What Does Success Look Like with PSP? This Weekend!

I don’t have any groundbreaking announcements or big news. I certainly didn’t have a PSP-free Shabbat. In fact, physically, I had a pretty hard time. But I had a really lovely weekend with my family. We laughed, ate, talked, and enjoyed ourselves despite the ever-present cloud of PSP.

There were difficulties. On Friday night, just as I was about to cut the bread, I powered down. I simply couldn’t move or speak. My body was completely rigid. At first, I grunted a couple of times to signal that I wanted to stay at the table, but eventually I went to bed and rested for 10–20 minutes. I felt much better afterwards and rejoined the family for dinner. It was lovely.

The night was hard. I suffered terrible constipation, something I don’t particularly like talking about. It was the worst I have ever experienced, and it genuinely worried me. It continued throughout Shabbat despite medication, prune juice, and everything else I tried, but thankfully, it has now cleared. It prevented me from going to synagogue and was far from pleasant. Some people may not like me talking about constipation, but it is a very real and often overlooked problem for people living with PSP. Pretending otherwise doesn’t make it disappear.

But these are the sorts of hurdles I have to expect at this stage of PSP. I need to learn to see them as par for the course rather than allowing them to define the day. And this weekend, I think I managed that.

We had a wonderful family lunch. I spent precious time with all my kids, my wife, my in-laws, and my mum. And despite everything, PSP barely featured in our time together.

Of course, it was there. It was there in my body, in the symptoms, and in the things I couldn’t do. But it didn’t take over our family time. It didn’t dominate the conversation or steal the enjoyment.

And perhaps that is what success looks like for me now. Not a weekend without PSP, but a weekend in which PSP didn’t get to dictate everything.

I will take that as a major success. Anger and apathy didn’t appear. Laughter did.