Kate Allatt on Dining with Dysphagia
Stroke survivor, global stroke advocate, inspirational thrive speaker, rehabilitation consultant, mum & author of ‘Running Free: Breaking Out Of Locked In Syndrome’ (2011 Amazon) @KateAllatt
Imagine being able to think, feel, see and hear yet move absolutely nothing below your eyelids and for months. I guess if you think ‘buried alive’ you may get the idea of what it feels like to live with ‘Locked In Syndrome’. At thirty-nine years of age, I suffered a huge brainstem stroke and was diagnosed with the rare condition.
I didn’t just have swallowing difficulties; my lips, tongue and swallow were paralysed as I was fed through my stomach feed (PEG). I hated being nil-by-mouth.
I willed every sinew in my body back to life whilst working tirelessly with my diligent speech and language therapist who really believed in me and helped facilitate my swallow and oral motor exercises twice a day. While paralysed I became obsessed with cookery programs like Masterchef and Ready Steady Cook. Why? Because you eat with your eyes.
Amazingly, after months of obsessive effort, a very weak swallow function returned, though I was diagnosed with dysphagia.
People living with dysphagia have problems swallowing certain foods or liquids, while others can't swallow at all. Other signs of dysphagia include: coughing or choking when eating or drinking, bringing food back up, sometimes through the nose.
After 10 months in hospital, I returned home minus my PEG to eat my puréed roast lamb dinner, shepherd’s pie or fish pie with my loved ones socially. I felt unbelievable happy to sit and eat and enjoy being part of the family banter and sibling arguments! Yes, I did say that. I really missed the taste and emotional experience from eating food whilst I was being PEG fed.
Truthfully, I never ever got used to being clinically syringe fed down my PEG every six hours. The process only punctuated my long days for fleeting moments and generally happened before or after everyone else had finished their meal. Sitting at the dining table with my family made me feel involved, included and frankly ‘normal’.
I never could judge my meal portions and also couldn’t throw anything away, so sadly often I’d eat the same roast dinner for three days in succession! If I’d have known about the Softer Foods range from Wiltshire Farm Foods, I could have enjoyed a wider variety of nutritional meal experiences.
Whilst making my own food, I discovered certain vegetables which were too watery to give a sufficiently thick purée and some were thickened with a binding agent like potato purée, corn-starch, or potato starch.
I also found that certain vegetables could easily be used for thickening with minimal need for thickening such as artichoke, asparagus, aubergine, cauliflower, pumpkin and potato.
At the same time as experimenting with foods to make my food thicker I exercised like hell. Oral motor exercises, chilled tea-spoon epiglottis swallows, tongue exercises. I’d also religiously sit bolt upright when eating and tuck my chin as I put a spoonful of food in my mouth. It really helped not being totally starving when I ate too. So, the moral of my story was little but often.
During the course of my peer mentoring, I’ve heard so many stories of people with swallowing difficulties being unable to eat without choking after many years. My heart goes out to them. Their swallow function assessments (videofluoroscopies) have been shown to be normal and consequently diagnosed as such. Yet, these people still can’t enjoy social dining experiences with loved ones after many years. This has led me to wonder whether instead of seeing a speech and language therapist these people should actually have been referred for psychological therapy or hypnotherapy?
As for me, it’s fair to say, I was rather self-conscious of eating out in public with my dribbling issues as well as spoon feeding myself my often three-day old, puréed food from my Tupperware box. Quite often I’d wait to eat back at home and instead suck on a piece of caramel chocolate while my loved ones ate. You may think that after everything I endured, I wouldn’t have minded coping with my swallowing difficulties in public, but I did.
I felt so excluded, self-conscious and isolated from social gatherings and with my profuse and undignified dribbling, which is still an issue for me now. However, it doesn’t stop me because I really believe enjoying social experiences with friends and family over a glass of wine and plate of sausage and mash is a basic human right.
Having tried many of the Softer Food meals by Wiltshire Farm Foods, I can honestly say that they don’t only cater for anyone with any type of swallowing level – Puréed, Minced or Soft & Bite-Sized - they even cater for special dietary requirements such as gluten free, vegetarian, low fat, low salt and free from.
My particular favourites from their main Wiltshire Farm Foods range are their Hearty Fishermans’ Pie and Roast Lamb and the new Somerset Chicken Pie with Lemon Drizzle cake for pud! Their food is not only tasty and nutritional, but the way they present food is also really appealing. I think the ability to enjoy food with your loved ones really takes socialising to an inclusive level.
As we start coming out of lockdown, we all need to enjoy the social company of our loved ones again over a bite to eat, even if it’s only outside. Remember, you eat with your eyes and the Softer Food dishes from Wiltshire Farm Foods allow you to do just that and much more.
“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