Claire Foster-Dysphagia Challenge

The Challenge: Drinking only Stage 1-2 thickened fluids (syrup to custard-like consistency) for five days.
Background: The National Clinical Guidelines for Stroke (2012) [1]. say that after a stroke, between 40-78% of people have difficulties swallowing (‘dysphagia’ to give it its fancy name). It can also be a feature of conditions like multiple sclerosis, motor neurone disease, Parkinson’s disease, dementia and following a brain injury. As well as making eating and drinking very difficult, there is also a chance that bits of food and drink can fall through your airway into your lungs and this can develop into pneumonia. If people are ill anyway, aspiration pneumonia can lead to death.
Despite not being in the job title, Speech and Language Therapists (SLTs) work with people who have swallowing problems. One technique is to add a thickening powder to fluids to make them more viscous and thick. This makes the liquid travel down your throat much more slowly, allowing your swallowing muscles time to protect the airway.
 For the next five days, I will be adding thickener to all my drinks to make them a syrup to custard-like consistency to experience what it’s like for some of our clients.
Sunday: It’s the day before the challenge begins so I suppose I had better try some thickened fluids to see what I’m letting myself in for. I’ve had some in the past, mainly a quick sip before pulling a face and putting it down. Thickened fluids do not look appetising, an ordinary glass of water is transformed into a thick, pale sludge in an instant. I can see why lots of people advised to follow this modification end up becoming dehydrated [2].
I decided to try it with some orange squash to add some flavour. Unfortunately, I didn’t realise that the juice had had gone off (to be honest, I didn’t know squash could go off!) which made my first gulp pretty unpleasant. Following a trip to Sainsbury’s I tried again. I added two scoopfuls of thickener into my drink and gave it a good stir; nothing much happened. After another two spoonfuls, it started to get a bit thicker so I gave it a try. The flavour definitely helped and it didn’t seem too bad at all, rather like a smoothie. What I didn’t realise was that the longer you leave it, the thicker the drink becomes and with my extra helpings, it soon resembled a cake-mixture consistency. The texture became more and more grainy and very difficult to swallow. Needless to say, the next five days are going to be quite a challenge.
Thickened Juice
Thickened juice
Monday: Every morning I have a cup of tea (milk and two sugars) without fail. I am determined that this week will not be an exception. That is one of the great things about thickeners, they can be added to absolutely any drink; a huge benefit in terms of variety. Unfortunately, thick, warm drinks seem to be even more unappetising than cold ones. I found myself having to force it back, frequently gagging, and I noticed an after-taste that I didn’t notice with orange juice, kind of like what I’d imagine wallpaper paste to taste like. I gave up with my cuppa in the end and reverted back to thickened juice.
Thickened tea
Thickened tea
I have to go into uni today so I packed my tupperware pot with thickener and a bottle of juice. Since thickened drinks get progressively more viscous, I kept nipping to the kitchen to make up drinks. I can imagine this can be quite a faff for people when they’re out and about.
Tuesday: Hooray!! Managed a whole cup of tea this morning. Although it wasn’t quite up to the standard of a normal cuppa, I feel like I am getting slightly more used to the texture.
We had to give a presentation to four of our peers and a tutor today. I felt really self-conscious about getting my tub of thickener out and mixing up a drink even in front of colleagues who are aware of the challenge I’m doing. I would imagine that people who need to use thickener can get some funny looks in public.
One of my main worries about taking on this challenge was that I’d get really dehydrated. Since I still wasn’t exactly enjoying the drinks (more like tolerating them!), I had to make a real effort to keep downing them at regular intervals. I think the main issue is that psychologically, the thick texture just doesn’t feel as thirst-quenching as normal fluids. Surprisingly though I felt just as hydrated as I normally would, even after going for an evening run.
Wednesday: The challenge is going well, but I was starting to get a bit fed up with the same flavoured drinks all day long. For the sake of variety, I attempted to add thickener to cola. Clearly, these two substances don’t mix well; the whole drink erupted into a volcano-like explosion, it was quite something! Once things had settled though it tasted surprisingly good and still had a bit of fizz. The thing that made the most difference was how lovely and cold it was. It almost came close to being refreshing.
cola2
Cola explosion!
Thursday: Today I felt very positive about the challenge. Thick tea is almost palatable and I can drink a glass of custard-thick juice without gagging at all. I decided it was a good time to try and face my fear of drinking unflavoured thick water.  This was an entirely unpleasant experience! Although considered ‘flavourless’, there is definitely something of the wallpaper paste about thickeners. I managed to down the entire glass though, despite feeling a bit like Dumbledore in that bit with the horcrux. Of all drinks, I think that this week I have missed a plain old glass of water the most. Nothing is quite as thirst-quenching.
Water
Thickened water
Friday: Last day of the challenge! This evening I treated myself to thickened wine. Yeah, it was as bad as it sounds! The thickener somehow managed to enhance the acidity of the wine and the gunky texture was pretty disgusting. But I’ve been a student for almost six years and it is deeply ingrained in me that alcohol must not go to waste. To be honest, it’s probably better than the budget version of lambrini we used to drink in first year!
Wine
Cheers!
Conclusions: Whilst not exactly pleasant, thickened fluids can prevent people with dysphagia from contracting serious illnesses and even dying. Before this challenge, I always assumed that if I were told this then I would happily add whatever it took to my drinks to keep me alive. Yet this week, drinks that I previously looked forward to, like my morning cuppa, became something that I dreaded and had to force back. I missed the thirst-quenching swish of cold water after a run or on a hot day. It also made me feel isolated from everyone else, being the only person who had to perform this strange ritual with tubs of powder and measuring spoons. I had forgotten that having a drink is more than just a basic requirement to maintain hydration, it is  also something that is enjoyable, satisfying and social. I had always underestimated how much of a challenge living with dysphagia must be, but I hope that this week will make me into much more of an empathetic therapist. Thanks for reading!! Claire.
References:
[1] Intercollegiate Stroke Working Party (2012). National clinical guideline for stroke, 4th edition. London: Royal College of Physicians.
[2] Leibovitz, A., Baumoehl, Y., Lubart, E., Yaina, A., Platinovitz, N. & Segal, R. (2007) Dehydration among long-term care elderly patients with oropharyngeal dysphagia. Gernontology, 4. pp. 179-183.​

 

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One thought on “Claire Foster-Dysphagia Challenge

  1. ED July 2, 2014 / 11:23 pm

    Claire, what a good post – I love your honesty and humour, and also real integrity in attempting this challenge to get insight into the clients. Well done all who challenged!

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