How MS Affects My Throat and Mouth
I’ve embarrassed myself a gazillion times just by opening my mouth. I mean, I never had the most polished social skills on the planet, but after MS took up residence inside my head, things got a little worse in some new ways.
Words slipping out before I could stop them
So how was it before MS? At times I would say something inappropriate and get a dirty look, and that can be attributed to just plain thoughtlessness. That dominated my 20s. In my 30s, things came out of me before I could put the brakes on. You might call it letting my guard down at an inappropriate time, but there was a bit more going on. Whenever I saw a startled reaction followed by stunned silence, I had no idea what I’d just said. I felt bewildered and embarrassed. It seemed more like a tic, an involuntary act, sort of like what you see with Tourette Syndrome. I’m not saying I had Tourette; I really don’t know much about it except that it’s a neurological disorder. It was the easiest analogy I could think of. When I think about the situations in which these behaviors occurred, I recall feeling pressure building from being either stressed and anxious, or excited in a good way, right before I said whatever I said. Doing so relieved the pressure.
Slowing down and taking my time before speaking
Around the time of my first attack of MS 22 years ago, another quirk came to my attention. My mouth seemed to run ahead of my brain. If I talked for too long in response to a question, I would sometimes contradict myself. I didn’t hear myself do it, the other person told me I did. It was only in the latest occurrence that I heard myself do it at the very end of my little speech during a neurology appointment. For confirmation, I asked my neuro if I just contradicted myself and she nodded. This helped me somehow, because I haven’t done it since. I find I can avoid it by slowing down, take my time responding, and carefully choosing my words. Since my brain seems to process things slower than it used to, I need to slow my speech, too. When I do it right, I feel much more in control. So all this stuff is what I’ll call the cognitive part of the problem. But there’s also the physical stuff.
My throat and tongue troubles before MS
Before my first attack of MS, I was a singer and flutist. Even as a kid, I had overly tight throat and mouth muscles, which made my voice sound strained and my flute tone thin and a bit on the sharp side of a pitch. I also had trouble tonguing sixteenth notes. I would tongue the first eight notes okay, but then my tongue would go mushy and stop working. My private teacher blamed the problem on breath support and drilled me on improving my diaphragm breathing. I worked hard in my practicing, but the problem didn’t improve much. As hard and as long as I practiced, I couldn’t break through these impediments. It kept me from becoming a world-class player. Muscle stiffness also impeded my fingering technique. Dreams of a career in classical music soon faded.
At the same time, jaw pain and bite problems that started in my early teens developed into such excruciating pain that it sent me to my dentist in my late 30s. I was diagnosed with TMJ, or temporomandibular joint disorder. At 39, my molars were worn down to the nubs after years of grinding my teeth, a companion symptom to TMJ. Doctors now think this tight, spasmy jaw muscle disorder as yet another early sign of multiple sclerosis.
In my mid-40s I started choking on nothing. Air, saliva, stomach acid? I’ve been taking Prilosec for acid reflux for years. It’s still a puzzle. Add to that not being able to voluntarily swallow. It still happens, and did so today while I was eating a bowl of soup. Fortunately, I discovered that if there is a build-up of mucus in the back of my throat, swallowing will resume after I clear my throat once or twice. It happens in bed, too. So today I cleared my throat and swallowed a spoonful—but my throat wouldn’t swallow the next one. Afraid of aspirating my soup and choking, I put down my spoon and walked away. I’m pretty sure I was eating too fast, too. I have to will myself to slow down.
Sounding irritable or angry even when I'm not
The weirdest vocalizing quirks are those that came along during the past five years. My voice quality has changed. It alternates between raspy, hoarse, low and growly, high-pitched, and strangled. Sometimes it comes out sounding angry. A friend came to my apartment one day. It was his first visit and when he glanced out the slider door at my patio and the grass and trees beyond it, he remarked about how nice a view I had. “It’s the main reason I took this apartment,” I said in a strangely harsh tone. He looked suddenly stricken and his face changed color. I didn’t mean for it to come out that way, but I think it happened because speaking can suddenly become terribly hard and I labor to push out the words. The effort probably is what makes my tone sound irritable when that is not what I’m feeling.
The most recent throat issue occurs while at rest, either lying down or blowing my nose. The soft tissues in the back of my throat collapse, preventing me from exhaling. It only happens for a second. This condition has greatly improved after losing 15 pounds.
Accidentally biting my lip
One of my oldest mouth issues is biting my lower lip while eating. Initially, MS affected my entire left side, including my face, making the eyelid sag and the left corner of my mouth slightly paralyzed so I talk out of the right side of my mouth. Sometimes, I can't get my lip out of the way in time when I bite down and my front teeth break the skin. It's painful, it bleeds, and it ruins my appetite.
Consulting with a speech therapist
Fortunately, I had a consult with a speech therapist and reported all these symptoms, and she can teach me exercises that will strengthen throat and mouth muscles and improve al of these issues. I haven’t gone through the program yet, but I will one day.
Do you have similar issues to share—or speech/throat issues I haven’t mentioned? Please do add your story to the discussion, won't you? I'd love to read it!
Does your employer provide workplace accommodations due to your MS?