Another focused seizure, but modest improvement in motor control - 9/15-16/2025

My step-daughter Shaye completed her New England tour with her New Orleans Jazz band this weekend in Provincetown and took the P-town Ferry to Boston Monday morning, my wife Yas picked her up from the wharf around noon and,  after dropping off her bags at our house, they walked 15 minutes over to my hospital room in Beth Israel Deaconess Medical Center. 

We had a nice chat for a few minutes and then I had another episode where my left arm started shaking involuntarily.   Its like when you have a constant series of hiccups -- the muscles are firing with no conscious control.  When I massaged my shoulder the spasming stopped but my arm became completely non-responsive, I couldn't lift it or even wiggle my fingers. After 20 minutes it returned to its usual baseline where I could do anything but it was weak and slow and all movement had to be consciously directed.  I couldn't just pickup a cup of water, I had to think about opening my hand, moving it to the cup, carefully closing my fingers and gripping tightly, etc. my hand had forgotten how to put together basic actions. I might have to relearn how to touch type with my left hand, or maybe it will all just come back when the brain inflammation is reduced ... it is very interesting to see how the brain works. We take so much for granted!

I was wearing my 20 electrode "mad scientist" EEG net so the neurologists ought to be able to figure out what is causing these shaking episodes.  I'll talk with them in detail today. The initial word is that there was no EEG evidence of a major seizure, which is good news!

In the afternoon I had a visit from a Physical Therapist, Mandy, and an Occupational Therapist, Jenna, and they helped me pivot from the bed to a movable commode. I couldn't do it without both of their help so they talked to Yas and I about my transitioning to a live-in rehabilitation facility for a few weeks.  My plan is to reduce the brain inflammation, regain most of my mobility and return home; but if I have to rebuild strength and coordination I could do 3-5 hours of OT and PT for a few days at a rehab center if needed.

My son Ryan was working all day, so couldn't stop by to visit. My daughter Caitlin stopped by around dinner and we did more EEG experiments trying to see which electrodes responded to which actions and thoughts, so cool! We had a beautiful sunset looking over the Muddy River befote Caitlin went to her Jiujitsu class.

I went to bed around 8 pm and got my second daily steroid IV dose at 9:00 (4mg Dexamethasone).  Within an hour I saw significant improvement in my left side strength and coordination; maybe I'll be able to walk out of the hospital in a few days if the inflammation goes away! 

At 10 pm they took me to get MRIs of my brain, cervical spine, and thoracic spine with and without IV contrast. I was able to pivot from the bed to the gurney, to the MRI table and back with minimal help! It was a 75 minute session and I loved it. It's my white noise symphony with a cool refreshing stream of air blowing in!  Hopefully, they'll figure out what is causing the inflammation and the shaking episodes and come up with an effective treatment plan!

Back in my room, I struggled to untangle myself from the EEG cables and to rearrange the pillows.  With my left side still so weak, I couldn't even sit up in bed by myself which mad it hard to get comfortable in bed, but by this morning I had gained enough strength to easily sit up and arrange my computer table, etc.  

I'm thinking of self-publishing this blog as a LuLu.com book when I've eliminated all of the cancer from my body. I asked my daughter Caitlin if she could finish it up and publish the blog, if, God forbid, I'm unsuccessful and die or become incapacitated before beating this disease. I'm not in any imminent danger of death but I like to be prepared! Caitlin is very good at figuring out how to use digital tools, but I hope this is a task she won't have to learn!

Yas and Ryan both work full-time today so I'll call and chat with them this evening, but Shaye will stop by to visit in the afternoon and Caitlin in early evening. I'm thankful that my wife and children and all my siblings are on a group chat, so even if they are not physically near by we  can be in constant contact.

My 4 siblings and I have been meeting regularly on Zoom since the pandemic. They are all in Albuquerque, New Mexico when not on vacation. Sheila will visit in October and Nora for Thanksgiving, so that will be nice! I'm thankful to have such kind and caring siblings to accompany me on this journey!