Working Through This New Diagnosis

I am so sorry to hear of your diagnosis.

I do not have it, thankfully. However, my 83 year old parent does. I have disclosed the diagnosis to 2 of her siblings, 1 friend, and 2 of my friends. She has told no one and she would feel betrayed knowing that I have told anyone.

I've watched her decline over the past 3-4 years. As an RN, I diagnosed her myself and have been begging our pcp to test her. He kept "forgetting." He finally tested her in December 2024 and gave her an official diagnosis.

For what it is worth, I would suggest that you disclose your own health issue. Your children are going to need emotional support, at the very least. If no one knows, no one will be able to support them.

The same is true for you. Friends can not support you unless you disclose your struggles with them. There is no shame in having dementia. Start the conversation!

I am a retired lawyer and judge. I had a 3 hour cognitive test in 2023 which found MCI. I was told to return if I thought my memory was getting worse. It did and I returned in April '25 for a second test. It showed my MCI had progressed. I could tell I was getting worse so in January I asked my internist for a referral to a neurologist. He ordered an MRI to rule out other possible causes for my memory loss, such as inflammation from my longstanding autoimmune disease or a brain tumor (my son died at age 6 of a glioblastoma). When the MRI was negative I at first jumped for joy but then realized it only ruled out other causes of my memory loss. I then had a ptau217 blood test. It was analyzed at the Mayo Clinic. Under their scales, anything above .325 indicated the presence of amyloid tau in the brain—at 96% chance of it. My result was a .5. Grim. I will have a PET scan on Friday. My internist and neurologist have said the blood test result = a diagnosis of Alzheimers, and say the PET scan may reveal the stage I'm at and whether I qualify for kinsela or leqembi. My husband (a doc), daughter (who's a doc) and son (who's a nurse) know and they are incredibly supportive, but I feel isolated and want to share the info. I've reached out to two longstanding friends and the response was disappointing. They clearly didn't know what to say. One said "tough diagnosis" and the other was a cheerleader saying "you can't be bad" "it'll be ok". So I am hesitant to tell anyone else. That makes me feel like I'm in a pressure cooker. I was relieved to find this forum.

I am so, so sorry that you have this god-awful disease. You are so young (I am 74.). And when we made our living studying applying the law, the gradual loss of the ability to do that is so sad. I used to preside over some of the most difficult cases, now I had to disqualify myself when chosen for jury duty last fall. I hope we can vent to each other and help each other. Know I'll be thinking of you.

I am sorry you are here with this diagnosis. My husband had MCI without a neurodegenerative disease causing the MCI. We were able to reverse it in one year using Brain HQ online cognition games used by the Mayo Clinic Habit Program and following Dr. Dean Ornish’s Lifestyle Program. If a Mayo Clinic near you offers The Habit Program, I highly recommend it. It was life changing for us.
When my husband was diagnosed, we told a select few on a need to know basis. All of these family members and friends were extremely supportive and helpful. They all had relatives with this disease and understand what we were going through.
People can only give you what they are capable of giving. You quickly find this out and often are disappointed when the people you thought you could depend on are not capable. When I stopped expecting more of these people than they were capable of giving, my life became much easier.
The Bright Focus website has excellent information on drug therapies.
The people on this site are extremely knowledgeable and supportive. Wishing you all the best.

I started Leqembi last month and have my first mid-treatment MRI this week. I have not had any side effects, maybe a little more tired, though my stamina seems to have declined overall. As for telling people, I first told my adult children and my 5 siblings. Next, to my closest friends. I felt that I needed to be transparent, and let those I know so if I said something odd or didn’t remember something, that they would understand. I find my friends incredibly supportive and helpful.