Gluten is an asshole.
Those of us who wind up in the pot after a lunch meeting know this, and those of us who came back from the brink of death after going gluten-free know this as well. And after returning from helping to move my mother into a more secure memory care unit in her assisted living facility, I think those who are unlucky enough to suffer from gluten ataxia, really, really, really, know it.
When I first learned about gluten ataxia and connected it to the strange and devastating decline of my mother, I had hope. I did. I now realize that it was too late for that and unlike me, my mom wasn’t going to have a magical recovery simply by following the gluten-free diet.
So we just had to move my mom into the part of the facility that offers 24/7 care, because she needs that now. The last visit with the neurologist, who had given us a diagnosis of post cortical atrophy, confirmed what the nurses and administrators at her facility were already telling us–she won’t be getting better, and she can’t be without assistance at any time.
Even with that news, I can say that I was heartened when I sat down next to her during dinner on the “new” side and the staff brought her gluten-free meal. Not that it seems to matter at this point. Probably. See? I’m still kind of like, “Well, maybe it will help!” Help what? I don’t even know.
What I’ve gleaned from conversations, articles and trying to connect some dots with my family medical history and my mom’s symptoms, is that a hell of a lot more research needs to be done in this area. I realize I only went to a state school, but whether gluten ataxia causes post cortical atrophy or if maybe my mom has a gluten sensitivity AND post cortical atrophy, which just happens to have the same effect as gluten ataxia, is unclear at this juncture. But here’s what her symptoms were in the beginning: “jumping” text on a page and objects which creates the inability to read, judge distance, write and walk and sit down in a chair without assistance. Deteriorating coordination, loss of words, decreased memory (dementia) and of course, a hell of a lot of anxiety. These are symptoms of both conditions—gluten ataxia and post cortical atrophy. So.
My mom is a private person and even though she isn’t herself—hasn’t been herself in 5 years—I still feel the need to protect the intimate details of this part of her life. What I do feel comfortable saying is this—whatever the definition, this condition sucks. That anxiety I mentioned before? It comes on the minute you realize something crazy is happening in your brain, and it never goes away. Unlike some forms of Alzheimer’s disease, there is no phase where the memory is so far gone that the person suffering does not realize she is suffering. In my mother’s case we’re talking about 5 years of knowing that she’s losing her ability to do the things she enjoys, as well as losing body function, memory, independence and any sort of life that that she once knew. (And about 4 years prior of denial that anything was wrong, even though the rest of us could see it, if not identify what the hell was happening.)
Even now that my mom is in what we can assume are the advanced stages of this (although honestly, not enough research has been done to know what is happening, and when it will be over), she’s still pretty damn mad about her situation. I would be too. Or rather, I am mad about her situation and the lack of knowledge which led to her brain being damaged beyond repair. I have days where I just want scream, “HELP!!!” over and over and post it on Facebook, and tweet it and Instagram it. HELP. But the fact is, there isn’t anything anyone can do. Nothing. Not one damn thing.
It’s easier to be angry than to be sad, so that’s where I’m hanging out right now. Stay tuned. Or don’t, really. It’s a horrible channel and I wouldn’t blame anyone for turning it off.