My MS Mouth: I Don’t Speak So Smoothly Anymore

It’s pretty well-known that Multiple Sclerosis (MS) can affect your speech and though I used to be a really good speaker (I even enjoyed public speaking) I have been noticing over the last year or so that my ability to speak isn’t that great anymore. This SEEMS to partly have to do with my control of the muscles in my mouth (or lack thereof) and partly my cognitive ability to actually turn what I want to say into a coherent sentence.

It's making me want to talk less

Now, I am in no way shape or form an expert on speech issues in MS, in fact, I would say that for the most part I have been avoiding even looking into it online because I didn’t want to admit to myself that this was becoming an issue. So when reading this post, just keep in mind that I am just sharing what I have been noticing in myself lately and how it feels to me because I can no longer avoid the fact that I don’t speak so smoothly anymore. It’s becoming really frustrating, and I am not sure what to do or what I even can do, but it’s making me want to talk less and less, which is not a great solution to this problem because I am guessing the whole “if you don’t use it you lose it” thing applies here as well.

Thought without language

What seems like the main problem for me is getting my thoughts out of my head when trying to verbally speak to someone. It feels like a cognitive thing. Halfway through a sentence, it’s like I’ll forget where I am going with a thought, as well as where I just came from. When things get really bad, it’s like I have an idea in my head that isn’t even made up of words. I don’t know how to explain it; I imagine in these moments that this must be how people (like cavemen) used to think before they had a language, or how animals form thoughts without the concept of a word. What is going through my dog’s head when she is staring off into the distance? Does thought even exist in the absence of language? Of course it does, but it’s really hard to imagine without thinking of words.

My brain has to buffer

But I would say that these moments feel pretty close to whatever that must be like because I can only describe what’s going through my head as “raw thoughts and ideas.” I will have to pause and just think and think until I figure out how to turn those ideas into words that people can understand. I never had to do anything like that before; for most my life, I could just start talking about anything, and the words just seemed to flow. I was quick; I always had a clever response to whatever someone could throw at me, and I didn’t seem to say “umm” very much because it never felt like my brain had to buffer… but now, on a good day, it’s like I am trying to watch a YouTube video on dial-up internet; every 2 seconds the video pauses and displays that little spinning wheel while it buffers and tries to catch up. This is why I prefer to write instead of speak because when I am writing, I can just stop in the middle of a sentence and spend time on deciding what the best word for the job is - which you can’t typically do in the middle of an actual conversation.

My tongue felt out of shape

On the flipside, there are times where I feel like I am forming thoughts into sentences in my head just fine, but I just can’t physically say them. I can’t adequately articulate them; this feels like a muscle issue to me. I would say the best example of where this problem first started for me was a couple years ago, when I started noticing that I could not roll my R’s anymore, so trying to order Mexican food off the menu was becoming a little embarrassing. It was like my tongue was just super out of shape and could no longer perform the verbal acrobats needed to pronounce certain words, especially words belonging to other languages, and as a result of my tongue “being out of shape,” it would just trip over itself when trying to pronounce certain things.

Starting to slur more basic words

So, I simply just avoided trying to form words that I knew I would have trouble with, but now I am noticing that I will start to slur even the most basic words and syllables causing me to sound drunk. This is what really gets me, because it feels like someone clamped something to my tongue preventing me from being able to enunciate each syllable nice and clearly. It’s frustrating! Sometimes this makes me feel “trapped,” like I know what I want to say in my head, but I just can’t say it. I can’t even imagine how emotionally devastating it must be for people actually dealing with “locked-in syndrome” because sometimes feeling like I can’t form coherent speech makes me want to just break down and smash something in a fit of rage. But at least I actually can speak even if it doesn’t feel like I can very well.

The effects of stimulants

Like I said, I really have not looked into this much, I guess I have just been avoiding it in hopes that the problem would just go away, but it hasn’t, and it only seems to be getting worse. I think I need to see a speech therapist because part of me feels like between different speech exercises and simply learning to actually think and plan a sentence out before I try to open my mouth, I could get back to speaking clearly. I am sure my fatigue doesn’t help (in fact, I seem to really notice my speech slurring when I am fatigued), but at the same time when I take any sort of stimulants like Ritalin or even Nuvigil, I seem to notice myself tripping over my words more, as if my brain is just pouring words into my mouth faster than I can actually articulate them. This makes me think of that famous “I Love Lucy” chocolate factory scene where the conveyer belt is dispensing chocolates faster than they can box them, resulting in them trying to eat all the chocolate before it reaches the end of the belt.

Seeing what my options are

So, I’m guessing I probably need to find a good balance of medication for fatigue and speech techniques to better plan out what I am going to say, which seems like something a speech therapist could help me with. Trying to pretend like there just wasn’t even a problem was probably the worst thing I could have done because more than likely, this would have been much easier to deal with had I identified it and started treating it earlier on. The question now is where do I go from here and what can I do to keep this from getting worse? I suppose the only way to find out is to start asking doctors and see what my options even are.

Has MS affected your speech? Have you seen a speech therapist to try to treat this? Is there anything else that you would recommend people who are also experiencing these problems try to do? Let me know in the comments below!