Primary progressive aphasia

I have not been here for a long time. Stranger times we could not have wished for, and we are affected by it in different ways. Like the experience of living with dementia, I do not think that there are two people who have experienced COVID-19 the same way. We all come to this monster with our own set of vulnerabilities: mothers who have to home school, fathers who lost their jobs to name but two of the most obvious ones. Then there are the many, many friends who lost loved ones. And the many, many friends who lost their sanity to conspiracy theories…
COVID-19 is extremely harsh for many people living with dementia who find this incarceration on top of being incarcerated in their own world extra difficult to cope with. Loneliness and isolation are not good for most people, let alone those who are more vulnerable. I have no advice, no pearls of wisdom.
I do want to share a story of a remarkable person I met a few weeks ago who is living with progressive aphasia. Whilst I have heard of this, it was a first for me to meet someone living with the condition. <> “Primary Progressive Aphasia (PPA) is a neurological syndrome in which language capabilities become slowly and progressively impaired. Unlike other forms of aphasia that result from stroke or brain injury, PPA is caused by neurodegenerative diseases, such as Alzheimer’s Disease or Frontotemporal Lobar Degeneration. PPA results from deterioration of brain tissue important for speech and language. Although the first symptoms are problems with speech and language, other problems associated with the underlying disease, such as memory loss, often occur later.
PPA commonly begins as a subtle disorder of language, progressing to a nearly total inability to speak, in its most severe stage. The type or pattern of the language deficit may differ from patient to patient. The initial language disturbance may be fluent aphasia (i.e., the person may have normal or even increased rate of word production) or non-fluent aphasia (speech becomes effortful and the person produces fewer words). A less common variety begins with impaired word-finding and progressive deterioration of naming and comprehension, with relatively preserved articulation.
As with aphasia that results from stroke or brain trauma, the manifestations of PPA depend on what parts of the left hemisphere are relatively more damaged at any given point in the illness. The person may or may not have difficulty understanding speech. Eventually, almost all patients become mute and unable to understand spoken or written language, even if their behavior seems otherwise normal.”
The person I met is in her early 60s, a chartered accountant who excelled in her career. Listening to her story made me realise again how little we know about the workings of the brain. This prompted me to listen to the podcasts of Dr. Lisa Feldman Barret Website <…> who questions just about everything we thought we knew about the different areas of the brain and the functionality of these different regions. Our experience of being-in-the-world is not simply a brain function located in a specific part of the brain, which when damaged, present a certain dementia syndrome.
And whilst the really clever people are trying to figure the brain out, ordinary people like this remarkable woman is trying to make sense of this strangest of phenomena. Losing words. Simple as that. Knowing what you want to say but not finding the words to say it. The frustration must be unbearable. Around the table are her two children, her partner and his two children. They listen patiently to her telling of her story to me. I know they have heard this story many times. Yet, not once does one of them interrupt her, or help her when she takes long to find a word. I can see them fiddling with a pen or looking away, trying their utmost. And they succeed. And I see how much this means to her that no one is edging her on or trying to hurry up the conversation.
I am in awe. This is what matters. Family. Connection. Patience. Love. Understanding. Holding space.

Rayne Stroebel MSc (Dementia Studies)
+27 82 455 5300 <> <>