Early Signs of MSA
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Don’t Just Exist—Live. A Lesson from Someone Who’s Running Out of Time.
I’m dying. My future is set, and it is not long. But you? You still have time to do more than just exist. You have time to make your days count. Continue reading
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When is the Right Time to Say “This Might Be the Last Time We See Each Other?”
I often find myself wrestling with a question that seems to linger on the edge of my mind, sometimes coming in the quiet hours of the night or in a rare moment of clarity during the day: When is the right time to say, “This might be the last time we see each other?” Continue reading
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The Nighttime Warning Sign: Sleep Disorders in MSA
MSA takes enough from us. Losing sleep to this disease feels like one more cruel twist. But knowledge is power. If you’re experiencing sleep issues, know that you’re not alone. Talk to your doctor, make adjustments where you can, and most importantly—don’t give up. Every moment of rest we can reclaim is a small victory… Continue reading
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The Tragic Quagmire That is MSA Clinical Trial’ville
In summary, ATH434 have shown promising interim results, conclusive statistically significant outcomes from ALL MSA clinical trials remain limited. Research is ongoing, and the medical community continues to seek effective treatments for this challenging condition. Continue reading
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A Voice from the Shadows: Understanding the Silent Struggles of Chronic and Terminal Neurodegenerative Disease
Living with a chronic or terminal neurodegenerative disease like Multiple System Atrophy (MSA) is a battle fought on two fronts: the internal war waged against your own body and the external struggle of being understood in a world that can’t see your pain. Continue reading
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A Defiant Man’s War Against MSA: An Undefeated Demon
You ever feel like there’s a demon living inside you, ticking off parts of your body like it’s going through a grocery list? I do. It’s called Multiple System Atrophy. MSA—this relentless, fucking ruthless demon that leaves nothing untouched. It doesn’t care who you are, how strong you’ve been, how much you’ve fought. It’s undefeated…… Continue reading
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Post 7 in a Series: Exploring Alternative Therapies With CVAC for MSA Symptom Relief: Introducing Nuenerchi
Nuenerchi is a therapy designed to restore the body’s natural electrical pathways, which are often disrupted by injuries. This disruption can hinder cell communication, causing various issues such as muscle dormancy and impaired function. Nuenerchi aims to restore these connections, enabling muscles to fire properly and activating the body’s natural healing mechanisms. Continue reading
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“Get Busy Living, or Get Busy Dying”: A Journey with Multiple System Atrophy
Andy Dufresne’s words echo in my mind daily, serving as a poignant reminder of the choices we face, especially in the grip of adversity. For those of us battling Multiple System Atrophy (MSA), this choice is not just metaphorical but a literal crossroads we encounter every day. Continue reading
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The MyTrial Series: Month 3 – A Season of Patience and Progress
One of the most fascinating aspects of my journey has been the skin biopsy I underwent. I recently received an update from the researchers: they have successfully grown fibroblasts from my skin cells. It’s amazing to think about how these tiny cells, which took a couple of months to grow, are now being stored in… Continue reading
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Defiantly Opposing the Comment: “I’m not scared of dying, but I am scared of dying with MSA.” Fuck MSA: It Shall Not Win!
The fear of becoming a mere shadow of who we once were haunts us all. As one member of our Facebook group poignantly expressed, it’s the loss of quality of life and independence that makes this journey so excruciating. Continue reading
Living Beyond the Diagnosis 