li did his best to be supportive of Maruyama, who often was unsure whether he was a friend. Though she felt it would be best if they ended their relationship to spare him from her “overwhelming” situation, Li convinced his love that he wanted to stay by her side.

“He liked how I used to be and he told me, ‘I like the way you are now.’ He was the only one who told me that,” said Maruyama, who keeps a daily journal at the urging of her doctors. “That’s when I remember how it felt to like someone. I want to tell him I fell in love with you all over again, for the second time.” 

She continued: “I wasn’t the girl I used to be. I was hesitant but he told me, ‘If you don’t have memories, we can make new ones.’ “

Every morning, Li would begin the routine of reminding his sweetheart who he was, how they had fallen in love and what had happened to her in the accident. 

After witnessing his commitment, Maruyama decided to propose to Li, and reaffirm that her love for him had not gone away and so enlisted the show to help her propose at Disneyland as it assists people around the country make their dreams come true.

“My doctor has told me due to my amnesia my memory loss may be irreversible, there’s a 50 percent chance,” Maruyama said in her proposal, which was filmed by the show. “Despite that, will you be with me?”

Li immediately said yes.

“I promise to not go anywhere and she will be well taken care of by me,” Li said while on the show. “There’s a possibility that she may forget again or she may remember like she has been. But even if she loses her memory again, I won’t leave her side. I chose her.”

The couple’s inspiring love story has a lot of similarities with the 2004 film 50 Fist Dates. In that film, Sandler’s character Henry meets Lucy (played by Barrymore) and is immediately smitten. However, due to a serious accident leaving Lucy with amnesia, she does not remember him the following day.

Enamored, Henry is determined to make their relationship work, even if that means treating each day as a first date. Love, of course, overcomes their struggles in the end.

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