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I received an anonymous piece of feedback through the blog today that gave me something I badly needed.
The writer is the daughter of a man who had PSP. She said:
“Please be reassured yourself that he suffered no loss of cognitive function right to the end, even though he was reduced to one-word answers.”
I read that several times.
Now, before anybody accuses me of suddenly abandoning all standards of evidence, I know exactly what this is.
It is not a clinical trial. It is not peer reviewed. It is not statistically significant.
It is a sample size of one. But what a sample size of one.
One of the things that frightens me most about PSP is not simply losing the ability to speak. My speech is already changing, and I know perfectly well that communication may become much harder.
What frightens me more is the question underneath it:
If I can no longer tell people what I am thinking, will I still be thinking it?
That is why this message hit me so hard.
Her father reached the point where he could answer only with one word, but she believes his cognition remained intact right to the end.
His communication had almost disappeared. He had not. For me, that distinction is enormous.
It does not mean the same thing will happen to me. PSP is a horrible disease and it does not behave identically in everyone. Some people experience significant cognitive change, and some families have had a much harder experience of this aspect of the disease.
I would do a disservice to those patients and caregivers who lived through that terrible experience if I pretended otherwise, and I send them all my positive thoughts and the hope that their journey through this horrible disease can be as easy as is humanly possible.
If cognitive decline becomes part of my journey, I will have to deal with that reality in my own way when it comes.
But today I was given another possible future.
A future in which my voice may become very small, but I may still be completely there behind it. That gives me real hope.
I am also very aware that there are no free lunches with PSP.
Hope does not mean sitting back and assuming everything is somehow going to be fine. I am working as hard as I possibly can on every part of this disease where I think I might still be able to make a difference.
Botox for my eyes. Doing everything I can to avoid choking. Trying desperately not to fall. Learning how to sleep better. Exercising. Preparing properly for what may come next. The list goes on for a very long time.
I think of them as countermeasures. None of them cures PSP. None of them guarantees anything. I know that perfectly well.
But if there is something sensible I can do that might preserve a little more function, reduce a risk or buy a little more quality time, I am going to do it.
There are no free lunches.
Unfortunately, PSP does not appear to offer an easy route through any of this. So this message does not make me complacent. Quite the opposite. It gives all that effort a little more hope behind it.
The lovely irony is that the person who wrote to me was thanking me. She said that reading how I describe PSP helped her understand what her father might have been experiencing when he could no longer explain it himself.
But she should know that the exchange went very much both ways. In fact, I think she gave me more than I gave her. She gave me exactly the kind of hope I need.
Not fantasy. Not certainty. Certainly not a guarantee.
Just a real possibility.
Sometimes that is enough.
So thank you to the anonymous writer, and to everyone who sends me feedback, whether it is encouraging, painful, reassuring or difficult.
Please keep doing it.
Science may quite reasonably shrug at a sample size of one.
Today, I am not shrugging at all.
Faith, hope and positivity are three of the most important tools I have. This anonymous reader should know that, in a few sentences, she has strengthened all three.
That is quite a gift from someone whose name I don’t even know.
