Cerebral amyloid angiopathy

I share your caution about stem cells and at the time I did my best to find a cure or at least something to extend my wife's life span. The reason I chose stem cells is that a Biotech company from Korea went thru clinical studies in Japan and has been given permission to do stem cell treatments to cure Alzheimer's by the Japanese version of the FDA in Japan. Their plan of attack is to inject the body with 200 million stem cells every two weeks for 10 treatments. To do this you need to culture and grow your own cells and then reinfect them into your body. The FDA will not allow you to do this, because they say that if the stem cells are altered in any way then they are a drug and need to be approved by them. Thats why we have to go to Mexico to have the injections. The biotech company is one of a few companies who can culture and grow cells in the USA. Also this was the last ditch effort on our part because at the time we did not know of the program at the Mayo and had nothing else to loose. We felt that if the culprit is amyloid plaque, the stem cells won't care where the plaque is and could just go after the plaque in her arteries. We are closing in on the window that the stem cells start to take effect and if she shows improvement then I will post her good news.

You are right that many stem cell companies are scam's but that is more likely because of the restraints by the FDA. We found a way to get around it. I am sure that there is much stem cells can cure and we hope CAA is one of them.

I am glad to hear of your progress and I printed this for our doctor. The question I am asking is what help can Mayo offer? Everyone I contact said that know very little about CAA and that there is nothing they can do. I am hoping that someone will give me more details about the treatment's Mayo has to offer. Also which doctor they use and we will make an effort to visit him/her in the future.

This is a great forum and I look forward to more replies.

Sincerely

Terry

My mom was diagnosed over 10 years ago and although parts of her cognitive thinking has worsened (she's 82), she was in worse shape 10 years ago than she is now. Mayo (MN) also said there is not much that can be done, but I'm sure they'd be impressed she is doing so well. Good sleep makes a big difference. Best of luck for your wife.

The most important thin is if you have CAA then don't take blood thinners. We are all different and have bleeds in different locations that cause different problems. So first get a test to confirm what you have and read all the previous post for advice. Good luck

Just found this site. My wife has been diagnosed with CAA at age 63. It’s great to read similar symptoms, especially regarding confusion.

Hello, @bortner, and welcome to Mayo Clinic Connect. Glad you found this site and that you are finding some similarities in what you are reading in this discussion, "Cerebral amyloid angiopathy," with what you've seen in your wife.

I'd like you to meet @surf362 @sistertwo @thomaslmason @nonipoppy and others in this discussion. I'd also like to introduce you to @johnbishop, as well as @IndianaScott, who is the volunteer mentor for the Connect Caregivers group, https://connect.mayoclinic.org/group/caregivers/, and may have some knowledge about seeing confusion in a loved one.

Is this a recent diagnosis, @bortner? What types of confusion is your wife experiencing?

Hi @bortner, I would like to add my welcome to Connect along with @lisalucier and other members. I was not familiar with CAA so did some research and found an interesting article on the condition. I'm not sure it's helpful but it may provide more information on CAA for you. I hope you can find some answers that are helpful.

The increasing impact of cerebral amyloid angiopathy: essential new insights for clinical practice
-- https://jnnp.bmj.com/content/88/11/982

Diagnosed 1/29/19. She had been having trouble staying focused on tasks since mid December. After my surgery for a fractured knee cap I had asked her to tie my shoelaces. She tied one and left to do something else. It’s funny now, but I thought, what the heck. Blew through a stop sign. Trying to separate coffee filters,when there’s only one. Lots of little things that only a husband would notice. We went to the ER after she had tingling in her arms, weakness in her legs and she tried talking but nothing came out. CT scan and MRI showed a 3 cm x 5 cm area of bleeding in right frontal lobe. Going back in 2 weeks for follow up MRI and neurologist appointment

Hi, @bortner - that is a very recent diagnosis. Sounds like you have been very sensitive to what has been going on with your wife, noting these little things that indicate confusion. The tingling arms, leg weakness and trouble talking would definitely be worrisome. Good that you were there to take her to the ER for assessment.

I'd also like to introduce you to @jakedduck1 and @jenniferhunter. @gbiffart also has some similarities to your story about your wife's condition, so hoping he might return to talk with you and offer support.

How are you and your wife feeling about this diagnosis? How is she doing this last week or so?

Hi everyone,

I'd like to invite you to join us today, Wednesday, May 1 at 12pm CT for a video Q&A. Drs. William (David) Freeman and Rabih Tawk will be discussing all aspects of stroke, and will answer questions during the live broadcast.
Simply click https://connect.mayoclinic.org/webinar/video-qa-about-stroke-2/ for details.
Drs. Freeman and Tawk will answer questions live. Post your questions before and during the broadcast.

Return to this page, https://connect.mayoclinic.org/webinar/video-qa-about-stroke-2/ to take part in the video Q&A live on May 1 at noon CT. It will also be archived on this page.

Hi everyone. My MIL (who lives with us) has a recent CAA diagnosis. We were giving some reading material by the doctor, but very little about the progression of the disease, other than the neuro's statement of "permanent and progressive." She was in rehab for a while but they sent her home with PT / OT but no follow-up for any of the brain / cognitive issues. (Not even a follow-up with neurology, which seems odd, but since they told us there is no treatment, maybe there is no need for repeated doctor visits?)

We are lobbying for speech / cognitive therapy services but at this point, it has been 7 weeks and we have yet to make any progress, so I am no longer optimistic that we're going to get help from that arena.

She has always been a difficult person but the dementia is definitely making it worse. She seems to alternate between being clear enough to argue with me about the facts of an incident that happened over a year ago, but then other times is so unclear that she is yelling at my husband for "forgetting" the pot roast at the store - which she never bought in the first place.

He seems to think that we should just play the waiting game and react when the next crisis happens but I am wondering if there is information available that could help us understand the progression of the disease, so we can have some sort of plan. I have done a lot of Googling but Dr. Google is unreliable and what I have gained mostly seems to be that there's no predictable pattern and every patient is different. (Which makes it a bit of a challenge trying to make a plan).

Any thoughts or guidance would be appreciated. Thanks.