Strike 2 – A Terrifying Fall, My PSP Wake-Up, and Why I’ll Keep Writing

Last night, I slid down a wall like a downhill skier out of control – my second recent strike with PSP, and my worst fall yet. For a split second, I knew I was in real trouble. As always with me, it is time to act and not withdraw and I am calling on your support.

I had gone using a walker to the bathroom in the night. Feeling unbalanced (I fall backwards as per PSP), I leaned against the door, which was open against the wall, to take a moment, instead of sitting down or holding onto the grab-handles. My bare feet gave way, and I literally slid down the wall until my upper back – thankfully, not my head – smacked the floor, and the front of my lower leg hit something – I think the toilet. I am in quite some pain and have a welt that doesn’t look pretty on my leg, but I am extremely, extremely lucky! The door however is not quite so lucky! Still – as I am 6 foot 5 inches (194ish) – it was a long way down, and I had time to think “Oh no (paraphrased)”, plus I must’ve instinctively shielded myself somehow with my arms – and my padding helped of course.

Doubly ironic, earlier today, I was reading about the one truly famous celebrity who had PSP – Dudley Moore. Diagnosed in 1998 after two years of trying to establish his diagnosis. I watched a documentary on him in 1999 when he publicly disclosed his diagnosis. It was interesting but afterwards I checked. He sadly passed away in 2002 due to pneumonia as a complication of PSP, having gone on a feeding tube in 2001.

The rapidity of his decline is truly shocking, as I can see is mine, but ever practical I have two medical choices and three blogging/openness choices.

Medical Choices – Ignore the warnings or act? Act of course – I’m making changes to boost safety and slash accident risks. Prior to the fall, I’d already booked a chat today with a friend who’s a swallow expert to tackle my choking risks – she very kindly reached out to me after a blog on choking and I really thank her – she pushed me to take action and I am grateful. She confirmed on a chat last night the research I’ve been doing and remembering now many previous visits to specialists in Swallowing: There are really three key actions.

1. Revamp What I Eat. My current diet is loaded with the worst culprits for choking: highly textured foods from a Mediterranean style diet – salads, nuts, whole wheat, chunky fruits like grapes, sticky ones like dates, and thin liquids like water and coffee. It’s great for health, but poison when you’re at severe risk of choking. So, painful as it is and especially as I have already lost smell and much taste and therefore texture is so important, we’re switching to more puréed, softer, thicker foods. Food’s important to me – the crunch of a grape, the taste of French bread – but avoiding a feeding tube trumps it all. Today is Day 1.
2. Revamp How I Eat. I’ve always stuffed food too fast. Now? Proper chewing – especially on meals with non-puréed soft stuff (which I will sneak in 😊 e.g when out or on Shabbat). No multitasking (talking, scrolling) – just slow, focused bites. Fellow PSP warriors: What’s your go-to slow-eating hack? Share please! Staying alive is FAR more important than French bread.
3. Build Strength. I have an EMST device but barely use it – today, that ends! Boosting my cough strength (plus the LifeVac we ordered and first-aid training for the family) will arm me better against choking to expel whatever it is. Who’s got EMST tips? Please reply. (Resources: Check PSPA.org for EMST guides.)

For falls? Beyond choking, this one needs a complete safety overhaul: More deliberate steps, sitting at the first wobble, gripping those handles a friend installed, and safer moves overall.

Every step and swallow needs to be deliberate now – and I’m calling on you who know me to help: Not by being class monitors or lecturers, but by subtly pointing out my errors and sticking with me, even if I bark in response. Once the renovation wraps up (ASAP, I hope) – with a fully accessible bathroom and bedroom downstairs – I’m moving in with my wife.

I want to avoid Strike 3.

Basically, the time is now to take much greater care. It is not easy because I love food and have always acted too quickly and been too impatient, but I have already made so much change and invested in fighting; this now feels like my last option if I want to do all I can to avoid Dudley Moore’s trajectory – even though these changes still may not avoid the inevitable, they are all I can do.

WRITING: To sugarcoat, to stop, or to write on – smiling and puréeing? I have chosen option 3, to the disappointment of some 

To sugarcoat PSP is a kick in the teeth for the hundreds, possibly more, of PSP/PD/Others patients and caregivers living with it – and the same goes if I vanish offline abruptly. I am no Dudley Moore and have no mass appeal, but many people have contacted me to say how I am shining a light and giving some comfort to those struggling. I feel I must honor this.

Secondly and possibly more important selfishly, I love to write, and the act of writing helps me process my plan (these ideas above were crystallized as I wrote this) and stay accountable to see it through.

Thirdly – bizarrely and genuinely, I am full of hope. Not hope of a letter from King Charles, but hopeful for simple joys like my daughter’s wedding, chess games with friends, next week’s Grand Prix, time learning Jewish Texts, walks with my wife and dog… PSP hasn’t stolen me yet by any stretch.

I would be lying if I said I wasn’t scared right now, but I am also content, satisfied, and happy, and I want to keep that message going.

For sure, reading these blogs is not easy for the people that love me, and for sure they must show a rapid decline – this was not what was planned, but I can’t change that by not writing – in fact, it probably would hasten the decline as my most cherished daily activity of writing would vanish.

So, I am carrying on, on both fronts, and would actively ask for your support now in this new proactive phase if you can. I can feel PSP more than ever in my slowness, my eyes, my balance, but I will fight on for as long as I can and annoy you in the process.

Your help? Selfishly, knowing you are reading this (someone is anyway) will help me and  fuel my next post – and maybe my next careful step. Here’s to fighting on, one purée at a time. 💪 Thanks for reading – if you made it this far, I’d ask you to drop a smiley below so I know I’m not shouting into the void. 😊