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Cerebral amyloid angiopathy

Stroke & Cerebrovascular Diseases | Last Active: May 31, 2023 | Replies (109)

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@nicolehf

Hi I’m 40. My Father is 71 and was just recently diagnosed. His mother & both of his sisters had early onset Alzheimer’s. With that being said, my father who has suffered from migraines all of his adult life Had a migraine the beginning of June and laid down and when my stepmom checked on him he was disoriented they took him to the hospital and then transferred him to another hospital and they found out he had a brain bleed and this led to a stroke a And he has a shunt and he’s had a drain placed in. between several hospital stays and rehab facilities and back in the hospital this week... they can’t control his HR for very long... and he has Pneumonia again. we just found out that this is what the doctor is saying in the specialist and the neurologist that he has. During this time over the last month my dad has had three more brain bleeds that they know of countless scans and tests he also has a heart condition I believe a fib because he has a very high heart rate that’s some thing that has happened in the last 10 years that he’s taking medication for. This has been a awful situation for my stepmom and just figuring overwhelming for me. I’ve had severe migraines over the last 20 years and basically nothing works. This is all very new to me I know nothing about this I just heard about this disease literally yesterday with my stepmom called me to tell me. I watched his mother which was my grandmother live with us as a small child with Alzheimer’s and both of his sisters which are my aunts and they all had Alzheimer’s early onset. So I’ve kind of been pretty well educated as far as Alzheimer’s but not this and I’m wondering about the hereditary factor for myself and my brother and obviously each of us have children as well. I wanna be proactive and I want to be understanding. My dad has deterioratedAnd he can barely communicate it’s been awful and my heart breaks for him he’s so disoriented and confused when he does speak he makes no sense this is by far the hardest thing I’ve ever gone through and I just want to help and I want to support them and I want to have a better understanding. Does anyone have any information on a possible outcome or testing? I’ve been driving several days a week 2 1/2 hours away to stay with my stepmom when I can and visit my dad but due to Covid there’s been so many restrictions. This is just really overwhelming for us and any help or information anyone may have I would really greatly appreciate it. The doctor has said that my dad will not improve if he was going to improve it would’ve happened by now. I am a Christian and I’m a firm believer in my faith and I just pray for the best for my dad but watching him like this is so hard. Again I’d appreciate any information or suggestions anyone may have thank you.

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Replies to "Hi I’m 40. My Father is 71 and was just recently diagnosed. His mother & both..."

Hi @nicolehf and welcome to Mayo Clinic Connect.

Even reading your message, I can feel how your mind is racing with the news of your father's diagnosis of cerebral amyloid angiopathy. I'm confident fellow members like @jamestitus @sistertwo @bortner @coloradogirl and others will support you and share their experiences with CAA.

Nicole, your concern is three-fold:
1. What is going to happen to my dad?
2. How do I support my step-mom?
3. What does this mean for me and my future?

Let me start by addressing the third part. You might be interested in reading this:
- Hereditary cerebral amyloid angiopathy https://ghr.nlm.nih.gov/condition/hereditary-cerebral-amyloid-angiopathy

Have you considered genetic testing?