June 1, 2010

National Aphasia Awareness Month - June 2010

This month is National Aphasia Awareness Month. Aphasia, as described on the NAA's website, is an acquired communication disorder that impairs a person's ability to process language, but does not affect intelligence. Aphasia impairs the ability to speak and understand others, and most people with aphasia experience difficulty reading and writing. Millions of people around the world are effected by Aphasia and yet so very few know what Aphasia is or fail to recognise a person as aphasic. Last year in the UK a man who was later found to be suffering from a stroke was institutionalised and treated for mental illness after he suffered from a sudden inability to speak. Imagine being that man. Imagine being able to understand everything that is going on around you but not being able to speak or write. That man could have been my dad, it could have been anyone you know. That's why it is so essential people are aware of Aphasia and the effect it has on a person.

The majority of people suffer from Aphasia as a result of a stroke but it can also be the result of a head injury, brain tumor or other neurological causes. You cannot generalise Aphasia as there are so many different forms of it and you might never find two people with the same level. NAA describes the following as the main types of aphasia, the names of which are often derived from the area of the brain effected by the stroke or head injury:

Global aphasia: This is the most severe form of aphasia, and is applied to patients who can produce few recognizable words and understand little or no spoken language. Global aphasics can neither read nor write. Global aphasia may often be seen immediately after the patient has suffered a stroke and it may rapidly improve if the damage has not been too extensive. However, with greater brain damage, severe and lasting disability may result.

Broca's aphasia ('non-fluent aphasia'): In this form of aphasia, speech output is severely reduced and is limited mainly to short utterances of less than four words. Vocabulary access is limited and the formation of sounds by persons with Broca's aphasia is often laborious and clumsy. The person may understand speech relatively well and be able to read, but be limited in writing. Broca's aphasia is often referred to as a 'non fluent aphasia' because of the halting and effortful quality of speech.

Mixed non-fluent aphasia:This term is applied to patients who have sparse and effortful speech, resembling severe Broca's aphasia. However, unlike persons with Broca's aphasia, they remain limited in their comprehension of speech and do not read or write beyond an elementary level.

Wernicke's aphasia ('fluent aphasia'): In this form of aphasia the ability to grasp the meaning of spoken words is chiefly impaired, while the ease of producing connected speech is not much affected. Therefore Wernicke's aphasia is referred to as a 'fluent aphasia.' However, speech is far from normal. Sentences do not hang together and irrelevant words intrude-sometimes to the point of jargon, in severe cases. Reading and writing are often severely impaired.

My dad suffers from a form of Broca's aphasia. Immediately after his stroke, on Easter Sunday 2008, he was seen by a speech therapist in order to identify to what extent his speech had been affected and in order to start speech therapy. My dad spoke with his eyes at first and it was through his eyes that we were able to know that my dad was still in there. We had doubts at first but with time we were able to realise that he truly was in there. One advise that I held on from the very beginning was not to compare my dad's aphasia to other's. Being optimistic is a great medicine but being overly so can be crushing for the person going through it and for his/her family too. There are several guidelines that aid in gathering a general understanding on how to communicate with a person with aphasia, the most complete is found on the NAA's website. Here are the main points from my own experience with my dad:

  1. Allow time for communication, don't rush for answers, fire away too many questions or cut in the middle of a sentence;

  2. Make sure there are no other distractions. I found that if my dad is in an environment with a lot of noise or people around him his attention is not as it normally is and his communication levels suffer as a result;

  3. Praise every effort and encourage him to carry on. It must be so frustrating to spend a good 5 minutes trying to say what you are thinking so when the sentence is finally done it feels like a big achievement;

  4. Remind him of how he used to be straight after the stroke(head injury etch) and how far he has come now;

  5. Don't make references to how he used to be before the stroke because that's not a fair comparison. Focus on the here and now;

  6. Most importantly treat and speak to your loved one as you used to. He has not lost his intellect through aphasia. He is still the same intelligent person he used to be. Don't treat him otherwise.

There are no known cures for aphasia and the process to reestablish communication are difficult and lengthy. The main tool that can aid aphasia recovery is speech therapy. There are centers specialised in aphasia all over the world but spaces are often limited and the length of your therapy depends on availability. My dad is lucky to have found a great center that has allowed him speech and group therapy every day for the last year but as I have said he is one of the lucky few and more funding is needed in this area in order to allow the same opportunity to everyone who needs it.

It is also essential to know that aphasia can effect anyone, young or old, female or male, of whichever nationality. Shortly after my dad's stroke I started a facebook page called Aphasia Awareness and which has grown from only a few members to 441 members today. We have people from everywhere writing about their own personal experience with aphasia or others like me who need advice on a loved on. Most of the stories are truly inspirational, one in particular is the story of Sarah who had a stroke at the age of 18 and who has aphasia as a result of the stroke. Through her own determination together with the help of speech therapy and a great support system around her she is making terrific progress. Her mom is a member of the Aphasia Awareness group on facebook and I believe she is a truly inspirational woman. Her positive attitude and fighting spirit are just admirable. They have created a YouTube video of Sarah in order to spread stroke awareness and aphasia. Here is the link in case you want to see what amazing progress Sarah is making.

Last year during the month of June I raised awareness through my facebook page and also raised money in order to buy a camcorder for my dad's center. They use the camcorder to record one on one sessions as well as group session and later being able to see what progress has been made and also from the teacher's prospective identify areas of improvement. This year I have no energy so I will have to raise awareness mainly online and this is my first attempt.

If you want to know more about aphasia go to te NAA's website where you will find many links and useful information. It also contains links and advice in other languages. I hope this helps.


  1. This is so wonderful that you wrote this. Brings awreness to this disease and a great tribute to your dad as well. Thanks for your well wishes, yeah I am thinking more like 4 weeks or less to go back LOL! xoxo

  2. What great information! Thanks for sharing this, and for educating all of us about this. You're one amazing woman!

  3. Thank you for sharing this and helping to spread the word. You might like to know that Connect - the communication disability network now has a blog and Joanie (Sarah's Mum) is the first contributor. See more here http://connectaphasia.wordpress.com/
    More on our website here www.ukconnect.org

  4. I teach at a University and love the concept. Aphasia is something that we all need to be aware of. Therapy for it is so much more effective when clients can follow through with it at home. That is why I believe that a good Cognitive therapy can help since recovery from aphasia is a process that may continue for many years. Unfortunately, most people with aphasia find that their insurance coverage runs out before they are done with therapy. It is often frustrating for the patient and their family as they try to continue the recovery process with very limited professional support.
    So this online help could really be useful for many sufferers.
    Thay is mu opinion, I hoe this helps in this particular month!

  5. Wow, thanks for posting this.