Revealing diagnosis

I guess it depends &you & your family. I told my people immediatelIy. My sister didn't believe it & neither did her husband. They were dismissive of my information. My husband was with me when the physician told me I had MCI. He has been very sportive.

didi no real need to put off telling people you have ad. it is now part of your life as it is mine. the sooner you embrace your new situation the better. latter when your in public and a smpile task is taking longer you can say give me a minute i have alzheimers and you won't think a thing about it. you will find that your number of friends gets smaller but the real ones will understand. be kind to yourself, learn as much as you can,join with others that are in the same boat.dive into daily life get out note paper. i have alzheimers believe me i get it………

In the information I received with the results from my Lumbar Puncture, it is first noted that the laboratory used the "ADmark Phospho-tau Total-tau / AB42 test". A simple google search of this term indicates that several testing companies utilize this test (Quest Diagnostics, Athena Diagnostics, Mayo Clinic Laboratories, Allina Health Laboratory, ACL Laboratories, etc).

The test results provide four parameters: Amyloid-Beta 42 (AB42), Total-Tau (T-tau), Phosphorylated-Tau (P-tau, this is apparently a very bad kind of tau), and ATI (Amyloid-Total Tau Index)

Per the lab report I received, If P-Tau is less than 54 pg/mL and ATI > 1.2, then the results are not consistent with Alzheimer's (i.e. something else would be causing any memory problems, not Alzheimer's).

You are borderline with Alzheimer's if P-Tau is from 54-68 pg/mL and/or ATI 0.8 - 1.2.

The test confirms Alzheimer's if P-Tau > 68 pg/Ml and ATI < 0.8

My VA appointment was canceled do to the VA had no one to take me for my first appointment let's what happens next week/ I will keep my fingers crossed.

Hi DIDI, I have just rejoined this group and I was reading several responses. Please, DIDI, do not listen to anyone making medical suggestions!! Your doctor will tell you when you see him your diagnosis!!

I am a former RN BSN. One must be careful on these site when members overstep even though their intentions are good.

Take care

Please tell him.

I told all my family as soon as I decided what I was going to do as far as infusions etc and My husband and myself became educated on Alzheimers.

It is best to let the family go through th process with you. (of course my opinion)

I just started reading "A Tatoo on My Brain" by Daniel Gibbs. He was a neurologist, diagnosed with AD. Perhaps some of his words may be of comfort to you, I found them helpful:

Gibbs writes that "AD at any stage is a tough disease, in part because, at any age or stage, just knowing that you're living with it is enough to upend assumptions you may have had about the future. It calls for conversations that may be tough, too, whether that conversation is with your doctor, family, friends, or others. Among my patients and others I've known who've received a difficult diagnosis, some choose to bare their innermost feelings, others don't. Everyone has their own coping style, I respect them all. … It is tempting to give up and say, 'There is nothing I can do, there is no hope, why bother?' I fight against my apathy all the time, and I know the fight is worth it. I feel so much better when I can take action and feel that I am in charge, not AD. But for those of us with the disease, even its earliest stages, it's daunting to get your head around the idea of taking charge against a disease that is slowly destroying your brain."

Hang in there. Your postings indicate you are an intelligent and compassionate person. I know firsthand that life with AD is tough, but I believe that you can get through this.

I sympathize with your dilemma. For me, the difficult period was after a preliminary AD diagnosis from cognitive testing in Feb 2024. I had my Lumbar puncture in March 2024, then had to wait for a confirmation from the results from the lumbar puncture in late April 2024. This wasn't the most pleasant period of my life :).

It is dangerous to trust info that people post on the web, but with that warning, I noticed a paper available on the National Institute of Health website titled "Is tau in the absence of amyloid on the Alzheimer's continuum? A study of discordant PET positivity". The paper was published in 2019, documenting a study performed among 523 people from the Alzheimer's Disease Neuroimaging Initative who received PET scans. Of these 523 participants, a subset of 301 without dementia also had a previous PET scan from 12 months previous. From the PET scans, the researchers could determine the amount of amyloid beta and tau in the participants brains. They organized the results into four groups: Amyloid negative / Tau negative, Amyloid Positive / Tau negative, Amyloid Negative / Tau Positive, and Amyloid Positive / Tau Positive.

The largest group was Tau positivity in the absence of amyloid positivity, the smallest group was amyloid positive tau negative.

The amyloid negative / tau positive group showed small-to-moderate relative decreases in cognition, while the amyloid positive / tau positive group had the worst cognitive performance.

Here is a link to the paper

I've been reading the book "A Tatoo on my Brain" by Daniel Gibbs. The subtitle is "A Neurologist's Personal Battle against Alzheimer's Disease". You might find the book helpful. I will quote a short section from the book:
"Alzheimer's at any stage is a tough disease, in part because, at any age or stage, just knowing that you're living with it is enough to upend assumptions you may have made about the future. It calls for conversations that may be tough, too, whether that conversation is with your doctor, family, friends, or others. Among my patients and others I've known who've receive a difficult diagnosis, some choose to bare their innermost feelings, others don't. Everyone has their own coping style. I respect them all. As for me, as odd as it might seem, I'm fascinated by this disease that, for my entire career as a scientist and a neurologist, I could only observe from the outside. Now I've got a front-row seat - or, rather, I'm in the ring with the tiger. Of course I'm disappointed that I have Alzheimer's. But I'm stuck with it. And the habits of a lifetime - to approach a question with a certain kind of detachment and to study, experiment, hypothesize and discover - turn out to be my coping mechanisms. I'm grateful for that now. I hope that this book, informed by that perspective on the science, medicine and everyday life experience of early-stage Alzheimer's, will be of help to others."