14 February 2023

This is Marc writing, with an update on three subjects: “How is Hanna?” “What’s up with doctor stuff?” and “How can I help?”

How is Hanna?

If you’re subscribed to this site, you’re seeing Hanna’s writing. That speaks far better than I can on this question. I can say something about it from my perspective as her friend, in case that’s useful.

Hanna and I talked this morning over a shared breakfast sandwich, with sunlight streaming into the neighborhood coffee shop. During the conversation she remarked that we have now lived one month with the possibility of ALS.

Here’s an image that’s sticking with me: the day the doctor mentioned ALS was the day a monster showed up at our door. Here is this huge looming presence, that we didn’t invite and that won’t go away no matter how much we say we’d like it to leave. And it was so close, so threatening, so big and stinky that it was impossible to think about anything else. The monster filled all life.

This morning Hanna asked if I’d learned anything in the last month, and I said I’ve learned that we can live with a monster. It lives at Hanna’s house, but has a way of showing up in all of our houses at surprising times. I’ll catch its odor and for a time forget everything but the monster. I’ll be trying to do something, but the monster is in the way. Maybe it comes to your house too.

And life continues. Food still tastes great. The company of friends is still delightful. Jokes are still funny, stories still inspire, and the days still provide. Hanna still feels the urge to create, to give through her work and voice and care, and she does. So do the people around her. And the monster is here too. It’s silly to pretend it’s not. Not only silly, but a useless frame and bad mental health practice. However much I’d prefer otherwise, breakfast with the monster is much better than breakfast with those terrible twins Avoidance and Denial.

What’s up with doctor stuff?

An earlier update mentioned a two-week experiment with medicine that helps people who have Myasthenia Gravis (MG). Its effect on Hanna’s symptoms provides a clue for diagnosis. Hanna did notice improvements in several areas. Not complete, but noticeable. Seeing that, her neurologist has scheduled electromyography (EMG) test, specifically focused on MG. That test takes place in early March, and her appointment with the ALS specialist is March 20. On Thursday she gets an MRI to see if the weakness in her hands could originate from pinched nerves in the spinal cord.

Meanwhile Hanna has had good conversations with various sources of information, community and support. She’s adjusting her diet, and she’ll be visiting with a nutrition specialist. And she hopes to receive a prescription for a medication that can help manage her symptoms and delay their progress.

To sum up where we are, the ALS Association says that on average it takes nine to twelve months for someone to be diagnosed with ALS, from the time they first begin experiencing symptoms. That’s because there’s no specific indicator, so it’s a process of elimination and watchful monitoring.

There are still possibilities other than ALS. Each morning I face east and do the chicken dance to better ensure a treatable diagnosis. Perhaps you have a similar ritual.

How can I help?

A few friends have met with Hanna to bring some clarity and structure to this question. We’re aiming to provide a clear detailed answer about this sometime soon, along with a tool you can use to sign up for this, that, or the other thing. Soon!

Thank you

Thank you all for your care and notes, inquiries and offers. There’s a lot of love surrounding this monster.