Dear Kennon, Meghan, Brion, Ladybug, and all:
Talking with Kennon recently, I realized how bad I have been about letting you all know what is going on with Julian. It’s hard for me to let others in when things are difficult, but I’m going to use this space to try to communicate better.
As I believe you all know, Julian was diagnosed with Alzheimer’s in the fall of 2024. At the time, it seemed possible that he might be eligible for infusions of Leqembi, but further testing and conversations with his neurologist, Dr. Ashok Patel, made it clear that the risks were too high. Having two copies of the APOE 4 gene greatly increases the risk of a stroke or of brain swelling. That risk is already great for patients taking the Leqembi infusions, so they would simply not be safe for Julian.
There really are no other available treatments, although I should tell you that Julian has some unrealistic hopes that some treatment will become available in time to help him.
In the meantime, the disease progresses. There is no timeline, but it is breaking my heart to see how quickly Julian is losing ground. We had to get a power of attorney for me so that I can handle all of our affairs. Symbolic things like that just shatter me; I cried all day after that visit to our lawyer. I felt ridiculous; I knew it was necessary, and I feel I should be stronger, but I am very fragile when it comes to Julian and this disease. We always knew Alzheimer’s was a possibility, but we always thought we’d have longer.
Click the link below for an update.
For Julian's Family & Friends: Keeping up to date 