MS and a Loss for Words

I was reading a semi-weekly local publication recently and came across a poem and artwork by Laurence Jones, who lives with epilepsy. I’ve reprinted the poem here, with permission:

Trying to Get the Words Out

Just out of sight

The words won’t come

Something on the tip

Of my tongue tied tongue

Somewhere out of reach

The things I need to say

Just hiding in the shadows

From the light of day

As I mutter and I sputter

As I falter and stutter

Nothing will escape

From my old grey matter

(I’ll remember as soon as I get home)

Searching for Words a Familiar Undertaking

I don’t know about anyone else, but I’d estimate that I spend about 30 percent of my conversation time covering up the fact that I’m searching for words. This piece resonates with me more deeply than I’d like to admit to myself.

Perhaps one of the most frustrating parts of this form of speech disorder in multiple sclerosis (MS) is that it’s not one that we’ll find getting the most coverage. Most of the time we find information on the physical manifestations of the disease rather than what I call the “cognitive funnel” between my brain and my mouth.

Variations on MS Speech Problems

Dysphonia, as described by the National MS Society, is when you seem to run out of breath when talking. Dysphonia has to do with the air moving from our lungs and through the vocal cords. It can be caused by weakened (or spastic) muscles in the abdomen, chest, and throat. This can mean a very soft voice or loud speaking volume, changing volumes, or pitch changes in the voice.

Then there’s dysarthria, which is a muscular coordination problem between the parts of our mouth that make speech happen. The diaphragm, throat, vocal folds (cords), soft palate, jaws, tongue, and lips all have to function in proper order when we speak. It’s an amazing process if we really think about it.

We all know how many other muscle system coordination issues can affect our gait, balance, and fine-motor skills. The same can happen with the muscles controlling everything in the physical chain of speech.

Dysarthria can cause slurring, uncoordinated sounds when we try to speak.

Cognitive Issues and Speech

But what about the cognitive issues with speech? I know we’re not the only group dealing with the issue. It’s a fairly common issue as we age. Several other health conditions could contribute: Jones told me, as a person with epilepsy, that the issue comes up frequently at support groups.

So why do we have to go searching for information about searching for our words?

Problems with word retrieval is called anomia, and it’s not uncommon in MS, as reported in the journal Disability and Rehabilitation. It’s Latin for “without names.” In other words, it’s a difficulty finding names and other words.

But anomia’s evil cousin — aphasia — could also be the underlying issue. Aphasia can seem like the same thing, only it’s caused by destruction of the brain’s language centers.

MS can attack these areas, which allow us to attach meaning to words and also how we access the words and their meanings. Aphasia can also affect our ability to get the words out in writing, not just speech.

A Complex but Shared Experience

Finding ways around MS speech related issues can be complex, but which elements of working around MS aren’t?

It was nice to see someone else put into words, as Laurence did, what I sometimes (and more often of late) experience when it comes to putting things into words.

Wishing you and your family the best of health.

Cheers,

Trevis