After 9 years, I still have trouble…

I still struggle. Let’s see if I can explain it.

I recently read the birthday cards I received. They were very funny to everyone in the room.  But when I read them out loud, I had to concentrate on every word.  Unfortunately, I didn’t know what I was reading, but people laughed.

If I read them out loud several times, I might get the humor but it would take work.  It is hard to explain the disorganization in my brain.  When I read, I see each word but I can’t connect them in any context.  They are just a bunch of individual words.

Even now, Jill is writing this for me because I can’t do it myself.  I tried to tell her what I wanted to write about but my explanation was all over the place.  She asked me questions and worked with me until she understood what I am trying to explain.  It is frustrating but luckily, we work well together and usually laugh as we talk things through.

Language and cognition are big hurdles.  It has been 9 years and I am still trying!

I received an email!


I received an email today from someone who heard me speak:

Hi Gordon,

I heard you speak at Intel last month and after hearing your story of recovery, I’m hoping that you might have some good advice to give my family.

 

My brother David had a stroke in February 2013 at the age of 45.  He’s recovered physically, but is still greatly affected by aphasia.  While he has all cognitive ability and grasp of most of his vocabulary, he simply cannot grasp sentence structure, verb tense, and the language usage skills that are needed to speak fluently and to write fluently.

 

He cannot find therapy programs to help with his specific need.  The existing programs seem to cater to older patients needing life skills training such as how to cook and iron without hurting themselves.  This frustrates him since he has no deficits in those areas.  He was driving a car and doing everything else independently within months of his stroke, but has really struggled to regain speech and writing skills.

 

Do you have any advice on where we can find therapy programs or professionals focused on regaining functional writing and speech skills?  Any advice would be greatly appreciated.

I recommended him to Bill Connors.  Bill specializes in Aphasia and he truly understands my predicament.  If anybody has Aphasia, Bill is the one to contact at bill@aphasiatoolbox.com or 724.494.2534. He is based in Pennsylvania and his practice over WebEx so it is very convenient.

Why is talking so hard?

Sometimes I forget what it was like when Gordon could speak freely.  At home, we have mostly normal conversations–he says a sentence, I say a sentence, and so on.  He needs a few prompts now and then but we mostly understand each other.  But when we go to a meeting or have a phone appointment, I watch his language disappear.  It is clear from the look on his face that he is trying SO HARD to get coherent, orderly words to come out of his mouth.  Instead, choppy, disorganized words start coming, then all words stop and he looks at me to express his thoughts for him.

For a long time, I thought if he could relax, the words would come.  Not so.  Regaining language and cognition is much more complicated than that.  Even now, 6 years post-stroke, we have at least one conversation every day where Gordon starts in the middle of a thought and I have to ask him to start over from the beginning of his thought.  It doesn’t occur to him that I don’t know what he is thinking.

Jill Viggiano