As my ALS progresses, I feel myself slipping away, unraveling thread by thread until all that remains is a fragile skeleton of who I once was. The disease is a slow eraser, wiping away the colors o…

Caregiving is often described as an act of love and dedication. But behind the compassion lies a heavy truth that many caregivers know all too well: burnout. From personal experience within my own family, I see how this burden—though the word may feel harsh—is a fitting description of the weight caregivers carry every day.Caregiver burnout is more than just feeling tired or stressed. It’s a serious medical condition that affects emotional, mental, and physical health. Chronic exhaustion, anxiety

... if Dante had been aware of ALS, there would be a tenth circle, the Perpetual Suffering Circle...

A piece I recently wrote referenced tightrope walking, and this got me thinking of a relationship. This relationship is the one between the person with ALS and the family caregiver. I think it is one of the most challenging tightropes walks to exist. Beyond the balance required, there are so many other factors that can affect this tenuous dance in the sky.   The two parties have to operate as a unit in order to successfully traverse this narrow path called ALS, every step a precarious one. Care

In the heart of our community, there's a remarkable strength that radiates from the individuals who face amyotrophic lateral sclerosis (ALS) with unwavering courage. Over the past six months, I've had the profound privilege of connecting with numerous ALS warriors and their caregivers, each encounter leaving an indelible mark on my soul. Their stories of resilience, love, and determination inspire me daily and reaffirm the importance of our collective fight against this relentless disease.One of

A blog dedicated to living with ALS. Moderated and published by individuals impacted by ALS.

A blog dedicated to living with ALS. Moderated and published by individuals impacted by ALS.

National Library Service is a free braille and talking book library service for people with temporary or permanent disability