Living daily with aphasia can be heartbreaking
Editor’s note: News-Sun editor Blake Ovard’s wife, Kim, was diagnosed with FrontoTemporal Dementia (FTD) in 2015 and Primary Progressive Aphasia (PPA) in 2018. The related progressive brain diseases means Blake is not only the full-time editor for the News-Sun, but also a full-time caregiver for his wife.
When the news about actor Bruce Willis stepping away from his career broke, I first wondered if the 67 year old was just leaving Hollywood, or wanted to focus on his musical talents.
Then the news came he was diagnosed with aphasia. Most likely Primary Progressive Aphasia (PPA), but that diagnosis has yet to be made public, as there are several forms of aphasia.
Since many of our friends and acquaintances know aphasia is something Kim and I have daily experience with, questions started coming into my email and text messages from people who wanted to know more about it.
The announcement about Willis brought a mix of emotions — from deep sadness for Willis and his family to frustration the focus has been strictly on “aphasia,” since that disease usually has an underlying cause.
As people started emailing and texting, I realized most people know more about Jada Pinkett Smith’s affair and thinning hair than know almost anything about a disease that marches along closely with neurological problems affecting hundreds of thousands of people — most notably FrontoTemporal degeneration. Aphasia is seldom the first sign of cognitive impairment, and neither of the diseases get much of a mention in the media — until now.
Those with the disease, and related neurodegenerative diseases such as FTD or Progressive Supranuclear Palsy (PSP), are desperate for more awareness. Starved of it in the mainstream media in favor of more well known neurological diseases with better fundraising efforts. Where PPA affects speech and communication, PSP, like PPA, is a FTD disorder that affects movement and sometimes resembles Parkinson’s disease symptoms. In fact, it is often referred to as “atypical Parkinson’s.”
For those fully understanding what aphasia is, there is another side. Aphasia — which affects about 2 million Americans — is known to have two primary causes, stroke and neurodegenerative disease. Stroke is by far the number one cause of aphasia, but given there was no mention of a recent stroke, and that Willis has for several years been using an ear piece to have lines fed to him, and confusion as to where he is, this is most likely neurodegenerative.
Those who are diagnosed with aphasia after a stroke have hope of recovery. They can sometimes go through speech therapy and learn to effectively communicate again. Those who suffer from a neurodegenerative cause for aphasia, have almost no hope for a cure. Loved ones watch helplessly as the person suffering from the disease slowly loses their ability to communicate, in all it’s forms, usually starting with speech.
When Kim’s aphasia started, about three years after her diagnosis of FTD, it started with a stutter that would happen every so often. The stuttering progressively got worse — hence the progressive part of PPA — until it started turning more into slurred speech.
One of the blessings along with the curse of Kim’s PPA is she can sometimes be communicating almost perfectly normal — with maybe an odd word thrown in, or forgetting the correct term for what something might be called. Then in the same conversation the curse kicks in. Her ability to speak coherently diminishes to the point where I sometimes have to ask her to try and repeat what she is saying so I can understand.
And, that’s heartbreaking. She tries so hard, and I can do nothing except try to be as caring as I can, and keep her life as normal as I can. My wife is trying to communicate — and she says in her head she hears everything perfectly normal and knows the words she wants to use, but they just won’t come out.
That is also true of her ability to write, both on paper with a pen or pencil, and to type messages onto social media or email and text messages. Sometimes with texts she can get the first few letters in and predictive text can help her out, but sometimes she can’t even figure out what those first few letters should be.
For someone who makes their living with communication, that is again heartbreaking. Knowing that at one time she had to calculate and communicate important information as one of only 10 women certified crane operators (CCO) in the country, and now texting is a chore, is heartbreaking.
But we continue on. She is one of the bravest, determined, heroic, courageous, unwavering women I have ever known, and she still displays those qualities daily in her battle with FTD and PPA.
There are several kinds of neurodegenerative diseases we know of, and collectively we call them dementia. Alzheimer’s is the most well known — and most well funded — and is what most people think of when they think of dementia. But others, like FTD, are more common that you may think. In fact, FTD is the most common form of dementia for people under 60, and is one of the most misdiagnosed. On average it takes more than 3.5 years to get an accurate diagnosis.
Could Willis’ aphasia be something other than FTD or PSP? Possibly, but most likely not. I’m sure his family will make known the diagnosis as they see fit, but for the sake of not only Bruce, but the hundreds of thousands of others with the disease,
I hope his family let’s his case bring the attention so desperately needed to his and other neurodegenerative diseases.
Blake Ovard is the editor of the News-Sun and may be reached at editor@ hobbsnews.com He also is the organizer of the Cloud Gravel Invitational bicycles ride in June in Cloudcroft, with proceeds going to the Association of Frototemporal Degeneration. #endftd
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