Blog

129 results
ALS Association
Roles Redefined: ALS as Advocate and Teacher
Dr. Heidi Tarr Henson, recently diagnosed with ALS, reflects on in-the-moment advocacy, teachable moments and the power of setting boundaries with ourselves and others.
Blog
ALS Association
Sharing Advice for My Fellow ALS Caregivers
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.
Blog
ALS Association
ALS Advice from One Caregiver to Another
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?
Blog
ALS Association
Giving Thanks for the Gift of Time
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.
Blog
ALS Association
Loving and Caregiving for Someone Living with ALS and FTD
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.
Blog
ALS Association
Finding Critical Resources for ALS Caregivers
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. 
Blog
ALS Association
Patty Letters: Advice from a Caregiver
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.
Blog
ALS Association
10 Ways to Help Families Impacted by ALS
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.
Blog
ALS Association
One Man’s Determination to Make ALS a Livable Disease
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.”
Blog
ALS Association
Using a Megaphone to Tell MY ALS Story
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.

Here is my ALS story.
Blog
ALS Association
David Kelly: “How Should I Live My Life?”
“How should I live my life?" Sadly, I don't have an answer to this question, only you can answer this question for your life, but I do have five points which may help you.
Blog