This August, we’re sharing stories of the individual actions that add up to make a difference in the lives of people living with ALS. Today’s story comes from Nell Hardy, pictured above at the 2016 Walk to Defeat ALS in Manhattan with her three sons, Brendan (left), Connor (middle), and Emmet (right). Her fourth “son,” Rico, is perched on her lap, which is his favorite spot to spend every day. Nell and her family are also featured in our Every Drop Adds Up video, crossing the finish line together.
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.
We want to hear from you, too! How would you fill in the blank? “Every ___________ adds up.” Tell us about your ALS journey and your commitment to advance the fight against ALS. Tag your answer on social media with #EveryDropAddsUp or send us a blog post!
One of the many blessings of the Ice Bucket Challenge craze that swept the globe in 2014 was that it made people aware of ALS, a brutal disease that robs a person of his or her ability to walk, talk, and eventually, breathe. Prior to the Ice Bucket Challenge, most people only knew about ALS if a friend or family member had been diagnosed with it.
The great news is that those donations are already having an impact on the research. The ALS Association spent some of the Ice Bucket Challenge donations on Project MinE, which just announced on Monday that it had discovered a new ALS gene, one that is among the most common among people who have familial ALS.
While the Ice Bucket Challenge raised great awareness about ALS and the need for greater funding for research and care services, many people still don’t know what exactly ALS is or how it affects a person. Fortunately, former NFL player Steve Gleason has documented his journey and is sharing it in a new documentary that opens this weekend. The Daily Beast has called it “the most powerful, poignant documentary of the year.” Continue reading Ice Bucket Challenge Made World Aware of ALS, “Gleason” Brings it Home
The son of an art educator, Konnor (@KonnorSchmaltz) lost his mom to ALS a year ago this July. She fought until the very end, and through her family found strength to last as long as she could have. There isn’t a day that goes by where he isn’t reminded of her and will forever cherish the moments they shared together.
“I consider myself the luckiest man in the world …”
Whether recited by fans of America’s Pastime or by Yankees followers, by those who look to it for strength fighting this horrendous disease now or by loved ones of those they’ve lost – the weight these words carry is unfathomable.
But, why? Why would a man who had everything taken away so quickly be so…positive? Was he referring to the four home runs he hit in a single game? Maybe it had something to do with his Triple Crown win in 1934. Did The Iron Horse and future Hall of Famer not understand what most of us here know would happen to him as time progressed? Continue reading The Legacy of Lou Gehrig’s Farewell Speech
My name is Denise Hatfield, and I have been married almost 39 years to the love of my life. We share two beautiful sons, and two amazing grandsons. Rick and I are each others rock, and when he was diagnosed with ALS, my world turned upside down. For 39 years he has been by my side. He has always provided for me. I can’t imagine life without him in it. We do everything together and I will fight this battle to the end and then some. Hoping in his lifetime and in others, I can make a difference.
My husband is a mechanic for big rigs. In January of 2015 he started noticing his hands getting weaker at work. By June he was dropping things.
We took him to the doctor thinking it was maybe carpal tunnel, but I noticed the muscle mass loss in him and the difference in his speech. So we went to a neurologist. He was diagnosed with ALS early, but progressed fast. By October he was out of work.
For six years, he had been building a ’57 Chevy from the frame up. It had been his ultimate dream since he was a kid. So after being off work he decided he had to get his car finished. He worked as much as he could, but got weaker by the day. Our two sons helped around the house, when not working to help him finish this project. We finally sent the car out for a paint job. My husband was still driving but getting weaker every day. Continue reading A Father’s Dream Comes True Despite ALS
Craig Bower is the son of the late Clarence Bower, who is the father in this story. Craig wrote this piece “in hopes it may inspire others” and dedicates it to his father’s memory.
Stories of strength, survival, success and failure. Stories of “overcoming the odds” after a life-altering (insert horrible disease name here) medical diagnosis.
I have nothing against those stories. In fact, I’m continually amazed and inspired by them. They make me feel good and give me hope, which I think is why I read them in the first place. Most of the stories seem to summarize an amazing person that became a voice and advocate for their disease. They organized, researched, educated, shared—and most importantly, fought—until the very end leaving me (and others) amazed and inspired.
But some stories are amazing and inspiring for other reasons.
Continue reading “Everyone has a story”
Jim Dolan has always found pleasure in “wandering with a camera and capturing nature as I see it.” Despite being diagnosis with ALS in 2015, Jim continues to engage in his passion by photographing the beautiful natural environment around his Ohio home.
In addition to sharing his photographs, Jim is also generously helping the fight against ALS. The proceeds from every photo that Jim sells on his website will go to advancing the research, care services, and policy projects supported by The ALS Association.
Below are a few of Jim’s most recent photographs. To view more of his work, you can visit his website at http://jimadolan.com/. Continue reading Photographer with ALS Captures Nature As He Sees It
Before being diagnosed with ALS at age 28, Rachel Doboga loved her job teaching 5th grade English. Now, she advocates for a cure for ALS and write stories on her blog, “How I Live Now: Life With ALS.” Through her writing, she hopes to increase ALS awareness and create a community for other people with ALS and their loved ones.
My parents and I live very far apart, but we visit as often as possible. Earlier in my disease, our reunions were more normal: catching up, visiting favorite restaurants, hanging out at the bookstore. We did the things we have always done when we got together. Now, one year after being diagnosed and two years into this disease, it’s getting harder to forget I am sick.
Continue reading “A Seat at the Table”