07 Apr Why Bruce Willis’ Aphasia Diagnosis is Jarring on a Personal Level
Until last week’s announcement from actor Bruce Willis’ family, our family struggled with explaining our son’s condition.
We often get questions from friends and casual acquaintances who are curious (in a kind and caring way) about our son Kevin’s condition. Many suspect he has autism, which is not the case. I openly share that Kevin suffers from a Traumatic Brain Injury (TBI). But what I really want to say is that Kevin has a language disorder called Aphasia as a result of his TBI. However, aphasia to date has been such a difficult diagnosis to explain and understand. So, I rarely use that word when describing Kevin. Until now.
In the past week since the sad news about Bruce Willis, I’ve asked people to google “Bruce Willis and aphasia” to better understand our son Kevin’s issues and struggles. Aphasia now has an identity through someone famous. And more stories and insight on this dreadful disorder continues to come in daily.
Here’s our story regarding Kevin’s aphasia diagnosis
When our son Kevin was in a rollover automobile accident in 2001 at the age of 15, the decline in his cognitive ability, along with his ability to speak in a clear and coherent manner was at first subtle. Early warning signs included frequent forgetfulness, a more distancing demeanor, as well as a drop-off in his schoolwork and classroom performance. Always being very self-disciplined in completing his daily homework assignments, Kevin now had to be constantly reminded.
Many of Kevin’s school teachers noticed a change. Increasingly, he had more and more difficulty following basic instructions. His math teacher required all students to do their work in pencil. Kevin suddenly began to do all his math with a pen, despite being constantly reminded of his noncompliance. His brain simply wasn’t processing the request.
Soon after some of these noticeable changes in his behavior, speaking in a clear and coherent manner became a struggle for Kevin. Suddenly, his responses didn’t often make sense. It was difficult for him to string words together to form a complete sentence. In those early days following the accident, some doctors seemed to overlook it as a root cause. Some wanted to blame the sudden changes on psychological issues. What a nightmare path we were led down at that point (see our previous article about Prescription Meds).
Thankfully, we eventually connected with doctors and specialists that did deeper testing and analysis. They were thoughtful and thorough and looked at everything. And their conclusion? Our son Kevin is suffering from Aphasia due to his automobile accident.
What exactly is Aphasia?
Aphasia is a language disorder caused by damage in a specific area of the brain that controls language expression and comprehension. Aphasia is caused when there is damage to the language-dominant side of the brain, usually the left side, and leaves a person unable to communicate effectively with others.
The brain disorder can occur after strokes or head injuries — and can even lead in some cases to dementia.
Mayo Clinic states a person with aphasia may:
- Speak in short or incomplete sentences
- Speak in sentences that don’t make sense
- Substitute one word for another or one sound for another
- Speak unrecognizable words
- Not understand other people’s conversation
- Write sentences that don’t make sense
Also, there are three kinds of aphasia; Broca’s aphasia, Wernicke’s aphasia, and global aphasia. All three interfere with your ability to speak and/or understand language. Healthline does a nice job of describing these three types here.
The worst part about this language disorder is not being able to express when something is physically ailing you
Almost five years ago, we knew something was bothering Kevin, but had no idea what was happening. It wasn’t until we saw him pacing in his bedroom late one night, seemingly doubled over in pain. We knew at that point we needed to take him into emergency. The medical staff couldn’t quite determine his issue until finally, at 4am, he broke out in a fever and threw up. They immediately ordered a lower abdomen CT and determined he had a very large kidney stone. It required a procedure to blast the stone into smaller pieces given it was too large to pass.
I can’t imagine the pain, confusion and worry he was going through at that time and our hearts ache just thinking about it all over again. But these are the kind of things that can lead to sudden behavioral outbursts given pain or brain fatigue he might be experiencing, coupled with the frustration of not being able to properly tell us something is bothering him.
Tips for communicating with people living with aphasia
An article published by the University of Montana provides some useful tips on how to communicate with someone with aphasia. Through our experience the past 20+ years with Kevin, I do agree with many of these tips. I especially agree with the following:
“Whenever possible, continue normal activities (such as dinner with family, hosting company, going out, etc.). Do not shield people with aphasia from family or friends or ignore them in a group conversation. Rather, try to involve them in family decision-making as much as possible. Keep them informed of events but avoid burdening them with day to day details.”
However, trying to continue “normal” activities does come with risks. Kevin is sometimes overwhelmed during the entrance or greeting stage when we go out socially or have visitors to the house. Even if he knows them extremely well, he might have a little panic attack and public meltdown, which can sometimes be difficult to diffuse. I’m quite sure it’s due to his frustration not being able to express himself properly during a greeting.
Group conversations are a major challenge. While Kevin rarely participates, he does understand most everything everyone is saying around him. Most people don’t realize that. I find the best way to get Kevin ‘involved’ in a group conversation is to reach over with a smile and give him an occasional ‘high five’ or a ‘fist bump’. He usually responds quite well to those gestures, and it makes him feel like part of the conversation.
In short, experts say you need to have patience and empathy when interacting with people who suffer from aphasia. It is especially frustrating for someone unable to express the words they know they want to say.
What led up to Bruce Willis’ aphasia diagnosis is eerily familiar
While I certainly don’t know the personal details of what led up to Bruce Willis’ aphasia diagnosis, or the type and severity, some are reporting Bruce’s declining cognitive state has apparently been witnessed by many on his movie sets for some time now, according to the Los Angeles Times
That is not surprising. As with our experience with Kevin, the cognitive decline is often gradual. And then suddenly, things seem to get worse. And before you know it, you realize things are now in crisis mode.
What’s next for Bruce Willis?
Bruce Willis might now be the face of Aphasia as Michael J Fox is to Parkinson’s. When Michael J. Fox was first diagnosed with Parkinson’s, it took a lot of courage for him to reveal his disease to the public in such an admirable manner. It’s too early to predict how public Bruce or his family will be with all this, but I’m hoping they’re able to shed some new light on this very personal topic and that others (including my family) can learn and grow from what they discover.
We hope this will not only raise awareness of this debilitating disorder but encourage more investment and medical advancement towards better treatment and programs. For Kevin, it has been a constant series of various Speech & Language programs he’s attempted over the past 20 years. Results have been minimal despite efforts by some very dedicated and pretty amazing speech therapists we’ve engaged.
For now, our hearts go out to Bruce and his family as we extend our support and well wishes. This will be his toughest assignment yet. And we pray that he finds the strength and courage as he did so often as our beloved movie hero, John McClane. Godspeed.