The One Thing That Didn't Go Away When This Man Lost His Memory

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As we’ve seen before, time and time againHumans of New York (HONY) knows exactly how to hit us in the feelings.

The outlet that tells the story of New Yorkers, one human at a time, has done it again. This time, HONY hit home with a man’s touching story about memory loss.

humans of new york image of man sitting on a bench with a newspaper
Via @humansofny on Instagram

In a recent HONY post, an anonymous man talks of dealing with the inability to remember specifics about his life as part of an unspecified hereditary condition. He says his memory loss has forced him to withdraw from most social interaction.

Group situations are especially hard because I can’t steer the conversation toward something I can remember,” the man told HONY. “And when I do get stuck, it’s more embarrassing. So I’ve missed weddings. I’ve stopped returning calls.”

man holding newspaper
Via @humansofny on Instagram

Despite this heart-breaking admission, the story has an uplifting angle. The man confides that he has a dear friend who won’t fade into the background.

I do have one friend who won’t give up on me,” the man told HONY. “He calls me from Florida. And if I’m trying to tell him about a bridge, he’ll list off every bridge in New York City until I remember the one that I’m trying to talk about.”

Here’s to true friends — the kind who don’t mind listing some bridges or repeating some things. The kind that can outlast memory.

Read the full post on Instagram here and here

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10 Books About Disease and Disabilty to Add to Your Reading List

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Last week, we asked our readers on Facebook to tell us about some of their favorite books pertaining to disease or disability. We received many wonderful responses and did a bit of literary research, too.

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Expecting Adam: A True Story of Birth, Rebirth and Everyday Magic by Martha Beck

Expecting Adam is Beck’s moving memoir of her and her husband, John, and their decision to carry to term their child with Down syndrome. Once Adam is born, he becomes an impetus for a significant change in perspective for the Becks.

 

 

 

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Kedar, who has nonverbal autism, was just 16 years old when he published this compelling collection of autobiographical essays. Intended to defy common misconceptions about his disorder, Ido in Autismland demonstrates Kedar’s fiercely brilliant mind and provides readers with incredible insight into the world of autism. A must-read if you or a loved one has nonverbal autism.

 

 

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When one of his students mentions that he dreams of becoming an astronaut, Kersjes decides to take his special education class to space camp. Turns out, this is easier said than done. Kersjes must clear innumerable hurdles before taking the trip, including preparing his students, whose disabilities range from Down syndrome to Tourette syndrome to dyslexia, to spend six days living and training like astronauts.

 

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The Boy Who Loved Tornadoes by Randi Davenport

When Davenport’s son turned 15, he began demonstrating signs of a serious psychiatric disorder: he suffered horrifying hallucinations, became violent and sometimes didn’t recognize his own family members. Doctors were never able to pinpoint a diagnosis. This beautifully written and profound memoir is an important commentary on the state of the mental healthcare system in the United States.

 

 

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Don’t Worry, He Won’t Get Far On Foot by John Callahan

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What would you add to this list? Let us know in the comment section below.

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Why I Place a Christmas Wreath on My Parents’ Grave Every Year

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Since 2007, I’ve been placing a Christmas wreath on my parents’ grave. It doesn’t get any easier. As I secure the wreath to the grave, a swell of nostalgia encompasses me. I close my eyes and take in the familiar aroma of pine and memories of childhood come flooding back.

10408598_960403057732_2302712366337560804_n Mom and Dad always made sure Christmas was a special family time. Preparations began two weeks before. Tradition was important. I was raised in Stuyvesant Town in Manhattan with my brother, Bill, and my sister, Jane. Each December, in the center of our neighborhood, a set of beautifully decorated trees were set up. This is where we went to see Santa Claus.

My parents took great care to decorate our windows. One year, Dad used glass wax and cotton balls to simulate a snow scene on the glass. But the tree was the highlight. Dad would walk the streets looking for the perfect one. He’d carry it home, set it in its stand and let it fall into place. He’d decorate it with blue lights and old-fashioned balls. Each one was strategically placed. The biggest deal was the tinsel. No one could do it but Dad. He hung one piece at a time, and if you tried to help, it would be taken back down and rehung.

It was inevitable that I would grow up to cherish Christmas the way I do. My parents didn’t have much, but they made sure we celebrated the holiday in a big way. To this day, my husband, Jim, and I do the same for our children and grandson. In later years, I took over hosting. Mom and Dad came to all the Christmas pageants my children were in and visited for Christmas Eve and Christmas Day.

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After a series of strokes and a dementia diagnosis, Mom had to go into a nursing home. My father later joined her after breaking his hip. That year, I purchased a small Christmas tree; they kept it in their room until Dad passed away. He was told it was against the rules to leave the tree lit, so he’d wait until the head nurse went off duty to put the lights on, and set his alarm for the morning so he could turn it off before she returned. That explained why he was so tired during the Christmas season.

It’s funny how the familiar scent of a pine wreath could bring back so many years of fond memories. When I leave their grave, I turn around and look at the wreath and thank God I had Mom and Dad to create the traditions I continue today. I miss them terribly. But I know they’re together and happy that the legacy they began continues on.

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My husband, son, two daughters, son-in-law, and grandson with Santa.

For all of December, The Mighty is celebrating the moments we gave or received a gift that touched our lives in a special way. If you’d like to participate, please send a blog post describing this moment for you. Include a photo and 1-2 sentence bio to [email protected]. Hint! Some gifts don’t come in packages.

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When My Pop Pop Taught Me How to Face Alzheimer's Disease

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194513_10150158545580540_4259971_o (1) I’m 5 years old, sitting cross-legged on the carpet, and beneath an uneven flop of bangs, my forehead scrunches in frustration.

I cannot for the life of me remember where Piglet is hiding.

In front of me lay playing cards, all facedown, concealing two of every “Winnie the Pooh” character. The goal is simple. Find the pairs. Flip two cards over and remember their location so later you can match two Tiggers or two Poohs or two Roos. Whoever finds the most pairs, wins.

My Pop Pop sits across from me. His green sweater vest matches his eyes, and his tan corduroy pants match the sunspots on his head from summers at the Jersey Shore and winters in Florida. He has less hair than most people but more sweetness. Still, he’s not going to let me win.

I’m taking a long time because a mismatch and subsequent loss would put a dent in my 5-year-old ego. Before my forehead permanently wrinkles and a tantrum erupts, my Pop Pop says this:

“It’s OK if you can’t remember.”

Seven years later, I’m sitting in the living room in our home in Hillsborough, New Jersey, when I overhear my mom on the phone.

“Mom, that’s Dad,” she says. “He’s not a stranger. He’s your husband.”

I’m 12, and dementia doesn’t mean anything to me. (Diseases, I’ve found, don’t mean anything to you until suddenly they mean everything to you.)

“Mom, that’s Bill. You’re married to him.”

The first time you see your parent cry is weird and confusing and devastating — just like Alzheimer’s disease.

A few weeks go by, and my brother and I get home from school and we’re told that 1) Nana and Pop Pop are visiting; 2) Nana may not recognize us; and 3) we’re supposed to go along with this if it happens.

Preteen me is outraged. We can make her remember, I think.

My Nana looks through me when I talk to her and doesn’t hug me back. Everyone pretends as if none of this is happening.

Weird. Confusing. Devastating.

Two years later, I’m sitting on a metal chair in a hallway in Mary Manning Walsh Home, the nursing home in Manhattan where my Nana now resides. My Pop Pop takes the bus uptown every day to visit her. He hates when the nurses dress her before he gets there. He’s labeled her clothing and handles her laundry at home. He tells her stories. He feeds her. He “borrows” extra ice cream cups from other people’s trays because sometimes it’s all she’ll eat.

She can’t talk to him anymore. A series of strokes has reduced her to syllables. She says things like, “La luh, ba da, fa fuh, ka ka,” and he replies with things like, “I love you, Eleanor,” and “You look beautiful today, Eleanor,” and “Yes, I’ll turn ‘The Price Is Right’ on, Eleanor.”

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We’re just visiting for the day, but I’m not in their room because the weirdness and confusion and devastation is frankly too much for me to handle, and I’d prefer to sit among oxygen tanks and wheelchairs and unidentifiable smells.

At one point, my mom and dad go to talk with someone down the hall, and my grandparents are left alone. From my spot, I spy. My Pop Pop holds his wife’s hands, and she riddles off syllables. The cable news plays in the background.

I’m on the verge of tears, but for some reason that early memory of him winning our “Winnie the Pooh” card game finds me, and I regain my composure. I can’t hear what he’s saying to her. I don’t know if her brain knows what she’s trying to say when the syllables come out instead. I don’t know if she even recognizes him.

But I suddenly realize it’s his being there that matters. It’s his long bus rides uptown that matter. It’s his patience and understanding that matter. It’s his chattering and hand-holding and clothing-labeling and ice cream thievery that matter.

I abandon my hiding spot and join them, and I lean into my Pop Pop, and I hold my Nana’s hand, too, and I think, for the first time, It’s OK if you can’t remember, Nana. 

Because we do.

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Photographer Captures Brutally Honest Reality of Her Aunt's Alzheimer's Disease

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Susan Falzone already knew what Alzheimer’s disease entailed when her Aunt Grace was diagnosed. She understood the devastation and frustration in watching a loved one’s mind deteriorate. Just years before, she’d witnessed the illness slowly take away the grandmother who raised her. She died in 2009.

After her own diagnosis, Aunt Grace summed up the disease best when, in the middle of a conversation she was having trouble getting through, she cut herself off and said this:

“Without my memories, I am nobody.”

Falzone, a photographer from Easton, Connecticut, wanted to use her work to help. While attending the International Center of Photography in New York City, she decided to focus her long-term project on documenting her aunt’s day-to-day life. With the ongoing series, “Grace,” she hopes to drive a conversation and raise awareness to a disease that affects about 5.1 million in the U.S., according to the National Institute on Aging. More than that, she wants to show those people and their loved ones that they’re a part of a community.

“You’re not alone; we’re going through this together,” Falzone, 35, told The Mighty in an email. “There are millions of families feeling the same heartache, the same frustrations and fears throughout the world. Sharing our stories makes us feel a little less alone.”

Susan's photograph of her aunt walking outside

Susan's photograph of her aunt on the telephone

Susan's photograph of her aunt buying a bouquet of flowers at a register

Susan's photograph of her aunt sitting in a dark room with light shining on her face

Susan's photograph of her aunt

Susan's photograph of her aunt reaching for something on the kitchen table

Six years later, Aunt Grace is 86 and in good health besides her mental state, according to Falzone. She can feed herself and go to the bathroom alone. She refers to her brother (Falzone’s father), who cares for her fulltime, as “Papa,” and speaks mainly in Italian, so Falzone now communicates with gestures.

“Aunt Grace still has quality of life, which my family and I are so grateful for,” Falzone told The Mighty. “[She is]just like you and me; she is representative of your mother, father, grandparents, your son or daughter.”

You can view more from “Grace” below and visit Falzone’s website for the full series.

Susan's photograph of her aunt walking outside at night

Susan's photograph of her aunt in a waiting room

Susan's photograph of her aunt sleeping in bed

Susan's photograph of her aunt's current house with photo of house from the past

h/t Feature Shoot

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Teen's Awesome Invention Could Help Keep His Grandpa With Alzheimer's Safe

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This story is filled with love… and genius.

Inspired by his desire to keep his grandfather safe, a 15-year-old from California invented a device that could help millions of Alzheimer’s disease patients.

Kenneth Shinozuk’s grandpa lives with Alzheimer’s and often wanders off in the night, according to the teen’s project page on the Davidson Institute for Talent Development website. His aunt, the primary caregiver, was losing sleep trying to keep this from happening. After failing to find a device to prevent this, Kenneth realized he would have to create his own.

The teen invented a slim sensor that sends an alert to a smartphone whenever pressure is applied to it, according to Scientific American. When attached to a sock, it lets caregivers know when a patient is out of bed at night.

Every 67 seconds someone in the United States develops Alzheimer’s disease, according to the Alzheimer’s Association. For the more than five million Americans living with the disease, Kenneth’s wearable sensor could mean a reduction in accidents and injuries that often occur at night.

I’d like to solve some of the mysteries of the brain,” Kenneth told NBC. “And invent tools to ultimately, I think, cure Alzheimer’s and other mental conditions that our aging population suffers from.”

The “Safe Wander,” as it’s called, is currently a participant in the Google Science Fair 2014.

Check it out:

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