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Bad Capillaries
United States
Приєднався 28 тра 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
Відео
Early Onset CAA #12: Diagnosis confusion!
Переглядів 83610 місяців тому
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
Переглядів 661Рік тому
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: ua-cam.com/vi...
Early Onset CAA #10: It's my anniversary!
Переглядів 324Рік тому
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
Переглядів 275Рік тому
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
Переглядів 611Рік тому
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
Переглядів 346Рік тому
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
Переглядів 214Рік тому
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??
Переглядів 828Рік тому
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
Переглядів 588Рік тому
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
Переглядів 623Рік тому
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
Переглядів 1,6 тис.2 роки тому
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)
Переглядів 1792 роки тому
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
Переглядів 1,8 тис.2 роки тому
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 …
Переглядів 6 тис.2 роки тому
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...
Hi, I watched this video as I'm not sure yet what I have, looking for signs and symptoms online on UA-cam. I've been going to the doctor, and finally going to get an MRI scan on my brain. Newly subscribed to be able to follow your journey, to support you and my journey too. Not sure how this will go, but you seemed like a lovely neighbour, as I'll think of it, if you need to vent, breakdown, or want to hang out online we can uplift each other. But I'll keep it short because typing for me is too much, or I'll go on camera if need. Thanks for the video you've done well considering. You will draw strength from your husband and daughter.
Hi, Debbie. Thank you for your note. My health situation has evolved a good deal since I posted this first video a couple of years ago. The two most recent videos (#12 & #13), which were posted last October and a few days ago, respectively, help explain the new shape of things. Feel free to share any info you'd like with me here! I'll try to share whatever additional resources I might have. When's your MRI?
You are incredibly brave. Sending prayers and hugs
So good to see your post and learn about your new insights. Stay strong my friend.
so DAMN nice ta see yer face in the place again!
MECFS. Please define that again.
Sure thing! That stands for myalgic encephalomyelitis/chronic fatigue syndrome. Here's a link to an excellent source of info, including symptoms and additional terminology: solvecfs.org/me-cfs-long-covid/about-the-disease/
I am sorry for your situation. My son suffers from headaches on a daily basis and even went to a neurologist.And got an mri. Could you tell me what test confirmed this for you?
Please forgive me. I didn't see your comment until now. My CAA diagnosis came as a result of an MRI that showed evidence of multiple past microbleeds. However, most chronic headaches and migraines don't seem to be caused by anything that serious. It's more likely than not that my migraines are not directly caused by CAA . I just happen to have several neurological issues that overlap. Medical science still really knows so little about the brain. I hope your son has a good neurologist and finds some relief soon!
I have this.. I can relate. I feel your pain.
I'm so sorry that you're also dealing with CAA. My diagnostic picture has become more complicated over the past couple of years. (Videos #12 & #13 explain further, if you're curious.) I hope you've got good doctors and a strong support system! ❤️
How many shots did you take???
Sorry? Shots of what? I don't remember exactly what I said in this old video. 🙃
Hi
Sounds like build up of beta anyloid proteins inside the vains that causes small hemorrages.
Yep, that's a good description of CAA.
What are the 4 B/P med you take ?
Sorry for not replying sooner! I'm now only taking two; losartan and verapamil.
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.
Take care
Sorry for your situation my wife has just been diagnosed with caa and we are at a loss we live in Michigan and the Drs here have never delt with this and have no clue to help us we are still trying to deal with it. We will pray for you and all the people that have this diagnosis.
Thank you for sharing your experiences in these videos having been diagnosed with CAA. I never heard of the condition until my father recently was released from ICU in Miami, FL and diagnosed with CAA.
Thank you so much for this video ….my brother who is 78 has recently been diagnosed with CAA……what you are describing (the weird feeling over your head and dull headaches) is what he tells me he is feeling. Re the doctor’s shutting down …yes l’m afraid that’s what he has experienced as well….its as though he is a ‘moaner’. Thank you once again - your video is exceptionally informative. I believe in healing through prayer ….l’ll be praying for a complete restoration of health for you. God bless you!
Thank you. I'm so sorry this is happening to your brother. I hope he is able to find a practitioner who is better equipped to listen and care for him with compassion. ❤️
Melissa, we’re you ever able to find a good support group online for people with CAA? My sister is having a real hard time with her CAA. Recently lots of dizziness and vomiting. Have you experienced any of this at any time?
My brother has dizziness and nausea….he has a recent diagnosis of CAA
This is an excellent group moderated by another CAA patient who has become a good friend. I highly recommend it. facebook.com/groups/374036557981756/?ref=share&mibextid=NSMWBT
Melissa, my sister has been diagnosed with CAA. She suffered terribly with migraines. She was told the importance of good blood pressure. Since she now has improved her blood pressure she no longer has migraines. I’m wondering if you are also on blood pressure medications. I hope you will see this question and be able to answer my question. Best wishes to you. Debbie
I am so glad that worked for her! Yes, I am also on BP meds. Unfortunately, it doesn't help the migraines much.
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 🩵
Hi, my Dad was diagnosed in 2017 but he didn’t tell his kids. We found out in December 2021 after his 3rd stroke and I made it my mission to see what was going on. After that 3rd stroke he was bad off, unable to live on his own- he would forget to eat, bath, pay us rent. He had gotten so bad with daily living activities- us kids got him a caregiver. Now in 2023 almost 2024 he has a caregiver. He is blurry eyed a lot, urinate on himself at times, he has to have reminders for everything. Just recently - he has started to forget my name. He speaks very little, I believe it’s because he can’t remember. I am praying for you & praying it’s not CAA. God bless you and thank for you for telling your story. I follow another lady with CAA as well since 2022. God bless
Thank you. I'm so sorry you're having to watch your father go through so much. I know that's terribly painful and can feel like a long, dark road. It's great that he has a caregiver - for your sake as well as his. Be well! 💜
Love u so very much
❤️
Hi honey - first, you do look great, so good idea to do this video now!! Thanks for updating us - it's so strange, what you are dealing with. We are keeping you close in our hearts and minds. xoxo
XOXO ❤️
Fri 10/20/2023 9am. Melissa, maybe this is why the terminology is of a "Medical Practice"? The Doctors are not ever finished with their learning, they are only "Practicing" their trade on us?
bout damn time woman!! So very glad to see that smile again! :)
Thanks, Doc! ❤️
Talk about a medical mystery. Wow. I was struck by your comment about how uncurious docs have been about some of your symptoms. It's like it doesn't register with them if it's not in some book. What do you make of it? (PS - great hair ⭐⭐⭐⭐)
I really don't know. I'm just determined to keep pushing forward with whatever doctors I need to see to figure it out, if that's even possible.
Wow, Melissa, how traumatic must that be for you. I hate to think this has happened to you. How on earth can one deal with that info. Stay strong and keep doing your videos. If your like me I started my channel just so I could talk to myself. LOL. Didn't realise there were people out there than needed them. Take Care, Jean
Thanks, Jean.💙 These vids are definitely a form of therapy sometimes! I started this partly so that my daughter and other family would be able to look back later and see what I was experiencing, and also so that I might provide updates to friends more efficiently. Having to explain it repeatedly can be tiring. Have you found that as well?
always nice to see you! sorry to hear about this stressful situation. :( I know what you mean by 'shutting down', havent experienced it from a doctor per se but definitely from auto mechanics. ;) food for thought; confirmation bias, when you have a hammer every problem looks like a nail, etc. sigh. I hope you get some clearer information/insights soon.
Thanks, man. Nice to see you, too!
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!
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. 🙂
Wish you the best but mostly stay strong!
Thank you so much.
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.)
Thank you for sharing your heartbreak! I’ll be praying for you!
Many thanks. ❤️
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.)
I have the same diagnosis, so want to thank you for sharing your experiences in this format... of a weird disease that is supposed to occur in much older, less healthy people. Thank you(!!@
Thank you for connecting. I'm so sorry it took me a long time to reply. Things got very confusing for a while and I didn't know where to begin, so kind of checked out for a bit. (New update will be live soon.)
Promo>SM
thanks so much for sharing.
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 💕
❤️❤️❤️
I love that there were birds singing in this. Thanks for telling your story. I see you.
Congratulations on your one year anniversary! I just celebrated 6 months without significant change, any obvious bleeds or other events. Love your videos. Feels great to see others LIVING with CAA!
Congratulations to you, too! That's awesome!
belated happy anniversary! Glad you are doing well, Melissa, was wondering how you've been. Looking forward to your sermon, I could definitely do with some Unitarian positivity. ^_^ I've been hanging in, had a dark couple of months there but my creativity finally seems to be kicking in again w/spring, so that's a blessing. Take care! Regards, RW ua-cam.com/video/br0yxCwxH9A/v-deo.html
Spring is quite an elixir, isn't it? Glad you're on the upswing. 😊
It is so good to see your beautiful face. I'm thankful they are figuring out your tummy issues. You are an inspiration, my friend! Sending love and light always!
❤️ Thank you ❤️
Hi, Melissa. So good to see you. I still am unable to drive but hope to soon. I will keep you posted. You look so good n your video. So excited that you are speaking on April 23! ❤❤❤
XO 😘
I’ve been following your story. My sister has been diagnosed with CAA just this year. She has had several MRIs but has not yet been able to discuss her condition with a neurologist. So far her tests show one bleed. Do you know how many you have had? Can you tell when you are having one? I’m so concerned for her.
Hi, Debbie. It's really unconscionable that she hasn't even been able to speak with a neuro yet. I cannot imagine. Let's hope that gets turned around real soon! I've had dozens of microbleeds, but fortunately not even a small stroke so far. I have had many weird sensations in my skull over the years but have no idea when the bleeds occurred. If she only has one, it may be that it's a macrobleed or something along those lines, or they may be seeing white matter legions or another sign, in addition. I recommend asking your sister's PCP to actively push for her to be seen by neurology ASAP. You also may want to specifically seek out a vascular neurologist, which is the appropriate sub-specialty. This is a time for self advocacy! Best of luck to her!
ua-cam.com/video/VRVPLPFoJL0/v-deo.html
Thank you for sharing your journey and bringing to light about this disease. I lost my mom to CAA in 2020 she was 72. I stay active with the FB group and hope for more awareness and a cure. Mom would have wanted that. I will keep you in our prayers.
I am so sorry for your loss and that your mom had to endure this awful disease. Thank you for connecting. ✌🏻❤️
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
Thank you for sharing your back story I guess my strong beliefs, like yours ce from my exposure when I was young. Thank heavens.my parents did not express racism but certainly had close family that did. I could not ever understand there thinking. It sounds like we are at peace with our friends and feelings with no apologies. That's who you are. Take care until another day.
What is CAA?
CAA= cerebral amyloid angiopathy It's a vascular neurodegenerative disease in which amyloid proteins build up on vessel walls within the brain and break down the protective cells, leading to bleeding and/or dementia. My first video in this series provides more info on my particular case.
Oh this was a treasure for me to find. Your strong vibrant voice shows how much you are healing. It is so healing for us out here too, to hear it. ❤😊
Thank you, my friend.
Awesome!
nice! good control. you could probably crush some Patty Loveless, too. :D re: things being too much- yeah, my last indie album was called 'it's just all too much'. thank heavens there's art & music to keep us sane!