On July 10, Dan DeRoma posted a photo of his grandmother, who has Alzheimer’s disease, to the Reddit.com’s “Funny” subreddit, a community where people share content meant to give others a laugh.

My grandma with Alzheimer’s at my wedding;” the post reads, “she asked, ‘Where’s the body?‘”

Alzheimer's post
Photo from Reddit courtesy of Dan DeRoma

Some Reddit users found humor in the photo, while others felt it hit too close to home to be funny. But instead of a heated argument, something sort of great happened — a discussion began, one that came from a place of understanding, compassion and, above all, love. Many even shared their own experience with Alzheimer’s.

The Mighty compiled a few poignant responses in case any of them resonate with you — whether someone you love lives with Alzheimer’s disease or not. Take a look at their stories, and share your experience with disease in the comments below.

1. My grandmother had Alzheimer’s the last eight years of her life. She remembered my grandfather, who sadly passed away six years earlier, and tried to call him on the phone after bingo at the home to see when he was getting her. My saddest memory was when one of my uncles passed away from cancer. She had no idea who her son was in the casket, but she had a sudden moment of clarity seeing my aunt and asked where my uncle was.

I never wanted to see her when she was like this. If only I could have had her back to normal for one day. Just one more Apple pie on a cool Iowa night in the fall. Chasing lightning bugs and seeing the huge smile on her face when we got one in a jar.

alz 1

2. [This] reminds me of my mom’s mom, who passed away about seven or so years ago. She [lived with] Alzheimer’s for about five years, and it was terrible. You cannot quite describe the disease to anyone who hasn’t known anyone (personally) who’s had it. It’s much more than simple memory loss. It strips them of any true dignity.

alz 3

It’s an emotional roller coaster for everyone. You get tired and upset after they’ve asked you the same question for the 15th time in five minutes, then they get upset and confused as to why you responded a bit harshly out of exhaustion. Then two minutes later, they’re happy again, asking you the question/s again. Or, they’ll have sudden moments of utter clarity and you think everything’s normal again. Then they’re gone.

3. My mom’s mom has it. It’s weird how there are a few things that she remembers clear as day and yet she can grasp onto nothing else. She doesn’t know my mom, she doesn’t know my uncle, she doesn’t know anyone. When you spend any length of time with her, she asks you who you are every four or five minutes. The only person in the world she remembers is my grandfather and he died in April. Every few days she’ll ask when he is gonna get home. You can’t tell her that he is never coming home because that experience, that loss, will be the longest she has had in the past five years. And then she’ll forget and ask you again in a few hours or a few days. It’s heart-wrenching. But she’s the same person. She may not know who you are, but she’ll ask for a hug as she asks you who you are. She’ll tell you she loves you and sing you a song. 

alz 2

4. My grandfather [lived with] Alzheimer’s for eight years, and it was like watching someone slowly be locked in a box. About a year before he passed, his younger brother was put on life support due to pneumonia and the family had to make the decision to ‘pull the plug,’ as the doctors said he could no longer live off of a machine due to lung deterioration. At the funeral my grandfather refused to sit anywhere but the very back, like he knew something was wrong but couldn’t quite figure it out. When they rolled the casket by, it all clicked, and the strongest man in the world broke down into confused, distraught sobs. Watching someone who has Alzheimer’s finally understand what’s going on can be a blessing, but not when it’s a loved one being wheeled by in a casket.

alz 4

5. The last time I saw my great grandmother as herself was in 2004, before we moved halfway across the world. After we moved, she started losing it. I saw her again for the first time in 2012 when I visited back home. Nothing ever prepares you for what you’re going to experience. I went to the bathroom of her rest home and cried before going back out. She had no idea who I was, but she told me my jeans were ‘very lovely.’

alz 5

6. My mom told me once that her father (before it got super bad but not early on, either) looked at my mom and said, ‘I’m sorry, I know I know you and love you dearly, but I don’t know who you are.’ And he started crying. One of the only times my mom saw her dad cry. I only have one super solid memory of him and it’s distant and random, but I absolutely understand how hard it is seeing them now versus who they were.

alz 6

7. Both my grandparents had Alzheimer’s disease. My grandfather was just the king of forgetful and sometimes a bit of confusion, and he passed before it could really take hold. My grandmother, however, was the sad story. She was a refugee from Europe who’d seen too much of the war, so the memories she seemed to be able to remember were from this period. It was never fun being accused of being a Russian soldier, or of killing her friends, or of stealing. Then later, she began to leave the house in the middle of the night, bag packed with food and water, intent on going west. It was a crazy sad time, but I try to remember the times of clarity. I was however amazed that those ‘flashbulb’ memories did not seem to be destroyed; these bad memories became her reality. She’d found safety for nearly 50 years, but for the last three, she was in the worst place ever.


8. I did laugh about [the photo posted]. Then I read the comments and thought about two of my grandparents. They are both together in a facility, but both live with this terrible affliction. My grandma has compensated for my grandpa for years, but now she’s bad and he’s worse. We go visit almost every other weekend and it gets harder and harder. There are times they are still there. Maybe forgetful, but still the same. There are [also] times you see they aren’t the same people, too — they’re angry and bitter. They snap, they fight, they bully. It’s hard knowing I will never be with my grandparents again, at least not how I’d want.

I don’t know who will read this, but it helped just putting it out there… and knowing I’m not alone.

alz 8

Read the entire discussion thread here.


Despite how movies often portray them, seizures can be subtle, go unnoticed by onlookers or strike when a person is alone. But a new watch may help detect the unexpected and save a few lives in the process.

“The Embrace,” designed by computing company Empatica, monitors seizures, stress, activity and sleep. It can also send an alert to loved ones via their smartphones if its wearer has a seizure.

“Our device is… designed to save lives for a lot of people with epilepsy,” Rosalind Picard, Chief Scientist at Empatica, explains in the video below.

Epilepsy is the fourth most common neurological disorder, according to The Epilepsy Foundation. The condition affects everyone from newborns to the elderly, so the Embrace works to help people of all ages.

The device measures both movement and physiological signals. It can be programmed to vibrate when its wearer’s stress levels are rising. A person can also access all of his or her health data through a supplementary app called Empatica Mate.

For every watch purchased, Empatica donates an additional one to a child who can’t afford it in a program called “Buy 1 Give 1.” Donated watches will be distributed through The Epilepsy Foundation.

You can now order an Embrace watch through its website for $199, but the estimated delivery date isn’t until December 2015.

Learn more in the video below:

I imagined many things before you were born. In my mind, everything about you was perfect.

Although you never quite fit into the typical description I read in countless baby and toddler books, I saw this difference as uniqueness – you were perfect.

When the doctors diagnosed you with classic autism, I understood your differences and uniqueness would present certain challenges in your life. But in my eyes you were still perfect.

You were non-verbal for the first few years of your young life. It was so hard trying to soothe you when you cried because I didn’t know what was ailing you. Every time I looked into your eyes, my heart overflowed with emotion; you were still perfect.

You didn’t know how to interact with your playmates, preferring to be alone to play with your toys. While everyone interpreted your behavior as odd, I saw you as still perfect.

Your meltdowns came before your language. I knew this was your way of communicating feelings. This made it harder for us to go out and do things, but I knew these meltdowns wouldn’t last forever. Your language did come, ever so slowly, but it came. That’s all that matters; you were still perfect.

You get overly focused with certain objects or shows, which makes it more difficult to engage in other things. I gently try to redirect your attention, sometimes successfully, sometimes not. But every time I see the same thing; you are still perfect.

You still have certain challenges when it comes to communicating your needs, but it gets better every day. As you assert your independence, you become more aware of the need to verbalize your feelings. This is a huge step forward; you are still perfect.

You learn at a different pace than other children your age. You go to a school for kids with special needs where you learn life skills. You will not graduate with a high school diploma, but instead with more knowledge than when you started. Nobody can take that away from you; you are still perfect.

We were blessed to have had some great teachers that knew how to both engage and challenge you. It never ceased to amaze me, even with limited communication skills, how much you understood. You are still perfect.

As some kids are getting ready for college, learning how to drive a car or getting their first boyfriend/girlfriend, I know your path will be different. But it will be equally worthy and significant; you are still perfect.

You are very different than the child I imagined, and I’m glad. I’m grateful for all that you are. Reading and imagining are nothing compared to living and experiencing; you are still perfect.

You overcome many challenges on a daily basis. Each one you conquer makes you stronger, smarter and more independent; you are still perfect.

I will be your advocate when you cannot advocate for yourself. I will be your number one supporter in all that you do. In my eyes you are and always will be still perfect.

Follow this journey on Speaking Autism

When Von was in the pediatric intensive care unit fighting for his life, there were people online raising money for us and praying for us. Our phones were lighting up, and we felt so supported and so loved in that moment. Von survived a scary week on life support, and we went home a few weeks later.

Then it got really, really quiet. People we spoke to all the time stopped calling. We stopped getting text messages from friends who we thought would always be there for us. Our lives became one of doctors appointments, medicine schedules, lab appointments, meetings with social workers and trips to the ER. We got invited to things but always had to cancel. Von’s immune system and lungs just couldn’t handle the exposure to germs.

We stayed at home for months at a time and only saw a small group of people, mostly family. Soon, the invitations to parties, events and even for drinks ceased. I’ll never forget the day I emailed a friend who I hadn’t seen in months, and she never responded. I was heartbroken.

It happened to my husband, too. He got lost in the medical world, and everyone abandoned him except one person. They say you find out who your real friends are when you go through difficult times. It was a punch to the gut to realize my true friends could be counted on less than one hand.

At a routine appointment for Von, his endocrine doctor said to me, “Katie, you need to find support. You need to find friends in the special needs community. You can’t do this alone.”

I was afraid of making friends with other moms with children with serious illnesses. When you see things in the medical world that can happen to children, it can stay with you. I was afraid of entering that world. However, I knew I had to go there because I was drowning on my own, and the sadness I felt was palpable to a doctor I barely knew. So I took a big step and started looking and researching ways to connect.

I found a mom on a Facebook page who told me about a group in my area solely for children with life-threatening and complex medical conditions. Her son also had the same disease as Von. It was a miracle she lived in the same state. She encouraged me to sign up for the organization.

I was terrified and put it off for months. I didn’t want to be that mom in that community. I just wanted to be like everyone else. Finally, after months of feeling horrible, I made the commitment and I filled out forms. Within two months, we got word we were accepted. Shortly after that, I attended my first event and I found friends. I found my people.

I found people I could talk to about medical lab reports, daily pokes, trips to the ER, extended hospital stays, loneliness, isolation and sadness. I could share our developmental milestones with them. They were there with us and had traveled the same path.

One of the moms called us the “Green-Faced Moms.” We’re mothers who don’t stand out in the crowd, but inside our lives are so different, we feel like our faces are painted green. We look like everyone else, but our children are fighting. We don’t relate to parenting the same way the masses do. We don’t worry about minor ear infections or sore throats. Our fight is to keep our children alive. Our fight is to make sure they don’t miss milestones and not to cry when they do miss them or never make them.

Our fight is with the education system to make sure our kids aren’t passed up and get the resources they need to learn. We advocate to the medical community for better drugs, better therapy and better treatment. We often sit at home alone while our child is too sick to do anything but sleep. We sit quietly at their hospital beds after another trip to the ER for a minor illness our child can’t shake at home. We are united in our journey and our path, and together we can get through this. My life changed when I found a group who got me.

I found hope after the first event. I continue to find hope every single day I speak to them and find ways to get through the day-to-day of managing my son’s needs. I can call them and cry and know they get it and have been there. If you’re out there and you see this, don’t do this alone. Get connected and find hope and friendship.

Don’t be afraid to enter the community of special needs parenting. I’m a proud member and I’m so glad to be here. I encourage you to find your “Green-Faced Moms.”

Katie Paulson the-mighty-07132015-1

Follow this journey on Von’s Super Hero Facebook page.

The Mighty is asking the following: Tell a story about a time someone helped you and/or your child when you needed it most. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

I may have not been nice when I told you not to scold my kid. You might think he’s a spoiled brat and trying to hog the train table your kid wants to play on. Your kid might think that, too.

It’s not that I want my son to take away your son’s train. The sight of them playing side by side is so beautiful to me.

You see, the last time we came to the library, we had to leave very quickly when another kid tried to play on the train table with my son. My son has autism. Playing with others is a work in progress among many other social things he’s learning.

He didn’t want the others to play the last time we came because they’d mess up whatever game he was playing. He couldn’t tell them this, so he laid down on the floor kicking and screaming. We had to drag him out with his sisters, who were unhappy to be leaving the library early. 

This time, however, he played next to so many kids before your son came to play. They were playing so wonderfully until my kiddo grabbed the train from yours. And that is wrong. And he does need to learn it’s wrong. But I also want to reinforce the good. He didn’t lie down and become inconsolable because another child sat next to him. He didn’t do anything that caused us to leave the library. He, as a lot of 6-year-olds do, took a toy away from another kid.

We have come so far from where he was. We can do so many more things that most parents take for granted. And yet, all you see is my kid taking the train.

I do apologize for him taking the train. And one day I know he will apologize to your kid as well. Because progress with this kid has been amazing, and he never gives up trying to make friends.

But next time, let me scold my kid.

Amanda Crews the-mighty-07132015-003

Follow this journey on The Pieces We Were Given.

The Mighty is asking the following: Share with us the moment you stood up for yourself or your child in regards to disability or disease, or a moment you wish you had? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

Last week, Twitter removed hazardous ads after a charity in the U.K. pointed out how they could trigger seizures. On Monday, Virgin Media faced the same accusation after the company posted a flashing video on Twitter for its #AllTheFootball campaign.

Intense strobe lights, certain visual patterns and continuing rapid flashes of different colors are just a few examples of what can trigger a seizure for people with photosensitive epilepsy, according to The Epilepsy Foundation. People on Twitter were quick to alert Virgin Media to this, urging the company to take the ad down.

Epilepsy Action, the same charity that called out Twitter’s ads, actually tested the Virgin Media ad online to confirm it could cause harm to people with photosensitive epilepsy.

Soon after, Virgin Media responded to Epilepsy Action and removed the ad.

Real People. Real Stories.

150 Million

We face disability, disease and mental illness together.