A Big, Big Win After a Day of Feeling I’d Lost (and Ambulance and ER)

Today was possibly the strangest WIN of my life, but I’ll take it. It stands as absolute proof that everything is relative. It was a crazy day with a great ending… let me explain.

The last few days have been terrible emotionally and physically. I’ve been convinced that I’ve taken a massive turn for the worse with my PSP, fearing that the accelerated timetable I’ve dreaded had finally overtaken me, and my writing has reflected that. But as it turns out, that might not be true.

This morning, while eating breakfast, I realized I couldn’t chew or use the right side of my mouth. Coupled with this, my eyes have been struggling terribly over the last few days, causing me extreme frustration and fear. I wrote about it last night in fact.

I spoke with a local doctor and whilst on the zoom with my therapist, she immediately ran through the standard stroke checks: asking me to hold my arms up to see if one falls, and smiling to check for facial drooping. I showed reactions consistent to the classic signs of a stroke and we called paramedics immediately. They arrived within five minutes.

The paramedics also suspected a stroke and rushed me to the hospital.  One of the three paramedics is a local volunteer and a friend and together we insisted they take me to the facility where my neurologist practices. Half an hour later we arrived, and five minutes after that, I was in a CT scan. Thankfully, the scan was negative.

My neurologists (I informed their secretary on the way in the ambulance) came to the ER and with the senior ER neurologist then performed an interesting diagnostic test on my tongue. With sugar, it revealed I had almost no taste on the right side, but relatively normal taste (for me) on the left. They all concurred: it was Bell’s palsy. While not exactly pleasant, Bell’s palsy is not a stroke. It is treatable with steroids, which I’ve already started. The symptoms don’t appear too severe, though eating is currently difficult. After five hours in the ER and a battery of tests, I was released.

Needless to say, it was an incredibly stressful day, but it held two major upsides.

The steep decline I’ve felt over the last few days, which I attributed to the PSP “gaining” on me, was likely just the onset of the Bell’s palsy (an inflammation of the facial nerve unrelated to PSP). By logic, this means the PSP isn’t necessarily advancing at the terrifying speed I thought it was. Once this infection comes under control, I have a renewed sense of hope that my condition is advancing more slowly and  not moving quite as fast as I feared, although it doesn’t change the fundamentals.

So, after a high-speed ambulance ride, a CT scan, and a terrifying stint in the ER, I actually walked away with a more positive outlook on my PSP than I had this morning. It is strange indeed that this counts as good news.

This is much more than a silver lining. It isn’t a cure, and it doesn’t change the fundamentals, but relatively speaking, it is a massive win. And the droop is truly not severe.

The second win of the day was the hospital staff. The ER team seemed familiar with PSP and understood its implications, which I hear is rare. It was comforting to be admitted to my specific hospital where my neurologists were on-site; they even visited the ER while testing was underway. I am deeply grateful to the health system in Israel for this amazing service.

I am completely exhausted beyond words but have treated myself to some vanilla ice cream.

I probably won’t sleep tonight – the steroids will see to that – but I have gone from the lowest low in the ambulance to feeling much lighter than I did at the start of the day. I can’t eat or drink properly because half my mouth is paralyzed, but it will hopefully heal and compared to the alternative, this feels like the equivalent of a common cold.

Never a dull moment! I wish there were!