Skeleton Me 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…

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Caregiver Burnout: Why It Should Be Recognized as a Medical Condition—and How to Cope 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

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His folks, if you are interested in my first book, check it out on Amazon. You can download it free with Kindle unlimited, or if you prefer a real book in your hands, it's available in paperback. Click the link to get your copy? a.co/d/8mwJ6r

0 comments1 comment0 comments ... if Dante had been aware of ALS, there would be a tenth circle, the Perpetual Suffering Circle...

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This photo is from my recent hospital admission, it is to emphasize the gravity of the piece.

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I published my first work today! It's not a major piece, novel, or a book, in fact, but it's mine. It is a small booklet, for newly diagnosed ALS patients. I hope it helps. If you download it, I recommend you read in single page format.

a.co/d/3rexA1j

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The Tightrope 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

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Embracing the Strength of ALS Warriors and Caregivers 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

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Home | The Write Stuff A blog dedicated to living with ALS. Moderated and published by individuals impacted by ALS.

This blog is dedicated to sharing stories from individuals living with and impacted by ALS/MND. Visit, read, and gain insight into a life with an incurable, fatal condition.
www.scribes4als.com

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Writing exercise, write "I'm out of coffee in", in an overly dramatic way?
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Meg and other caregivers featured on time square.
You can view all the interviews at this link: www.iamals.org/calling-all-...

Today I am Thankful for...
Moments
Moments that have brought me closer to my family/friends.
Moments that have brought us together, as we travel.
Moments that have take my breath away; Alaska, Crater Lake, Glacier National Park, many more.
Moments that have inspired me/all fighting ALS.
TJO

When trapped in your body, a prisoner of a terminal condition, a good book is the escape from the cell that is your mind. Boundless universes to explore without physical limitations. Audio and e-books are the vehicles that take us there. Oh what world's will I explore today?

Stories, reflections, poetry, and testimonies born out of the pain of a terminal and incurable disease.

www.scribes4als.com

NLS at the Library of Congress - National Library Service for the Blind and Print Disabled (NLS) | Library of Congress National Library Service is a free braille and talking book library service for people with temporary or permanent disability

This is for anyone with a physical or visual disability, who loves to read. The National Library has a program that allows you to download books depending on your disability. I have ALS and don't have the use of my hands.
www.loc.gov/nls/

Ebook and Audio, due to the fact that I don't have the use of my hands, because of ALS.

Seeking guidance on how to have these books appraised ? I've had them for quite some time. They need to go to someone who will appreciate them.

One breath, one moment, one day... at a time. Remind yourself of this, every time you feel that you can't.