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The Write Stuff Group

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Living with ALS


Living with ALS, or amyotrophic lateral sclerosis, is an experience that profoundly reshapes every aspect of life. This disease, often referred to as Lou Gehrig's disease, is a progressive neurodegenerative disorder that affects motor neurons in the brain and spinal cord. These neurons are crucial for muscle control, and as they deteriorate, the ability to initiate and control muscle movement is lost.


In the early stages, the signs can be subtle—a slight weakness in a hand, some difficulty walking, or slurred speech. It can be easy to dismiss these symptoms as minor or temporary. However, as the disease progresses, the changes become more pronounced and more challenging to manage. Everyday tasks that were once second nature require immense effort and, eventually, become impossible without assistance.


The physical decline is relentless. Muscles weaken and atrophy, leading to loss of mobility. Walking turns into shuffling, and eventually, even standing…


A Dance of Love


Listening to my husband describe how ALS affects him is one of the most heart-wrenching experiences I've ever had. We've been navigating this journey together for a while now, but each day brings new challenges and revelations. When he talks about the disease, there's a mix of frustration, vulnerability, and resilience in his voice that cuts straight to my heart.


The other day, he mentioned feeling particularly weak when he's moved into certain positions during our transfers. As his wife and caregiver, it's my responsibility to ensure his comfort and safety, but more than that, it's my deep desire to make him feel as secure and supported as possible. Hearing him talk about that weakness—it’s like a dagger. I can't help but feel a pang of helplessness, wishing I could do more, be more for him.


We sat together, and he explained how his muscles just…


Cloie Payne
21 days ago · joined the group.
Brandy Trigona
May 4, 2024 · joined the group.
Cloie Payne

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