Friday, October 7, 2016

My MS Symptoms Top 10 Countdown - #4 Cognitive Challenges

My brain has always been a huge part of my identity, as I suppose is the case for most people. My intellect and my wit have everything to do with how I see myself and I'm sure are a big part of how others see me. Because of this, I've always been particularly terrified of the potential cognitive consequences of MS. And I've been particularly devastated by the realities.

Cognitive issues I've experienced:

  • Brain Fog: Brain fog is a fuzziness, a slowdown of thinking speed, and having trouble concentrating. Brain fog is a perfectly apt descriptor. It's like a heavy fog that limits what you can see.  A favorite fictional character with MS calls it brain mud instead of brain fog, which is also accurate. It's messy and hard to walk through. Sometimes I have trouble understanding simple directions. I often have trouble understanding what someone is saying or what something means. Much of my thinking process is just significantly slower. [Some of my brain fog is likely exacerbated by drugs I take for nerve pain. More on that in a later post in this series.]
  • Memory Issues: Some who know me might argue that my memory has never been stellar, at least in some areas. It has definitely been made MUCH worse with MS, though. I've had many big lesions in the areas of the brain most associated with memory. Memory issues are a combination of difficulties - trouble acquiring new info, trouble retaining info, and trouble retrieving the info.
  • Word Retrieval: As a lover of words and as a writer, this one is especially awful. Sometimes it is also hilarious. We all experience the inability to think of a word from time to time, but the rate of this happening for me has skyrocketed. Sometimes it's for more obscure words, but it's often for incredibly common words. I often try to act out the word to have someone help me find the word, but this is often hilariously unsuccessful. Or I'll just describe the word, like calling a match a fire stick. Sometimes I use the wrong word, and I'm often not even aware of it unless someone gives me a weird look or asks me about it. This really worries me, though - how often have I used a bizarre, completely incorrect word and whoever I'm talking to doesn't say anything or give it away with a look? Especially in professional contexts, this thought horrifies me. A favorite example my family and I still laugh about is when I replaced the word slippers with muffins. As in, "have you seen my muffins? they were just right there on the floor!" There are many examples like this. Or sometimes I make up a word, without even realizing that the word I'm saying is not a real word.
  • Decision Fatigue: Everyone who knows me will tell you that I've never been fond of making decisions. I will avoid making decisions as much as possible, especially on things like where or what to eat. That said, making decisions has gotten much harder thanks to MS. Decision fatigue is something that happens to everyone, but for many of us with MS, it is compounded. This is related to MS fatigue in general. It is significantly worse later in the day, or on days where the fatigue is just at its worst. Minor decisions are difficult, but making huge, highly consquential decisions - like what MS drug to switch to - can be completely overwhelming. Decision making is the only area where I've used the "MS card" with friends and family, but so far it hasn't really worked. Dear loved ones, when I struggle to make decisions or when I ask you to please just make the decision, understand that my difficulty with decision making is a real symptom of my MS and that making decisions (even over simple things like where or what to eat) can really stress me out. It's not that I just don't want to make the decision, it's that it is actually nearly impossible to do so. It feels like my brain is paralyzed, like I'm stuck and don't know how to move.
My MS-related cognitive challenges have affected my life in a few ways. It has really challenged how I think of myself, and how much I place my intellect at the core of my identity. I've had to wrestle with the question of how I can or should see myself when that is threatened. It makes me feel bad about myself. It was also a big part of why I left a job that I mostly loved. Teaching applied music lessons (one-on-one) as well as teaching classes that involved lecturing to large groups was something I loved, but it was something that was getting harder to do, for a lot of reasons. I often struggled to find the right words and would sometimes even forget what I was saying in the middle of a sentence. This was embarrassing and upsetting for me, and it was probably sometimes frustrating for my students. I still teach university classes online, which is a medium that is more forgiving since it gives me more time to find my words and make sure I'm making sense. 

In many ways, my cognitive challenges are only mild. Some days are worse than others. A big part of why the deficits I have suffered have been so upsetting is the fear they spark about what could be. I'm utterly terrified of losing more of what makes me me. It's already bad enough.

1 comment:

Traci said...

You know what is a word though? Goosh.

In all seriousness, you should submit this one to the MS connections website or whatever it is that publishes posts like this.