We spoke with Kara Nett Hinkley, vice president of state policy at The ALS Association to learn more about the role that state advocacy can play in the fight against ALS.
In recognition of Rare Disease Day, Kristina Woody shares more about what it’s like to be a caregiver for her husband, Lamar, and her unique perspective on the rarity of ALS.
For people living with ALS, the enjoyment and escape video games may have once brought is far too often another thing the disease takes from them. As muscles weaken and fine motor functions decrease, handling video game controllers and keeping up with fast-paced game play can cause frustration and cause people to give up on gaming all together.
For many people living with ALS, the decision to have a feeding tube placed, if or when it’s needed, is an important one, and as with many decisions that must be made during an ALS journey, it’s not of the one-size-fits-all variety. In recognition of Feeding Tube Awareness Week, we wanted to share some common concerns and misconceptions about them as well as some resources to help.
When Anjo Snijders was diagnosed with ALS in 2017 at the age of 35, he and his wife Sascha realized the vision of their future with their two young children in the Netherlands was forever changed. For both Anjo and Sascha, honesty with their children, age just seven and two at the time, was of great importance. Both teachers by trade, they began to look for resources to help explain their daddy’s illness, but found little if anything. And with that, the story of Luki and the Lights was born.
Looking back on the beginning of 2022, I would have never anticipated telling my family’s story to so many with the help of The ALS Association. I was working two jobs as a nurse, transitioning to another clinical position, all while trying to support my husband Lamar (diagnosed with ALS in 2018) with his goals toward completing his college degree, and maintaining the busyness of motherhood, raising our 8-year-old daughter.
We spoke with Scott Kauffman, chairman of The ALS Association Board of Trustees and caregiver to his son, Stephen, who is living with ALS, to look back on the achievements made in 2022 and learn more about what he sees ahead in 2023.
From the latest updates on ALS research and advocacy to information about caring for people living with ALS and inspiring stories from around the country, The ALS Association’s blog covered it all in 2022. Here is a quick look at the top ten posts our readers enjoyed most.
When I was diagnosed with ALS in 2018, my wife Kristina and I knew we were in for the fight of our lives. But I don’t think we were truly prepared for the devastating impact it would have on our family.
Natalie Woody was only four and a half years old when her father Lamar was diagnosed with ALS in 2018. Full of personality and spirit, Natalie’s parents agree that she’s no different than any other child her age, she just happens to have a dad who has ALS.
As no two cases of ALS are the same, nor are any two ALS caregivers. There is no one-size-fits-all answer to each caregiver question, but that is not to say there isn’t much to be gleaned from the experiences of others.
The ALS journey is difficult, so whether it is family, or friends or community volunteers, finding people who are willing to help, and accepting the help they are able to give, can make all the difference. We had the privilege of sitting down with the Woody family’s “village,” to talk about ALS, how it impacts their everyday life, and their incredible devotion to be a part of the family’s ALS journey. Here’s what they had to say.
Kayla met Lamar Woody back in 2017 at the music store where he taught voice and piano lessons. As her very first vocal coach, Lamar will always have a special place in her heart. He not only taught her how to sing and use her voice, he taught her about ALS.
For someone facing the daunting challenge of becoming an ALS caregiver, there are many paths to gaining the knowledge and experiences they need to care for someone with the disease. Regardless of how you prefer to learn, one thing everyone can benefit from is a reliable source of information, which can be found in the new ALS Association Caregiver Education Course.
As with hundreds of thousands of veterans, Michelle served her country honorably, eventually attaining the rank of captain, and moved on to a civilian life of work and family. But life wasn’t done with twists and turns for Michelle. In 2011, she began experiencing some muscle twitches. She didn’t think much of it at the time, and certainly didn’t suspect anything serious. “The chances of having ALS are miniscule and I never dreamed that would be my diagnosis,” Michelle says. But it was.
In 2008, the Department of Veteran Affairs established ALS as a service connected disease. In doing so, the VA made it possible for veterans who were diagnosed with ALS to receive compensation based disability, grants for housing, vehicle modifications and much more. A veteran's spouse and dependents may also be eligible for benefits, but a quirk in the law governing survival benefits means that spouses of veterans are being denied access to survival benefits after they lose their loved ones.
Kristina met Lamar Woody in high school, although it wasn’t until college when they really found their true connection. Lamar loves to tell everyone Kristina was the prettiest girl in school. Little did she know then she would not only become his wife and mother of their beautiful daughter, Natalie, but she would also become his ALS caregiver.
Only those living through the experience first-hand truly understand the challenges of being a full-time caregiver, particularly for someone living with ALS. The ability to complete basic daily tasks can be overwhelming and the need for help is great. Finding ways to help and show support for the caregiver in your life can make a huge difference for them, and for you.
