Alzheimer's: Wanting to connect with others

Hi @robbykline, Welcome to Connect. Thanks for starting this discussion about Alzheimer's. There are several places where people are talking about Alzheimer's. For those caring for someone living with Alzheimer's, you'll find many discussions in the Caregivers: Dementia group: https://connect.mayoclinic.org/group/caregivers-dementia/

- Caring for someone with dementia / Alzheimer's https://connect.mayoclinic.org/discussion/caregiving-for-dementia-sufferers/
- Meet fellow Caregivers - Introduce yourself https://connect.mayoclinic.org/discussion/meet-fellow-caregivers-introduce-yourself/

For people living with dementia, see this discussion:
- Frontal Temporal Dementia https://connect.mayoclinic.org/discussion/frontal-temporal-dementia/

You may also be interested in the newsfeed articles in the Mild Cognitive Impairment page: https://connect.mayoclinic.org/page/living-with-mild-cognitive-impairment-mci/ There's lots of great advice for both caregivers and people living with early dementia.

Robby, are you looking to connect with others who are living with Alzheimers or people caring for someone?

Thank you for the welcome and responding with the links. I will check them out.
Be well

I just read some interesting research type news on Alzheimer's treatment that I thought I would share here.

Historic breakthrough: WVU Rockefeller Neuroscience team first to use ultrasound to treat Alzheimer's - Oct 28, 2018
-- https://www.wvnews.com/news/wvnews/historic-breakthrough-wvu-rockefeller-neuroscience-team-first-to-use-ultrasound/article_cfe6fefc-eee9-5add-b853-23642a0a91a7.html

The latest from Mayo Clinic's Research Magazine on Alzheimer's...

New directions in the study of Alzheimer’s disease
-- https://discoverysedge.mayo.edu/2018/10/30/new-directions-in-the-study-of-alzheimers-disease/

Was just told what the diagnosis was and I would like to know all I can know about this disease and me and I would like to have Mayo take a look see!! I Was told in the last week or so and I want all the information that is out there. Feasible?? Your advice will be so important to my wife and I!!

Absolutely feasible, @bandit102847 – welcome! I'd like to offer a list of additional Connect discussions that you may wish to explore and join:
– Alzheimer's and Incontinence https://connect.mayoclinic.org/discussion/alzheimers-and-incontinence/
– Alzheimer's and DNR https://connect.mayoclinic.org/discussion/alzheimers-and-dnr/
– Activities when abilities are limited? https://connect.mayoclinic.org/discussion/activities/
– Memory care https://connect.mayoclinic.org/discussion/memory-care-1/

Today has been an ok day. I never know when I get up what's coming as in I will handle what the day brings or it goes the other way. Mary Kay and I had good discussions today and my frame of mind was ok. I just never know which way the day will go. It can be a rough day if something touches a nerve. Not knowing, not understanding what, when, and where, will take me over the cliff until I get a handle on things. Like a lot of folks I just never expected that I would have this disease. I had three heart attacks and multiple stents. I had a handle on that as I knew when there was trouble and what to do about it. Now, I do not know what to expect, or, when to expect it. I feel like I am crawling on a tree limb and someone is cutting the tree down. I was given a medication while at the neurologist' in Annapolis. It had a side effect that was unexpected and I was by myself driving several miles in a lot of traffic. I simply feel like there is a lot more I need to know hence my considering Mayo. I am back and forth on that due to our money being tight and not sure how it will go with the insurance. We have insurance but never encountered a situation like this. I am taking a lot of time with this so I will stop for now. Oh, did I tell you I am pretty scared?? That is hard for me to handle all of a sudden. Thanks for listening!!…….Steve Swinford

Hi, @bandit102847 - wondering how you are doing these days? How are things going with your health insurance?

In September 2024, I was given a PET CT scan which identified that I have amyloid deposits which my provider say is a diagnosis of early-stage Alzheimer's disease.

My provider prescribed a drug named Donanemab (marketed as Kisunla) which is said to target amyloid plaques in the brain aiming to slow cognitive and functional decline.

However, a side effect of Donanemab is possible brain swelling or bleeding (ARIA) and the risk of swelling is higher in individuals carrying the APOEG gene. I'm currently trying to get a blood draw that will be used to see if I have the APOEG gene but getting the blood test is turning out to be a challenge (I've been to 3 different labs). The drug is new which maybe is why the health system here in Seattle is struggling to perform the blood test.

Wondering if others who are newly diagnosed with early-stage Alzheimer's are experiencing challenges with some of the newer tests and treatments.

Let's remember what alz.org says:
older age alone is not sufficient to cause Alzheimer’s dementia. (citation 79) p14
https://www.alz.org/media/documents/alzheimers-facts-and-figures.pdf
Healthy Food, Fit body and Socially Rewarding Cognitively Stimulating activities can prevent dementia Symptoms EVEN when on death one's brain autopsy might show all the disease markers!
http://ccna-ccnv.ca/news/can-resistance-to-alzheimers-disease-be-built/
Good luck!