A Mother's Heartbreaking Battle: Navigating Life with ALS and the Devastating Impact on Her Family

In the face of adversity, the human spirit can be both resilient and fragile. This is the story of a courageous mother, who, amidst the joys and challenges of raising two toddlers, has been dealt a devastating blow. Diagnosed with Amyotrophic Lateral Sclerosis (ALS), she now faces a daily struggle with the loss of memory, unpredictable mood changes, personality alterations, and paralyzing symptoms. This heart-wrenching journey not only tests her strength but also profoundly impacts her family, as they navigate the complexities of this debilitating disease.

The Diagnosis: A Life-Altering Moment The day the diagnosis was delivered will forever be etched in her memory. ALS, often referred to as Lou Gehrig's disease, is a progressive neurodegenerative disorder that gradually robs individuals of their ability to control muscle movement. For this mother, it meant facing a future filled with uncertainty, physical limitations, and emotional turmoil.

Loss of Memory: A Fragmented Reality As ALS relentlessly progresses, memory loss becomes an unwelcome companion. Simple tasks that were once second nature now require immense effort and concentration. The mother finds herself grappling with the frustration of forgetting important dates, cherished memories, and even the names of her own children. Each forgotten moment serves as a painful reminder of the cruel grip that ALS has on her mind.

Unpredictable Mood Changes: A Rollercoaster of Emotions The impact of ALS extends beyond physical limitations. The mother experiences unpredictable mood changes, swinging from moments of joy and laughter to overwhelming sadness and frustration. These emotional rollercoasters not only affect her own well-being but also create a challenging environment for her young children, who struggle to understand the sudden shifts in their mother's demeanor.

Personality Change: A Stranger in Her Own Body ALS not only affects the body but also alters the very essence of a person. The mother finds herself grappling with a changing personality, as the disease gradually erodes her ability to communicate and connect with others. The vibrant, outgoing woman she once was becomes a distant memory, leaving her loved ones to mourn the loss of the person they once knew.

Paralysis Symptoms: A Prison of Immobility Perhaps the most devastating aspect of ALS is the progressive loss of muscle control. The mother's once agile body becomes a prison of immobility, as she gradually loses the ability to walk, speak, and perform even the simplest tasks. Each day brings new challenges, as she relies on assistive devices and the unwavering support of her family to navigate a world that has become increasingly inaccessible.

The Impact on Her Family: A Shared Burden The weight of ALS is not borne by the mother alone but is shared by her family. Her partner becomes her caregiver, juggling the demands of work, household responsibilities, and the emotional toll of witnessing the gradual decline of the person they love. The young children, too young to fully comprehend the gravity of the situation, are left to navigate a world where their mother's presence is both physically and emotionally altered.

A Call for Compassion and Support The story of this mother's battle with ALS serves as a poignant reminder of the fragility of life and the profound impact of debilitating diseases. It is a call to action, urging society to extend compassion and support to those facing similar struggles. Through increased awareness, research, and resources, we can strive to alleviate the burden faced by individuals and families affected by ALS. Let us stand together, offering solace and understanding to those who face the unimaginable challenges of living with this devastating disease.

We've taken a sample of the woman's personal diary and have been blessed by her to include it here,

"Dear Therapist,

I've taken a look at that app you mentioned last week and over this weekend I started reflecting on how I've been feeling these last six months or so.

I thought I'd send it over...I believe you mentioned going over what I write in the app? If I'm wrong, I apologize.

I also apologize if this does not make any sense because I've had babies distracting me while I was writing this in the app.

Here is what I wrote:

I'm nothing. And even if I do work to become what I used to be no one would treat me like I was never the this version or disgusting. I've lost it all.

I'm a hellhole. Broken, twisted, nothing good about me. My best is nothing good. It's not even adequate.

And I don't want to try for nothing.
And even if everything in me was perfect I would still hate me. They would still hate me. I'm nothing.

It's so hard to try to breathe, to keep what walls I've built to keep the horrible things in me back, they've crumbled.

I'm just dead. And I've got nothing left in me. Nothing good. And I don't want to sit every day being like this.

I'm just trying.

Most days I feel as if I'm a whole new person but I don't know this me. I don't recognize anything about this new me. I don't know where the old me even went? I'm struggling to find anything recognizable in myself or trying to fight to get back to the old me and it's just not working.

This isn't a mood change or depression. It's a personality change with only the faintist bit of awareness that this isn't me. That there is something wrong. I'm stuck in this new disgusting version of me.

Like a stroke that changed my whole self. There's nothing left of the old me. Just anger...but not anger? Maybe frustration and confusion. Where did I go? Who am I? Who is this me? Almost like I woke up from a coma in place and a body I don't recognize... a me I don't recognize. Like I know enough that I am not the person who was here before? I'm just stuck in this nothing void. Every decision or thought I've had is not anything the old me would think or do. I've had other people question why I didn't say or do what I normally would have done or said. It's confusing.

The worst part is I started just trying to keep my head above water, drowned, and now I'm submerged just wallowing in the depths of this hatred. Hatred of knowing my babies will not know the real me...the patient, kind, all-giving, REAL me. Now I'm just this monster who their dad doesn't even love anymore.

Like I mentioned I'm trying to make sure my babies don't notice me being in a negative mood so it's just something I would like to mention in case if you think it needs to be addressed? Hope that makes sense."

"Hatred of knowing my babies will not know the real me...the patient, kind, all-giving, REAL me. Now I'm just this monster who their dad doesn't even love anymore."

Team

Team Member #1 - Content Post Manager - Desiree Bennett
- Oversaw blog post writing and posting to all requested channels
- Liaised with medical professionals to ensure accuracy of information provided on the platform
- Art/Photography Content by Desiree Bennett
Team Member #2 - Unnamed Mother
- Provided emotional guidance during writing process
- Provided writing excerpts including Self-insertion