I am living with a mild form of Alzheimers

bryan805 · September 18

The mild form of Alzheimers I've been diagnosed with is not very noticable. I am able to answer questions which are readily posed to me

LBC83 · September 18

Welcome to the "club". I was diagnoised with Mild Cognitive Impairment (MCI) in the spring of 2024, and I started on Leqembi in June 2024. I recently had my 33rd infusion. I had a repeat quick cognitive test about a year after starting on Leqembi (Montreal Cognive Assessment, or MoCA), and I scored the same. I take that as a good sign.

LIke you, I can readily answer general questions posed to me. To the casual observer, it does not appear that I have Alzheimer's. Of course, if they told me a short story about a recent event that occurred in their lives, then we discussed other topics, and later they asked me pointed questions about details from their short story, then I wouldn't be able to respond very well. But this loss of short-term memory isn't apparent to the casual observer.

So, life goes on. I'm hopeful that Leqembi will help me maintain enough cognition over the next few years until more powerful drugs become available. An example of a more powerful drug would be the clinical trial pairing Leqembi with Etalanetug (an anti-tau drug, whereas Leqembi is an anti-amyloid drug).

My favorite story about Leqembi involves Ralph Carmona. He was a participant in an early clinical trial with Leqembi about 10 years ago. He ran in the Boston Marathon in 2025, with a time of 4H14M42S, after visiting 5 medical tents along the way due to cramps. Clearly, not everybody on Leqembi will compete in the Boston Marathon. But still, who would have thought that after 10 years on Leqembi, somebody diagnoised with AD would be competing in the Boston Marathon!

ChristyW · September 23

Hi Bryan. I was recently diagnosed myself (please see my new post.)

I received the “official” AD diagnosis last Thursday, and as you can fully understand, we are devastated. My cognition difficulties are not readily apparent to others, either.

I’m hoping this group will help with support and provide answers, but I’m trying to locate an in-person, early stage support in my area.

I wish you the best and a long MCI stage!

Dorse · September 23

Dorse · September 23

I was diagnosed on July 15, 2025 with AD. I had the MRI, Pet scan, and neurologist testing, etc., etc. before diagnosis. I agree with you that a group sharing this early diagnosis experience would be very nice. The diagnosis is one that we never wanted to hear. I can say that it's now 3 months later, and I seem to be doing the same as then when I was diagnosed. I went through alot trying to educate myself and accept this diagnosis. I'm now wondering if the diagnosis was correct. The neurologist did show my brain scan to my daughter, my significant other, and myself. He explained all about the amyloid plaque, etc., but now I'm back to hoping AD is often misdiagnosed. Take care, and thanks for sharing.

lfaust58 · September 23

Hello, Dorse—

Thus far my AD journey is much the same as yours. Diagnosed in late Jan 2025. Outward, I show little or no signs of AD. PET scans were positive for amiloyd plaques. Lequembi & Doneprezil are pretty well keeping me at the MCI stage, and my periodic MRIs show no indications for ARIA. Sure, I'm slower than I used to be, and I search for words at times. I struggle with motivation & planning. Like you, I hope that AD was just misdiagnosed, but, next week, I'm moving from Florida to Ohio so my daughter & ex-wife can be caretakers. The month-long moving process, and navigating Ubers & airports by myself are all challenges. I now have a deeper understanding of why elders ask so many questions. If you'd like, please don't hesitate to reach out to me.

Dorse · September 23

Interesting.. May I ask how old you are? I just turned 80 in Aug. I have chosen to not get the infusions at this time. I am hoping that the memory problems, etc. as well as the amyloid plaque on the Pet Scan is just age related, not AD. I guess it's a wait and see situation for many of us diagnosed with AD. I just know the diagnosis caused me alot of stress and concern. Good luck to you, and hopefully we will both remain about the same as when diagnosed. Stay in touch if you like.

lfaust58 · September 23

Dorse--

I'm 66

Dorse · September 24

Thank you, and I wish you the best on you adventure of your move from Florida to Ohio.

eaglemom · September 24

This is wonderful that you all have this community to reach out to. Let me tell you one thing that will always be 100% true: if you've met one person with ALZ, you've met one person with ALZ. Meaning each and every one of us might get the same diagnosis, ALZ. But how our bodies react and we react will certainly be totally different than everyone else.

Being engaged certainly is very important. So keep up with the message board, see if you can find a support group, keep doing life.

eagle

Dorse · September 24

I agree with you, and thank you for sharing..

brenda4712 · September 25

Hi I just reviewed my PET scan with my doctor and she has confirmed I have early onset AD. I am a single parent and have been feeling anxious and fearful. I am 53 yrs old. Next steps is to do a blood test and then start the drug therapy. As many of you have mentioned I don’t have many symptoms. I forget things occasionally but then remember it in the next few minutes. The only reason I even had an MRI was due to a tremor in my hand. I am thankful that I did go to the doctor because it may have been too late for me if I let it go untreated. I am holding on to faith and prayers to make it through this. Thank you all for sharing.

Dorse · September 26

I am 80 yrs. old, diagnosed with Alzheimer's 3 months ago. I am seeing very little progression (?) at this time. I am still taking care of all my business, budget, etc., etc. This diagnosis was very concerning & upsetting to hear. I am doing fine. Keep the faith, and try to stay away from focusing to much on this diagnosis, research, etc.

Dorse · September 26

GEH · September 26

Hi Brenda,

I am so sorry to hear about your diagnosis. However, it appears that have it has been caught very early which is an extremely good thing. There have been so much advances with viable treatments etc. that were not available just a few years ago. I think the hardest part for me was coming to terms with the diagnosis. But that did come. Coming to terms does not mean giving in to. It seems, actually, to be empowering. At least it was for me. I am still constantly on the Internet researching any and everything available regarding ALZ, still after diagnosis about three years ago. Knowledge is power and allows one to advocate for oneself. Stay strong. "Kick a** and take names". (Empowering words someone in my past shared with me when I needed to hear them.) 🫶

Dorse · September 27

Thank you for sharing your experience with this diagnosis. I know it was possibly the worst diagnosis that I could have ever heard. I had the cancer diagnosis yrs. ago. ALZ was worse to hear. I am doing just what you suggested. I think coming to terms with the diagnosis was the most difficult. Thank you again, and God bless you during this journey.

I am living with a mild form of Alzheimers

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