Update 9-17-2026

 Yesterday, after 7 days of undulating fever, fatigue, and muscle weakness, I went to Urgent Care, who recommended I go to the ER.  At the ER, after an X-ray, the doctor confirmed a spot of pneumonia, which, along with the UTI diagnosed 8 days ago, explained a lot about how lousy I felt.

I now have a new antibiotic to fight the UTI and pneumonia.

Also, yesterday, after the plumber began repiping our deficient pipes, he discovered black mold eating away the wood beneath the bathrooms. It’s a big project to mitigate the mold.  We will have to move into a hotel for at least a week.

Meanwhile, the electrical renaissance continues. At some point, we will have a fully upgraded electric infrastructure with failover to a big battery.

Needless to say, all the change, struggle, and chaos make it a challenging time to recover from illness.

On the good news side of the health ledger, I have an appointment to see a urologist today, so maybe I will be rid of the catheter I’be been wearing since the 3rd of the month. We shall see.

And the new hospital bed has helped me sleep longer and more soundly. It’s unclear how much of my sleeping difficulty was due to underlying routine ALS symptoms. But certainly, whatever their provenance, the bed is a big positive step.  I haven’t had a restorative night’s sleep in weeks.  Perhaps, someday, I will.

Michelle and Bia have continued to provide world-class care. I am so limited now.  Yesterday, I couldn’t walk to the bathroom, even with the Rollator walker.  I can’t get into or out of bed by myself.  

We are looking for a nurse who can work overnight so Michelle can get some sleep.  Unfortunately, as I wake up many times each night, she has to wake up too.  I need a sip of juice, my mask adjusted, my bedding remade.  And then she has to work the next day.

I’ll try to update you soon,