PSP: Frightened, but Still Flying

Just a few months ago, I wondered how it was possible that PSP could have such a short life expectancy.

How could I go from where I was to where I might be in such a short space of time? I genuinely didn’t understand.

I am starting to. And it is terrifying.

Progressive Supranuclear Palsy (PSP) seems to interfere with the wiring of my body and brain almost at will.

First, it ended my career and stopped me driving. That was one thing. I was 49.

Then it took my mobility, stopped me walking and forced me to move downstairs. That was another. I was 50.

Now, at 51, the problems seem to be multiplying, overlapping and increasingly feeding into one another.

Swallowing. Bowels. Vision. Sleep. Pain. Movement. Even my emotional responses.

It feels as though the signals travelling from my brain to different parts of my body are becoming increasingly unreliable.

And I have started thinking about an aircraft experiencing serious technical difficulties.

I used to love watching Air Crash Investigation on National Geographic. I have probably flown more than a thousand times during my career, including two safe emergency landings, so aviation has always fascinated me.

What struck me about those programmes was how rarely a major disaster involved just one thing going wrong.

A hydraulic failure affects one system. That puts pressure on another. The pilots compensate, but that can introduce new complications. Warning lights start appearing. Problems that might have been manageable individually become much harder to control together.

That is increasingly how PSP feels to me.

Take swallowing.

To reduce the risk of choking, I have had to change my diet dramatically, moving away from the Mediterranean food I enjoyed towards softer foods, smoothies and modified textures. But changing what and how I eat can affect my weight, digestion, bowel function and even my mood.

Then there is insomnia. A terrible night’s sleep makes almost everything harder the following day.

Or constipation, which has dominated my life recently. Night after night, I have spent hours trying to get my bowels to work properly, exhausting myself physically and mentally in the process.

One problem leads to another. And another.

Then come the medications.

I take more than 40 pills or pill pieces a day, treating PSP symptoms and the complications that come with them. Have you ever read all those medication warning leaflets? They are enough to frighten anyone.

I believe I need the medicines I take, but that doesn’t mean they come without risks or side effects. If I have terrible nerve pain, I need to treat it. Opioid painkillers, for example, can worsen constipation. Yet when the pain becomes unbearable, leaving it untreated is hardly an attractive option either.

Treating one problem can sometimes make another more difficult. And all the while, the underlying disease continues.

I have this terrible feeling that things are starting to spiral.

I am noticeably slower than I was even a few months ago.

Not cognitively, thank G-d. I remain enormously grateful that my thinking and understanding are largely intact.

But physically, the difference is frightening. And yet, when I read about the experiences of others living with PSP, I realise that there may still be far more difficult stages ahead.

Turning over in bed, even in my new hospital bed at home, has become a major undertaking. Getting out of bed or transferring from a chair, even with help, is laborious. Movements that once required no thought now demand concentration, effort and assistance.

And what frightens me most is the possibility that this is the beginning of another stage.

I cannot pretend that I am comfortable with that.

So how do I deal with it mentally, emotionally and physically?

I return to the cockpit.

Imagine being a pilot with an aircraft experiencing increasingly serious problems, knowing that some of the systems cannot be repaired and that further difficulties may lie ahead.

What do you do?

You don’t simply give up.

There are passengers on board. There are people on the ground whose lives matter too. There are loved ones waiting for you. There are responsibilities, decisions and things you can still control.

You do everything possible to keep the aircraft flying safely.

That is how I have to approach PSP.

I need to keep my body as strong and flexible as I can through yoga and exercise. Reduce the risks of falling and choking wherever possible. Manage symptoms as they arise, while recognising that their treatments can sometimes create additional difficulties.

I need to rest, conserve energy and keep my battery as charged as possible.

I need to exercise my brain, remain determined, make sensible preparations for my family’s future and continue adapting as my capabilities change.

And I need to remember something I have written about repeatedly but still struggle to practise consistently.

Slow down. Breathe deeply. Stay calm. Don’t panic.

These things do not stop PSP. But they can make a remarkable difference to how I cope with it.

Above all, I need to continue praying, remain grateful for the wonderful life I have had, and look forward to whatever good experiences are still ahead.

Because I still want those experiences. Very much.

There is one other thing I mustn’t forget.

Humour.

Admittedly, mine is sometimes of the gallows variety.

I am not talking about insensitive jokes, and I am certainly not issuing an open invitation for people to laugh at me. But there is something profoundly absurd about this whole situation, and sometimes I simply have to laugh.

I have also learned that people often take their cues from me. If I am frightened, everyone around me can feel the tension. But a smile, a stupid joke or a shared laugh can change the atmosphere almost immediately.

It doesn’t solve anything medically. But it can make an otherwise unbearable moment more bearable.

Perhaps it is my British sense of humour.

As I write this, I am reminded of the ridiculous Two Knights sketch. It is utterly stupid, and it makes me laugh every time. Please don’t judge my sense of humour too harshly.

Perhaps that is exactly what I need sometimes: something completely ridiculous in the middle of something terribly serious.

I cannot repair every failing system. I cannot know what difficulties lie ahead or how long the journey will last. And I am frightened by the speed at which things seem to be changing.

But I can do everything possible to make the journey safer for my passengers, minimise the turbulence and keep the aircraft flying for as long as I can.

And while we’re still in the air, I fully intend to enjoy the inflight meal and a movie.