Terminal Diseases
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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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Living with MSA: The Hidden Weight of the Simple Question ‘How Are You?’
You see, I have Multiple System Atrophy (MSA). Every day feels like I’m walking closer and closer to the end. The motor skills, the balance, the dizziness, the fatigue — all of it is a reminder that my body is slowly betraying me. And yes, it scares me. It scares me a lot. But when… 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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That Dam SPCA Commercial – Did You Notice? MSA Can Make Us Overly Emotional
Have you ever found yourself crying at a commercial, or laughing uncontrollably at something that wasn’t that funny? Maybe you’ve felt your emotions swing wildly, leaving you wondering, Is this just me, or is it the MSA? 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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Stop Counting the Days and Start Living Them: A Message to My Fellow MSA Warriors
Living with a terminal illness like Multiple System Atrophy (MSA) is like walking with a shadow that never leaves. It’s always there, lingering just out of sight, a constant reminder of what’s to come. If you’re anything like me, you’ve probably found yourself consumed by thoughts of the end. How much time do I have… 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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Continued from May-MyTrial Journey: Treatment Decision Week 1 Update
MyTrial at Brigham and Women’s Hospital. The innovative approach of Khurana Labs & The Harvard BioMarkers Study gave me hope then, and today, I’m excited to update you on my second trip to Boston and the beginning of my treatment journey. Continue reading
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“Living with a Terminal Disease – Funny, You Don’t Look Like You’re Dying”
In a strange way, that’s exactly what I’m going for. When people see me and don’t realize the battle, I’m waging every day, it means I’m winning small victories. For those of you who don’t know, I’m living with Multiple System Atrophy (MSA), Continue reading
Living Beyond the Diagnosis 