Time to bring aphasia out of the shadows - comment

Long before Bruce Willis, we formed the Koach Eitan Initiative to educate the public about aphasia, its causes and what we can do to help those challenged by it.

 LEORA AND EITAN ASHMAN speak at a recent aphasia awareness event. (photo credit: Jenny Brenner Zivotovsky)
LEORA AND EITAN ASHMAN speak at a recent aphasia awareness event.
(photo credit: Jenny Brenner Zivotovsky)

Aphasia. A small word that recently made international headlines. How did this largely unknown condition suddenly capture the world’s attention?

Like with any illness or condition, everyone wants to know the details when someone famous is affected. So when Bruce Willis and his family shared the news that he would be giving up his illustrious acting career because he was diagnosed with aphasia, aphasia became news. And while such stories usually fade fast, this one has not. Yes, Willis is loved by so many Die Hard fans, but that isn’t the only reason aphasia has stayed in the news.

The Willis headline prompted more headlines, and we have been seeing more and more articles about aphasia every day. The world’s interest was piqued. So, with thanks to the Willis family for bringing aphasia to the forefront of our attention, the world is now learning about a disability that has remained in the shadows for far too long.

Long before this news, we formed the Koach Eitan Initiative to educate the public about aphasia, its causes and what we can do to help those challenged by it.

Aphasia defined

While the average person likely never heard of aphasia until a few weeks ago, the fact is that more people have aphasia than many other common conditions, such as Parkinson’s disease, cerebral palsy, multiple sclerosis or muscular dystrophy. Those familiar with aphasia either have it or know someone who does.

Aphasia is a language impairment that affects speech production and/or comprehension, and the ability to read or write. It’s important to note that aphasia is a loss of language, not intellect. It typically occurs suddenly after a stroke or a head injury, a brain trauma, or an infection, but it can also come on gradually as a result of a slow-growing brain tumor or degenerative disease that causes progressive, permanent damage, such as dementia. There are many different types and levels of aphasia, depending on its cause and extent of damage to the brain, and its severity varies according to which of the brain’s language centers have been affected.

 Global aphasia most commonly occurs due to a large lesion that encompasses much of the left hemisphere, specifically the left perisylvian cortex. (credit: Wikimedia Commons) Global aphasia most commonly occurs due to a large lesion that encompasses much of the left hemisphere, specifically the left perisylvian cortex. (credit: Wikimedia Commons)

Aphasia can be very mild or so severe that it makes communication almost impossible. It may affect a single aspect of language, such as the ability to retrieve names of objects, or the ability to put words together into sentences, or the ability to read. It is most common for multiple aspects of communication to become impaired, while some channels remain accessible for limited exchanges of information.

For example, the aphasic person may know what he or she wants to say but can’t get the right words out. Often they have also lost the ability to write or read. In other instances, the aphasic person has speech but has trouble understanding another person, so their response may not make sense. At times an aphasic person can present with multiple symptoms; some may even have strong language capabilities at first, but that ability can deteriorate over time.

Living with aphasia

While doctors and medical staff try their best to explain, and speech pathologists and therapists teach the necessary skills to communicate better, living with and battling aphasia on a daily basis is a very isolating, extremely frustrating and sometimes exhausting experience.

One way to help those with aphasia is to raise awareness about the disorder. Just as people became familiar with ALS when the ice bucket challenge went viral or learned about Parkinson’s from Michael J. Fox, we need aphasia to work its way into the collective consciousness.

When my husband Eitan suffered a debilitating stroke, we had no idea what aphasia meant. It took a long time – nearly three years – to really understand it, never mind learning to live with it. There are simply not enough effective resources for dealing with the lifelong challenges aphasia brings. While medical professionals and therapists do a tremendous job of teaching what aphasia is to patients and their families, there’s not much in the way of educating families on how to live day-to-day with this disorder. And there is hardly enough information for those not directly affected but who will undoubtedly encounter someone with aphasia at some point.

After more than four and a half years of continuous recovery and rehabilitation, and a new reality of living with aphasia, Eitan and I felt that it was time to educate the public, especially given the answer we most often hear when Eitan says, “I have aphasia. Do you know what that is?” Most people answer “No.”

So together, we created the Koach Eitan Initiative to raise awareness, and provide a clearer understanding of the signs of stoke and aphasia. We work to educate families, communities, therapists, government workers, health and medical professionals, store owners, and ordinary people like you and me, who may encounter a person with aphasia. We teach them how to properly communicate with, rather than ignore or isolate, a person with aphasia. For example, should you meet a person with aphasia in the supermarket, at a party, at the bank, or on the street, our goal is for you to understand that the person isn’t drunk or mentally challenged, and to teach you to recognize a person with aphasia and how best to communicate with them.

Why aren’t people more familiar with aphasia?

Aphasia is an invisible disorder. What people’s eyes don’t see, their minds don’t question. A person with aphasia looks just like you and me; there are no physical markers of this condition. Familiarity of the condition largely depends on actually knowing someone who has aphasia. This is one of the best ways to learn about any health issue, from someone who continues to live with it.

For someone with aphasia, sharing their condition can be difficult on many levels. It requires a true and full understanding of their disorder, and the person they have become as a result of the trauma that caused it. This takes time. Additionally, communication, which is sometimes difficult for an aphasic person, can often only be done with an advocate by their side.

Publicly sharing what they are experiencing can feel like an invasion of privacy and opens one up to vulnerability, which is challenging in and of itself. The self-confidence that has sometimes been diminished can take a long time to rebuild after suffering so much loss.

Our initiative is a credit to Eitan’s strength, his ability to share his experience of living with stroke and aphasia, and a desire to give those with aphasia the chance to feel like themselves again.

Through Eitan’s courage and determination, the Koach Eitan Initiative continues to teach people about aphasia and how to communicate with those affected by it, so they no longer have to feel the isolation and loss that is an inherent part of living with a disability. Our goal is for them to be included as full members of society, as is their right.

It’s time to bring aphasia out of the shadows.

Learn the warning signs of stroke

When it comes to stroke treatment, every single second counts. Seek immediate help and get to a hospital as quickly as possible if you experience any the following:

  • Sudden numbness or weakness in the face, arm, or leg (especially on one side of the body).
  • Sudden confusion or trouble speaking or understanding speech.
  • Sudden vision problems in one or both eyes.
  • Sudden difficulty walking or dizziness, loss of balance or problems with coordination.

The writer is co-founder of the Koach Eitan Initiative and an advocate for stroke and aphasia awareness in Israel. She can be reached at [email protected]