New to group - in MCI stage of AD

ChristyW · September 23

Good morning! I’m recently diagnosed with MCI of AD. Prior to my diagnosis, my husband didn’t notice anything, but I knew something was wrong. I mentioned my memory difficulties to my internist and she did a test in her office that I passed with flying colors. When I continued to have difficulties a year later with significant word finding difficulty, she referred me to the Alzheimer’s clinic upstairs. I was put through a series of cognitive testing, had an MRI, bloodwork, a pTau-217 test, and a CT/PET scan for amyloid, all of which were positive.

I began having memory difficulties 10 years ago in my mid 50’s, and they have progressed. I have not yet entered the dementia phase, but I am taking Donepezil 5mg, which helps tremendously with word finding and memory recall.

I’m a retired RN-Clinical Analyst; prior to that, I was a software developer on mainframes. I have a decent amount of cognitive reserve, but that seems to be fading. My biggest worry is not about my own well being; I’m desperately worried about my husband and the demands this disease will place on him (he’s 71.) We do not have long term care insurance, and the savings we do have are needed for daily living (mortgage, food, etc..)

I’d love to reach out and chat with anyone in the MCI stage. I apologize for the lengthy post and thank you for reading it!

Dorse · September 23

I was diagnosed with MCI about a yr. ago. I was diagnosed with AD after all the test which included neurology testing, MRI, Pet Scan, lab / blood test, etc. This AD diagnosis was on July 15, 2025. I was, as most people are, devastated with the AD diagnosis. I am doing about the same as when I was diagnosed. I still take care of all my business & myself. I'm not sure how I feel about the diagnosis now?

GEH · September 23

Hi Kindred Spirit,

I heard a bit of me in your story. First, thank you for sharing about yourself. I am about three years into a AD diagnosis and will be 68 in a few days. Similar to you I noticed/felt deficits in myself many many years before diagnosis. "Something was off". I worked in a career that required 100% all the time and new along time ago something was not right. I had uncountable tests, exams, psych elevations (they just knew I was a hypochondriac!! LOL) and eventually after many years they finally decided I had been right. I have AD. c’est la vie. I am doing quite well I think with the help of some meds that really seem to help with simptoms. Here are the ones I currently take. Like you I take Donepezil but at 10mg, Memantine HCL ER 28mg and the most recent addition which really seems to have made significant difference is Galantamine ER 16mg. I took only DonepeziI for several years but stopped waiting for my first neurologist to help and started research on my own and went to him to ask for prescriptions for meds I found that might help. I have gabbed on a bit here, I apologize. The most important thing I think I learned was to advocate for myself. Research everything there is about ALZ to learn about. Go to your MD armed with research, questions etc and if they poopoo you ... Fire them!! and find another one that hears you and respects your contribution to your own healthcare. Stay positive. There are breakthroughs in AD all the time. Much love to you on your journey.

Dorse · September 23

Thank for sharing..

LBC83 · September 23

Welcome to our club. 😞

In October 2023, I mentioned to my Nurse Practitioner in my annual physical that I was having slight memory issues. For example, if asked a 2-part question, I could reply to the first query but then I'd forget the second query. I was also doing some software development as part of my job. I found I was needing to better document where I finished off each day so I could more easily figure out where to pick-up my work the next day.

My Nurse Practitioner asked questions such as "Who is the President?" and "Without looking at your watch, what time is it?". The former was trivial, the latter was a bit tricky as I had to estimate the time in the first waiting room and then the time sitting in the treatment room waiting for the Nurse Practitioner to arrive. But I apparently answered all of the questions correctly, as they announced I had normal cognition. But I pressed the point, so I was referred to the Lou Ruvo Center for Brain Health at the Cleveland Clinic. There I had an initial cognitive screen using the Montreal Cognive Assessment tool (MoCA), I scored a 25 out of 30. Next was blood work to rule out other issues (I had no other weird things in my blood). Then an MRI to again rule out strange stuff going on in my brain (nothing abnormal). Next up was a detailed cognitive test that lasted about 3 hours. I scored very well in some areas, but poor in a couple of areas. This lead to a preliminary AD diagnosis, and I started on Aricept at a 5 mg dosage, which was later increased to 10 mg. The final step to confirm AD was either a lumbar puncture or an amyloid PET scan. I chose a lumbar puncture as that was in-network at the Cleveland Clinic. The results confirmed the presence of amyloid, with a diagnoisis of MCI due to AD.

Following my diagnosis in April 2023, I elected to start on Leqembi. My first infusion was in June 2024, I recently had infusion #32. I have had zero reactions to the infusions. This past summer, I had a second MoCA test, and I scored the same. I presume that Leqembi may have played some role in maintaining my cognition level. I've done a fair amount of reading the studies with Leqembi & Kisunla. Both drugs have demonstrated excellent performance at maintaining cognition for those who start early in the disease process, as defined by no/low tau levels. I've never had a tau PET scan so I don't know my tau level, but I presume my tau level is low based on my static cognitve scores over time with Leqembi.

My hope is that even if my cognition drops a bit over the next few years, I will retain enough cognitiion such that I will be eligible for the next generation of AD drugs once they are availble. I'm specifically thinking of anti-tau drugs such as E2814 (Etalanetug) and BIIB080, drugs being developed by Eisai and Biogen, respectively.

I almost forgot, I'm 64.

lindajny · September 24

I’m painfully waiting for the doctor to call me to discuss my results from the bloodwork for pTau. I have the results which indicated High. I need to know what’s next. I too have known for 2 years something just isn’t right. I requested the blood test. I was told I was sensitive because my Dad had Alzheimer’s and perhaps I was projecting. My dear Dad passed in May so I know what it’s like to be a caregiver. I have an overwhelming need to make sure everything is in order for my husband. The information that is shared here already has been so insightful to me

eaglemom · September 24

See if you can contact your local ALZ Chapter. Hopefully they will have support groups you could attend. I used to be so against support groups, now I'm so in favor of them. They've been an absolute lifeline for my DH and I. Our ALZ journey started 14 yrs ago, he was only 54 and it was beyond devastating. We didn't see this coming. Stress yes, but not this. But through research I found a support group and that was the beginning of helping the both of us.

If your local ALZ chapter doesn't offer anything, just look on line. There are support groups that meet in person or through Zoom. We personally do a daily Zoom program. We both love it, love the people and the program.

Let us know what you find out and we'll help point you in a direction.

eagle

Dorse · September 24

Thank you..

New to group - in MCI stage of AD

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