When I looked this up it said Cerebral amyloid angiopathy (CAA) is a type of cerebrovascular disorder characterized by the accumulation of amyloid within the leptomeninges and small/medium-sized cerebral blood vessels. Different kinds of conditions affecting the brain's blood supply can lead to different types of vascular dementia. Two common types are subcortical dementia and cerebral amyloid angiopathy. This could be why you have trouble remembering etc. You are a very courageous and brave woman to get on UA-cam and discuss your struggles and I hope it helps you. I hope much love comes to you through this. I posted the definitions for folks who do not know what this condition is. I send you much love and blessings. Hugs
Also.. sorry to keep adding comments.. but my husband has cancer. And it's not one of the kinds that can be cured. His oncologist told us "You don't have an expiration date stamped on the bottom of your foot." My husband has been given 6 months more than once for more than one condition. It's been 10 years since the most recent of those. Of all the times we think "I'm not going to make it" only once will any of us ever be right. We survive all the rest.. which isn't easier to live with.. but try to remember to live while alive.. the clock starts ticking the moment our hearts start beating.. but some just run a lot longer on a single wind than others.. so if you can.. stop counting ticks of the clock.. do what makes your heart happy. ❤ *Huge hugs*
Hi Jean…. I have recently joined a couple of CAA support groups on FB as my beautiful husband was diagnosed 10 and a half years ago with CAA… I was interested to hear your video and even more so because you are Australian…. I live in Sydney and my husband went into care over a year ago as I could no longer care for him anymore…. I miss him terribly but visit every day although the pain is immense. I would very much like to connect with you if you can and if you live in Sydney… you are so brave and it’s small starts like this that have the capacity to change the future of a disease like this…. I hope to hear back
Hi there, Yes it is a terrible disease. I have an email account where I will be happy to chat to you. I don't check it regularly but I will look forward to chatting. Email: mycaajourney@gmail.com regards Jean
Thank you Jean. My grandmother just had a CAA episode this weekend, but has since recovered. This past week has been the biggest whirlwind I’ve ever experienced. I’ve felt like I’ve just been in shock and numb for 7 days, but it all came out during your video. You are so right when you say there so few people talking about it. I must have scrolled past 50 scientific powerpoint videos before I got to yours. I will definitely watch the rest of your videos. Thank you so much and I wish you the best ❤
Hi, It is a real shock when you hear those words spoken. Nothing prepares you for that or for the feelings that come afterwoods. As someone who cares, you will go through many emotions too. Just remember, even if she never says it, she will always love you and appreciate the things you do for her. Take care Jean
Hi Jean, your video came up on my feed. Thank you for telling your story. 💜 My partner has Central Pontine myelinoysis,, it has some effect that are similar to yours. I recognise that spiralling depression in him that you mentioned and some of the cerebral problems that you have had, in him. He has totally changed. It is a very difficult time you have had. You are brave to tell your story. Hopefully the medical professionals can learn how to help you better. Your episodes are very impactful and have been scary for you. I think your videos may have more impact on others than you will ever know. Sending love to you and your family.
Thank you so much. I hope in some small way I can help others. It is a hard road we travel. I hope you are also getting some support because I think sometimes the ones we love get forgotten about.
Thank you so much for your video. I am 55 y/o and diagnosed with CAA last December. Our GP (with a lot of experience) didn't know CAA either. I have been doing onljne memory tests for 4 or 5 years now, I started doing that before I even dare to tell my spouse about that. I'm going to watch the rest of your videos. Thanks again. Greetings from The Netherlands!
Wow, young age. Your only a teenager. LOL It is a scarey time and if you are not able to, at the very least, get good information from your Neurologist then the lack of knowledge is debilitating. It is like constantly swimming against a current. Have you had any follow up appointments with a Neurologist? Keep in touch. Anytime. I do not answer straight away but I will answer. Are you on any facebook forums. They can help somewhat but still sometimes conflicting ideas.
@@mycerebralamyloidangiopath4710 Hi Jean, I am so delightful hearing from you. I see you posted some videos, so I'll catch up with them this week :) Teenager..... haha yeah :) My first neurologist was not a good one, apparently. My new neurologist is from an Academic Hospital (LUMC, Leiden, The Netherlands) 80 miles from my town. This hospital does co-operates with neurologists from Boston (you know, of the Boston Criteria) and some neurologists at the LUMC actually went to Boston te learn about the CAA. I think I cannot get any better than that, regarding specialism. I am grateful for this! I have an appointment for a couple of MRI scans next month, one for CAA research since there is a CAA research team at LUMC, and one scan for myself, as a patient. Yes I'm on the FB forum Cerebral Amyloid Angiopathy Support Group and Chat. I'll try to keep in touch! Your videos are an inspiration, thank you! God bless, greetings, Royston
@@RJSmith-jo7oe I thought I would check in on you and see how you are doing. I have been doing well in the CAA area but unfortunately 5 months ago I needed a hip operation and one week later I developed I.g.A Vasculitis of the legs. It's been a struggle but am just about healed now. I hope all has been well for you. regards Jean
I’ve only just come across your video. Thank you for having the courage to make it. I think that videoing any episode will be of great interest to serious people and especially the doctors when you go for check-ups or have to go to the hospital, considering the symptoms tend to disappear. Stay strong. ❤️
U did a fantastic job explaining your symptoms, and what was happening. I was curious when i clicked. (Also. I love your accent and found your voice soothing😊) I think this is something not well known. Which is Scary. And i learned a lot from this video. So thank u.
Hi Jean, I have just finished watching all you videos.As new to your site, I have sent my long story on one of your earlier videos which outlines my journey with CAA. Your sadness, and frustration with the medical system that is meant to be supporting us is very palpable. I feel for you. As you will understand when you read my story, as i also live in Australia. We are very fortunate to have a public health system. And private health funds. But i too experienced the lack of follow up and support when i was handed my exit summary and released to return home. No future appointments for MRi’s, no appointment with a neurologist. I have assembled my own team of physical therapists for my post stroke physical therapy who have been fantastic. But as for what is going on in my brain post haemorrhagic stroke, i have no idea. I have little faith in my GP to monitor my medications, particularly as l age and my condition changes with time. I am not even sure she knows much about CAA.i have found that trying to organise follow up appointments with a referral to the the public system falls on deaf ears and gets lost in paper work. All my records from my admission and surgery for my stroke and diagnosis is at a public hospital. So obviously that is where I would prefer my follow up.
Kerrie, can you give me the title of the video you commented on and I will see if I missed it. or did I answer you? It is very overwhelming I know. When I get the next referel (I am going to gp next week for another neurologist) I am going to get it in my hands and fax it through myself along with a letter from me outlining whats happening to me, what changes I am experiencing and what it is I want to discuss and that I am looking for an early appointment not to be triaged onto a long waiting list. I am sending it to my original neurologist in another hospital and so I am hoping it works. He also specialises in Vascular Dementia and so hope he takes pity on me. LOL. I live in Adelaide. What state are you in?
So sorry about what your going through my grandma has CAA and let me tell you it’s no walk In the park , I’m grateful she’s alive but it’s almost like you lose the person … what I would do to have a full conversation with her like we used too, but I will continue to care for her and pray for the best , god bless you and thank you for sharing 💕
Thanks Natasha, I sometimes feel guilty for feeling sad about my situation as I am not at a bad stage at the moment and so many others are. I try to get on with life at the moment but right now I have two family members who are living in hell. My brother in law was taken into surgery a about 8 weeks ago with kidney cancer and had the kidney removed. An MRI then found cancer in the lungs and treatment began. Each time he has an MRI they put dye in to see better and he has an alergic reaction to the dye and they have to give him high dose steroids. The treatment and/or Steroids has now put his bowl at risk of needing to be removed. so he had to stop the cancer treatment. Last night his blood pressure crashed he was evacuated by helicopter to another major hospital and was diagnosed with pancreatitis. My Sister has Non Hodgkins Lymphoma and will eventually die from it once the treatment no longer sends her into remission. She has had it for about 7 years. She was diagnosed just before my health issues started so you see my battle appears to be nothing yet compared to them. It is hard to cope with and I feel I cannot express what I feel cause nothing is really showing up that I cannot hide yet. I do not want to take away from them the issues they are dealing with. I manage my "episodes" without needing to go to hospital at the moment. My mental health and the fear of what is to come is my main problem at the moment. My symptoms appeared 7 years ago. I was diagnosed with CAA last year, so it weighs heavily on my mind as to when did my countdown start ticking . I cannot get it out of my head that I might only have around 3 or 4 years til the end. I am scared. Scared of what it will all do to my husband and kids and grandkids. Scared of being left alone anytime my husband goes out which is rare. Thank you so much for your email. I can feel the love you have for your grandmother. She is a very lucky to be loved like that. God bless you with the strength to see this through. Feel free to talk to me anytime you need someone to talk to.
@@mycerebralamyloidangiopath4710 Thanks 🙏 that was very nice of you to reply and share that with me I’m so sorry about your sister , and your brother life’s unpredictable the only one who knows what’s next is god… being a grandchild to someone who has CAA I can tell you is hard to watch the one you love go through something like that , but one thing is she never will forget me and our special memories and that’s something I cherish … you should enjoy every moment , it is scary but also unhealthy for you to worry about the future , these videos will be helpful to look at in the future but most importantly live for now and make the most memories you can … I pray for you and your siblings and the strength for your husband and family 💜
Your channel came up in my recommendations today, thank you for sharing your story. We have a lot of autoimmune issues in our family so I understand the frustration you must have felt on your journey to a diagnosis. I just wanted to say that I hope for peace, patience and love to you and your family.
Hi Sheila, I am new at dealing with comments so please bare with me if they don't seem to be showing on the video comment section at all. I am working through what I am doing wrong. LOL I am happy to keep chatting here with you. When the Doctor told me last year of my diagnosis, he was blunt and to the point. I never asked him at the stage if I would be put into the Hospital outpatients Clinic as I just assumed I would be especially for something that seemed so serious. When I was released from the hospital I was advised that my drivers licence would be suspended for 6 months and at the 6 month mark, I would be allowed to get my licence back. It took around 18 months to get it back due to a mix up between my two Doctors giving slightly different names to my diagnosis and the DMV thinking I had two medical problems but only one clearance for one medical problem, if that makes sence. I rang the hospital sometime later and asked when my appointment would be and they said that my notes did not mention organizing an appointment for the clinic. They did not offer a reason. My own GP felt the reason was because even though I was having "episodes", they were not lasting very long and more often than not when I had one, I didn't have another one that day. They didn't appear to be doing any harm at this stage. I felt that sounded probable. I don't go to the hospital when I have an "episode" because I was told to come back if I wanted to or when things "changed" and usually they have finished before the ambulance comes anyway. I have found many people do the same because when you get to emergency they usually admit you just in case. You stay in for a day or two and sometimes you don't even have one while you are in. We tend to think that there will be a time when change happens and then of course any change that differs from the norm is when we will get an ambulance. I hope that answeres your question. regards Jean
Also when you reply can you start a new comment on one of the other videos. I think I fixed the problem but by doing this I can see if I fixed it. Thanks Sheila
Hi Jean. This just popped up in my feed and I feel like this is me. I have been trying to get someone to listen to me for some time. Thank you for sharing your story, it has given me a new direction to follow ❤
Hi and thanks for the comment. You sometimes feel like you are a ship alone bobbing out in the ocean. If you feel like you want to chat more, you can email me. I take a while to answer but I will get back to you. contact me at mycaajourney@gmail.com
Hi, Just checking in on you and hoping you are well and have had some good luck with getting someone to listen to you. Feel free to message again and let me know how you are coping. regards Jean
Thanks for sharing with us it helps us to understand others medical issues that we don't have a great understanding of and helps bring unity to anyone suffering from debilitating conditions. Please remember that drs cannot guess how much longer anyone with any condition has left to live and we aren't promised tomorrow. Live every day the best we can even if it means a restful day in bed. Look after yourself and take care.
So sorry you've been through such a rough journey. There is a book you might be interested in called 'The Inflammed Mind'..by Edward Bullmore...he explains how inflammation causes depression (physically)...I thought it might answer a few questions for you. (There are also youtube videos, of the same name). I think you documenting your experiences, is a wonderful public service, and I feel you are a born story teller...not boring in any way!
In a way,I can relate a lot to my 'situation' and, although it's a rather unorthodox way of coping with it, my supporting KNAP team (Kaey, Noa, Arne,Patrick) is one of a kind. I have accepted that the injuries, the situation has created, are irreversable, so everything I do is to HELP people that I can relate to. A PTSD changed into a CTSS or a Chronical Traumatic Stress Situation because of a group of people that gaslighted me in extremis. I got 12 years on plus to find out where this kind of hostility came from and was so anxious about everything that seemed out of place, that I ended in an isolation without heat or warm water, without electricity in the kitchen, so I only could use the gas pits to make or warm up my food. Even then, I got bills that were too high to believe, if I was paying this for using so little water and electricity, how could others survive the created inflation. In the Winter, I had no heat and in Summer, I had no refrigerator - I can survive cold temperatures, but it's difficult to live on a 'camping' when I have always leftovers because I'm single (the ex moved to Thailand when it became obvious what his part was in the situation and my 3 children have their own life - the eldest even has moved to Australia). Today, my brother in law came to fix the electricity (it was not a dangerous situation after all, just one of those things that can't be explaned in a normal way) and it didn't give me the relief that I need to get back into a normal state of mind, I have to admit. Those 12 years under high pressure, without a period of recovering, leaves me no choice, but hoping that things will 'cool down' again. Nothing is normal in my life and I found out that this was the bet reason to camouflage the gaslighting that otherwise would have been obvious. I don't see a doctor anymore, tired to explain that the average knowledge of how our bodies function is not enough to understand the exceptions. Was it the anxity or was it something else that made me a wreck? The few times that I did exactly what they demanded me to do, I ended into a worse situation than when I could solve it my way. This is not the end of the story, but no doubt that this is the end of the first phase - I have a healthy mind and a strong body, if it would have been the other way around, I would not have been able to write this down. Maybe I can't SAVE the world, but I can help the people who feel lost and misunderstood. WE are awakening on a collective level and some of us are early birds, so maybe your symptoms are temporary and connected with what is happening on a much higher level, I don't know but can give you an educated guess based on my own experiences.
Hi Jane ~ It looks like my original post was deleted or I didn't send it correctly. My husband is currently being diagnosed with this. I'll share more later - but am curious about the dementia symptoms and coping with this. Thanks again!
Hi Sheila, in 2014, when my first symptoms presented, I had, within a 3 month period, had shoulder surgery, 10 days later a retina detachment surgery, (I was on heavy medication for these two surgeries), then a couple of months later the CAA symptoms presented. At first they thought I was having T.I.A's and as I noted in the video, I believed I was going to drop down dead. and because they couldn't diagnose what it was, I then went into a depression. This is when I really took notice of how my memory had changed. I had trouble remembering short term instructions. While this was all dawning on me, I realised, when someone would bring us the past, I couldn't remember a lot of things in the past. My Neurologist suggested that it was faux dementia caused by the depression and I accepted that. It seemed to make sense. This was scarey for me as I had always had a good memory. Never forgot an appointment or birthday date. It was disturbing to me but I believed it was the depression and was comfortable believing that as it never really got worse it was just going to be my life. Apart from forgetting the usual, I found that when I went on holiday for example, even to our usual destination, I had trouble remembering which road I was on even though we might have been there just the day before and couldn't find my way back to the Hotel. If I made a statement and then someone challenged me on it, I would usually stand my ground if I knew I was correct and argue the point. I now had to learn to agree to disagree because I realised that it was not possible that I was incorrect in what I was remembering or how I was remembering it. I would usually start my conversation with " I may be remembering this wrong but". LOL. Over the years between 2014 and now, I don't feel the memory has significantly changed. Yet. I do think I drive my husband nuts though but we are on a journey together now and he too is learning how things will go. I did read that when interacting with someone who has dementia that you never correct them.You just go with the flow with what they are saying. My husband is trying hard to do this but I think it doesn't really worry him to much yet as I am now 66 years old and he feels that part of this is my age. He too is becoming a little lax in his memory. I think, although now in denial, that he is just living one day at a time. He has not researched CAA as I think he wants to bury his head a little right now I hope this helps answer your question. Please keep following. Good luck and please let us know how things are going for you. Jean
That’s what my grandma has now is dementia it’s not easy at all I wont sugar coat and it’s tough keeping strong even though I put a front , I pray for your husband and wish you both the best
@@mycerebralamyloidangiopath4710 Good morning Jane from Michigan! We have enjoyed a wonderful summer season of weather! I appreciate you checking in. Dennis is holding his own, he has been formally tested for Dementia and does have areas of significant cognitive impairments and other areas of strength. Problem solving and processing skills are the weakest areas. Dennis also has Pure Autonomic Failure - which restricts his life style even more. It causes his blood pressure to drop with any activity related to standing positions. He has spells of weakness and lightheadedness, and needs to go lay down (not sleeping) for up to a couple of hours at a time - and could be twice a day. I hope you don't mind me asking this - but the biggest concern I have is supporting myself as I support Dennis. Our new and future normal is not terminal - but closing our world in. How do you and your husband communicate your needs and how does help you? ~ Maybe this will help me support Dennis more. Also, how do you feel about the affects your condition has on your husband's life and future? I know there are no easy answers. But maybe your insight would help me help myself and Dennis also. NOW ~ how are you doing? Dennis has a big increased risk in stroke - does this apply to you also, are you on any medications? And how do you manage looking at the future or change in your everyday life? Are you getting counseling or have a group for support to provide you mental strength? What do you need from others that currently or if offered would help you cope? I continue to think about you and will pray for strength for you. Thank you for reaching out, please feel free to use ME as a support person in your darker moments. With love ~ Sheila
Doctors have already witnessed me having continual episodes when I was in Hospital 2020. I am planning to try and video next time I have one if I can for the channel
Very informative. We live in Qld. My brother was diagnosed with C.A.A. yesterday after 2 months in hosp/rehab having had 5 or 6 bleeds the first week & serious delirium for the subsequent 4 weeks. The initial bleed was in Oct 2023 & he was diagnosed Dec 2023. Is there a Facebook page for C.A.A.? I'll have to check
Hello there. Sorry to hear about your brothers diagnosis. It's a bitter pill to swallow. If your brother would like to join a patient only facebook group try this one : facebook.com/groups/374036557981756 It is not for family or care givers just for patients. it's a safe group to talk with. We often just need someone who really knows what we are going through to chat with. For yourself, family and care givers try this one: facebook.com/groups/443042499391499/ just copy these links and paste into the search bar on your laptop. Or this one: facebook.com/groups/775736939275525/ These groups have a fair bit of information but please do remember that none of us are Doctors and you need to do your own research. Not all Doctors/Neurologists are familiar with C.A.A and you might find you have to speak up for your brother and get second opinions til you get proper answers. Wishing him and your family Strength as it's going to be a bumpy road.
Thanks for this info Sheila. I had to discard my pet channel as my attention span isn't long enough to run my previous channell. Well, there is something I forgot to add... My attention span is shorter too now. Jean
Hi Jane ~ would you mind sharing an update on your condition? I noticed you stated a life expectancy of 10 years and you're in year 7. Is an anticipated stroke the concern? How are you doing? Sorry this presents so bluntly with questions, it is with concern I am asking.
Hi Sheila, how are you doing. I was told life expectancy was around 10 years plus or minus 2 years. We all know we have to take that info with a grain of salt but your mind does wonder. As I was once told "Who knows if you will die from CAA....you might get hit by a bus first" I have my appointment to see my Original Neurologist on the 27th (if I remember correctly) so hope to get some more questions answered. If there is one thing I am learning from so many people is that we are all getting different and conflicting advise from the Medical profession. I will put out another video about that appointment after I have seen him. How are you doing? Well I hope
My huband has recently been diagnosed with this. The neuroloist isn't concerned, says it's part of aging, my husband is 66. They did say he has no risk factors, so that helps. We are in the U.S. with excellent drs.
@@mycerebralamyloidangiopath4710 No, I didn’t misunderstand, I just ask because it can cause many neurological symptoms and are under diagnosed. Most people’s are only seem on autopsy because of how under diagnosed they are, and 25% of people have them (found only post mortem)
@@Ida-Adriana So Sorry. I misunderstood your question. I will definately ask about this when I get to have a serious conversation with a Neurologist. Thank you for bringing this to my attention.
No Cure for CAA. No medication for it. I was diagnosed in 2020 some medication was prescribed to calm the seizures. It did not work and so I decided to stop taking it as it didn't work and I didn't want to put chemicals into my body if I didn't have to. My seizures are mild at the moment and I will probably have to take meds in the future.
C.A.A stands for Cerebral Amyloid Angiopathy. Cerebral amyloid angiopathy (CAA) is a condition in which proteins called amyloid build up on the walls of the arteries in the brain. CAA causes bleeding into the brain (hemorrhagic stroke) and dementia.
Would be to simple to say …don’t worry….I would ,but how many times we heard dr said to cancer patient…you have few months to live…and they live till today and they are ok.I just want to say,do not believe everything what you hear in dr.office. And I wouldn’t do any tests that involve the die or be invasive. I would go on KETO diet for 3 weeks,but start slowly.eliminate slowly processed food,sugar,grains pasta,bread drinks with sugar etc,Than be 3 weeks on keto ,that means no carbohydrates of any kind,except the one in vegetables,( about 20-30 gr/day,but only for 3 weeks.Than change to low carbohydrates diet,meaning you can eat more carbohydrates ,but not to much ,maybe 50gr/day.And big NO to weat,grains ,rice sugar ,starch( no potatoes) You can eat meat,cheese,vegetables,eggs ,and fat is good.With fat you won’t feel hungry.,but you will loose wait .Try to skip breakfast,so eat lunch not drastically,but change time maybe ( if you eat breakfast at 9:00 change for 10:00 for few days,than change for 11:00.First 3 weeks you should feel better,won’t be any depression,and your memory will improve.Would be good if you eat organic food.And use good fat,like butter,35% cream,olive oil,avocado oil( no canola,or vegetable oil or sunflower oil)You will feel better,try cost not much ,and remember ,food can be your medicine or poison.When you skip totally your breakfast,keep that way.Have tea ,or coffee with MCT oil or coconut oil and 35% cream.you won’t be hungry .And good fat is necessary for our brain .Good luck,you such a nice person. You can find lots of video on KETO ,or low carb diet .
I have a few other medical problems and do moderate excercise when I can. I do online puzzles. I sit a lot but usually not watching t.v. I learned to crochet recently. I am raising a 7month old boxer puppy, trying to continue researching my family tree while I can so a lot of what I do is a "mental" stimulation. I believe our brains get damaged a little each time we have a bleed so any excercise is good.
I've never heard of CAA. May God wrap his arms around you to carry you through.
We all thank you. Take care
When I looked this up it said Cerebral amyloid angiopathy (CAA) is a type of cerebrovascular disorder characterized by the accumulation of amyloid within the leptomeninges and small/medium-sized cerebral blood vessels. Different kinds of conditions affecting the brain's blood supply can lead to different types of vascular dementia. Two common types are subcortical dementia and cerebral amyloid angiopathy. This could be why you have trouble remembering etc. You are a very courageous and brave woman to get on UA-cam and discuss your struggles and I hope it helps you. I hope much love comes to you through this. I posted the definitions for folks who do not know what this condition is. I send you much love and blessings. Hugs
I thank you very much. It is appreciated.
Also.. sorry to keep adding comments.. but my husband has cancer. And it's not one of the kinds that can be cured. His oncologist told us "You don't have an expiration date stamped on the bottom of your foot."
My husband has been given 6 months more than once for more than one condition. It's been 10 years since the most recent of those.
Of all the times we think "I'm not going to make it" only once will any of us ever be right. We survive all the rest.. which isn't easier to live with.. but try to remember to live while alive.. the clock starts ticking the moment our hearts start beating.. but some just run a lot longer on a single wind than others.. so if you can.. stop counting ticks of the clock.. do what makes your heart happy. ❤
*Huge hugs*
Yes I will try
Thanks for your vulnerability about this. It’s a difficult journey.
Thank you for putting your story out here to help others. I never heard of this. Wishing you and your family the best
Thank you
@@mycerebralamyloidangiopath4710i strongly believe that you will recover Things will pass away 🧚
Hi Jean…. I have recently joined a couple of CAA support groups on FB as my beautiful husband was diagnosed 10 and a half years ago with CAA… I was interested to hear your video and even more so because you are Australian…. I live in Sydney and my husband went into care over a year ago as I could no longer care for him anymore…. I miss him terribly but visit every day although the pain is immense. I would very much like to connect with you if you can and if you live in Sydney… you are so brave and it’s small starts like this that have the capacity to change the future of a disease like this…. I hope to hear back
Hi there, Yes it is a terrible disease. I have an email account where I will be happy to chat to you. I don't check it regularly but I will look forward to chatting.
Email: mycaajourney@gmail.com
regards
Jean
Thank you Jean. My grandmother just had a CAA episode this weekend, but has since recovered. This past week has been the biggest whirlwind I’ve ever experienced. I’ve felt like I’ve just been in shock and numb for 7 days, but it all came out during your video. You are so right when you say there so few people talking about it. I must have scrolled past 50 scientific powerpoint videos before I got to yours. I will definitely watch the rest of your videos. Thank you so much and I wish you the best ❤
Hi, It is a real shock when you hear those words spoken. Nothing prepares you for that or for the feelings that come afterwoods.
As someone who cares, you will go through many emotions too. Just remember, even if she never says it, she will always love you and appreciate the things you do for her.
Take care
Jean
Hi Jean, your video came up on my feed. Thank you for telling your story. 💜
My partner has Central Pontine myelinoysis,, it has some effect that are similar to yours. I recognise that spiralling depression in him that you mentioned and some of the cerebral problems that you have had, in him.
He has totally changed. It is a very difficult time you have had. You are brave to tell your story. Hopefully the medical professionals can learn how to help you better.
Your episodes are very impactful and have been scary for you. I think your videos may have more impact on others than you will ever know. Sending love to you and your family.
Thank you so much. I hope in some small way I can help others. It is a hard road we travel. I hope you are also getting some support because I think sometimes the ones we love get forgotten about.
Thank you so much for your video. I am 55 y/o and diagnosed with CAA last December. Our GP (with a lot of experience) didn't know CAA either. I have been doing onljne memory tests for 4 or 5 years now, I started doing that before I even dare to tell my spouse about that. I'm going to watch the rest of your videos. Thanks again. Greetings from The Netherlands!
Wow, young age. Your only a teenager. LOL
It is a scarey time and if you are not able to, at the very least, get good information from your Neurologist then the lack of knowledge is debilitating. It is like constantly swimming against a current. Have you had any follow up appointments with a Neurologist?
Keep in touch. Anytime. I do not answer straight away but I will answer.
Are you on any facebook forums. They can help somewhat but still sometimes conflicting ideas.
@@mycerebralamyloidangiopath4710
Hi Jean, I am so delightful hearing from you. I see you posted some videos, so I'll catch up with them this week :)
Teenager..... haha yeah :) My first neurologist was not a good one, apparently. My new neurologist is from an Academic Hospital (LUMC, Leiden, The Netherlands) 80 miles from my town. This hospital does co-operates with neurologists from Boston (you know, of the Boston Criteria) and some neurologists at the LUMC actually went to Boston te learn about the CAA. I think I cannot get any better than that, regarding specialism. I am grateful for this!
I have an appointment for a couple of MRI scans next month, one for CAA research since there is a CAA research team at LUMC, and one scan for myself, as a patient.
Yes I'm on the FB forum Cerebral Amyloid Angiopathy Support Group and Chat.
I'll try to keep in touch! Your videos are an inspiration, thank you!
God bless,
greetings,
Royston
@@RJSmith-jo7oe I thought I would check in on you and see how you are doing. I have been doing well in the CAA area but unfortunately 5 months ago I needed a hip operation and one week later I developed I.g.A Vasculitis of the legs. It's been a struggle but am just about healed now.
I hope all has been well for you.
regards
Jean
I’ve only just come across your video. Thank you for having the courage to make it. I think that videoing any episode will be of great interest to serious people and especially the doctors when you go for check-ups or have to go to the hospital, considering the symptoms tend to disappear. Stay strong. ❤️
Thanks for the advice Stay well.
You are very courageous. Thank you for sharing your words and your heart.❤
U did a fantastic job explaining your symptoms, and what was happening. I was curious when i clicked. (Also. I love your accent and found your voice soothing😊)
I think this is something not well known. Which is Scary. And i learned a lot from this video. So thank u.
Not sure if I already got back to you but if I didn't I appologise. Thanks for the comment. My accent is a mix of London Born but Raised in Australia.
Hi Jean, I have just finished watching all you videos.As new to your site, I have sent my long story on one of your earlier videos which outlines my journey with CAA. Your sadness, and frustration with the medical system that is meant to be supporting us is very palpable. I feel for you. As you will understand when you read my story, as i also live in Australia. We are very fortunate to have a public health system. And private health funds. But i too experienced the lack of follow up and support when i was handed my exit summary and released to return home. No future appointments for MRi’s, no appointment with a neurologist. I have assembled my own team of physical therapists for my post stroke physical therapy who have been fantastic. But as for what is going on in my brain post haemorrhagic stroke, i have no idea. I have little faith in my GP to monitor my medications, particularly as l age and my condition changes with time. I am not even sure she knows much about CAA.i have found that trying to organise follow up appointments with a referral to the the public system falls on deaf ears and gets lost in paper work. All my records from my admission and surgery for my stroke and diagnosis is at a public hospital. So obviously that is where I would prefer my follow up.
Kerrie, can you give me the title of the video you commented on and I will see if I missed it. or did I answer you?
It is very overwhelming I know. When I get the next referel (I am going to gp next week for another neurologist) I am going to get it in my hands and fax it through myself along with a letter from me outlining whats happening to me, what changes I am experiencing and what it is I want to discuss and that I am looking for an early appointment not to be triaged onto a long waiting list. I am sending it to my original neurologist in another hospital and so I am hoping it works.
He also specialises in Vascular Dementia and so hope he takes pity on me. LOL.
I live in Adelaide. What state are you in?
So sorry about what your going through my grandma has CAA and let me tell you it’s no walk In the park , I’m grateful she’s alive but it’s almost like you lose the person … what I would do to have a full conversation with her like we used too, but I will continue to care for her and pray for the best , god bless you and thank you for sharing 💕
Thanks Natasha, I sometimes feel guilty for feeling sad about my situation as I am not at a bad stage at the moment and so many others are. I try to get on with life at the moment but right now I have two family members who are living in hell. My brother in law was taken into surgery a about 8 weeks ago with kidney cancer and had the kidney removed. An MRI then found cancer in the lungs and treatment began. Each time he has an MRI they put dye in to see better and he has an alergic reaction to the dye and they have to give him high dose steroids. The treatment and/or Steroids has now put his bowl at risk of needing to be removed. so he had to stop the cancer treatment. Last night his blood pressure crashed he was evacuated by helicopter to another major hospital and was diagnosed with pancreatitis. My Sister has Non Hodgkins Lymphoma and will eventually die from it once the treatment no longer sends her into remission. She has had it for about 7 years. She was diagnosed just before my health issues started so you see my battle appears to be nothing yet compared to them. It is hard to cope with and I feel I cannot express what I feel cause nothing is really showing up that I cannot hide yet. I do not want to take away from them the issues they are dealing with.
I manage my "episodes" without needing to go to hospital at the moment. My mental health and the fear of what is to come is my main problem at the moment.
My symptoms appeared 7 years ago. I was diagnosed with CAA last year, so it weighs heavily on my mind as to when did my countdown start ticking . I cannot get it out of my head that I might only have around 3 or 4 years til the end. I am scared. Scared of what it will all do to my husband and kids and grandkids. Scared of being left alone anytime my husband goes out which is rare.
Thank you so much for your email.
I can feel the love you have for your grandmother. She is a very lucky to be loved like that. God bless you with the strength to see this through.
Feel free to talk to me anytime you need someone to talk to.
@@mycerebralamyloidangiopath4710 Thanks 🙏 that was very nice of you to reply and share that with me I’m so sorry about your sister , and your brother life’s unpredictable the only one who knows what’s next is god… being a grandchild to someone who has CAA I can tell you is hard to watch the one you love go through something like that , but one thing is she never will forget me and our special memories and that’s something I cherish … you should enjoy every moment , it is scary but also unhealthy for you to worry about the future , these videos will be helpful to look at in the future but most importantly live for now and make the most memories you can … I pray for you and your siblings and the strength for your husband and family 💜
@@natashaivelisse6127 Thank you so much
@@natashaivelisse6127 I will try hard to take your advice and enjoy life more. Take Care
Your channel came up in my recommendations today, thank you for sharing your story. We have a lot of autoimmune issues in our family so I understand the frustration you must have felt on your journey to a diagnosis. I just wanted to say that I hope for peace, patience and love to you and your family.
Thanks for the message. Nice to hear from you.
Take care.
Stay strong and positive doctors are not gods, thanks for being here
Thanks Denise.
You are quite an inspiration! And doing a great job communicating your journey with us!!
Hi Sheila,
I am new at dealing with comments so please bare with me if they don't seem to be showing on the video comment section at all. I am working through what I am doing wrong. LOL
I am happy to keep chatting here with you.
When the Doctor told me last year of my diagnosis, he was blunt and to the point. I never asked him at the stage if I would be put into the Hospital outpatients Clinic as I just assumed I would be especially for something that seemed so serious. When I was released from the hospital I was advised that my drivers licence would be suspended for 6 months and at the 6 month mark, I would be allowed to get my licence back. It took around 18 months to get it back due to a mix up between my two Doctors giving slightly different names to my diagnosis and the DMV thinking I had two medical problems but only one clearance for one medical problem, if that makes sence.
I rang the hospital sometime later and asked when my appointment would be and they said that my notes did not mention organizing an appointment for the clinic. They did not offer a reason.
My own GP felt the reason was because even though I was having "episodes", they were not lasting very long and more often than not when I had one, I didn't have another one that day. They didn't appear to be doing any harm at this stage. I felt that sounded probable. I don't go to the hospital when I have an "episode" because I was told to come back if I wanted to or when things "changed" and usually they have finished before the ambulance comes anyway. I have found many people do the same because when you get to emergency they usually admit you just in case. You stay in for a day or two and sometimes you don't even have one while you are in.
We tend to think that there will be a time when change happens and then of course any change that differs from the norm is when we will get an ambulance.
I hope that answeres your question.
regards
Jean
Also when you reply can you start a new comment on one of the other videos. I think I fixed the problem but by doing this I can see if I fixed it. Thanks Sheila
Thank you for sharing. I’m searching and you’ve helped me. They think I have this, we’ll see. Peace my friend.
I hope you find out soon that you are fine and do not have this horrible disease. Keep strong.
Your video just came up in my feed. I never heard of CAA. Thank you for sharing.
Thanks for the comment.
Hi Jean. This just popped up in my feed and I feel like this is me. I have been trying to get someone to listen to me for some time. Thank you for sharing your story, it has given me a new direction to follow ❤
Hi and thanks for the comment. You sometimes feel like you are a ship alone bobbing out in the ocean. If you feel like you want to chat more, you can email me. I take a while to answer but I will get back to you.
contact me at
mycaajourney@gmail.com
Hi, Just checking in on you and hoping you are well and have had some good luck with getting someone to listen to you.
Feel free to message again and let me know how you are coping.
regards
Jean
Thanks for sharing with us it helps us to understand others medical issues that we don't have a great understanding of and helps bring unity to anyone suffering from debilitating conditions. Please remember that drs cannot guess how much longer anyone with any condition has left to live and we aren't promised tomorrow. Live every day the best we can even if it means a restful day in bed. Look after yourself and take care.
Thank you Victoria
And yes, we *do* find your videos interesting.. thank you for posting them ❤❤❤
Thank you
New subscriber here, Love. Thank you for your honesty
Thank you. Take care
So sorry you've been through such a rough journey.
There is a book you might be interested in called 'The Inflammed Mind'..by Edward Bullmore...he explains how inflammation causes depression (physically)...I thought it might answer a few questions for you. (There are also youtube videos, of the same name).
I think you documenting your experiences, is a wonderful public service, and I feel you are a born story teller...not boring in any way!
Thank you so much. I will check out the youtube videos.
Prayers and hugs
Thank you. That means a lot
In a way,I can relate a lot to my 'situation' and, although it's a rather unorthodox way of coping with it, my supporting KNAP team (Kaey, Noa, Arne,Patrick) is one of a kind. I have accepted that the injuries, the situation has created, are irreversable, so everything I do is to HELP people that I can relate to. A PTSD changed into a CTSS or a Chronical Traumatic Stress Situation because of a group of people that gaslighted me in extremis. I got 12 years on plus to find out where this kind of hostility came from and was so anxious about everything that seemed out of place, that I ended in an isolation without heat or warm water, without electricity in the kitchen, so I only could use the gas pits to make or warm up my food. Even then, I got bills that were too high to believe, if I was paying this for using so little water and electricity, how could others survive the created inflation. In the Winter, I had no heat and in Summer, I had no refrigerator - I can survive cold temperatures, but it's difficult to live on a 'camping' when I have always leftovers because I'm single (the ex moved to Thailand when it became obvious what his part was in the situation and my 3 children have their own life - the eldest even has moved to Australia). Today, my brother in law came to fix the electricity (it was not a dangerous situation after all, just one of those things that can't be explaned in a normal way) and it didn't give me the relief that I need to get back into a normal state of mind, I have to admit. Those 12 years under high pressure, without a period of recovering, leaves me no choice, but hoping that things will 'cool down' again. Nothing is normal in my life and I found out that this was the bet reason to camouflage the gaslighting that otherwise would have been obvious. I don't see a doctor anymore, tired to explain that the average knowledge of how our bodies function is not enough to understand the exceptions. Was it the anxity or was it something else that made me a wreck? The few times that I did exactly what they demanded me to do, I ended into a worse situation than when I could solve it my way. This is not the end of the story, but no doubt that this is the end of the first phase - I have a healthy mind and a strong body, if it would have been the other way around, I would not have been able to write this down. Maybe I can't SAVE the world, but I can help the people who feel lost and misunderstood. WE are awakening on a collective level and some of us are early birds, so maybe your symptoms are temporary and connected with what is happening on a much higher level, I don't know but can give you an educated guess based on my own experiences.
Thanks so much for this. I hope you stay well
Hi Jane ~ It looks like my original post was deleted or I didn't send it correctly. My husband is currently being diagnosed with this. I'll share more later - but am curious about the dementia symptoms and coping with this. Thanks again!
Hi Sheila, in 2014, when my first symptoms presented, I had, within a 3 month period, had shoulder surgery, 10 days later a retina detachment surgery, (I was on heavy medication for these two surgeries), then a couple of months later the CAA symptoms presented. At first they thought I was having T.I.A's and as I noted in the video, I believed I was going to drop down dead. and because they couldn't diagnose what it was, I then went into a depression. This is when I really took notice of how my memory had changed. I had trouble remembering short term instructions. While this was all dawning on me, I realised, when someone would bring us the past, I couldn't remember a lot of things in the past. My Neurologist suggested that it was faux dementia caused by the depression and I accepted that. It seemed to make sense.
This was scarey for me as I had always had a good memory. Never forgot an appointment or birthday date. It was disturbing to me but I believed it was the depression and was comfortable believing that as it never really got worse it was just going to be my life. Apart from forgetting the usual, I found that when I went on holiday for example, even to our usual destination, I had trouble remembering which road I was on even though we might have been there just the day before and couldn't find my way back to the Hotel. If I made a statement and then someone challenged me on it, I would usually stand my ground if I knew I was correct and argue the point. I now had to learn to agree to disagree because I realised that it was not possible that I was incorrect in what I was remembering or how I was remembering it. I would usually start my conversation with " I may be remembering this wrong but". LOL.
Over the years between 2014 and now, I don't feel the memory has significantly changed. Yet.
I do think I drive my husband nuts though but we are on a journey together now and he too is learning how things will go.
I did read that when interacting with someone who has dementia that you never correct them.You just go with the flow with what they are saying. My husband is trying hard to do this but I think it doesn't really worry him to much yet as I am now 66 years old and he feels that part of this is my age. He too is becoming a little lax in his memory.
I think, although now in denial, that he is just living one day at a time. He has not researched CAA as I think he wants to bury his head a little right now
I hope this helps answer your question. Please keep following.
Good luck and please let us know how things are going for you.
Jean
That’s what my grandma has now is dementia it’s not easy at all I wont sugar coat and it’s tough keeping strong even though I put a front , I pray for your husband and wish you both the best
Sheila, I thought I would check back and see how you and your husband are doing.
@@mycerebralamyloidangiopath4710 Good morning Jane from Michigan! We have enjoyed a wonderful summer season of weather! I appreciate you checking in. Dennis is holding his own, he has been formally tested for Dementia and does have areas of significant cognitive impairments and other areas of strength. Problem solving and processing skills are the weakest areas. Dennis also has Pure Autonomic Failure - which restricts his life style even more. It causes his blood pressure to drop with any activity related to standing positions. He has spells of weakness and lightheadedness, and needs to go lay down (not sleeping) for up to a couple of hours at a time - and could be twice a day.
I hope you don't mind me asking this - but the biggest concern I have is supporting myself as I support Dennis. Our new and future normal is not terminal - but closing our world in. How do you and your husband communicate your needs and how does help you? ~ Maybe this will help me support Dennis more. Also, how do you feel about the affects your condition has on your husband's life and future? I know there are no easy answers. But maybe your insight would help me help myself and Dennis also.
NOW ~ how are you doing? Dennis has a big increased risk in stroke - does this apply to you also, are you on any medications? And how do you manage looking at the future or change in your everyday life? Are you getting counseling or have a group for support to provide you mental strength? What do you need from others that currently or if offered would help you cope? I continue to think about you and will pray for strength for you.
Thank you for reaching out, please feel free to use ME as a support person in your darker moments.
With love ~ Sheila
Thank you for sharing this information with us . Interesting wonder what caused this. Hope you are doing better.
It makes for interesting reading. If you get a free moment you might like to look it up in detail.
Thank you for taking a moment to message me.
If anyone ever experiences symptoms like this, try to get someone to film you with their cell phone. That way you can show it to the doctors.
Doctors have already witnessed me having continual episodes when I was in Hospital 2020.
I am planning to try and video next time I have one if I can for the channel
Very informative. We live in Qld. My brother was diagnosed with C.A.A. yesterday after 2 months in hosp/rehab having had 5 or 6 bleeds the first week & serious delirium for the subsequent 4 weeks. The initial bleed was in Oct 2023 & he was diagnosed Dec 2023.
Is there a Facebook page for C.A.A.? I'll have to check
Hello there. Sorry to hear about your brothers diagnosis. It's a bitter pill to swallow. If your brother would like to join a patient only facebook group try this one :
facebook.com/groups/374036557981756
It is not for family or care givers just for patients. it's a safe group to talk with. We often just need someone who really knows what we are going through to chat with.
For yourself, family and care givers try this one:
facebook.com/groups/443042499391499/
just copy these links and paste into the search bar on your laptop.
Or this one:
facebook.com/groups/775736939275525/
These groups have a fair bit of information but please do remember that none of us are Doctors and you need to do your own research.
Not all Doctors/Neurologists are familiar with C.A.A and you might find you have to speak up for your brother and get second opinions til you get proper answers.
Wishing him and your family Strength as it's going to be a bumpy road.
One more comment! Your introduction refers to pet care and housing . . . folks may be confused by this when they open your site. :)
Thanks for this info Sheila. I had to discard my pet channel as my attention span isn't long enough to run my previous channell.
Well, there is something I forgot to add... My attention span is shorter too now.
Jean
Hi Jane ~ would you mind sharing an update on your condition? I noticed you stated a life expectancy of 10 years and you're in year 7. Is an anticipated stroke the concern? How are you doing? Sorry this presents so bluntly with questions, it is with concern I am asking.
Hi Sheila, how are you doing. I was told life expectancy was around 10 years plus or minus 2 years. We all know we have to take that info with a grain of salt but your mind does wonder.
As I was once told "Who knows if you will die from CAA....you might get hit by a bus first"
I have my appointment to see my Original Neurologist on the 27th (if I remember correctly) so hope to get some more questions answered.
If there is one thing I am learning from so many people is that we are all getting different and conflicting advise from the Medical profession.
I will put out another video about that appointment after I have seen him.
How are you doing? Well I hope
My huband has recently been diagnosed with this. The neuroloist isn't concerned, says it's part of aging, my husband is 66. They did say he has no risk factors, so that helps. We are in the U.S. with excellent drs.
Very good to hear he has a great prognosis. Lucky to have a good neurologist
So you were checked for prolactinoma? I’m so sorry for all the stress you went through...
No I wasn't check for prolactinoma. Sorry if you misunderstood.
@@mycerebralamyloidangiopath4710 No, I didn’t misunderstand, I just ask because it can cause many neurological symptoms and are under diagnosed. Most people’s are only seem on autopsy because of how under diagnosed they are, and 25% of people have them (found only post mortem)
@@Ida-Adriana So Sorry. I misunderstood your question. I will definately ask about this when I get to have a serious conversation with a Neurologist. Thank you for bringing this to my attention.
Face droop immediately calls for brain scan
Hello I’m just wondering if they ever prescribed medication
No Cure for CAA. No medication for it. I was diagnosed in 2020 some medication was prescribed to calm the seizures. It did not work and so I decided to stop taking it as it didn't work and I didn't want to put chemicals into my body if I didn't have to. My seizures are mild at the moment and I will probably have to take meds in the future.
❤❤❤❤
I have no idea what you are talking about. I watched the whole video. Still don’t know what the cc stands for.
It’s CAA - if you Google it you’ll get the info you need.
C.A.A stands for Cerebral Amyloid Angiopathy.
Cerebral amyloid angiopathy (CAA) is a condition in which proteins called amyloid build up on the walls of the arteries in the brain. CAA causes bleeding into the brain (hemorrhagic stroke) and dementia.
Would be to simple to say …don’t worry….I would ,but how many times we heard dr said to cancer patient…you have few months to live…and they live till today and they are ok.I just want to say,do not believe everything what you hear in dr.office.
And I wouldn’t do any tests that involve the die or be invasive.
I would go on KETO diet for 3 weeks,but start slowly.eliminate slowly processed food,sugar,grains pasta,bread drinks with sugar etc,Than be 3 weeks on keto ,that means no carbohydrates of any kind,except the one in vegetables,( about 20-30 gr/day,but only for 3 weeks.Than change to low carbohydrates diet,meaning you can eat more carbohydrates ,but not to much ,maybe 50gr/day.And big NO to weat,grains ,rice sugar ,starch( no potatoes) You can eat meat,cheese,vegetables,eggs ,and fat is good.With fat you won’t feel hungry.,but you will loose wait .Try to skip breakfast,so eat lunch not drastically,but change time maybe ( if you eat breakfast at 9:00 change for 10:00 for few days,than change for 11:00.First 3 weeks you should feel better,won’t be any depression,and your memory will improve.Would be good if you eat organic food.And use good fat,like butter,35% cream,olive oil,avocado oil( no canola,or vegetable oil or sunflower oil)You will feel better,try cost not much ,and remember ,food can be your medicine or poison.When you skip totally your breakfast,keep that way.Have tea ,or coffee with MCT oil or coconut oil and 35% cream.you won’t be hungry .And good fat is necessary for our brain .Good luck,you such a nice person.
You can find lots of video on KETO ,or low carb diet .
I don't believe anyone at the moment. Thank you so much for your comment. Take care and all the bet
Sounds almost auto-immune-ish..
Did you take the jab?
I was diagnosed long before I had the jab. Symptoms started in 2014, diagnosed early 2020
Liver doc for scans to watch bile flow Not gastro doc chem and tox tests kidney machine to clean blood liver kidneys
Thank you. Take care
Do you exercise often? I would imagine doing a good amount of exercise will help our brains.
I have a few other medical problems and do moderate excercise when I can.
I do online puzzles. I sit a lot but usually not watching t.v. I learned to crochet recently. I am raising a 7month old boxer puppy, trying to continue researching my family tree while I can so a lot of what I do is a "mental" stimulation.
I believe our brains get damaged a little each time we have a bleed so any excercise is good.
Stay str
I will try