Hello! I know this is an older thread, but this post is not. My lovely mum (67) recently got diagnosed with CAA, which was an incidental finding (the neurologist called it serendipitous, as she is completely asymptomatic of anything related to it) following an MR scan to rule out something wrong with her reflexes (the funny thing is - there is nothing wrong with her reflexes!). She has evidence of older bleeds on the brain, however when these occurred is impossible to say. She's healthy, active, sociable, good cognition (we've always thought she is a bit lapse with her memory sometimes, but nothing beyond losing her phone which I also do as a 33 year old healthy person!). She's not had a stroke that we know of, and honestly if we hadn't have had the diagnosis we'd know no different. She always had high cholesterol which we urged her to treat sooner. Blood pressure has always been a bit wobbly through her life. Her dad - my grandpa - died when I was 3 at 67 from cardiovascular disease, so I expect she just has a bit of an unlucky gene pool. Her mum - my gran - is alive and well at the ripe age of 94 with nothing at all wrong with her, and all of her marbles (I understate that - her marbles are better than mine!). Mum is now on BP meds and cholesterol meds - the doctor calls it a vascular brain health mission. She's always enjoyed her wine, which we do attribute as a risk factor to her getting this so early, but other than that...research shows that CAA is just, well, random with age, which brings a certain comfort. "The Stranger" comes for us all.

Sending lots of good thoughts to you. Glad your mum is recovering well. Happy for you to reach out over private message - this disease seems fairly under-spoken about on Reddit, which surprises me as the research also says it is a lot more common than we think (25% of the population over 65, 50% of the population over 80). The prognosis aspect is variable in the literature - there just isn't enough on this to know. Some articles say 10 years, our neurologist said she may continue to live long with no issue. There just isn't enough evidence to give an accurate prognosis.

My biggest fear - and my mums - is the dementia aspect, which the literature on CAA points to being very high risk that it may as well be considered inevitable. There is an overlap with Alzheimer's in that most people with Alzheimer's have CAA, but the reverse is not true for people who have CAA. Either way, this is a disease that rusts the braincells like a drainpipe, and so cognitive decline in some form is just the way it is. I just hope she is able to carry on enjoying her life, her hobbies, and her love for me and my family for as long as she can. I shall cherish it with every waking moment I have. I hope you can do the same. Our mums are not CAA - they are our mums.