Tweetchat on Aphasia Recovery

Sharon D. Anderson
Stroke Survivors Tattler

April 27 / 2015

Often when I reveal that my husband John had a stroke in 1997, the first question people ask is: “Has he recovered?” That is a difficult question to answer.  The short answer is: “Yes, he has made a remarkable recovery.” The next question is often, “Is he back at work?”  As all of the impairments from stroke have not miraculously disappeared, the answer is no.  John still has aphasia.   So how do we talk about an incomplete recovery from aphasia?

When John first had the stroke, the therapist in acute care was bound and determined that I needed to understand that John would “never recover”.  Somewhere in my files I still have the Xeroxed booklet that she gave me with the words, “this is no longer in print, but it is the best explanation of aphasia that I have found.”  As I read it, I thought, ‘there is a reason why this booklet is out of print’—it was very dour.  The bottom line: don’t expect much recovery.   I still thought therapy would be useful.  Then when I started to ask about John’s work insurance coverage for therapy, I was surprised to find that physiotherapy coverage was unlimited as long as there was progress, but insurance would pay only $500 towards speech therapy.  I asked why there was such a difference.  The answer was that people with aphasia rarely return to work, because they didn’t recover from aphasia. I wondered whether this was a chicken and egg scenario; there was limited recovery because of lack of therapy or lack of therapy because of limited recovery.

We decided to pay for a much therapy as we could afford, but I also kept doing research and asked for homework.  I spent time at the local med library reading the textbooks on aphasia and various techniques.  John and I worked together on the homework.  After reading about Roald Dahl’s technique of hiring people to just talk to his wife, actress Patricia Neale and some of the material on dyslexia, I decided that encouraging functional use might be a route to try.  We tried to involve as many senses as possible in functional use on the assumption that we might be able to create different neural pathways by challenging the brain differently.  The bottom line, John made progress.

In 2004, long after John had been told he had plateaued, we tried intensive aphasia therapy in the Dalhousie University InterACT program.   His speech speed increased from below the norms to within the normal range.  Grammatical errors decreased as well.   His confidence also increased.  He reads, writes, and communicates well.  Is his communication the same as it was before the stroke? No.  Has the therapy and work been worth it? Absolutely!  Do we need another way of talking about recovery from aphasia?  In my opinion, yes!

I don’t think any family should be told: “you will never recover from aphasia.” Nor should survivors be told: “you have plateaued” unless it comes with an explanation that using the current therapy techniques, there has not been as much progress, but there may be other routes to try.  I believe that it is important to work on everyday functional communication.  An excellent framework for this is the 2008 paper: Counting what counts: A framework for capturing real‐life outcomes of aphasia intervention.

So lets chat:

• T1. What percentage of stroke patients have understanding & expression issues? Is it more common with bleed or blockage? Why?
• T2. What are the evidence-based treatments for aphasia recovery?  How long is aphasia recovery typically? 
• T3. What evidence-based treatments are available for expressive or receptive aphasia?
• T4. Do patients get sufficient community support and therapy once they leave hospital. If not, why?
• T5. What are the future developments or technology in aphasia recovery?

Also please see Kate Allatt’s @fightingstrokes blog for her thoughts on this Tweetchat:

Next tweetchat on #aphasia recovery as part of our #strokerecovery series at 8pm BST 12th May!!! #hcsmca.