Locked-in Syndrome

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Much as I would like to sink my teeth in a hamburger with chips.......I cannot. This illness causes complete paralysis and that includes mouth and tongue muscles - I can bite but the lack of tongue movement stops me from moving food around my mouth and chewing it. I can eat food but it has to
be soft and require little or no chewing - like omelette for example. Actually I tasted lots of different foods thanks to a nurse here who brings for me various foods.

Then I also have the problem of aspirating or food going in my airway and down to my lungs, which would cause a chest infection. Normally we can stop momentarily our breathing (subconsciously) but in my case I have no control of my breathing - if a doctor tells me to take the classical deep breath, I just can't. I can just about swallow but it is rather hard for me and therefore I rely on having my mouth full to trigger my swallowing reflex. This has the disadvantage that sometimes food trickles down my throat, making me cough. Thankfully I have a good cough reflex and I cough up whatever is irritating me.

Actually for about two and a half years I did not take anything orally - I have a Percutaneous Endoscopic Gastrotomy or PEG as it is known. This is a tube that goes straight into my stomach, and I had a stuff called "Nutrison" through it. Since it goes straight into my stomach, I can't taste it - which is just as well because it tastes horrible. How do I know? Simple really - if I burp, I can taste it. Now the PEG is used for medication and for water (I can't handle liquids in my mouth). For your information, feeding through the PEG is known as "enteral feed".

Then I began having lunch and then breakfast and finally supper. I have liquidized (pureed) food - all that other patients have but passed in a blender. This may not look wonderful but it has a taste (unlike PEG feeding) and the main problem is that all the tastes that compose it are mixed together.

One of my big problems while eating is breathing......let me explain : I cannot control my breathing at all. I cannot hold my breath and I cannot inhale or exhale when I want. If while inhaling I open my mouth, then automatically I breathe through it and if there happens to be some food in my mouth, it can go down in my lungs. Thankfully I have a good cough reflex and anything in my airway would irritate me, causing me to cough it up. To further enhance the problem, I need a full mouth to trigger my swallowing reflex and very often it means holding a first mouthfull in my mouth. Unfortunately this means that often food trickles down my throat and goes in my airway (this is one of the reasons I cannot have liquids).

In June 2006 I began taking liquids - any liquid but with a thickener......this is added to the liquid and can be made slightly thick or so thick that it will not fall out of an overturned glass. The thickener is odourless, tasteless and colourless and will thicken anything that is too liquid for me to take. With it I can have coffee (yes, I missed it) or a fruit juice. I could have begun taking it a long time ago but the idea of swallowing a chemical didn't appeal to me. I guess it is a bit psycological just thinking it probably tastes bad but (as I said) it is completely tasteless.

On the 3rd. November 2009 my PEG was removed - this is not what was originally planned....I will explain : 3 months before, the plastic pipe of my PEG cracked. It was not a serious problem as I was having pureed/liquidized food for many years now. The problem was liquids, as I cannot control liquids in my mouth......Some time before, I began having liquids with thickener. Although it is supposed to be a colourless, tasteless powder that thickens any liquid, when it is added to plain water, it tastes horrible and looks like wallpaper glue! To avoid this, a little fruit squash is added (I use lemon squash as I found it best). This, together with coffee, keeps my body properly hydrated.

Since the pipe cracked, I had another problem : as such I had no way of closing the tube and gastric juice (which is highly acidic) was coming out and irritated my skin. Every day the PEG area of my stomach had to be cleaned and the dressing changed.

After 3 months (there was a 3 month waiting list) it was time to go to hospital and have it changed. Unfortunately nobody cleaned my dressing and by the next day (when surgery was due) the area got infected. When the doctor saw it he said he wouldn't touch it as it was infected. Then after a course of intravenous antibiotics, it healed and since I managed these months without PEG, it was decided to remove it.

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