There is an old saying that prevention is better than cure. In the case of PSP which lacks a cure I guess it becomes even more important.
It is also astonishingly boring.
No one gets excited about not falling over. No one celebrates another successful day of not choking. There are no medals for saying no to your favourite food or choosing the safe option for the thousandth time.
But these days, prevention has become one of my full-time job. As I mention at the end I very nearly blew it.
It has been a long time since I wrote about food, despite the fact that I love it. Thankfully, the precautions I have taken have largely kept choking at bay. I almost hesitate to write those words, in case I tempt fate.
For someone living with Progressive Supranuclear Palsy (PSP), choking is not simply an inconvenience. It is one of the greatest dangers we face. Food or drink entering the lungs can lead to aspiration pneumonia, which remains one of the commonest causes of death in PSP.
Some time ago, my neurologist recommended that I have a PEG feeding tube because swallowing had become such a significant feature of my illness.
I chose, at least for now, to take a different path.
Whether that decision ultimately proves right or wrong, only time will tell. I simply could not bear the thought of sitting at the family table while my meal arrived through a tube. Eating has always been about far more than nutrition. It is conversation, family, laughter and shared experience. I was simply not yet ready to let that go.
So instead of changing how I receive food, I completely changed what I eat.
My diet now bears almost no resemblance to the Mediterranean diet I once enjoyed. Gone are salads, nuts, steak, chicken, crunchy vegetables and most fresh fruit. In their place are mashed foods, puréed foods, soft fish, mince and anything with a single, predictable consistency.
Texture has become more important than taste.
That sentence still amazes me.
One lesson particularly surprised me. Watermelon, one of my favourite fruits, is regarded by many swallowing specialists as particularly risky because it contains both liquid and solid at the same time. Our swallowing muscles cope best with one consistency. Ask them to manage two simultaneously and things can go wrong remarkably quickly.
Water is another casualty.
So are drinking straws.
I drink water too quickly, especially through a straw. I tried the recommended thickener. Let’s just say we did not become friends. Instead I mostly drink hot drinks and fizzy drinks, both of which naturally slow me down and, for me, work much better.
Everyone’s swallowing difficulties are different. This is simply what has proved safest for me. I am not giving medical advice, merely describing the system that has allowed me to keep eating as safely as I can.
There is, however, one luxury I still allow myself.
Vanilla ice cream.
Yes, I know there is debate amongst swallowing specialists. I also know that life without vanilla ice cream would be a rather bleak existence. As long as it remains one smooth consistency, it is my little act of culinary rebellion.
Everybody deserves at least one guilty pleasure.
The interesting thing about prevention is that it rarely feels dramatic.
It feels like saying no.
No to foods I loved.
No to unnecessary risks.
No to pretending my body still follows the same rules it once did.
Food is only one half of the equation.
The other is falling.
Years ago I fell regularly. In fact, I became so experienced that my trainer and I actually practised how to fall properly. Looking back, that is a rather absurd sentence to write.
Eventually I realised I was solving the wrong problem.
Instead of becoming better at falling, perhaps I should simply stop falling.
So I stopped walking.
That sentence is much harder to write than it is to read.
Technically, with one or usually two people supporting me, I can still manage very short distances. They are painfully slow and extraordinarily precarious. I no longer use my U-Step walker because I eventually realised I was just as capable of toppling over with it as without it.
So I stay in my wheelchair.
I dislike it enormously.
It weakens my legs. It limits my independence. It contributes to weight gain. Every day it reminds me how much life has changed.
But it does something infinitely more important.
It keeps me alive.
The only place I routinely stand is in our fully adapted bathroom, surrounded by grab rails. They may be the least attractive feature in our home, but they are probably among the most valuable. Even there, one moment of carelessness, such as forgetting to lock the wheelchair brakes, could have disastrous consequences.
The frustrating thing about prevention is that you never see what did not happen.
You never know which fall you avoided, which choking episode never occurred or which infection never developed. Success leaves no evidence, and perhaps that is why it is so easy to become complacent. When nothing bad happens, we naturally begin to wonder whether all the effort is really necessary.
Last Friday night reminded me that it is.
If you know me, you know I have a weakness.
Fresh challah.
Warm, soft, slightly sweet challah is, in my entirely unbiased opinion, one of the greatest creations in human history. Every Friday night and every Shabbat lunch it sits on the table quietly conducting psychological warfare against me.
Usually I win.
Last week I didn’t.
When nobody was looking, I quietly took a slice and ate it far too quickly. Within seconds I was coughing and retching, and for a few frightening moments I realised just how close I had come to undoing months of careful discipline. It wasn’t worth it. Not even remotely.
That single slice reminded me of something I already knew but, apparently, needed to learn again. Rules exist for the moments when temptation is stronger than common sense. They are there to protect us from ourselves.
PSP has taken many things from me. It changed my career, my mobility, my plans and, inevitably, my life expectancy. It has also changed something much smaller, yet strangely emotional: my relationship with food. I miss travelling, I miss running and I miss sitting down to a meal without analysing every mouthful like a swallowing engineer. But I would rather miss challah than lose the ability to eat altogether.
Everyone living with PSP makes their own decisions. Some decide that a feeding tube is the right choice. Some accept more risk in order to enjoy a wider variety of foods. Some continue walking for longer than I have chosen to. Those are deeply personal decisions, and they are not mine to judge. We all weigh quality of life and risk differently, and there is no single answer that is right for everyone.
For me, however, two principles have become the foundation of almost everything I do.
Don’t fall.
Don’t choke.
They are hardly inspiring slogans. They will never make exciting headlines and they certainly won’t go viral. Yet those two rather ordinary rules quietly do the one thing I care about most: they keep me in the game. Sometimes the greatest victories are not the spectacular ones, but the disasters that never happened because you chose to be careful.
So as another Friday night approaches, and that beautiful challah sits innocently on the table pretending not to notice me, this blog is really just a note to myself.
Ben…
Leave the bread alone.
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