Hello dear people,
(This is Marc writing.)

Yesterday was the long-anticipated visit to the University of Pittsburgh ALS Clinic. A crew of three accompanied Hanna to the visit. Here’s a summary of our impressions, what the doctor had to say, and what happens next.

This visit came in the midst of a particularly difficult couple of weeks. Hanna caught COVID two weeks ago, which brought her energy even lower than before and caused a loss of some of her hard-earned weight gain. The night before the ALS clinic visit, Hanna had what we eventually learned was a stomach bug: a low fever, and unable to eat without vomiting. In her words, “I’m feeling really, really, really shitty in this time. The weakest I’ve ever felt.”

So yes. Let’s get to the clinic already.

The clinic
This is a “multidisciplinary care and clinical research center” for ALS. We felt the “multidisciplinary” part throughout. Hanna has been benefitting from that even before today. The nutritionist she’s seeing, for example, is part of this clinic’s team.

We felt we were in seasoned, listening, caring professional hands. It wasn’t rushed, we had the doctor’s full attention, communication was great. They took the stance of partnership in wherever this all goes.

Diagnosis
The doctor had studied Hanna’s previous tests and records. Yesterday he spent time talking with her, asking questions, and testing strength and reflex in different parts of her body. And then he said that he believes this ALS. “90%.”

That last 10% has to do with possible autoimmune disorders. So the clinic is scheduling tests to make sure they aren’t missing something. More about that in “next steps” below.

That test will happen in the next month, and meanwhile this clinic will work with Hanna as if she has ALS. Hanna’s young age and the quick progression of symptoms is not typical. They aren’t going to waste time.

Causes
The doctor discussed the cause of ALS, and the truth is that the cause is unknown. It is not one disease, but a family of diseases. Different people experience different rates of progression and different life spans.

Thinking of some of you, we asked about the COVID vaccine. The doctor said he hears that question often, but the reality is that they are not seeing the connection in their patients. A small number of cases are something called “Familial ALS,” with a genetic connection. Hanna’s family history has nothing that suggests this may be her story, but the doctor offered testing if she wants it.

This is hard. How do we live with hard?
This is bad news. There’s no getting around it. We have to act as though this is ALS. And if it is ALS, no one can predict its progress.

The ALS clinic works with a neuropsychologist, who offers insight and counseling to Hanna and her caregivers. This is one part of a larger team (this is why they say “multidisciplinary”). There are specialists in nutrition, counseling, physical therapy, and more. Together they will work to slow the progression of symptoms and support quality of life.

The doctor surprised us with his confidence that we will see a slowing of Hanna’s progression. As we listened together, feeling pressed by the prospects ahead, we were struck by the doctor’s confident statement: “ALS is not a death sentence.”

I know we will be repeating that statement in our minds through days to come.

Another thing I’ll say about “living with hard” is that we aren’t alone in this. Hanna is not alone. The people closest to her are not alone. You are not alone. It has been about twenty-four hours since we left the clinic carrying the news of “90%.” There has not been much “alone” since. A group debrief with crackers after the visit. People coming and going from Hanna’s apartment. A rally around the to-do list. And now among other things this update to you.

I wrote this to the group this morning: “Thank you for the sense of lift we create together, stronger than the pull of gravity.”

If you feel Hanna’s story and this update as a pull of gravity, I hope you’ll talk about it with someone. There’s lift to be found in the flow of caring conversation.

Maintaining weight, getting sleep
The daily work now is maintaining weight, getting sleep, and engaging with life. Relating, creating, giving and receiving.

Weight and sleep are more important than medication. The doctor gave us some suggestions, and things like the meal train and help lists are already helping. (Thank you!)

Next steps: a rhythm of life, inquiry, monitoring and care
Here’s what’s happening now: life goes on, with a few new tweaks.

– Hanna will have a test called MRI Tractography. It’s like a regular MRI, but color codes visuals to show markers of autoimmune disorder. It won’t give positive or negative confirmation of ALS. But it may reveal something suspicious. If it does, the clinic will chase the possibility that this is autoimmune-related.

– Hanna is feeling her lungs weakening. She sometimes experiences breathing difficulty, and this is related to the quality of her sleep. She’ll soon be seeing a pulmonologist to learn more and seek support.

– Hanna will have new medication. There are three FDA-approved ALS medications, all designed to slow progression and prolong life. There’s no reason not to take all three.

– This begins a rhythm of tests every three months, monitoring weight, breathing, mood, sleep, and experience, adjusting treatment and support along the way.

– We asked about clinical trials, and the doctor said he’d like to wait a month or so until we have a 100% diagnosis of ALS. At that point, he said, “All the important trials are happening here.”

– And there will be a few other visits with specialists who can provide their particular kind of insight and support.

Thank you, as always, for your continuing care and support. It’s so… substantial.

If you’re new to this story and site and wondering what might be helpful, there’s a newish page with information about that: How can I help?

Love and buoyancy to you.