Look into my eyes! How one test can determine incurable disease
“Look to the left… to the right… now up. Up. Can you look up, please?”
If you asked me this time last year what PSP meant, I probably would’ve guessed a kind of Microsoft programme. Now, these three letters haunt me.
Rewind to 2017, my mum began to feel dizzy on a daily basis. We tried the usual advice — drink more water, snack on carbs, nap in the day — but whatever she did, it wouldn’t shift. There were trips to the optician to check she had the right prescription, no luck. Countless GP check-ups, no luck. Sessions at a posture clinic to work on balance, no luck. An appointment with an ENT [Ears, Nose, Throat] specialist, no luck. This visit in particular would be laughable if not so tragic as he diagnosed her with inner ear. I wish! There was even a referral to a Falls Clinic, no luck. After two years of dizziness, mum’s GP took her case to investigate with management. No. Bloody. Luck.
Then in January 2019, mum had three falls in five days (including one down the stairs). All the falls were backwards — significant, though we didn’t know at the time. She was taken to A&E and even though it felt serious, there was relief we might get answers. Yet despite being kept there for two days, she was sent home with no explanation. No luck. Again.
I felt like banging my head against a brick wall. Mum eventually went to a private GP. Then luck struck. If you can call it that? Someone understood! In the consultation, he warned “it could be Parkinson’s” and referred her to a neurologist. While scary, we took comfort in knowing there was a name for all this, and at least the illness was a slow progressing one.
Then, mum saw the neurologist…
This time, she came away being told she may not have Parkinson’s, though it could be “something related to it”. Good news! It’s not Parkinson’s after all?
A month later, following a routine blood pressure check, mum’s NHS doctor produced a letter the neurologist had sent. Just handed it over, no discussion.
At home, we read the letter and saw the neurologist had written up his notes from the meeting with mum (despite not speaking with her face-to-face about it) and wrote that her ‘eye movement disorder suggests she may have Progressive Supranuclear Palsy [PSP]’.
Progressive Supra what? Bit of a mouthful, hey.
Assuming it was a kind of eye condition, I began Googling. Incidentally, the first thing that pops up when you search PSP is PlayStation Portable! So began the task of learning to spell Progressive Supranuclear Palsy in full to get any information. Then the sky fell out the earth.
‘Death of brain cells.’ ‘Poor prognosis.’ ‘No cure.’
Once again, I clung onto the word ‘may’ in the letter. She ‘may’ have PSP meant she also may not have it.
But we got a second opinion that left no room for doubt — Mum had PSP.
Even though we had our answer, no medical professional was willing or able to explain what it was. So, I turned to Doctor Google again. I now know that PSP is a neurodegenerative condition that destroys cells in the brain. That progressive means it worsens over time. That supranuclear refers to the area of the brain that is damaged (above nerve cell clusters called nuclei). That palsy means paralysis. PSP locks you in your own body, robbing you of your ability to walk, talk, and eat. It’s what my dad always said was his greatest fear, now happening to mum. I also know that half of those with PSP are misdiagnosed with Parkinson’s as early symptoms present similarly i.e. slowness of movement, tremor, shuffling. However, while similar, there are also two distinct symptoms. Notably, falls tend to be backwards not forwards and there’s an inability to control eye movements.
Over the years, I had felt something ‘wasn’t quite right’ with mum’s eyes. Neurologist one and two both mentioned the eyes. I joined PSP Facebook groups in an attempt to feel less lost and one thing that kept popping up was the eyes. How after years of misdiagnosis, often up to five or six years, this one distinguishing feature was the giveaway sign when diagnosed — that PSP sufferers struggle to look up or down, known as vertical gaze palsy.
Despite this almost comically simple test, it took mum two years for someone to say what was wrong. I’m not deluded to think she’d be cured if diagnosed earlier, but knowing eliminates frustration, isolation and constant worry. It allows people to put provisions in place to maintain independence. It spurs people on to do things they might not be able to once PSP progresses. So, I began collating first-hand testimonials from other people into a document and contacted The Royal College of General Practitioners to request they put PSP on the curriculum for trainee doctors to learn about. If GPs could conduct the eye test, they can refer to a neurologist immediately if a patient presents tell-tale signs. The Royal College of GPs agreed to review my evidence at the next syllabus review; I’m ecstatic they decided to include it in training going forward. It’s a small victory. And while it’s not an overnight fix, with awareness comes understanding, funding and one day, ultimately, a cure.
Words cannot describe what it is like to see an able-bodied person become disabled, how they shape-shift into someone unrecognisable. How conversation that once flowed so naturally becomes something you pine for continually. How a trip to the shops is no longer second nature but a Goliath challenge. How the person that looked after you is now the person you look after. How the fate of being wheelchair bound is not if but when.
PSP’s unwelcome arrival has been life-changing. There’s a permanent cloud, a feeling of being less free. There’s a fear I won’t remember what mum was like before the diagnosis. There’s a darkness that lingers even on the brightest of days. There’s sorrow and pain and a constant ‘why us’? But I know self-pity won’t change anything. So, we live in the moment as best we can. I have daily contact with mum. My mum, sister and I have a WhatsApp group for gratitude lists where every day we write things we are grateful for. And I’m not done with the GPs syllabus. My power lies in creating change. I plan to keep on fighting because mum’s not just another statistic. She’s a master chef, a book lover, has Sheffield United in her blood, and loves a glass of Scotch (no ice).
My plea: If you are a GP, nurse or neurologist; know a GP, nurse or neurologist; or next time you visit a GP, nurse or neurologist; please spread this far and wide. The PSP Association Red Flags document is designed to be printed and shared in GP practices. And if you are someone struggling with these issues or know someone who is, please consider seeing a neurologist or movement disorder specialist asap.
