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#1: So, I've got this brain disease …
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- Опубліковано 6 сер 2022
- 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 case very rare.
I hope these videos provide some benefit to those close to me, as well as to medical professionals and others with this disease.
Much more to come soon!
Thank you for taking the time to record your feelings about your experience with CAA. My nephew is dealing with a brain tumor and he, too, is very young. I admire you for your bravery and your willingness to share your journey. Much love & peaceful vibes to you, Mike, & Casey. 💕
Thank you, Mary. I am so sorry to hear that about your nephew. I hope and pray he's in the best possible hands, medically, and that they're able to successfully treat his tumor. ❤️
Melissa, I have never seen anyone more open and honest as you are in this video. I can't imagine how difficult this diagnosis is to process, and I know these videos will be incredibly beneficial to those with the disease. Thank you for sharing your difficult journey.
We are sending all of our love and prayers. Thank you, for your vulnerability. It's been a long time, but we as a family are in your corner and thinking of you. ❤️❤️❤️
What a fucking kick in the ass. I’m grateful for your bravery and openness.
Melissa, thank you for sharing your truth with so many. Your authenticity is a generous gift for everyone who sees this and for your family now and in their future. Sending you light for your dark moments and peace for all your moments.
Melissa, I salute your bravery. Stay strong and know that we're all pulling for you.
I'm honored to be your social media friend, Melissa, even though we've never met in person. Thank you for this gift of deeply meaningful sharing. It will be a beautiful blessing to your family members present and future, your friends, and all the rest of us who are inspired by your courage. Sending love.
Thank you, dear Melissa, for sharing this with us. ♥
Great video. Thanks for being so open and sharing. This will undoubtably help many people.❤️
Sending love.
Thank you for so bravely sharing yourself. I’m deeply sorry that you are going through this and keeping you, Mike, and Casey in my prayers. I will reach out to set up some time to visit. 💜 Julie Cusker
This is the hardest video I have watched and the bravest video I have watched. Dear Melissa I hold you in my heart and give you a virtual hug. I am just so upset about this. I am so so sorry. Much love your way.
I feel the hug, my friend. Sending one right back to you.
literaly just fell in love with you! your courage and strength (even in these little windows) is an inspiration!
Wishing only good and healing thoughts for you, Melissa.
Melissa, I just found your channel. I am sorry you got that harsh diagnosis. There are lots of us with neurological issues feel free to reach out if only for a bit of support.
I am so happy to have you in the world. I would love to visit any time. Your essence just shines through.
Melissa, I discovered your channel only today via Facebook. Know that I will follow your journey as long and as much as you are willing to share it. All my love to you…
Thank you for sharing your heartbreak! I’ll be praying for you!
Many thanks. ❤️
Grief is a fucking beast. This is a beautiful thing you are doing 💗
Melissa-thank you for your bravery and thoughtfulness is sharing this journey with your friends and loved ones. While difficult to accept that you have this illness, I want to be as close to you as possible. Living in Florida, it seems this avenue may be the only way I can. ❤🙏
I love you, Sue. If you ever have plans for a visit this way, please message me!
Thanks for sharing life can change in a blink of an eye it's so sad heartbreaking why good people have 2 go through this not fair sending prayers and love
Thank you so much for your kind words. I'm sorry for not replying sooner. I'm usually much better about that but a lot has happened and I didn't quite know what to say for a while. (I'm posting an update shortly.)
God bless you. You are such a brave soul. Thank you for sharing your journey with us and I plan to be right here . 🙏🏾🙏🏾🙏🏾. ❤❤
❤️
Wish you the best but mostly stay strong!
Thank you so much.
Thank you for sharing. I just got my diagnosis today for CAA. I feel overwhelmed to say the least. Things haven't totally registered for me yet. I'm sure in a few days l will not look at life the same.
I understand! Several months into this, I'm still going through different stages of processing it all. I'm happy to connect for a chat, anytime. (Do you use Twitter? I'm @CAAHeadCase)
Take care
Melissa Boyack Thank you for sharing your thoughts and how you feel. You are far too young to be affected by this disease 😢💔
My husband was diagnosed at 68. Even though he can talk under water 😂 he never expresses how he feels emotionally. It will be good for him to watch and listen to you talk. 🤗
Thank you
Sending you love and light. Thank you!! for sharing
Mellisa, I am not a very brave/strong person and I had been holding off to reach out to you since your first post on Facebook. I was having such a hard time processing the information-it was like I didn’t want to accept. I finally gathered the strength to watch this video…and I am glad that I did because it truly helped me to acknowledge my own grief on this. Your strength gave me the some strength to hold up, put my own grief aside, and reach out to tell you that I love you…for who you are. And that I want to be with you-in spirit and love, my beautiful friend. ❤️ And, I will come to see you very soon.
There was a time, when I had dreamed of becoming your neighbor…dreamed of all the good time that we could have had together. Watched our daughters grow up. My dreams were cut short with everything that happened in my life…but I kept all the love and time we got to spend together. I want you to know -I am here and will always be whenever you feel like you want a friend to talk to.
Oh, my dear Nivi! I miss you, my friend. You have the kindest, truest heart and spirit. If you are able to visit, it would be wonderful to see you. ❤️
Hi Melissa.. God the Creator of all things has you in his hand. I'm praying with and for you and your family during this journey. ❤️🙏🏾
Hi Melissa! This video popped up on our UA-cam a few days ago and my husband and I watched it, plus all your other videos about this illness. I have it too. I was diagnosed in March of this year. I had never heard of this illness before. I have a lot of the same symptoms that you mentioned in the video. There’s several groups on Facebook about this disease. They are very helpful. If you’re interested in joining any of them, I’d be more than happy to share the links with you. I’d love to talk more ❤
Hi, Trudy! Thanks so much for reaching out. It's so interesting how often I come across other people with similar symptoms, given that they keep telling me they suspect the symptoms are unrelated to the microbleeds. I think there's a need for further investigation across the CAA patient population, perhaps especially in those of us who are younger.
You are right about the FB groups, they're so helpful. I belong to a couple of them. I'm sorry we have this in common but would love to chat anytime.
Here's my profile link if you'd like to send a note through Messenger.
facebook.com/melissa.boyack?mibextid=ZbWKwL
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I love you so much!!! I am in Rochester until Friday and will text you - I would love to stop by for an hour if you feel up to it 💓💓
Melissa I’m so sorry… you’re the last person who deserves to go through something like this. Courtney and I will keep in touch, and hopefully plan a visit soon. Sending all our love to you, friend ❤️
It would be so awesome to see you two! (Subtle hint: I've really been wishing lately that I could spend time with adorable babies, too.)🙃
@@Db8it oh we can help with that no problem 😉
Sounds like build up of beta anyloid proteins inside the vains that causes small hemorrages.
How many shots did you take???
Check out a lady in the UK. She sounds just like you. Says very similar things. She’s looking to connect with people who have CAA. You can find her under, Cerebral Amyloid Angiopathy - Let’s talk
Yes, I know who you're referring to. She and I have connected a little bit. I apologize for not replying to you sooner. I was going through some changes. (New video will be up soon that explains.)
you are so brave. I sent you a message in Facebook messenger. is that what "DM" means? (remember, I'm old!)