Early Onset CAA #11: Why I Had to Stop Singing & What That Means to Me
Вставка
- Опубліковано 9 вер 2024
- 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: • Draw the Circle Wide . (I recommend starting with the short reading at about 36:55. The sermon begins directly after.)
Check out my other videos for a window inside my experience with early-onset cerebral amyloid angiopathy (CAA), a rare, untreatable & incurable vascular neurodegenerative disease.
thanks so much for sharing.
I love that there were birds singing in this. Thanks for telling your story. I see you.
I saw this quite by chance. I hope you are still well. Although this is 3 months old as I watch you look well. Interesting to hear from another CAA sufferer and also regarding singing. I collapsed nearly 4 years ago with an inflammation on the brain. I live in Munich, Germany so I was able to be taken very fast to ICU at the University neurological hospital and well looked after...just in time as it appeared. After scans, tests and a biopsy the doctors told me I had many micro bleeds and they were unable to locate the main source of bleeding and its wasn't really the CAA they knew of. They said I have a relatively rare version of it for which there was no treatment at all. The general prognosis wasn't good. Four years on I am still working (from home with no stress), and luckily I am still quite sharp. Though there are bad days when I struggle, I have managed to keep busy making art and a lot of music composition in my bedroom studio which I set up to help me though this. I am writing and recording lots of music and pop/rock songs...just for me and it includes singing. I am not really a good singer but I cannot get anyone else to sing. I have discovered what absolute joy singing is! It certainly does make us happy and it's actually had a very positive effect on me. I hope by now you have been able to enjoy singing again. Sorry, this is too long but I just wanted to say..keep going, with music and art as much as your energy allows. They are helping me get through it. You are not alone.
Hello, and thank you for sharing this! I'm sorry for taking so long to reply. (I'm posting a video right now that explains why I've been absent.)
My sister and her husband are opera performers in Passau, so that feels like a small connection to your experience. 😊
It's really good to hear how well you're doing, and I very much hope you can sustain that for a long time!
I have loved getting to see you sing and never knew about your struggles behind any of it. Thank you for sharing - I love you 💕
❤️❤️❤️
Hello , this is all very interesting to me , as I have capillary loop fragility with a diagnosis of Dermatomyositis since 1991 . I just wanted to pass on a tip to you . I have found something that seems to stop my issues with fragility . I take citrus bioflavonoids daily now . I no longer have to be so careful about touching certain areas on my body , that they would bleed under the skin and they would leave red spots , sometimes large areas would bleed underneath my skin especially my neck and hands and face , wrists too . Yes i tell my doctors that this supplement works . Im not convinced they believe in anything but pharma meds though .
Thank you for sharing this! I'm glad you've found some relief. Apologies for taking so long to respond. I have been hibernating a little.
@@Db8it You are most welcome! thank you . Feel Better 🙏🏼🫶🏼❤️
@@Db8it Have you tried the citrus bioflavonoid's yet ? It really changed my life . I always buy the NOW brand vitamins . But Im not selling a particular brand ! I think its because they are in my price range plus they are never full of fillers etc.
Not yet, but I will look into it some more. 🙂
Promo>SM