PSP Patients: We can hear you…

View this post on Instagram

There are many other important aspects of life, including faith, purpose and all the complexities that come with a terminal illness like PSP, but family and friends remain central. It is surprisingly easy to lose sight of this, especially when communication becomes difficult or impossible.

Many people living with PSP are unable to communicate with those around them. I have not yet reached that stage, apart from the spells when I freeze, but I often hear people in PSP support groups describe how painful it is when their loved one can no longer respond or show recognition. Families sometimes feel as if the person they knew has disappeared simply because that person cannot communicate outwardly.

I have written about this before, but I am more conscious than ever that one day, perhaps sooner than I would like, I might be in that same situation. With that in mind, I want to share an experience that happened a few months ago which may help others.

I fell at the home of friends and immediately froze. I was on the ground, unable to move any part of my body. My friends were debating whether to call an ambulance or to call Hatzolah, a volunteer emergency response organization. I wanted to tell them not to call anyone because I knew I would eventually come out of it, but I could not communicate at all. I heard every single word they said.

This happens every time I freeze.

It might feel like a leap to conclude from this that people with late-stage PSP who cannot communicate are still hearing what happens around them, but I believe it is more than possible. It is probably incredibly frustrating for the patient and equally difficult for the caregiver or family. But this also means you can speak to them, read to them and keep talking, because there is a real chance they are listening.

The scientific research is important here. Many studies suggest that a large proportion of PSP patients, some reporting around 70 percent, develop dementia. PSP shares the tau protein pathology seen in Alzheimer’s, and many patients experience apathy. However, research indicates that comprehension often remains far more intact than people assume. A helpful summary of PSP stages can be found here:
https://pspawareness.com/blogs/psp-q-a/what-are-the-stages-for-psp-how-many?srsltid=AfmBOort7NXTkIweMrwKfvsHrln8BxAB5C1f8IcCyqeCUS5q3KK-HqBj

Another study can be found here:
https://pmc.ncbi.nlm.nih.gov/articles/PMC8351757/#s3
The researchers identified impairments in motor speech, phonological structure, semantic knowledge and syntactic knowledge in PSP and CBS patients, but not in auditory-verbal working memory. This suggests that the ability to take in what is being said can remain significantly more intact than the ability to express it. In this respect, PSP appears quite different from Alzheimer’s.

Whether this makes the emotional experience easier or harder for caregivers is difficult to judge. In many ways it increases the burden, because the relationship can become almost entirely one way. I personally dread that possibility. But it remains important for families, including grandchildren and others close to the patient, to understand that hearing and understanding may still be present.

It is not that the patient does not care or does not feel love. Most likely, they are deeply frustrated that they cannot show it. Acknowledging that they might be hearing you, even if they cannot respond, may bring comfort to both sides.

My own family now talks to me when I freeze, and my physiotherapist did the same when I froze during a session. She encouraged me to stay calm and take deep breaths, and it genuinely helped. Knowing that someone is speaking to you and has not given up on you can make a real difference.