My husband's ALS diagnosis didn’t explain the symptoms I was seeing. I searched the internet late at night and concluded that he also had Frontotemporal Dementia (FTD). Symptoms of FTD include a loss of empathy and executive function, an increase in inappropriate actions, a lack of judgement and inhibition.
The Association provides free online access to a variety of options, including publications, videos, books, and informative websites that provide a wealth of easy-to-access information on important topics relevant for people living with ALS and their caregivers.
The Letters family has graciously shared different perspectives of their family’s very personal journey with ALS on our blog throughout the past year. In recognition of National Family Caregivers Month, Patty Letters was kind enough to tell her side of the story living as an 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.
When my husband Tom was diagnosed with ALS, we were embraced by the ALS community. But as his health declined, I didn’t really feel ALS was what was stealing my husband from me. I felt more connected to people losing loved ones to frontotemporal dementia, also known as FTD. I did lose my husband to ALS… a particularly cruel and nasty form of ALS that includes FTD.
Throughout September we have highlighted some of this year’s scholarship recipients, sharing their personal stories about the impact ALS has had on their lives. We recently talked with Elita Schmidt to learn a little more about her connection to ALS, what receiving the scholarship means to her, and her future plans in healthcare.
We recently talked with Kaiden Anderson to learn a little more about his personal connection to ALS, what receiving the scholarship means to him, and his future plans in healthcare.
We recently talked with Emma Thompson, one of this year’s award recipients, to learn a little more about her personal connection to ALS, what receiving the scholarship means to her, and her future plans in nursing.
We recently talked with Ally Halverson, one of this year’s award recipients, to learn a little more about her personal connection to ALS, what receiving the scholarship means to her, and what her future plans are in healthcare.
After Terry Peterson was diagnosed with ALS in 2019, his family decided to preserve the memories of their time together by documenting their journey in a video.
After Bryan was diagnosed with ALS, the Stones immediately adopted the saying, “Today is the best day of the rest of our lives, and we’re going to make the most of it.” And in the days and years since, Bryan has done just that and is an awe-inspiring example of a true ALS hero living his life to the fullest.
Amber Letters is a wife, a mom, a sister, and was a part-time caregiver for father who lost his battle with ALS this year. To honor her father’s legacy, she is sharing her family’s personal story, their journey with ALS and how they found hope along the way.
People living with ALS and their caregivers face substantial financial burdens accessing and understanding insurance coverage and paying for medical treatments and services, causing high stress, added work burden and tremendous debt for individuals in the ALS community. No one understands this more than Jimmie and Dennis Thomasson in Mobile, Alabama.
Sally Dwyer is the Director of Mission Strategy & Integration for the Mid-America Chapter at The ALS Association. She has worked with the Association for 26 years and has experienced many moments and milestones throughout her career serving people impacted by ALS.
The ALS Association is now accepting applications for The Jane Calmes ALS Scholarship Fund for the upcoming 2021-2022 school year. Established in 2019, the scholarship is designed to support post-high school education for students whose lives have been impacted by ALS, with recipients receiving up to $5,000 per year to help cover the cost of education.
As Feeding Tube Awareness Week comes to a close, we spoke with Brenda and Kelly Kraft and asked them to share their family’s story about their personal experience with making this difficult decision, and the relief they felt once they had made it.
Through word of mouth, Stuart and his wife Marcia found five or six families in their community who were also dealing with the impact of an ALS diagnosis. They started an informal support group. The group started working with the chapter relations team at The ALS Association and formed The ALS Association Alabama Chapter.
Marjio opened her own personal training studio, MOTIVATION STATION, last September. While providing a safe environment for Marjio and her clients, the studio has also provided increased flexibility for her role as caregiver to Terry.
We recently spoke with George Stevens – husband, father, grandfather, and a person living with ALS. George and his family live in Maine and have been very involved with The ALS Association Northern New England Chapter. Here is what George had to say about his journey with ALS in his own words.
Our family’s journey with ALS was no doubt the saddest and hardest thing we ever encountered. But we managed to stay strong through it, and the entire experience brought us all even closer together. In the end, it became the most special and magical journey our family ever had together.
