Patient Blogs | Multiple Sclerosis
Living With Aphasia
photo of depressed woman lost in thought

It’s official! I’m trilingual. I speak Spanish, English, and MS gibberish. Sounds funny, right? But really, it’s embarrassing, frustrating, confusing – anything but funny. 

While I worked as an interpreter, my brain was under constant stimulation, going back and forth in two languages. I didn’t feel the strike of brain fog nor notice any signs of aphasia, a language disorder. My job kept me in check. It wasn’t until I retired that the first symptoms of cognitive deterioration started to show. 

I have a Bachelor of Arts degree in communications and a major in advertising. I’m trained in the field of communications. So, not only for the nature of my current job as a writer, plus my academic formation, communicating is within me. How dare multiple sclerosis try to sweep it away?

As a support group leader, it’s my job to keep everybody engaged in conversations and keep the dynamic going, but sometimes it can be challenging for me too, as I struggle to find the words or build a complete sentence. 

Aphasia is one of my biggest and most recent struggles. I battle it very often, even when I’m in front of a camera and the production crew tells me how good I’m doing, and the final video looks great. It’s one of those invisible symptoms of MS, many times unnoticed.

It not only affects the way I communicate, but also my memory and the way I think. I used to be the type of person that didn’t have to write anything down. I was so sharp. I could multitask and organize my day better than Alexa. Now, my entire life lies on my phone’s calendar. I’d be lost without it.

Trouble processing instructions or calculating numbers are symptoms of aphasia as well. Sometimes I’m speaking and I substitute one word for another and end up saying something that makes no sense. I laugh it out and move on. 

I joke around with my group members all the time, saying, “If there’s anybody here with good memory, you’ll have to leave because you won’t fit in with the rest of us. Memory loss is the first requirement to be in this group.” They all laugh.

But there’s no question that aphasia could put you in serious embarrassing situations. Most MSers don’t retire disabled because they can’t walk anymore. That’s an easy fix, with a wheelchair or a scooter. But they retire because they can’t process the same way anymore or follow instructions. It’s a difficult decision.

I’ll never get tired of saying this, but aerobic exercise can help a lot to fight brain fog, which comes hand in hand with aphasia. Oxygenating the brain, regenerating brain cells, pumping that blood flow, improves memory and makes sure that our brain shrinks at a normal pace as we age, as opposed to an accelerated pace, which MS is known to cause.

Aphasia could develop gradually over time. But it could become severe, depending on the location and extent of the brain damage. It’s classified in different patterns and types and can be treated with speech and language therapy. But again, not everybody presents the same symptoms since MS lesions are very particular to each patient.

A person with aphasia could have trouble understanding what they hear or read. Recalling the words when speaking or making complete sentences becomes a challenge. Many times, they say things that make no sense or the words don’t come out right. Their speech could become incomprehensible. These could affect many different areas of daily life.

If it wasn’t because I refuse to lose, I could potentially have worsened already. And if I add that I’m not getting any younger and pre-menopause is, slowly but surely, wreaking havoc, things don’t look too promising. 

Aphasia is commonly associated with a stroke or brain tumor, but it could happen with degenerative conditions like multiple sclerosis. Aren’t we lucky? It’s like the list keeps growing. I bet you never heard of it before you were diagnosed with MS. At least I didn’t.

Luckily, a lot of people tell me that they don’t notice it when I speak. They can’t tell that I’m struggling, trying to find the words and stay focused. 

I guess this is the only time I actually enjoy hearing that I “don’t look sick,” because one of my invisible symptoms isn’t obvious to the eye. If they only knew it takes a lot of effort to hide it. I’m constantly replaying in my head whatever it is I just said, just to make sure that it was a complete thought and that it made sense. 

It’s the art that all we MSers have of pretending to be well when we’re not. And this is just one symptom. Can you imagine what it is like to manage several of them at the same time, and trick people into thinking that we’re fine? We deserve an award for the role that we play.

In my experience, aphasia can be so embarrassing that even MSers don’t talk about it. Unless I bring it up, then they would say “Yeah, I can relate,” or “I have that, too.” Many have never heard about it, so they can’t identify it as one more symptom. But being treatable, it should be brought up to your doctor at the first sign.

In the workplace, the challenges of aphasia could be more noticeable. It can make us feel uncomfortable, especially if we haven’t disclosed our diagnosis. Ultimately, it’s a personal decision to share it with your co-workers, but it could help if you’re looking for any special accommodations, according to the provisions under the ADA (Americans with Disabilities Act) law.

The good news is that there’s treatment for aphasia and, depending on its severity, you could possibly isolate it. It wouldn’t hurt to discuss it with your doctor in case you’re experiencing some of the symptoms mentioned in this article, before it worsens.

Fatigue, poor sleep habits, and lack of exercise alter your brain performance. Making changes in those areas of your life might be a good start in your fight against aphasia, while improving your quality of life and overall health, all at the same time.

 

To connect with other people living with multiple sclerosis join our MS Facebook Support Group.

 

 

 

Photo Credit: fizkes via iStock / Getty Images Plus 

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Mayteé Ramos

Mayteé Ramos

Diagnosed since 2015

Mayteé Ramos was diagnosed with relapsing-remitting multiple sclerosis in 2015. She is a support group leader for the National Multiple Sclerosis Society, a member of the Buddy Network for Shift.ms, and has participated in programs such as the “Ask an MS Expert” series and the PBS American Portrait project. She enjoys traveling, watching tennis, collecting jewelry, and spending time with her three sons. Connect with her here.

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