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Living with ALS — amyotrophic lateral sclerosis — is a journey unlike any other. It’s a reality that brings many questions, many emotions, and sometimes, a profound sense of uncertainty. What does it mean to live with this disease? Am I just existing? Am I simply waiting to die? Or am I still creating memories, Read more
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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 of my body, leaving behind a stark, hollow outline—a skeleton me. Each day, I watch parts of myself fade Read more
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https://www.scribes4als.com/post/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 Read more
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ALS may be silencing my voice, but in this quietude, a magnificent chorus begins to rise — the chorus of my soul. It is a song of hope and peace, transforming the silence into a powerful opus that tells the story of a life richly blessed by love, acceptance, joy, and yes, even pain. This Read more
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The Battle Against ALS I don’t fear death as much as I fear not living the life I have been given. Every day is a relentless struggle to hold death at bay, through sheer determination and yes, with a good dose of respect for the reaper himself. He has bestowed upon me this burden called Read more
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The Silent Struggle Behind “I’m OK” When we think of caregiving, we often picture acts of kindness, patience, and unwavering support. What remains less visible, however, is the emotional toll borne by those who provide such care, particularly spouses of terminally ill patients. These individuals face an enormous burden that is frequently masked by their Read more
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The journey of being diagnosed with ALS is profoundly heartbreaking, an agonizing experience marked by the harrowing anticipation of one’s own demise. This is compounded by the pain our loved ones will also experience. The moment the diagnosis is uttered, it is as though the ground beneath shatters, leaving one to grapple with the imminent Read more
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Our Journey in Big Blue In our time traveling in Big Blue, we have tirelessly advocated for those impacted by ALS (Amyotrophic Lateral Sclerosis) and endeavored to inform those who know little about this devastating condition. Our mission has always been clear: to amplify the voices of those living with ALS and ensure their experiences Read more
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Meeting the ALS Community Across Our Country As Meg and I embark on our journey across this vast and beautiful country, we made a heartfelt decision early on to connect with others in the ALS community. Our route takes us through the many states, and with each stop, we seek out fellow travelers who share Read more
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Lessons from the Road with Big Blue The novice motor home or RV enthusiasts, like Meg and I, learned the hard way that we had to slow down. We have learned many lessons as we travel our beautiful country. Many of them because of our adventurous spirit, translation—miscalculations and “I can get through there.” Yes, Read more
Life On The Road with ALS 