Updates from Hanna

Hanna's energy and mood continue to improve, though her symptoms are also progressing. Her mom visits soon, and Hanna has received a wonderful honor as a writer. We have an update on finances, and two ways to help financially.

Hanna is feeling much better than she was when we last updated you. As she and her circle settle into life with ALS, a wealth of support and resources have presented themselves. The sleep and breathing lab is delivering energy-restoring tools, and life continually offers episodes of joy.

A summary of the first visit to the University of Pittsburgh ALS clinic. The nut: Hanna's diagnosis is 90% for ALS. They'll pursue the other 10% while beginning treatment to slow progression of symptoms and prolong life. Also in this update: living with this hard news.

Hanna reports on a difficult week: feeling her failing abilities, getting Covid on the flight from Montana, feeling the threshold of disability.

A quick update on tests and ways to help, and a poem to accompany a moment from Montana.

Hanna is about to start a new medication, and an MG-specific EMG test happens in early March. We offer some useful resources on "help," and send greetings from Montana, where it is -20F.

The diagnostic process continues, and meanwhile life goes on. I find the "a monster has moved into the house" metaphor to be useful. Details about ways to support Hanna are coming soon!

I am doing well. I started full doses of MG meds last week, and feel slightly better. But my energy is zapped. More doctor visits in Feb and March. My three learning edges: income, a web of care, and receiving help.

Details of what we learned from Hanna's EMG and battery of blood tests. This is probably not Myasthenia Gravis, but the next two weeks are needed to confirm that. There is a much more difficult possibility, uncertain but necessary to begin considering.

Hanna visited a neuromuscular specialist today. Next steps: a round of blood tests that look for many different kinds of indicators, intended to support or eliminate possible diagnoses. And an EMG test—electromyography—which will happen next Friday. After that, the doctor expects to be able to make a diagnosis.