My husband’s ALS journey is not unique. It started with weakness in his left leg, and a few other puzzling issues which he began to note around 2010. We didn’t do anything about it until October 2012, when things got more puzzling.
When your loved one receives a diagnosis of ALS, you transition into a new role as a caregiver. This may happen gradually over time, or quickly, catching you off guard and possibly unprepared. Regardless of where you are in your caregiving journey, who better to accept advice, guidance and emotional support from than other families and caregivers who are living through similar experiences?
I can’t will the leaves to hold on to the tree for much longer, I know that. Soon, we will all have to let go. But for now, in the month of Thanksgiving, we just hang on. We continue to thank God for the gift of time and each other. But when the day comes and her spirit no longer fills that room, I surely will never be the same.
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.
Avi works closely with The ALS Association, fundraising to ensure all people living with ALS have access to effective treatments and care. Almost completely paralyzed and unable to speak, he communicates by typing using small head movements. “My campaign to help find treatments and a cure is done primarily through a computer,” he says, “but my life is filled with joy, and I am living with ALS.”
Over a year ago, Sophia Harding became a volunteer for The ALS Association, a fourth-generation member of the Barnett family to join the fight against ALS. In the midst of the COVID-19 pandemic, she moved to Florida and joined the team at The ALS Association Florida Chapter as a Phone Friend Volunteer.
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 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 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.