Eating with Your Eyes: Dysphagia & Me
Stroke survivor, global stroke advocate, inspirational webinar speaker, stroke rehabilitation consultant, mum & author of ‘Running Free: Breaking Out Of Locked In Syndrome’ (2011 Amazon) @KateAllatt
For Swallow Awareness Day 2021, we have partnered with the inspirational Dr Kate Allatt, a stroke and locked in syndrome survivor, as she tells her recovery story and how she managed her dysphagia and started to celebrate mealtimes again.
In the beginning
"You need to assemble your family. Sorry. Kate has had a huge brainstem stroke in a coma. If she survives the night, she will have very little quality of life and we would recommend switching off her life support."
Three days later, I slowly emerge from my coma.
‘I’m here. Help! Help! Why can’t you hear me? Stop ignoring me. Take that out of my mouth!'
‘Where are my kids? I need to hug my kids. I’m so thirsty. I need a drink, look at my eyes, I need water. What’s happening to that poor man next to me? My leg cramps, please make it stop. Why can’t I move myself? Someone HELP.’ The voice in my head was freaking out.
‘You mean that’s why I can think, feel, see and yet move absolutely nothing below my eyelids! And please don’t eat those crisps near me!’
I’d endured hours of boredom. I had almost no oral hygiene. I had no taste pleasure except for secret teaspoons of Earl Grey tea, until it was stopped after my percutaneous endoscopic gastrostomy (PEG) was inserted. The only joy I had was eating with my eyes and watching Masterchef on TV.
I endured horrific hallucinations that no one warned me about and gut-wrenching separation anxiety from my young kids.
I hoped my rehabilitation might ‘save’ me, but I was wrong.
Six weeks into my rehabilitation, I had my formal review and plans were afoot to discharge me to a nursing care home.
I had an abject fear of never again being able to eat or move. The ability to eat and drink again really mattered to me. So I exercised – or at least tried – obsessively.
Then imagine my excitement when I was offered my first swallow test, also known as a videofluroscopy.
Sadly, I failed the test.
Six weeks later I failed a second test although I was convinced the doctor was being overly risk averse. Given I pretended to be asleep if anyone had the audacity of visiting me whilst scoffing a meal deal, it was no secret I was desperate to eat solid foods again.
The recurring nightmare of potentially being syringe fed down my PEG forever whilst watching - and dribbling - my loved ones eat my favourite roast lamb Sunday dinner, with a glass or two, absolutely terrified me.
I spent hours thinking how everything we did socially revolved around food and drink consumption. Think about it, that midweek Costa coffee, the Friday night takeaway, the pub dinner after a cold winters’ stroll, Christmas dinner, birthday cake, nibbles and wine at Tuesday night book club. They all revolve around food and drink. I was full – pardon the pun - of anxiety.
Even for those of us who aren’t social animals, socialising would be a very different experience if unable to eat and drink.
If I couldn’t enjoy the full social experience, then I’d feel isolated, like the disabled elephant in the room. On top of that, my friends would probably feel dreadfully guilty for being able to demolish their curries, like they did on my 40th birthday.
So, I came up with one of my typical ‘considered-risk-Kate-style’ plans.
I decided to ‘sign’ a disclaimer to say that I accepted all responsibility if I choked to death trying to eat solid food.
Walk to a new life
Nine months after my stroke, against all the odds, I walked out of hospital and ate again.
Though eating solids was not without its challenges - not least the 15 endoscopies to remove stuck grapes or fillet steak in my oesophagus.
Also, dribbling in public created huge anxiety so I’d choose to go hungry until I could eat in the privacy of my own home.
Rediscovering the joy of mealtimes
Having no idea that texture modified meals even existed back in 2011, I was pleasantly surprised to recently discover the Softer Foods range at Wiltshire Farm Foods. These ready-prepared meals are convenient, delicious and certainly an improvement on home blended roast dinners! The nutritional content also seems carefully controlled and available to view on the packaging.
My personal favourites from the Softer Foods range are the Level 5 Minced Cottage Pie and Level 5 Minced Salmon in Dill Sauce. The Lemon Drizzle Cake from the core Wiltshire Farm Foods range is also to die for! Depending on which IDDSI Level you’ve been recommended by your Speech and Language Therapist there’s a nice variety to choose from too. Different meals cater to a variety of swallowing needs when it comes to texture, so make sure your SLT guides you through this process.
“It’s a real honour for me to get involved in projects that make it easier for stroke survivors to not just eat with their eyes but to share more visually appealing, tasty and healthy meals with their loved-ones”. @Kate Allatt
Watch Kate Tell Her Story