Simon Stevens, who has cerebral palsy, has battled for years with his relationship to food, after numerous professionals have recommended he uses a tube. But Simon prefers to be independent and eat himself. Here, he explains how he’s discovered the right balance – and how you can too.
Due to my cerebral palsy and other health issues, I’ve had difficulties with my diet for a lot of my life.
Now, I’m 45 and eat fairly independently. I have no teeth due to various, but I eat very well without dentures (I worry that with my spasms they would end up flying if I coughed!).
But it’s not always been like that. The main difficulties have concerned healthcare professionals, such as speech and language therapists and physiotherapists.
Because I aspirate (inhale) my food, they have always wanted me to be ‘peg fed’. PEG stands for percutaneous endoscopic gastronomy. It essentially means being fed by a tube that goes directly into your stomach.
I have always made it clear that I personally don’t want to be fed using a PEG.
In November last year, I was hospitalised due to chest issues. When there, my heart stopped and I was rushed to critical care, where I was in a coma for 11 days. This was shortly followed by a 2-day coma, just to put the cherry on the cake. You need a sense of humour about these things!
I finally woke up confused to find I was nil by mouth and had a nasal gastric tube. Different from a PEG, this is when a tube is put up your nose and nutrients pumped into your stomach.
When I was transferred to a normal ward, there was some debate as to whether I should be kept on the tube.
After a lot of persuasions, the speech and language therapy team agreed I could have a softer diet, so long I sat upright, which I always do.
When I am restricted to a hospital bed, I am highly dependent. It means that I need to be fed (through a tube or orally) and use nappies.
Once I have the strength to transfer to my wheelchair, things get easier. I can feed myself and go to the toilet with assistance.
In my own home, with the support of personal assistants, I am independent as it has been set up to meet my need.
This is just one example of when professionals have wanted me to use a tube – I often have to fight my corner.
Following a soft food diet
When I first came to hear of a ‘soft diet’, I did not need it. At that time, I was very young and a pupil at the Queen Elizabeth II Silver Jubilee School. This was back in 1978 when the school was opened by the Queen, which I attended. I only remember jelly and Ice cream!
Back then, a soft diet meant having normal food liquidised into mush, which never appealed to me.
My second experience with a soft diet was when, despite my own difficulties, I was a helper/carer for adults with severe impairments.
There, I supported a guy with no formal communication and swallowing difficulties. He had liquidised food and I became an expert in thickening his drinks.
I started to wonder whether there was a better way to have a softer diet. That’s when I realised that I naturally prefer softer food, but in a natural and mainstream way.
The list of foods I would consider soft is endless, but to get you started, here are just a few of them:
- cottage pie
- cottage cheese
- baked beans
- ice cream
- rice pudding
- poached or scrambled egg
- chill con chilli with lots of grated cheese
- and gravy and sauces can make other food softer.
Things to avoid include salad, hard vegetables, red meat and dry food.
I am not perfect and I do eat things that I technically shouldn’t at my own risk. I like Mcdonalds, although it is possible to customise items, for example removing the bun from a burger. KFC is another favourite.
I have always loved my food and refuse to give it up. And it is not just about taste, but rather the texture too.
Meat can be slow-cooked, making it softer to eat. Nachos or other crisps can be crushed and added with sour cream or their dips.
In most restaurants, there is normally a softer option available if you ask for no salad and extra gravy or sauces to be added.
Hospital food has always been difficult, and I am often stuck with a jacket potato with cheese and beans. Having said that, one hospital I stayed at had good quality soft food from Wiltshire Food Farms, so it does exist.
In summary, If you believe eating as opposed to being tube-fed is the right option for you, state your case. And if you’re considering a softer diet, it does not mean a choice between mushed or baby food.
There is plenty of quality, mainstream soft foods, or ones that can be made so, that are fit for a king. There is also plenty of choice, as long as you use a bit of creativity.
By Simon Stevens
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