My Alzheimer's Journey
Part 91 - After Ten Infusions How Am I Doing?
My first Lecanemab infusion was October 28, 2025. My tenth was February 17, 2026.
The most frustrating part of Lecanemab treatment is not knowing if it is helping me. Is Lecanemab slowing the progression of my Alzheimer’s disease? I have no idea, and neither does anyone else at this early stage of the overall treatment plan.
I went to Duke Neurology last week for a six-month checkup.
The Physician Assistant administered the Montreal Cognitive Assessment (MoCA) Many of you have probably been given this assessment. It seems to be one of the more common cognitive assessment tests.
While researching the MoCA, I learned that Donald Trump has taken the test twice. He took it January 2018 and again October 2025. According to Trump and his physician he achieved a perfect score both times. That is impressive because only a very small percentage of people score 30 on the test. Please allow me to say this one more time - a very small percentage of people score 30.
Enough about our perfect cognition President.
My test score improved from 17 to 22 between August 2025 and last Tuesday. While I understand the purpose and the importance of the MoCA, I personally do not believe it tells an accurate story about my overall cognitive function. Does it serve as an indicator of cognitive change since I was diagnosed with Alzheimer’s disease? Yes, it does within the capabilities of the test.
Since August 2025, many of my cognitive impairments have worsened and several new Alzheimer’s symptoms have raised their ugly head. My short-term memory has certainly worsened. My ability to make quick decisions and to react to surprise situations has worsened (this is why I stopped driving). I will not bore you with the complete list. The point is that the MoCA can’t assess all of my cognitive impairments.
Everyone progresses down the Alzheimer’s path at their own pace. There is no standard that says at three months after diagnosis your symptoms will be X, Y, and Z.
For that reason, I have no idea how my Alzheimer’s disease would be progressing if I were not receiving Lecanemab infusions. There is no baseline. There is no expectation of progression. No one has a clue.
Therefore, I have no idea if Lecanemab is doing its job. I sure as hell hope it is. Lecanemab is being paid a hefty wage to slow my Alzheimer’s progression. I am paying a painful price to deal with the side effects.
It is a frustrating situation.
In September of this year, after I have received about two-thirds of the infusions, I will have a PET scan administered. That test should show if Lecanemab is working.
My understanding is that Lecanemab doesn’t work in a perfect linear fashion. In other words, it may work harder and better during infusions 12 through18 than infusions 2 through 6.
I continue to have faith in Lecanemab. I believe I made the right decision to receive the infusions.
My disappointment is the side effects are much more frequent and with greater severity than I expected. There are some questions if all the issues I have are actually related to Lecanemab. Over the new few weeks, I will be taking various tests in an attempt to determine the true cause of the extreme body pain I experience. I have also developed body chills and jerks (myoclonus). The white noise in my head is delightful - NOT!
I suspect Lecanemab is inside my brain eating amyloid protofibrils, humming a dreadful white noise tune, and pouring ice water into my veins. I want Lecanemab eating amyloid protofibrils. The rest of the silliness is not necessary.
Is Lecanemab working? I have no idea. Ask me in about six months when I have a PET scan.