Aphasia: The Road To Recovery

by Kim Keller

You know what I never realized about my mother?  She has tremendous courage and determination.  I never really saw it so clearly before, yet looking back I realize it was there all along.  My mom had a stroke in September of 2009.  It was sudden and it was shocking.  She was left with the challenge of aphasia, which is the impairment of any language modality.  Honestly, I never heard of aphasia before she had a stroke; now, it’s part of our family’s everyday language.  Specifically, she has trouble reading, writing, retrieving words, and understanding almost anything mathematical.

While my mother was in rehab after her stroke, her roommate at the facility related a conversation she’d had with her doctor.  He explained a stroke to her like this:  A stroke is like a flood in the brain.  During the stroke your brain gets flooded with “water,” and it’s cloudy and hard to see clearly.  Then the water recedes and the brain gets clearer and clearer as the water seeps away.  I found that to be a very helpful analogy.  The picture he painted helped me to actually see a stroke.  It’s been a long road for my mother, but she works hard, every single day, to get her life back to where it was before the stroke.  It’s been a remarkable process.  Here are the highlights of her journey back from aphasia.

Colors and Body Parts: It took about 3 or 4 weeks to get colors and body parts straight.  She understood that red, yellow, green and blue were names of colors, but she couldn’t match the name with the actual color.  For example, I’d say, “Mom, what color is my shirt?”  She’d say, “Red? . . . Blue? . . . Green?”  I’d say, “No, Mom, my shirt is white.”  She’d reply, “Ohhh, white!  Yes, white . . . white . . .white.”  Then I’d say, immediately thereafter, “Okay, Mom, what color is my shirt?”  And she’d say, “Yellow? . . . Blue?. . . Purple?”  We’d do this over and over.  It was like that particular file in her brain was thrown up in the air and when it fell to the ground, the names of the colors had scattered, completely disconnected from the actual colors themselves.

The same thing was true with her recognition of body parts.  I could say, “Mom, where is your ear?” and she’d just shrug.  But if I asked where her earrings were, she would immediately show me.  So, I’d tell her that her earrings were on her ears.  That was news to her!  We practiced relentlessly, and now we look back at that time and laugh.  It seems very silly to her now.   But back then, it seemed insurmountable.

Retrieving Words: The most painful and public struggle has been Mom’s search for words.  When she’s with other people, the effort to find the right words can sometimes make her self-conscious and that just ratchets up the difficulty factor.  In the beginning, she’d struggle to just get a short sentence out.  Now, she can carry on a whole conversation with just some bumps along the way.  Nouns have been particularly hard for her.  For example, she’ll say, “Kim, please get me my . . . ”  While Mom was in the hospital, her nurse gave her a useful tip:  Sing a familiar song to find those words, like:  Row, row, row your boat . . .  But instead, make it:  Read, read, read a book.  Sounds silly, but, remarkably, it works.  Another strategy was to talk louder.  Her speech therapist told her to shout out her words.  True enough, when she’s angry, the words come flying out, nouns and all, everything intact.

Today, the nouns come much easier.  Her challenge now is to trust the incredible progress she has made, and not to rush when she’s talking.  She tries to talk fast, hoping it will force all the words out before she has a chance to struggle.  But rushing has its own problems — it doesn’t give her time to form a complete thought clearly, so sometimes she stumbles more than she needs to.

Reading and Writing: We first realized she couldn’t read when she started struggling with her food menu in the hospital right after her stroke.  It confused us because, during that first week in the hospital, when Mom was being evaluated by Mary Pat, the speech therapist, she was able to read words.  Mary Pat would point to a cup and ask, “What is that?”  Mom would struggle at first to find the right word, but then Mary Pat would write down three choices — cup, car, glasses — and Mom would point to the right word, cup.  But that didn’t translate to her reading and writing on her own.  At this point Mom could only write her name — nothing more than that.  So she had to  learn again, literally one word at a time.  She’d read a single word, then another, until she had finished a whole sentence.  Then two sentences, and so on.  Today, she can read and write again, but both activities take time and effort, and she finds it exhausting.  Just last night, she sighed, “I just want to read a book again.”

I have no doubt that she will.

Understanding Math: We were told that math would be the last thing Mom would get back.  She could count but numbers had no actual value.  For example, in the very first week she could easily count to 100, but the numbers had no representative meaning.  For example, in her exercise class, she might be asked to do 20 sit-ups and count them off out loud, but she couldn’t connect one sit-up to the number one or the second sit-up to the number two.  For the first sit-up she might count to 5, the second sit-up might be 10, there was no logical corollary at all.  The telephone presented a whole different problem:  When she’d try to call a number, say 123-4567, she’d say a completely different number out loud while dialing but still somehow get the number she wanted.  There was just a total disconnect when it came to anything numerical.

The other strange thing, after a few months, Mom could use a calculator to do her checkbook, but she couldn’t tell you what 2 plus 2 equaled.  A year after her stroke, her doctor asked, “Sandra, what’s 100 minus 7?”  She had no idea.  But just two weeks later, she was given a math assignment in her speech therapy class, sort of like a fifth-grade quiz, and completed the whole sheet, just like that!  Amazing.  The knowledge just found its way back.

As for my sister Karen and me, we focus on keeping Mom positive and reminding her that “Yes, she can!”  We make sure that we celebrate each small victory, and we remind her constantly where she’s been and where she is now.  The progress is quite an accomplishment, and we make sure Mom sees that, too.  All the information that Mom stored in her brain over the years was still there, but she’s had to work very hard to carve out new paths to retrieve it all.  It’s been a long, frustrating road back, but Mom has been relentless and inspiring in her pursuit of recovery.  The important lesson here is that you can recover from aphasia.  It takes a great deal of determination and courage, but it can be done!

 

Kim Keller is the Co-Founder of In Care of Dad. She lives and works in New York City.


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5 Responses to “Aphasia: The Road To Recovery”

  1. Tanya says:

    What a wonderful and inspirational story!

  2. Shira says:

    A great tribute to your Mom’s courage and determination — and to yours.
    How lucky she is to have daughters who’ve been with her every step of the way.

  3. Tina says:

    Your Mom’s strength of character and determination coupled with the love and caring of two incredible daughters is truly remarkable. A beautiful and touching story.

  4. deborah says:

    Oh my………what an inspiration you are! How special you are to your mother. I just read this, as I am thinking this is also in my family! Your journey of courage, inspiration and hope are keeping me encouraged, and hopeful! Thank you! Hope all is well with all of you. Your mom is an example of determination………and so are you! Thank you!

  5. Hi!
    My name is Ariadna Seuba and I’m the co-producer and community manager of Speechless, a documentary about Aphasia directed by Guillermo F. Florez. (www.speechlessdoc.com) I love your post and I would like to share it on our blog! http://www.speechlessdoc.com/blog/
    Let me know if this is ok for you! 😉

    All the best,

    Ariadna

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