Yesterday was one for the books – a day so surreal it felt like a dark British comedy. If you live with PSP (Progressive Supranuclear Palsy), you’ll know that absurdity is part of the package. I’m not diving deep into every issue today (each deserves its own post), but I want to capture the sheer madness of the last 24 hours because it sums up life with this condition perfectly.
The End: Midnight Surprise
Let’s start at the end: midnight. Now. I woke up after crashing from the chaos of the day, only to discover… my toenail had come off. Yes, really. It had been damaged during a fall I wrote about last week, but I barely noticed at the time. Apparently, it chose this moment to make its exit. That was the final push to write this blog.
Part 1: Moving House (Sort Of)
The day began with me and the dog relocating to my mother’s home for a couple of days. Renovations at my place are in full swing – ramps and accessibility features being installed, and a desperately needed downstairs disabled bathroom and bedroom – so temporary exile was necessary.
Part 2: The Neurologist Appointment
Next stop: my regular check-in with my neurologist. My sister drove, and the journey was full of dark humor (the kind I won’t even attempt to write here). After a failed attempt to park in a space that was clearly impossible (I had told her so), we finally made it inside, having found a place six floors lower down under the ground.
Since choking has become a big issue for me, I’ve been extra cautious. Before the appointment, we grabbed smoothies – fully blended, but with straws (bad idea). I sipped slowly, but as we waited, I couldn’t stop coughing. No panic, but definitely uncomfortable. I walked into the appointment coughing and spluttering, and my sister kindly went to fetch me hot tea with honey.
The verdict? My neurologist suggested I seriously consider a PEG feeding tube. For anyone unfamiliar, PEG (Percutaneous Endoscopic Gastrostomy) is a way to deliver nutrition directly to the stomach when swallowing becomes risky. In the case of PSP, getting water on the lung from taking liquid down the wrong hole is probably danger number one, as it can lead to pneumonia. In the last two weeks, choking has suddenly become a thing for me. A PEG is not a decision you make lightly, and I won’t make it without serious discussion with experts, the PSP communities I am part of, and my wife and family. But if you can’t manage something as soft as a smoothie, it’s a sign to start thinking about it seriously.
Part 3: Lunch Victory
After that bombshell, we had two hours to kill (probably the wrong phrase!). We went to a café, and for the first time since changing my diet, I ate out. Scrambled eggs, soft bread soaked in tahini, and coffee. I ate slowly, didn’t talk while chewing, and guess what? No choking. Big win, big relief. It put the tube discussion on the back burner for a bit. Liquids seem far more problematic than soft solids.
And in an odd calm moment, I went shopping (in my speeding electric travel wheelchair) for a packet of toy cars for my nephew who is three and one of seven amazing nieces and nephews (six of whom are now expecting a gift).
Part 4: The Alternative Therapy Shock
Here’s where things got truly bizarre. Someone in the PD/PSP community recommended an alternative therapy – someone I trust and highly professional – what she understood to be a non-invasive, gentle treatment with a minimum six-week waiting list. I didn’t research it, pushed it to the back of my mind, and then… suddenly a cancellation popped up. I went thinking ‘what do I have to lose’.
It was the most terrifying experience of my life. I told the practitioner that. It wasn’t gentle. It wasn’t non-invasive. It was intense and disturbing. I left shell-shocked and spent the ride home Googling and speaking to my regular PT about what I’d just gone through, only to find it’s widely dismissed by the medical community. If I had known, I wouldn’t have gone, but I am fine this morning and none the worse and none the better.
Not researching beforehand was a major lesson learned. Desperation can and does lead to impulsive decisions. I benefit most weeks from highly professional PT-administered fascia manipulation and acupuncture and believe in holistic medicine, but this? Never again without research. Be careful out there. Once I’ve thoroughly researched the treatment from both angles I may revisit the topic.
The Absurdity of It All
Despite everything, my sister and I had a great day. We laughed, bought a gift for my nephew, and had funny chats with my wife and daughter (explaining the crazy session, her telling me she had bought a new bag and pencil case after the fiasco the other day, and my wife sharing a photo of my daughter using my wheelchair and walker as a renovation prop which is simply hilarious and will be making its way to friends and family with her permission). Finally, after a long deep breath and a sipped cup of tea, dinner with my mum and sister was soft, safe, and lovely. A very calm end…until the nail…
The truly absurd thing is that for many PSP patients—with such a rapid-fire succession of changes and the lack of definitive treatment—this level of chaos is normal. For many, this would be the worst day imaginable, but it’s amazing how the body and mind adapt with faith. I hope today is quieter, but I’ll do my best to create moments of genuine laughter and find the funny amidst the awfulness of PSP.
So, was it horror or comedy? We voted comedy… but fairly dark. What do you think?
