Fear, Reality and PSP: Answering Two Questions as Honestly as I Can

I’ve recently implemented some feedback software on the website because although this started as a personal blog designed for me to express my feelings and communicate them to my loved ones without having to speak to each person individually, it has gradually become something bigger that seems to help other patients, carers, friends and family members. If sharing my experience helps somebody else navigate a difficult situation, then I’m very happy to answer questions, whether publicly or privately.

A while ago I also implemented an Audio feature at the request of a couple of people so people can listen to the blog rather than read it. Accessibility matters, and I’m pleased to see it being used almost 1,000 times each month. That figure blows my mind.

The new feedback tool has already generated a couple of questions and I’d like to answer both. This is partly atonement on my part for losing the history of a few questions submitted through an unfortunately badly deployed first survey, for which I’m sorry. It now seems to be working fine. The fault is all mine.

The first feedback came anonymously from the child of a PSP patient:

“My Dad used to be very gregarious but is now trapped inside himself and can’t express his thoughts. I hope this gives me some idea of what he might be experiencing.”

I want to comment on the feedback honestly because I think anything else would be unfair. Although designed largely as a comment, I do want to address the second part, which is a question of mine as well.

The truth is that I don’t know what your father is experiencing, and I think anybody who claimed otherwise would be overreaching. Every PSP patient seems to experience the disease differently and follows their own path. These do not appear to be neat symptoms, neatly labelled and with instructions given in advance, which would be very helpful but would not be PSP.

What makes the question difficult for me to answer is that it touches on my own biggest fear. My cognition has not been significantly affected. I can still think, write, communicate and express myself (I’m ay 6.5 years since first symtoms). From what you’ve written, it sounds as though your father’s ability to express himself has been affected, and that is something I have not yet experienced to the same extent.

At the same time, I don’t think the answer is simply “I don’t know” and leave it there. Over the time I have been writing, I have heard from a number of carers whose loved ones have become unable, or largely unable, to communicate. Some of these patients are able read the blog themselves, some have the blog read to them by their carers and others listen through the audio version. On more than one occasion, a carer has told me that what I write resonates with their loved one’s experience and feelings, even when those feelings are no longer easy for them to express directly. That’s not proof of anything, but it is enough to make me think there may be more common ground between PSP patients than we sometimes realise.

What I do know as fact is that your father has a child who cares enough to ask the question. The fact that you’re reading this blog, trying to understand him better and looking for clues about what he may be experiencing tells me that he is surrounded by love, warmth and support. Disease affects each of us differently, but being cared for and being loved is something we all understand. You know your father, and that gives you the ability to adapt what I’m saying to his circumstances perhaps more than you realise.

I can also offer one small piece of my own experience. There have been periods when I have been unable to communicate despite being fully conscious of what is happening around me. Some of those episodes have lasted many minutes. Early on I found those moments deeply frustrating, but over time I’ve learned to find a degree of calmness in them. There are certainly moments of frustration and anger, and I’ve heard other patients describe the same thing, but most of the time I find that I’m calm, patient and surprisingly relaxed. I can’t promise that is what your father is experiencing, but I hope it is.

Taking all of that together, I hope there is enough similarity between our experiences that some of what I write resonates with his. But I can’t know that for certain, and I wouldn’t pretend otherwise.

If what has happened to your father eventually happens to me, I hope I face it with the same courage and resilience that I hope he is showing today. PSP is an extraordinarily difficult disease, and anyone living with it deserves enormous respect.

The second question was:

“What are some things you’ve worried about that either haven’t happened, or weren’t actually as bad as you feared?”

I think that this is really two questions.

The first is about things I’ve worried about that haven’t happened.

The second is about things that did happen but turned out not to be as bad as I feared.

For the first question, my answer is straightforward. The thing I worry about most, selfishly, is losing my cognitive ability. Cognitive impairment is common in PSP, particularly involving executive function, although its severity and form vary considerably between patients. I know enough to know that significant cognitive decline is a possibility.

I’m careful to say it hasn’t happened yet rather than saying it won’t happen. PSP unfolds differently for every patient and I’m the last person who would assume that a symptom will simply pass me by. I hope I remain among those who avoid significant cognitive decline because retaining my ability to think, reason and write matters enormously to me.

Some people have suggested that maintaining full awareness throughout the later stages of the disease may not necessarily be a blessing. I fully understand the argument, but on balance, I personally don’t share it. I want to remain myself for as long as possible. I want to keep writing for as long as possible.

As for the second question, my answer is unexpectedly optimistic.

Almost everything else has been less frightening in reality than it was in anticipation.

That doesn’t mean PSP is easy. It certainly isn’t. It doesn’t mean the symptoms are pleasant. They aren’t. What it means is that human beings adapt remarkably well. Every new symptom arrives with uncertainty. You imagine the worst, you fear the worst, and then gradually you learn to live with a new reality.

Looking back, most physical symptoms and most emotional challenges have been more manageable than I expected they would be. Then again I’m on 40+ pills a day, approximately half of which are for pain and anxiety, so that simply offers a different kind of measure of the impact PSP has.

The major exception was and is nerve pain. I wasn’t expecting it at all, but it was every bit as severe as I could possibly have feared and, at times, worse. Thankfully it is now being managed effectively and is in a far better place than it once was.

Even recent changes, such as bringing a live-in carer into the house, caused me far more anxiety beforehand than they ultimately deserved. I worried endlessly about it and, in reality, it has integrated into family life far more smoothly than I expected.

If I’m completely honest, the thing I worry about most isn’t actually what PSP will do to me. It’s what PSP will do to the people around me. I worry about the impact on my family, both now and in the future. I can’t predict how that story unfolds, but they continue to show extraordinary strength and resilience, and I take enormous comfort from that.

Perhaps that’s the real answer to the question. The thing I fear most hasn’t happened. Most of the things that have happened have been more manageable than I expected. Not all of them, but most of them. The fear usually arrives long before the reality, and so far the reality has generally been kinder than the fear. For that, I’m grateful.

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Comments, thoughts, ideas or feedback? Please feel free to email me at benlazpsp@gmail.com or use the feedback form. I introduced it because I genuinely want to hear what you think I could or should be writing about.