May 16, 2026
To follow up on my last post:
Dr. Mandell saw us the next day. He thought Julian’s evening aphasia might be simply a sign of fatigue. I have been letting Julian sleep in longer, and he has had no more incidents.
Concerning Julian’s restless sleep, that is apparently a common symptom of Julian’s stage of Alzheimer’s. Dr. Mandell suggested that it is probably time for us to sleep apart. When I objected, he looked at me kindly, and said that many loving couples sleep apart, for many reasons. So I am now sleeping in our little den. With the door open, I am only a couple of feet away from Julian.
This does not mean I am happy about this arrangement. When I had the den (and attached bathroom) built, I had envisioned us sleeping together in our bed until Julian needed a hospital bed. I had not thought about it as a place where I might sleep.
General progress (regress?) information:
When Julian saw Dr. Patel in December, his score on the MMSE (an Alzheimer’s screening test) was sixteen.
Four months later, when Julian saw Dr. Mandell for the first time, his score was 10.
For perspective, the test is scored on points out of 30. Interpretation goes as follows:
25–30: Normal cognition
21–24 (or 18–24): Mild cognitive impairment
10–20: Moderate impairment
<10: Severe cognitive impairment
Julian’s initial assessment with Dr. Patel gave him a score of 21 (as I recall). Being Julian, and having excellent social skills, he was able to compensate for his problems.
Since then, however, the progress of the disease has outpaced his ability to compensate.
If, like me, you immediately look up the implications of a rapid decline in score on the MMSE, you will find some alarming information. To begin with, the average decline for an Alzheimer’s patient is about 2 – 4 points per year.
AI will then inform you that a more rapid progression most often indicates a secondary problem — a UTI or other infection, a stroke, or another complicating problem.
Please ignore AI.
Both Dr. Patel and Dr. Mandell, and Julian’s primary care physician (Dr. Anandpura, who has taken care of both of us for 20 years) — all of whom are reliable — tell me that none of those problems apply to Julian. I trust them, especially Drs. Mandell and Anandpura. They are intelligent and compassionate, and they keep up with medical research. Julian’s health is being carefully monitored.
Julian, I’m afraid, is a victim of his genetics. Having two copies of the APOE-4 gene increases the risk of Alzheimer’s (but — note! Lauren and Brion! It does not guarantee it!). It also lowers the age at which the disease may come on, and may significantly increase the rapidity of the progression of the disease.
Dr. Mandell, who keeps himself on the edge of Alzheimer’s research, is actively looking for any trials that may offer any hope. Current treatments, as some of you may have read (and as Seth Tyler warned us), have turned out to have been based on faulty research, and I am glad that we did not risk any of them.
More, as soon as I am able.
My apologies for the confusing navigation. As a former professional webmaster, this is embarrassing. “For Julian’s Family and Friends” is the home page, and should be at the top of the navigation links.
I really miss my old web tools. (Heck, I’d even be happy to be able to access the HTML directly.) I do not find this WordPress thing intuitive. Please bear with me.
For Julian's Family & Friends: Keeping up to date 