your responses

Every ____ Adds Up: Your Responses

[UPDATED AUGUST 25] We’ve updated this post with more of the #EveryDropAddsUp stories you’ve submitted!

The ALS Ice Bucket Challenge showed us that when small things add up, they can make the impossible happen. As part of our #EveryDropAddsUp campaign, we’re asking YOU to share what things add up to make a difference in your life. Below are some of the responses we’ve received so far. If you’d like to submit your own “Every _____” story, take a look at our Submission Guidelines or leave your response in the comments section!

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“Every Bravery Adds Up”

My mom was diagnosed with ALS in May 2011. She literally lost her speech within 6 weeks of slurring her words. She was semi-retired but enjoyed her job and co-workers, so she still worked part time at a hospital as an insurance biller. Bravery!

Unfortunately, she had to retire just two months later because she was unable to talk to insurance companies on the phone. She retired with over 25 years and the retirement celebration was fit for a queen! She wasn’t sad that day; she loved seeing all her friends, co-workers and family. She never lost her loud Italian laugh and it was heard many times at the celebration. Bravery!

Read more!


“Every Memory Adds Up”

My dad lost his battle to ALS on May 31, 2016. I had known this day would come since his diagnosis on January 5, 2015. We had our suspicions something “bad” was happening with Dad, but ALS was something that happened to ‘other people,’ not us. I had become aware of the disease due to the Ice Bucket Challenge in Summer ’14, but had NO idea what would lie ahead.

Our family decided to embrace the diagnosis and enjoy our lives together. Since there is no cure or effective treatment for ALS, we knew the likely hood of him being “cured” was dismal. My dad chose to live with his disease, even though we lost him a little each day. He traveled, he loved, he laughed, he lived. I can honestly say (with many tears) he lived 100 years in his 59.

Read more!


“Every Thought Counts!”

Picture, for a moment, that you’re in a straitjacket. You can’t move any limb to free yourself. All day and night long.

That’s how I imagine my younger sister Nell has felt over the past seven years as she battles the biggest foe of her life: Amyotrophic Lateral Sclerosis, or ALS.

I think of Nell when I do the simplest of things that are out of reach for her.

Read more!


“Every Person Adds Up”

ALS changes countless lives. It is nearly impossible to count every person.  It is not just the people with ALS, but everyone they touch and everyone who touches them and on down the line.

From the time I was a small girl I knew that my grandmother, Mildred Anderson, died from complications resulting from ALS.  She died in February 1960, when my mother was preparing to give birth to my older brother.  One of the big regrets of my mother’s life is that her mother never got to meet her four children and see what wonderful people they became. It is not just every person that has ALS that adds up, it is all the people in their lives and those that come after them. It could be said that “Every Family Adds Up.”

Read more!


“Every Day Adds Up”

Every day adds up!
I’ve been partnered with ALS for eight years.
It is not a gentle companion.
The disease is progressive and exacting.
I haven’t eaten food or talked for five years.
I can’t laugh, sing, or scratch an itch.
But I think I am winning.
Somewhere between my first bout with pneumonia and the blood transfusion for low iron, I put down my weapons.
The disease was too cunning and huge for me to take on!
Instead, I practiced acceptance and hope.
As the disease whittles away at my 5′ frame, I gather my friends and family around me.
We believe, we are patient: there is a cure.
Life is too good to give up.

Read more!


Every “next right thing” makes a difference.

My husband was diagnosed with ALS six months ago. During those months, I have had moments where I didn’t know what to do next. Paralyzed by fear, frustration, fatigue, heartbreak, guilt, pain, and anger. Immobilized, unable to proceed, brought to a grinding halt, unable to think or act normally, wholly incapable of movement.

A very wise person at church gave me an answer. “Just do the next right thing. If that is getting out of bed, do it; if you need to eat something, do it. Once you get started, you keep doing the next right thing and go on.” So I started practicing, first it was as menial as brushing my teeth or getting dressed. Sometimes even that seemed like too much but I made myself do the next right thing. It worked.

Now as we go on our journey with ALS, I am sometimes overwhelmed. How will we be able to adjust, cope, adapt, heal, survive?  I do the next right thing, that may mean calling a family member or friend; and when I do I am overcome by the love, support, caring and generosity of our friends and family.

God guides us to do the next right thing, he lifts us up and carries us when it’s too much and He sends others to help and influence. We are blessed.

We are new to the ALS community. My “next right thing” will be to ask for support, that will make a difference. As time goes by, I will continue to do the “next right thing” whether it be fund raising, participating, reaching out, education or sharing our journey.

-Carolyn Reveal, Kettering, Ohio


“Every step, every penny, every good deed adds up.”

I’m here to tell you what ALS is to me. My father lived a healthy lifestyle. He never drank, he ate healthy, exercised regularly and quit smoking about 30 years ago. He was always active. Many of my greatest childhood memories involve my father and I walking. Walking in the park, walking to the ice cream shop, walking in the winter to see the Christmas lights or just walking for the sake of walking.  My father was just recently diagnosed with ALS, at the age of 73. Soon he will not walk.  It is unfair to him I thought. He doesn’t deserve it, I thought. Then I realize, nobody does.

I and the rest of my family grieve while he is still alive. Afraid of how he is going to suffer. It is hard to enjoy the good time we have left. It is imperative to not let the fears of the future and its sorrows ruin what we have today.

I hope this message can help someone else to understand that they are not alone. No matter how we suffer. We cannot ever give up hope. We must fight the good fight. Every step, every penny, and every good deed adds up. Thank you

-Laura Osborne, Rochester, New York


“Every Hug Adds Up”

Hello, my name is Troy Sanders and my journey is just beginning. I was diagnosed with ALS on May 2, 2016. After a year of dealing with a hoarse voice and cramping I started to lose strength and it was getting difficult to breath at times. The things I find most helpful some days is a simple hug from friends and family. Reading all the stories on the blog has helped me cope with it knowing I’m not alone in this battle. This is why i would fill in the blank with a hug. Thanks

-Troy Sanders, Hanover, Pennsylvania


“Every View Adds Up”

June 2015, 6 months after losing yet another family member to ALS, I decided to pick my pen back up and pursue my childhood passion: writing scripts. I have lost a grandmother, 2 aunts, and an uncle to the horrible disease. My family knows this all too well. At times I’ve felt really lost, confused, and hurt, but that never stopped me from spreading awareness. At just 21 years old, I’ve been told that I’m the glue that keeps my family together. We’ve been active every year in the Jacksonville, Florida, Walk to Defeat ALS since 2006. My mom and I have even branched out and went to other walks in other cities.

This year, I dedicated the whole of ALS Awareness Month (May) to finishing my script, and I did. I recently created a 2 minute visual that let’s people into the minds of some of the real characters that they will be hearing about once the movie is picked up. In this visual you can see 2 of my aunts (one who was diagnosed this past October), my mother, and my cousin speaking. In the end, I give insight into why I decided to write and share this story with the world.

I have been promoting this video for the past week and a half, which is why I say “Every View Adds Up.” The more I promote it, the more feedback I have gotten. Strangers who have known someone with ALS, or even have ALS themselves have said how much they support me and they appreciate what I am trying to do. It really means the world.

I need a cure to be found. We all do. Because four of my grandmother’s six children have either passed away or been diagnosed, I often am afraid of running out of time or being too late. I’m trying to bring more attention to ALS before anyone else that I love gets “bad news.” Every view does count!

-Aleia Kristene Asbey, Jacksonville, Florida


Each contribution to the fight against ALS – no matter how seemingly large or small – adds up. Please consider making a donation this August, and every August, until we have a cure. Then, tell your friends why the fight against ALS matters to you and encourage them to make a contribution, too!

 

 

 

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