Brain Drain

 

 

My neurological issues, which I've blogged about here, are worsening. And frankly, I'm rattled by it. Maybe that's to be expected, but the sleepless nights and occasional tears are wearing on me.

My cognitive decline has started interfering with my career. One of our sources of income was from my writing for a regional lifestyle magazine in the nearby Lehigh Valley. My jumble-headedness ended up mucking up a feature-story assignment over the summer. In the immediate aftermath, I apologized to my publisher and informed her of my neurological slippage, hoping that out of sheer compassion (or downright intimidation of an ADA-related lawsuit) that she'd cut me some slack.

Turned out, she cut me loose.

I immediately filed an EOCC complaint with the Pennsylvania office. As I saw it, I have a legitimate disability for which I requested what I saw as reasonable accommodations (clearer instructions, reminders about deadlines). And the publisher's response to those accommodations was: No.

My initial contact with the PA EOCC was heartening. My caseworker was wholly interested in all the details, and I provided her with as much documentation as I had. I was scheduled for a hearing in January 2026 (yes, that office is that backed up!).

But within a day or two of getting all that information, I was informed that I had no case and that the PA EOCC couldn't help me.

That outcome was one of the drivers behind our search for a new neurologist who might be better able (and more proactive) to help me.

Eileen jumped immediately into investigative mode — something she is excellent at, by the way — and found a top-notch neurologist in Philadelphia: Dr. Catherine Norise. Access to her is somewhat difficult (it's about an hour commute each way) but thus far, she has shown herself to be just what we need at this point: compassionate, clear, very generous with her time, appropriately conservative in mapping a way forward.

Dr. Norise has in mind a series of infusions that will clear my brain of a certain protein that is building up and short-circuiting my memory. These involve the introduction of a drug called Donanemab that, over time, should clear the proteins.

She also explained, however, some of the implications:

• This kind of treatment will not restore any of the cognitive loss I've already experienced
• It is also rather risky. One of the more concerning side effects are brain swelling and brain bleeding, These conditions are concerning, but, Dr. Norise assures us, treatable
• The administration of this solution is rigorous, taking one of two paths: A monthly treatment for a year. Or a twice-monthly treatment for 18 months. The latter schedule will be enacted if I react badly to the monthly rounds

~sigh~

Whoever said that aging isn't for the faint of heart sure knew what he/she was talking about.

There's a lot we're still considering with all this. It's a lot to digest for sure. I'm glad there's at least something out there that can help me. But I'm unsure I can navigate the cure. The thoughts of not losing any additional cognition is heartening. I just hope the hurdles to get there aren't so high as to make that goal unattainable.

I know I'm going to have to rely on an awful lot of understanding from some of the people in my life: my family, my friends, my employers, my colleagues. So much of what I do on a daily basis — either professionally or as a hobby — relies on mental clarity. Not gaining anything back that I've already lost isn't optimal. But I know that, at least as medical science is equipped now, it's all I've got.