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- Видео 17
- Просмотров 15 644
Bad Capillaries
США
Добавлен 28 май 2006
In May 2022, at age 50, I was diagnosed with a progressive, untreatable vascular neurodegenerative disease called cerebral amyloid angiopathy (CAA), a condition that's fairly common among the elderly but very rare for people my age. Soon thereafter, this account became my video journal.
BUT WAIT … things since then have gotten, shall we say, complicated. If this sounds familiar to you or someone you care about, here's where you can climb aboard my ongoing diagnostic and symptomatic rollercoaster.
I hope that the experiences and reflections I'm sharing will be helpful to others who live with CAA, ME/CFS and chronic migraine and to friends, family, and serve as an anecdotal resource for healthcare practitioners, researchers, and advocates.
Melissa Boyack, Western NY
BUT WAIT … things since then have gotten, shall we say, complicated. If this sounds familiar to you or someone you care about, here's where you can climb aboard my ongoing diagnostic and symptomatic rollercoaster.
I hope that the experiences and reflections I'm sharing will be helpful to others who live with CAA, ME/CFS and chronic migraine and to friends, family, and serve as an anecdotal resource for healthcare practitioners, researchers, and advocates.
Melissa Boyack, Western NY
Видео
Early Onset CAA #12: Diagnosis confusion!
Просмотров 84310 месяцев назад
Who the hell really knows anything, amirite? Just when I thought I had been given a miraculous reprieve … the plot thickens. Also, some observations about our healthcare culture. Check out my other videos for a window inside my experience with (maybe?) early-onset cerebral amyloid angiopathy (CAA), a rare, untreatable & incurable vascular neurodegenerative disease.
Early Onset CAA #11: Why I Had to Stop Singing & What That Means to Me
Просмотров 662Год назад
Music and singing have been so important to me throughout my life, and my illness has essentially stolen my voice. In this video journal entry, I talk about how my relationship with singing evolved and what it feels like for it to have ended. It's a bit rambly, but I hope you'll make it to the end! Listen to the sermon I gave at First Unitarian Church of Rochester on 4/23/23 here: ruclips.net/v...
Early Onset CAA #10: It's my anniversary!
Просмотров 323Год назад
This is just a quick shout out to making it through one year of being symptomatic with CAA and not getting any worse! Browse my earlier videos for some background about my video journal project, including my diagnosis at age 50 with cerebral amyloid angiopathy (CAA), a vascular neurodegenerative disease that turned my life upsidedown. Subscribe for future updates, stories, and occasional singin...
Early Onset CAA #9: Bleary-Eyed Tribute to a Badass Hero
Просмотров 274Год назад
Today, I cut through some thick brain fog to offer a tribute to the remarkable life and legacy of leading disability rights activist Judy Heumann (December 18, 1947 - March 4, 2023). If you aren't already familiar with her, please take a few minutes to learn more about Judy here: judithheumann.com/ Judith Heumann - Wikipedia en.m.wikipedia.org/wiki/Judith_Heumann Browse my earlier videos for so...
Early Onset CAA #8: Talking with Strangers
Просмотров 612Год назад
I don't get the pleasure of random encounters much lately. This morning taught me something I had forgotten. Take a look at my earlier videos for background on why I am doing this, including my diagnosis at age 50 with cerebral amyloid angiopathy (CAA), a vascular neurodegenerative disease that quickly turned my life upsidedown. Subscribe for future updates, stories, and probably some singing h...
Early Onset CAA #7: Impromptu news, ongoing questions, and a note about guilt
Просмотров 348Год назад
We're in for the long haul now, still with more questions than answers, but there is some good news. I wrap things up with a special message for friends I haven't heard from in a while. Take a look at my earlier videos for background on why I am doing this, including my diagnosis at age 50 with cerebral amyloid angiopathy (CAA), a vascular neurodegenerative disease that quickly turned my life u...
Sangin' in my jammies: Rain by Patty Griffin
Просмотров 215Год назад
A bare bones mini recital for all of my loved ones and everyone else who has been feeling like things are Just Too Much over the past year. We will get through this together! Just hold onto one another! ❤️ #acappella #singing #noeffects #music #healing #healingmusic
Early Onset CAA #6: Why TF Did I Do That??
Просмотров 832Год назад
For some reason I thought it was a good idea to try to drive today. My brain smacked me for it. Live and learn, I guess? Subscribe to hear more about my experience with early-onset cerebral amyloid angiopathy (CAA), a rare neurodegenerative disease that I was diagnosed with in May 2022.
Early onset CAA #5: Majorly Missing Making Music
Просмотров 590Год назад
In which I reflect on 12 years with my band, Orange Sky, and the sense of purpose that surrounded all that we did. Plus, a couple of good-news snippets. Take a look at my earlier videos for background on why I am doing this, including my diagnosis at age 50 with cerebral amyloid angiopathy (CAA), a vascular neurodegenerative disease that has quickly turned my life upsidedown.
Early Onset CAA #4: Middle school stories I've told almost no one
Просмотров 624Год назад
My first video that goes way beyond this illness to share some reflections on my formative experiences. Everyone who knows me knows I have an activist heart. These very personal middle school memories provide a glimpse into how that ethos took shape for me. Take a look at my earlier videos for background on why I am doing this, including my diagnosis at age 50 with cerebral amyloid angiopathy (...
Early onset CAA #3: Swimming through red tape + thoughts on optimism
Просмотров 1,6 тыс.2 года назад
Takeaways: Disease management and disability benefits are 90% paperwork. Also, how important is it to keep a good outlook on the future? That's complicated.
2016 Throwback: Charlie, our first cat, in rare form (may he rest is peace)
Просмотров 1802 года назад
In which the typically aloof Charles le cat gets uncharacteristically warm and fuzzy. (You know this video is old because there's a land line!)
Early onset CAA #2: More medical details + things I'm looking forward to
Просмотров 1,8 тыс.2 года назад
I got to see my neurovascular specialist today! I'm also working on getting a second opinion from someone very exciting. Meanwhile, I'm feeling a little less funky after undoing an error in judgment, and I'm eagerly looking forward to some family visitors who will be arriving soon.
#1: So, I've got this brain disease …
Просмотров 6 тыс.2 года назад
Entry #1 in a video journal where I will be sharing all about my experience as a person with early-onset cerebral amyloid angiopathy (CAA). CAA is a terminal neurovascular disease in which amyloid protein deposits build up in small cerebral blood vessels. There is currently no treatment or cure. While CAA is somewhat common among the elderly, I was diagnosed this spring, at age 50, making my ca...