I had my regular ALS clinic appointment last week. I go every three months, which is recommended based on my level of progression. It’s not an uplifting place, but I’m learning to prepare myself and to control my reactions, regardless of what the clinicians might tell me. Having Rob there is crucial. The one time he couldn’t make it is the one time I ended up sobbing, and it took me a week to get back to normal.

Here’s how the appointment goes. I start out by getting weighed. That means wheeling my chair onto the scale to get the weight of both of us. Then I hop out (just kidding! I get out slowly, with help) and they weigh the chair alone. This brings to mind a new mom weighing a baby by holding it in her arms, and then weighing herself without it, and that thought leads to another thought and then another and I find myself wondering what I would be doing right then if I didn’t have ALS.

Then the nurse comes in and asks a series of questions called The Functional Rating Scale to determine how far I’ve progressed since I was last there. Yes, that’s right. They’re asking me. Somehow my journalism degree doesn’t leave me feeling qualified to assess myself medically, but this is just another one of the fun and different ways that ALS works. Based on my responses, the nurse tells me I’ve dropped two points because I can’t always get dressed by myself. This, he reassures me, is a negligible drop. Other things that have caused my score to drop in the past: my handwriting has changed, turning in bed is difficult, I can’t climb stairs.

The nurse and I discuss which specialists to see that day, based on my specific issues. Choices include speech therapist, occupational therapist, physical therapist, respiratory therapist. They always want me to see the respiratory therapist, because any loss in breathing function is obviously serious. The breathing tests are very sucky, and I suffer from performance anxiety, but my breathing itself is fine.

In addition, I ask to see the research nurse to talk about clinical trials and to go over some of my own research with her. When you have ALS, you hear a lot about things that other people are trying: supplements, detox programs, diets (raw, vegan, ketogenic, paleo), even people getting their dental fillings removed, in order to lessen their heavy metal toxicity. The research nurse comments on everything, but her stance is that not much can be currently done to slow progression. She mentions that the filling thing has been in and out of popularity since the 1970s.

Then she corroborates something I read about cannabis holding promise, and when I express interest in learning more, everyone at the clinic stops in to tell me their recommended way to add weed to my protocol (the RT likes vaporizers, the nurse likes tinctures, etc.) But the main thing it does, they tell me, is to eliminate symptoms I don’t really have, like trouble sleeping or eating, or relief from pain. “Try it,” the nurse says. “But just enough to make you feel relaxed. You don’t need to get ripped.” They give me the forms for a medical marijuana card.

The social worker stops in to talk to us about home health care. This is something I worry about when Rob has to travel. I’m lucky to have my sister nearby, and she’ll always help, but she has a life of her own. I want to have an idea of what to do once I require even more assistance. We discuss the difference in cost and efficiency if you use an agency versus hiring a personal caregiver online. We also discuss the trust issues of having someone in your home in this way, and I can see Rob start to grow uncomfortable. It’s like hiring a nanny, you need to be able to trust this person with your most valuable possessions. And also with all your stuff.

Theoretically, these are awful conversations, but we find ourselves laughing a bit. And with the research nurse, I am able, briefly, to separate myself from the disease and just talk with her about advancements and science. How do I increase my body’s ability to dispose of misfolded proteins? How do I up my T cell count? I’ve never been so interested in biology before. Maybe if they taught the science of disease back when I was in high school, I would have paid more attention. Probably not, though, since that was back when I thought I would be healthy forever. And now that I think about it, maybe they did teach the science of disease. I don’t know, but I do remember that there was a really cute guy in my class.

Finally the doctor comes in. (Not the one who suggested a feeding tube.) At this point, we’re in our third hour of the appointment and there’s not really much more to say. He tests my arm strength and my fingers. We talk about life. I’m actually in a good mood. I can deal with the clinic, at least for now, when the news is basically no news.

Share this post on your social platform