mistake

It Must Be a Mistake, and Other First Reactions

It must be a mistake. That is Kimberly Williams-Paisley’s reaction when the doctor first tells the family about her mother’s primary progressive aphasia diagnosis. It’s difficult for the human brain to synthesize news it doesn’t want to hear.

Coping with bad news is the topic of this latest installment of our online book club speaking about Kimberly Williams-Paisley’s book, Where the Light Gets In. She writes about her mother’s experience with primary progressive aphasia.

Hearing the News

The doctor explains primary progressive aphasia to Kimberly Williams-Paisley and her siblings on page 70:

Primary progressive aphasia, or PPA,” he said. “Primary means that a communication problem—aphasia—is the first sign of the disease. Progressive means it’s going to get worse. Many stroke victims experience aphasia, but often it’s treatable. From what we heard, PPA isn’t.” This has got to be a mistake, I thought. Explainable. Fixable. Mom looked up at Ash and me again and shook her head more slowly this time, as if she were reading our thoughts. No, she seemed to be saying. It’s not.

Many times, when we receive bad news, our body enters a stress response. We’re trying to take in information quickly because we sense danger. Our hearts beat faster and our breathing quickens. It’s a fight or flight response directed at information rather than an actual predator.

The doctor continues to give information as Williams-Paisley’s brain attempts to push it out rather than incorporate it. On page 70, she continues:

He was treading carefully, as though he knew Mom might detonate at any moment with sadness, anger, fear. In her emotional state, it was hard for her to do any of the talking. His speech was measured, unemotional, calm. I tried to absorb all of it, but denial and anger were taking over. They’re wrong. This doesn’t make sense.

Denial and anger are natural initial responses to bad news.

How to Make Intaking News Easier

PsychologyToday offers helpful advice on how to cope with hearing bad news. Begin by taking control of your breathing. Purposefully fill your lungs with air, hold it, and then release it, trying to slow down your racing heart.

Next, put the bad news in context. In the case of a diagnosis, focus on what you can change at the moment and what you need to be aware of down the line. Consider your resources — such as family and friends — to help you cope with the diagnosis.

The article continues with steps that can be utilized in the subsequent weeks and months, and Williams-Paisley tries many of these in the remaining chapters of the book. But first she needs to let the news sink in, and it’s a difficult moment to get through.

What is your first reaction to bad news?

Image: Tra Nguyen via Unsplash

Comments

13 Comments

  • Stephanie
    September 6, 2018 at 8:02 am

    My mother was diagnosed with a stroke for 2 years and me and my brother insisted she was seen by a neurologist as she was getting worse. She was diagnosed with PPA within 30 minutes.

  • Laura Marcinkowski
    September 12, 2018 at 1:57 pm

    I was diagnosed with PPA by my doctor in August 2018. I never had a stroke or a head injury but I cannot speak well and my writing is not easily understood. I don’t know who to turn to with this disease..

  • Jane colby
    October 24, 2018 at 8:17 am

    How do I get to the Aphasia blog?

  • Susan Sussman
    October 24, 2018 at 8:42 am

    My husband was diagnosed with PPA about 5 years ago but it retrospect he probably had it much longer. The initial signs were so subtle Never had a stroke or brain injury. His neurologist says that he seems to be one of the “lucky” ones. He is not exhibiting Alzheimer’s symptoms. I guess that’s lucky but it’s so parinful watching him loose his ability to communicate and perform simple ADLs

  • Barbara Murphy
    October 24, 2018 at 9:30 am

    Did you know that northwestern university is seeking participants in their PPA study? My husband was diagnosed almost two years ago and we are currently in Chicago at the university study. No known cure but just maybe this study will help future generations in treatment and diagnosis. Look it up…we are gathering information on the disease.

  • Caroline Franco
    October 24, 2018 at 11:28 am

    My mom was diagnosed almost 4 years ago now, when she was 82. We had been wine tasting together and while we picnicked she began explaining that she was afraid something was wrong with her – that speaking was coming out in false starts. Within moments she was near tears as she tried to explain her fears and the words literally would not come. Getting a diagnosis was not easy as you must begin at step one – with your primary physician. After months we had a diagnosis, but as it was something that no one in our family had ever heard of (and we all consider ourselves to be fairly educated and aware) there was widespread denial, and worse, a great deal of minimizing of the diagnosis. Mom is now 86 and her neurologist is pleased that the disease is not progressing as fast as she thought it would. Mom can still speak, but with tremendous difficulty and she is hard to understand at times. Further, no one has the patience required to let her slowly get it out (not even her). She is now becoming more uncomfortable doing things on her own because her speech is undependable. I think because she feels so “normal” in so many other ways, she is still in denial and as late as last spring was continuing to ask, “Why am I not getting any better? Why cant they treat me to cure it?”

  • Sharon Amburgey
    October 24, 2018 at 8:19 pm

    I had the privilege of being a caregiver for a very dear friend who was diagnosed with PPA. After being in each other lives for 58 years, we pretty much knew each others thoughts and that was a great help. My friend was a blessing to many through her years of teaching and knowing how to always bring out the best in others. She deserved all the love and care she received. We had the support of her family although they lived out-of-town. On numerous occasions, when speech was not there, we played a guessing game. As I knew my friend wanted to take a drive but couldn’t express her thoughts, I would always say, “we will figure it out.” Then I began with questions, is it far or is it a place to eat or is it somewhere we went recently? This worked for us until God gently carried her home.

  • Elise Sawyer
    October 26, 2018 at 12:22 am

    My husband was diagnosed with PPA a bit more than 2 years ago, though if you were to ask our adult children, he was dealing with something for at least 4-5 years before that. I attributed the problems/concerns to stress/hearing aids. A year away from the stress did nothing to help with the loss of words, challenges in understanding questions and conversations, etc. While it is definitely very hard to hear this diagnosis, it was actually a relief to finally have a name and places to go for information and help. We contacted Northwestern immediately, but were turned away from the study. We are fortunate to have an Aphasia Recovery Center in our home town, and he sees a speech therapist. He handles it well, but it isn’t easy for any of us to watch as he loses the ability to express himself.

  • Katharine Blaker
    October 27, 2018 at 5:05 pm

    Definitely check out Northwestern University: Cognitive/neuroscience clinic run by Dr. Mesalum. They have many resources on PPA.

  • Kevin Feeley
    October 29, 2018 at 3:42 pm

    When initially, I was informed that my diagnosis was one of having aphasia I was skeptical of the psychologist’s diagnosis; as my pre-morbid self, I enjoyed having a vast lexicon. Consequently, I deduced that the doctoral individual with whom I was conferring simply has a petite vocabulary (and I was correct in that aspect); but as I ventured further up the proverbial roadway, it became apparent to me, that there were individual words, and common phrases, that sounded most peculiar to me, in my post-morbid status. Wherein, I referred back to my own reference encyclopedia, i.e., Random House Dictionary of the English Language – Unabridged – 2nd Edition; circa: 1987, et seqq. While I was vaguely acquainted withe much of my disambiguatorium, I nevertheless was at an uneasiness with my, then, lack of linguistic ability. NEVERTHELESS, I pushed-on, feverishly applying myself to the art of articulate speech (a requirement in my line of work); while I could only provided you withe a subjective opinion, I do hope that my ability to chronicle my own aphasic episode has turned for the collective coherent best. – KevinP.

  • Kevin Feeley
    October 29, 2018 at 3:48 pm

    When initially, I was informed that my diagnosis was one of having aphasia I was skeptical of the psychologist’s diagnosis; as my pre-morbid self, I enjoyed having a vast lexicon. Consequently, I deduced that the doctoral individual with whom I was conferring; simply had a petite vocabulary (and I was correct in that aspect); but as I ventured further up the proverbial roadway, it became apparent to me, that there were individual words, and common phrases, that sounded most peculiar to me, in my post-morbid status. Wherein, I referred back to my own reference encyclopedia, i.e., Random House Dictionary of the English Language – Unabridged – 2nd Edition; circa: 1987, et seqq. While I was vaguely acquainted withe much of my disambiguatorium, I nevertheless was at an uneasiness with my, then, lack of linguistic ability. NEVERTHELESS, I pushed-on, feverishly applying myself to the art of articulate speech (a requirement in my line of work); while I could only provide you withe a subjective opinion, I do hope that my ability to chronicle my own aphasic episode has turned for the collective coherent best. – KevinP.
    rev. 2 POST: 15:49 EDT, Monday. 29 OCT 2018.

  • Christina C.
    November 8, 2018 at 3:05 pm

    The Northwestern University Mesulam Center for Cognitive Neurology and Alzheimer’s Disease is a world-renown center for primary progressive aphasia. We are actively recruiting persons with PPA for both observational and interventional research studies. We also have educational, clinical, and support programs that are available for diagnosed persons and their families. For more information, please feel free to contact me at [email protected].

  • Anonymous
    November 13, 2018 at 5:04 pm

    My wife has PPA and is getting worse. No speech at all and her writing is getting hard to read. What can I expect in near future and where do I go for help if she cannot communicate at all??

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