Food Glorious Food – I thought my career was action-packed and fast-moving, but the last few months of my personal life have been a rollercoaster that has simply left it miles behind.
I am on a journey which has such frequent turns and changes that sometimes incredibly significant changes – in a normal life – seem almost inconsequential. Food is one of those.
It’s not as obvious a big change as the wheelchair, the falling, or the difficulty with my eyes, but to be honest, it might be even more important. My number one enemy has become choking. It is possibly the chief weapon of PSP and leads to pneumonia and other complications.
In the last 48 hours, we’ve made massive changes, and there have been some initial and very interesting side benefits I hadn’t counted on.
I love food – a little less since 2020 came and claimed my sense of smell and damaged my taste – but I still love it. I think most of us do. Some love fine dining, some comfort food, some grazing, some chocolate, and some ice cream. Going to a restaurant with your loved one, sharing a meal with friends, or the festive meals we have every Sabbath and Jewish Holiday with family and the kids… we all get the point. I have also had some of my funniest moments in life as a kosher traveller with food – from the curry I ate in a Paris hotel with a shoehorn, to the burger I ironed and heated in a hotel trouser press.
The change
I was on what some people called a strange diet for the last few years – and a painfully annoying one for my wife, family, and friends who entertained my weirdness. It was inspired by my neurologist, who recommended a Mediterranean diet combined with cutting out chemicals, excess salt, and sugar. With an expensive visit to a Parkinson’s-experienced dietician, and a fair bit of adaptation by me, it became: no dairy except goat yoghurt, no red meat, no eggs, no chemicals (no colas, etc.), low salt, low sugar, and whole grain (especially spelt) carbs. Lots of vegetables, almonds, fruit, and salads with grilled chicken and fish.
Why this unique combination? I’m not sure it was the world’s best diet, but I thought it was positive – and it worked for me.
Nil Points
It was, however, possibly the worst diet from the perspective of choking. And choking – side by side with falling – is currently my single biggest risk factor for a rapid decline in PSP. It took a week of four choking incidents, and finally a very bad one, to make me realise it.
In discussing it with a friend who is a swallow expert, we debated what to do. Me being one for immediate action, I opted for immediate change. This Friday and Saturday, we put it into action – and there were some interesting results.
Firstly, almost no choking! I had one minor incident, which passed quickly.
Secondly, some of my favourites are back, albeit in pulped form. Chopped liver (liver pâté) was literally my favourite food, and now mixed with tahini, it’s smooth and not too thin or sticky. Red meat and potato in the form of shepherd’s pie is back, as is the humble soft scrambled egg. And fish pie with milk-based mashed potato. I thought these foods were gone for me – and they made a very welcome return.
Together with smoothies (which I love) and good-consistency soups, we’ve moved to a “sludge” diet with as little texture as possible. I definitely miss crust, grilled/BBQ fish and chicken – but as they say, bygones. They’re history.
I’ve also learnt some things I didn’t realise – water is not so good for me. I drink it too fast and the muscles can’t process it and it can and does go down the wrong way. Soda/Seltzer is better but I still cough and we are in the process of getting thickener products. Hot drinks are better because I sip them.
We are adapting and who knows how it will go from here, but there is a time to plan and there is a time to act. With PSP – as in change – sometimes you have to be ruthless and make major decisions, even when they carry huge consequences.
How it impacts my stomach and overall health remains to be seen. It was an emergency – and still is – but it has definitely had its upsides.
I will take every day as a very serious focus on trying my best to avoid choking and falling. I can’t stop the disease, but these variables I can try to reduce. I’m praying that action has a positive effect.
I’m not patenting or publicising this diet – it’s not by any stretch of the imagination ideal except for very specific circumstances and it may change. It’s far too high in many things. But with advancing PSP, choking simply outranks these considerations in my view… for now. I am trying to avoid choking and being forced to move to a feeding tube. That I can do so with chopped liver pâté is a side benefit I appreciate.
