Introduction to living with aphasia

My name is Julie Shulman. I am a mother, wife, and speech therapist.  In June 2009, my husband, Ayal, suffered a stroke and an additional CVA (Cerebral Vascular Accident) in July leaving him with severe expressive Broca's aphasia. He is hemiplegic and wears an electric leg brace (Bioness technology) to assist his walking.

At the time of his initial stroke, our three children were ages 5, 3 and 1.

I remember his stroke as if it were yesterday.  We were sitting down to eat Friday night dinner.  He suddenly ran towards the bedroom and collapsed on the bed.  I am still ashamed, even now, that it took me about 3 minutes to realize he was having a stroke.  As he motioned for the phone I immediately dialed 911.  The ambulance took forever to come.  The kids were crying.  I froze....

After four days in Beth Israel Deaconess in Boston, they discharged him with an "unknown cause" for the stroke.  What 37 year-old healthy male suffers a stroke?  When he left he was walking and his speech output was clear but required a bit of effort to produce lengthier sentences.  We thought he was in the clear; unresolved, but over.

We were wrong.  Five weeks later, which was two weeks after we moved to Israel, he suffered a second CVA, whereby the surgeon needed to perform a craniotomy.

You don't realize the severity of a situation when you are in the midst of it.  I clearly remember when the neurosurgeon came out of the surgery.  He took off his surgeon cap and said, "Why don't you have a seat".  It's one of those surreal moments where you are watching a movie, but it's you on the screen.  You hope that you are dreaming and expect someone to slap you across the face, pour water over you, pinch you.

He continued the conversation by asking me the whereabouts of our families.  My family was in America, Ayal's were in South Africa.  I stupidly asked the doctor what he would do if he were in my situation.  I remember him saying, "If I were you......they (our families) should've been here 10 minutes ago.

Why wasn't that obvious to me?  In the midst  of the crisis, you don't have the luxury of stepping back and assessing all the different angles. I never even considered contacting our families... at that moment.

Ayal was in the ICU for two weeks fighting for his life.  Communal prayers around the world were said and phone calls and emails starting pouring in.  It turned out that he had Endocarditis.  A strep bacteria entered his blood stream and vegetated on his heart valve.  To make matters worse he would eventually have to undergo heart surgery to either replace or repair the valve.  Lovely.  When he was cleared for discharge to the Internal Medicine department, that's when I got the first 'wake-up call'.  Initially recovery was very slow and exhausting (getting him onto and off the wheelchair to and from his bed, making sure he was able to swallow yogurts, drink liquids, not choke or aspirate, etc...).

Then came the initial slap in the face.  I needed to know what he understood -- if he recognized me and our family.  I gave him a white board and a marker.  That was a very poor choice.  He looked at it not sure what he was supposed to do with these items I placed in front of him.  I knew this was a very bad sign.  That afternoon the doctor sat me down to explain what was happening from a physical, cognitive and communicative standpoint.  Ayal was informally diagnosed with severe- expressive Broca's aphasia.  Given my knowledge and professional experience, any chance for full recovery and returning to his 'old-self' was not looking hopeful.

Now I digress. Professionally speaking, as a speech therapist, you learn about the many disorders in graduate school involving limited use of speech (aphasia, dysarthria, and apraxia, etc.).  Aphasia, as I clearly recalled, was a disorder that only happened to adults, to the geriatric population.  In fact, during one of my semester graduate placements I assisted the running of an 'aphasia group'.  Imagine a group of 5 adults, ages 55-70, all stroke survivors, and all of them suffering from aphasia.

Some individuals were more verbal, some were more communicative but less verbal. The 45-minute sessions consisted mostly of yelling and one-word utterances, "no, no, no", "ya, ya, ya", "me, me, me".  The more excited or angry someone's mood became, the pitch, intonation, and volume of these utterances fluctuated.  Gestures always accompanied their responses.  I sensed frustration and anger.  How could a 23 year-old second-year graduate student be an effective and patient therapist?  I hated and dreaded these weekly sessions and highly anticipated the end of the semester and return to working with cute, little kids.  I promised myself that at the end of the semester, this would be the last time I would work with anyone who had aphasia.  Isn't it interesting how man plans and God laughs?

Back to 2009, after being hospitalized for a month, Ayal was discharged and placed in the Beit Lowenstein Rehabilitation Hospital in Ra'anana, Israel.

Trust me when I say that my story doesn't end there. I am going to try to share my journey with you in and my personal and professional insights in following posts.