92 years young no longer able to live independently

elf14

I have recently moved to my daughter’s home in Alaska as my memory has (lack of) caused me many problems.
Doctors here indicate there is no conclusive testing for Alzheimer’s/brain disease and I have been given no clue as to my brain health or diagnosis. Parkinson’s was suggested but I do not have 2 of the 3 required symptoms. Blood tests show all my nutrient levels are within the healthy range. Neurologist has failed to follow up with me.
I just want to know how to move forward in the best way for my well being and what is wrong with me. I know I am old but I know several people who are older and still live independently.

Dorse

I am confused as to why they can't / won't do any Pet Scan, MRI, or routine neurology testing to shed some light on what's happening with you.

LBC83

https://alzconnected.org/discussion/75153/92-years-young-no-longer-able-to-live-independently

Sorry to hear about your situation. I agree with the posting from Dorse.

I was diagnosed with Alzheimer's Disease (AD) in April 2024. It was not a difficult process. Broadly speaking, there are two requirements for an AD diagnosis: 1) evidence of short-term memory loss as determined by cognitive testing; 2) evidence of the biology of AD, specifically high amyloid plaque levels in your brain. I had a quick Montreal Cognitive Assessment (MoCA) which took about 10 minutes to administer in my first visit with a Nurse Practitioner as part of my AD diagnosis. This lead to more detailed cognitive testing which showed I had issues in some cognitive areas associated with AD. My Nurse Practitioner then ordered lab work to rule out other problems. The last step for confirmation of my AD diagnosis was the biological evidence of AD. Back in 2024 there were only two choices: an amyloid PET scan or a lumbar puncture. I chose the lumbar puncture, and the results confirmed high levels of amyloid plaque in my cerebral spinal fluid.

Now-a-days, there are FDA-approved blood tests that correlate very well with amyloid PET scans and a lumbar puncture. So today, people with cognitive issues can easily get an FDA-approved blood test which can either conclusively confirm the presence of amyloid plaque in your brain, or conclusively determine that someone does not have high the levels of amyloid plaque associated with AD, or determine that you are somewhere in the band in between. Those in the last category would then need either a lumbar puncture or an amyloid PET scan to confirm the presence of amyloid plaque.

Now there are anti-amyloid medications which have been approved by the FDA for treating AD. The clinical trials for these drugs included older adults. For example, the trial with Leqembi included people who were 90.

eaglemom

First of all I'm glad that you found us. Secondly I'm sorry that you had a need to find us. We are here to help you, if we can along this journey.

When you said the neurologist has failed to follow up with you - this now means you need to be the squeaky wheel. Call the office and ask for a nurse to return your call. Use the patient portal if available. Make another appointment if need be.

Having said that, I'm wondering if the neurologist isn't thinking your PCP will handle your diagnosis, etc? It does work that way sometimes. If that's the case it needs to be verbalized to you. Do you have a PCP? Would you allow them to handle you case? That might be easier than dealing with a neurologist office.

I'm sorry I've not answered your questions, but rather given you something to do. There is medication to take, and numerous other things offered. But first it needs to be determined what exactly is going on. I'm so sorry this is happening to you. Its scary and frustrating. Hang in there, make the calls and ask the questions.

eagle