On Gabby Giffords: ABC News Fails to Find the Words…

A copy of American Heart Association material on Aphasia was given to me by my husband's speech therapist on the first day that my he, victim of a hemorrhagic stroke in the basal ganglia, was accepted into the Acute Rehab unit at our wonderful local hospital. The therapists worked with him for a month; then the equally excellent outpatient therapists continued to work with his aphasia. It became clear that his aphasia was primarily due to damage to the Broca's area, so understanding language was not so much of a problem. I was encouraged to sit in on his outpatient therapy sessions, so I learned the therapist's techniques for helping him sort through the pile of words in his brain and find the right one(s). And to begin to form phrases and eventually sentences. (From the first, I never asked him a question that could be answered with a nod or a head shake – he was asked would he like this (phrase) or this (phrase) and encouraged to repeat the desired phrase after me.)

It has been quite a journey – a marathon rather than a sprint – but with his commitment to recovery, to do the work required, and the amazing dedication of his therapists, 21 months after his stroke he has become fairly fluent in more than just social conversation.

I agree that the name "aphasia" must be used and the condition must be explained.

Diane Sawyer was interested, as usual, in the political aspect – will Gabby run again for Congress? – rather than using her condition and rehabilitation to assist all of those who are working with this condition – as patients, therapists and caregivers – across our country. And inform the rest of the viewing population about this condition that is never named. A major fail, Diane…..

I agree with Karen. Why is the media so afraid to say the word aphasia? To understand, to learn, to move beyond, we need to assign common language and that includes saying 'I have aphasia', or 'my husband has aphasia'.
However, Tucson TV viewers were fortunate in that our local KGUN9 TV aired the piece about Gabby Giffords on Diane Sawyers 20/20. But it was preceded and followed by interviews with St Joseph's Neurological Institute staff and members and staff of our own Carondelet Aphasia Program. Then KGUN commentators said aphasia over and over! I believe a part of having this happen is the dedication of our program director, Dr Fabianne Hirsch, and the members of CAP to getting the word out.
Now if we can just get this out nationwide!
Here is the link to one segment. http://www.kgun9.com/news/local/133849943.html
Send it on to all your friends and family. What better way to get the word out.

Sadly, this typical of the commercial news media. My understanding is
that Dr. Nancy Helm Estabrooks was interviewed for 90 minutes for this piece and that she repeatedly mentioned the word aphasia. However, in the final edit that aired, she appeared for about 45 seconds and “the A word” was never mentioned. It was also never mentioned that Dr. Helm Estabrooks pioneered the development of Melodic Intonation Therapy. In my aphasia conversation group the next day, my clients were appalled. The word Aphasia was mentioned once on Nightline by Bob Woodruff who sustained a traumatic brain injury in Iraq and suffers from aphasia.

Congresswoman Giffords’ rehabilitation is remarkable and inspirational.
But ABC and Diane Sawyer did a disservice to the aphasia community by
failing to clearly acknowledge the condition.

I too was stunned by the transformation that Gifford has gone.. And I also felt a little left out because they did not mention too much about aphasia. I too have aphasia I to have a brain injury. It's been almost 3 years since I had an injury and I struggle every single day with aphasia. At this point I can read very little. I can't write at all. If you ask me to count change on lost. I can't tell time. I'm very thankful with all the people in Victoria as citizens medical center. And I'm very thankful for my brother Mike he is the person that has been with me all the time. And then last year I went to neuronal restorative and Tyler. As a brain injury program. And I didn't get a lot of help that way. I also noticed it in Giffords place she had constant care. Many of us don't. I watched the whole hour and it was fascinating. And I'm very thankful that she will have a good recovery. But I have to say I felt a little short changed.

Oh, dear. That should be Louise G. on the first post.

PS – I forgot to mention how I am able to communicate. I am using the Dragon – it is a piece of software. I plug it in to my computer but my headphones on and it puts everything on my computer. Without the Dragon there would be no way that I can communicate.!!!

back!! Gabby.

Liz, I am so sorry about what you are having to struggle with. It was not until I really got into it with my husband that I realized that not everyone who suffers a brain insult has the kind of care and therapy that he received. I saw parallels between what Giffords received and what he experienced. But he still had difficulty with writing and was really stuck with reading. An avid reader before, he could not comprehend a lot of what he was trying to read so gave up. But he kept looking at magazines and the newspaper. I finally found books for children – classics that had been condensed and adapted for juvenile readers – and he finally began to "get it". That's where he is now. I read about one man who could not read who read aloud to to himself from 2nd grade readers for two hours at a time. He eventually recovered his ability to read.

Don't give up.

It appears that Giffords is being steered by political interests – including her husband – who probably do not want her to have any labels such as "aphasia" spoil her image as a politician and achiever. They seem to be treating this like a temporary speed bump that she will conquer 100% and be her old self. The pressure on her has to be incredible.

I believe that one of your criticisms is valid, Diane Sawyer failed to mention the word "Aphasia", however, I believe her interview was sensitive and informing. As a Speech Pathologist whose specialty area is aphasia, I felt she showed the struggles, the processes, and most of all the emotional feeling when achievment had been reached. I believe she showed a representative sampling of what Gabby had to go through to make even small gains. I applaud Diane Sawyer for doing such a stellar job of relating to Gabby and her husband and obviously going the extra mile to understand Aphasia (even though she didn't call it by name). Thank you Diane.

I agree that aphasia should be named. My husband has had aphasia for 23 years after brain surgery. It is astonishing that many doctors do not understand the term or how to communicate with him. He has fired me from attending his doctor's appointments to encourage them to communicate with him directly. The part of the this post that I did not like was the word "suffers". I do not think my husband suffers. He struggles, but he is a joyful man in his life and his family

In the UK we only got very limited "highlights" of the piece and the speech and wordfinding problems were apparent but were not explained or given a name.. I agree with what others have said here – and Juda's comments about suffering versus struggling are excellent!!

With all respect to Juda, I can't delete the word suffer because the persons with aphasia whom I have seen struggling with this condition do suffer with it. They may be joyful and make the best of their lives – their "new normal" – but the loss of the ability to express language, to communicate as they did before, does cause them suffering – frustration, isolation, depression – that cannot be denied or overlooked.

Thank you for writing this! I have aphasia. I wish that the National Aphasia Association would do more outreach to media organizations.

-Grace http://myhappystroke.blogspot.com

Thank you for sharing this link! As Communication Specialists, it is our responsibility to network and share these resources with one another in ANY and ALL ways that we can. Then we must take it a step further in our little worlds of access and influence and tell EVERYONE we know! SCALE contacted all the local media in Baltimore to make efforts to increase local awareness. All SLPs have the link, please share it!!! Thanks to Fabianne Hirsch for speaking on behalf of all the SLPs who are passionate about people with aphasia and their families and for sharing her work with us ALL!

Dear Grace, I just read all of your posts on your terrific blog. It meant so much to read about you and get to know you. I am your mother's age, caring for my husband who had his hemorrhagic stroke not quite a month before yours. Your blog is just incredible. If only others – those who don't understand strokes and deficits and aphasia – could read it. I wish the media would recruit people like you and my husband and let you present their stories.

I tried to write a response on one of the posts – the one about pouring the cereal into one bowl and the milk into the other – but it didn't show up. I know about being a busy mom – that could do it to anyone! Take good care. Your spirit is inspirational.

I agree that in the early stages my husband experienced frustration, isolation and depression as you mentioned. I also experienced the loss of the person before this happened. It has taken time, patience, practice and the love and care of others to help us both in his recovery. He was 41 when this happened. But like million of other Americans with disabilities he has learned that his disability does not define him. It is only one part of who he is. He is a person with aphasia. He is not an aphasic. His life is so much richer than being defined by what he cannot do. I encourage you to do all that you can if you live with a loved one with aphasia. I also encourage you to move to acceptance and belief in a whole and complete life despite this challenge.

We do need a spokesperson of stature for Aphasia!

To some extent I agree with the original post. It would have been nice to hear the word "aphasia". However, I was elated to see so much focus on speech pathology. Generally, in such stories, you see a huge focus on physical therapy and barely a mention of speech. A good example of this is interviews with James Brady. Another example was the movie "Regarding Henry" which was highly supproted by the National Brain Injury Association at the time it came out. (Granted these are older examples, but they were the ones that came to my mind as I was typing this response.) In that movie the physical therapist was credited with eliciting his speech by putting hot sauce in his food (GULP). TDiane Sawyer's interview was quite the opposite. I say bravo to Gabby Giffords, her husband and Diane Sawyer for a job well done. It is one facet of our job to educate, educate, educate so the general public becomes more aware of the word "aphasia".

Thanks a lot for spending some time to describe the terminlogy towards the noobs!

Can you all help me find the reasons why using the term ‘aphasia’ is important? Here are some reasons I can think of.
1. Having a name for the problem means you can find aphasia specific services.
2. It helps emotionally and psychologically to have a name for a problem that is hard to understand
3. It helps to find information about the problem.
4. The more people that identify as having aphasia, the more services will become available to them.
5. It shows that they have aphasia,and not some other ‘mental problem’.

Can you think of others?

Should this list of reasons be sent to the media so that they understand the benefits of using the term aphasia. Should there be a media kit about how to interview people with aphasia that includes this information as well?

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I wanted to thank everyone for their comments and feedback. I also wanted to respond on behalf of the National Aphasia Association. We have been focused on this issue since before the airing of the interview and it is important to know that it is our mission to raise public awareness of aphasia. As the national voice of those with aphasia and their families we need to be sure that our responses are appropriate and reflect the majority of those we represent. To that end we have been working with our PR rep and others in the media as well as speech language pathologists and PWA to determine the most effective form of response. Rest assured that we are committed to getting the word out about aphasia and we encourage you to continue to do the same.

You can contact me directly at ganzfried@aphasia.org

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