ALS Nexus 2026: Speaker shares hope navigating mom’s ALS
Author Tabitha Brown reflects on grief, daily gratitude, and finding purpose in loss
Written by |
- Tabitha Brown highlighted the profound impact of ALS after losing her mother to the neurodegenerative disease in 2007.
- Common challenges include progressive physical loss, such as reduced facial expression, mobility issues, and difficulty managing everyday tasks.
- Caregiving involves immense emotional weight, but leaning on hope, empathy, and daily gratitude helps patients and families navigate loss.
For Emmy award-winning host and New York Times bestselling author Tabitha Brown, joy, gratitude, and hope have guided her through life since losing her mother to amyotrophic lateral sclerosis (ALS) in 2007.
Speaking this week at the ALS Nexus conference in Orlando, Florida, and online, Brown shared how that loss reshaped her perspective.
On Tuesday, she sat down with Calaneet Balas, president and CEO of the ALS Association, to discuss her caregiving journey and how hope can be a powerful tool in facing the disease. Their session was titled “Hope: An Underutilized Treatment for People Living with ALS.”
Brown, 47, remembers her mother, Patricia, as “a real light” — a spirit that even an ALS diagnosis could not dim. “She was still the exact same person … she just had this new thing that was happening.”
“My mother loved to smile,” Brown said. “As … her ALS continued to grow … that ability to smile was lost and she wasn’t able to laugh and smile.”
Honoring a legacy of joy
Honoring her mother’s zest for life, Brown smiles every day. “I don’t have to, but I get to,” she said. “I choose it in honor of my mother, but also to … spread joy, because we don’t know when something could happen and we can’t smile.”
Beyond smiling, Balas and Brown talked about the power of re-framing everyday tasks — like going to the gym — as something you get to do, rather than something you have to do.
It’s about appreciating the “simple things,” like being able to take the cap off a bottle, Brown said. “There’s not a day that I’ve opened a water bottle since my mother had ALS that I don’t think of her…. because I remember the day that she slid it to me because she couldn’t take the top off anymore.”
Brown was in her 20s when her mother got ALS, and she remembers wanting to keep everything together so that her mom wouldn’t worry. Newly married and a young parent, she frequently traveled across the country to take care of her mom for weeks or months at a time.
“There were days that I held it together and … some days that I let it all go,” Brown said. “That’s the human part of who we are… sometimes we’re going to have to let things fall apart.”
Where she got comfort, Brown said, was in knowing she was there to show up for her mother and give her all the things she wanted in her final days, months, years.
Finding purpose through pain
“I didn’t want to have any regrets,” she said. In hindsight, she admitted she still sometimes wishes she had done more, “but that’s just part of grief.”
She was also inspired by her mother’s own strength after her diagnosis, and her conviction that her life had taken the course it was supposed to. Balas added that being able to adjust your perspective like that can make it easier to navigate life with ALS or other hardships.
“You know, being able to flip the narrative, and instead of ‘Why is this happening to me?’ … somehow I have a faith or a hope or a belief that I’m in the right spot at the right time because I should be, because I’m needed, or I can handle it,” Balas said.
Brown said her journey with her mother’s ALS, though difficult, ultimately made her more empathetic and compassionate.
“The journey changes you, and it really does shift how you see people,” she said. “The pain has purpose.”
Brown and Balas wrapped up their chat by acknowledging the many healthcare providers who are part of the ALS journey.
“I know that the weight gets heavy, but you carry it still every day,” Brown said. “I just ask that you always remember … that someone, even though you may have seen it hundreds and thousands of times, they’re looking at you for the first time.”
“You’re their person in that moment that’s going to give them hope and guidance … you are so needed and appreciated.”
Note: The ALS News Today team is providing virtual coverage of the ALS Nexus Conference Aug. 23-26. Go here to see the latest stories from the conference.
Leave a comment
Fill in the required fields to post. Your email address will not be published.