By Stephen Kauffman
Living with ALS since 2012
This is the first in a series of posts from people living with ALS who are featured in our #VoiceYourLove campaign.
Before I was diagnosed with ALS, I didn’t know much about it – just that it was a debilitating disease. I was 27 years old and had no idea what to expect. I certainly didn’t plan for how much love it would bring into my life.
My parents and my sister were just incredible. They helped me maintain my independence and encouraged me to keep working and living my life, while navigating through the challenges of the disease.
My dad also joined the volunteer leadership for The ALS Association, to help raise awareness and support for others in the ALS community. Their love and belief in my abilities was so important to my sense of self and autonomy as a young man.
Then, I met Jeni in 2014 through an online community that we were both a part of. Our interactions started small through email conversations, text messages, and phone calls. We discovered we shared many common interests. Our communications with each other became almost daily and I found myself having strong romantic feelings for her.
Continue reading Guest Post: A True Love Story
At our most recent clinical conference, we honored Frances (Fran) McClellan with the Lawrence A. Rand Prize.
The award recognizes the courage, passion, integrity, and commitment of people serving the ALS community as volunteers, health care professionals, educators, communicators, or in other ways contributing to the quality of life of people living with ALS. It was established by Lawrence Rand, a former chairman of the Association’s Board of Trustees who played a major role in laying the cornerstone of what is now The ALS Association.
Fran is a passionate advocate and provider for people living with ALS. She serves the ALS community as both a nurse coordinator for our Certified Center of Excellence at the Louis Stokes Cleveland VA Medical Center (Cleveland VAMC) and a board member for our Northern Ohio Chapter.
Keep reading to learn more about Fran and the work she does in the fight against ALS.
Continue reading Fran McClellan Awarded the Lawrence A. Rand Prize
By Rick Fisher
My interest in photography began when I was the high school yearbook photographer. I really don’t know why I volunteered because, at the time, I didn’t even own a camera.
My father was a big 8mm movie guy, but he never used a still camera. After I was selected as the yearbook photographer, my father bought me my first 35mm camera.
Between high school and 1998, I was a casual amateur photographer. When digital was introduced, I got excited about the technology and renewed my interest.
Continue reading Guest Post: ‘Remember Me as Being a Help to Others’
Ronnie selflessly cared for Linda, his wife of 20 years, throughout her fight with ALS.
“The hardest thing anyone can experience is watching a loved one slowly die [when you] can’t do anything about it,” he said. “It doesn’t matter what disease they have.”
He added, “ALS is [an] ugly disease. It slowly takes away the person we saw being able to take care of themselves and enjoy life. The sad thing is…there is no cure. The person who has ALS just slowly wastes away.”
Linda was diagnosed with ALS on April 16, 2012. She passed away less than 14 months later – on June 8, 2013.
“If it wasn’t for God, I couldn’t have made it through,” Ronnie said. “I pray every day for all the caregivers and have the utmost respect for them.”
He wrote “ALS Experience” after Linda’s death.
Continue reading A Husband and Caregiver’s ‘ALS Experience’
By Russell Mikunda
Before being diagnosed with ALS, I had no idea that veterans are twice as likely to be diagnosed with the disease. Even knowing what I know now, I would still serve my country.
I was in the Navy for eight years, reporting for duty on three different ships during my time in the service. During my second deployment, we were off the coast of Beirut when things started to heat up during the early 1980s.
I’m very proud to be a veteran. The VA (Department of Veterans Affairs) takes good care of me. But sometimes I worry that everybody with ALS doesn’t get that same high level of treatment I do.
Continue reading Guest Post: ‘I Would Still Serve My Country’
By Stan Williams
Last year, I sat in the Washington, D.C., offices of my four elected Indiana representatives and saw in their eyes how my words, and the words from my wife, pierced their hearts.
Attending the National ALS Advocacy Conference left me with the unmistakable conclusion that those with the most to lose should be speaking the loudest. We must explain to our elected officials how their inaction affects people living with ALS.
Our real-life experiences of my own battle with ALS, including my wife’s challenges as my caregiver, had an impact on the Congressmen. They listened intently. Some even shed a tear or two.
Continue reading Guest Post: ‘Those With the Most to Lose Should Be Speaking the Loudest’
By Stacy Crowder
There’s no sugarcoating it. ALS is terrible.
Unlike many fathers this Halloween, I couldn’t carve a pumpkin with my kids. I also couldn’t help them put on their costumes or take them trick-or-treating.
I didn’t know much about ALS before my diagnosis, but I became an expert pretty quick. I also got to work fighting – and not just for me but to bring hope to everyone living with ALS.
Continue reading Guest Post: ‘I’m Really Fighting for My Family’