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Living with DISH (D.I.S.H) – Dysphagia

Page last updated: 21st July 2009

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Living with DISH

Section 1: Dysphagia

© 2009 J.W.Brown

Revision 1.00 18th July 2009

 

Foreword

I found my early experiences of choking episodes devastating, leaving me exhausted and traumatised both mentally and physically. Banging headache, racing pulse, palpitating heart – not to mention a very sore throat, have all necessitated a long rest in bed, and a completely washed-out feeling lasting for the rest of the day. Cancelled plans and having to apologise for no-shows at scheduled appointments meant that I became very unreliable. I started to back away from commitment and perversely this resulted in more solitude – which actually takes choking risk to another level.

Parts of this document make grim reading – I’m sorry for that, but the truth needed telling.

My intention is to give some insight into overcoming the worst aspects of the complaint to sufferers, and their friends alike, and also inform health workers who have to do the difficult job of treating the complaint.

DISH & Dysphagia

Searching web pages pertaining to D.I.S.H on the Web, these will nearly always mention Dysphagia occurring quite commonly in DISH sufferers. What none of them stress are the possibly serious risks posed by this condition. I would like to set out here what I think should be mentioned, as an aid to understanding the seriousness of the complaint.

Dysphagia is usually defined as an (occasional) inability to swallow (certain) food or liquids, or food finding it’s way into the trachea (breathing tube or windpipe) and several other swallowing malfunctions. Food going down the windpipe may cause death by asphyxiation (choking), or more slowly a type of pneumonia. Also food caught at specific points in the oesophagus may effectively close off, or seriously restrict, the vital passage of air to and from the lungs by compressing the trachea, causing choking. Even though the food blockage may slowly clear, this may take too long for the sufferers good health and well-being. DISH sufferers often have an osteophyte growing forward from the cervical spine which impacts the oesophagus, restricting it’s effective diameter and thus forming a pinch-point to food on it’s way to the stomach.

Effects on Sufferer.

Let’s be clear what we are talking about here. First and foremost, the realisation of being unable to breathe will cause deep anxiety and/or shock in the sufferer. This is the phenomenon exploited by some banana-republic-mentality security forces in ‘water-boarding’ – a so-called ‘enhanced interrogation’ technique – in plain words: torture.

A large section of the community has never experienced what it feels like to choke until their lips turn blue – on a regular basis. However there are one large group amongst us who have to put up with this as a threatening condition for most of their lives – asthma sufferers. I encourage you to ask one of your friends who is a serious asthma sufferer, what he/she feels like when they can’t breathe. Their descriptions of feelings of impending doom were all-to-familiar to me. Unfortunately the group of non-sufferers can include the very Health workers who are trying to give us advice on what we should do – and sometimes informed advice is thin on the ground.

Coping Strategies

If you are a first-time sufferer of dysphagia, I advise you to prepare yourself in a bid to both avoid altogether or at least ameliorate the worst effects of a choking event. To this end, I’ve documented a set of strategies that I have found useful over a nine-year period. Note that everyone is unique, and that what works for me, may be ineffective for you. Consider coping with the condition as maintenance, and your strategies as a set of tools with which to carry that maintenance out.

  • Knowledge: Arm yourself with as much information as you can – especially find a side-view section picture of the head and upper neck, and study it carefully. Understanding how you swallow and breathe will give you some confidence to attempt the correction of problems successfully. If your consultant has X-rays of your cervical spine, ask him/her to point out the location of the offending osteophyte, so that you are aware of the position any blockage will take up.

  • Don’t eat alone: Until you are back in control, ( and you will be if you persevere) try ensuring that you eat in the presence of others. At the worst period of my choking episodes, the experience whilst I was alone in the house made me desperately anxious. I started eating all meals out. Mostly, if you are eating out and do have a choking event, someone may be there who will help you – but sadly, not always.

  • Define Candidate Foods for avoidance. Keep a record (after you’ve recovered) of what it was that caused the choking event, and compile this information in a table. You may be asked for such a list by a Hospital department anyway. I used 3 headings: Banned – Not to be eaten at all; Avoid – try alternative if possible; Tolerated – Food that you find easy to swallow. I found pretty quickly that foods which are very effective dessicants are absolutely taboo. A dessicant quickly absorbs moisture from any wet surface around it – Cracker biscuits are a good example – a bite of a cracker may stick in your throat like a limpet – whether you suffer from dysphagia or not.

    Use your avoidance technique in a positive way by trying out foods you normally wouldn’t consider. I’m now addicted to Yoghurt – something I wouldn’t touch a few years ago.

  • Inform. Don’t keep your condition a secret – your friends will probably blame themselves if you suddenly choke on their lovingly-prepared meals. Also simply refusing to eat certain items on the plate in front of you may upset them unnecessarily. Furnishing your friends in advance with a copy of your allowed food list is a good idea. If she’s/he’s a good friend they will understand, and not be offended.

  • Hydrate. Drink plenty of liquids during the course of the day, especially plain old H2O (tap water). The mucous-membranes in your mouth and oesophagus will love you for it. Take frequent drinks of water with your food.

    Always keep water by the side of your plate when eating. Don’t start to eat without water being there. Remember: No Water – No Food.

    Don’t snack on the move, but if you must, ensure you have a bottle of water with you.

    Keep a glass of water beside your bed – just in case.

  • Lubricate. It may be necessary to use more spread (butter/marg) on bread or biscuits than you have been used to. This may enable you to continue enjoying food that otherwise you may have to eliminate from your diet.

  • Eat smaller pieces. This is so obvious I nearly didn’t mention it. Cut your food up into your ‘usual’ size pieces – then halve them again.

  • Exclusive. Don’t combine eating or drinking with any other physical activity. Running upstairs to find your clean blouse whilst eating a piece of toast is putting yourself at unnecessary risk – not to mention the mess caused by dropping large dollops of marmalade on the stair carpet.

  • Bed is for making love and sleeping in – don’t eat or drink whilst lying down – ever. This is a sure-fire way of dancing your last dance with Lady Death.

  • Weight. It is a fact that being over-weight will impact on your ability to swallow – even if you don’t have DISH. I’m not going to preach here, but after losing over 3 stone in weight, not only did I feel so much better generally, but the frequency of choking incidents are measurably diminished.

Regaining Control

So far I’ve discussed strategies that may help to reduce the number of choking events that may occur. Your final goal is to achieve sufficient control over your thoughts and body so that when food does get stuck, you are still able to breathe at least a little, remain relaxed, and able to let the natural process of swallowing do it’s magic – albeit slowly. That is the stage I am at presently. On a regular basis a bite of food may stick, but I don’t choke, and haven’t now for well over a year. (a vast improvement)

  • DON’T PANIC: Take the advice given to Arthur Dent from The Hitch-Hikers Guide To The Galaxy. If you panic, you may make the situation much worse than it already is. I know this is counter-intuitive, but my experience of the 1st few occurrences of choking I had, were certainly made worse by the panic-stricken conviction I was about to die – alone.

  • Intervention: In a choking episode, the timely intervention by another person may save your life. If you feel that you are unable to clear the blockage yourself, don’t hesitate to elicit help – even from strangers. Just standing up can make your predicament very obvious – if not, gesticulate that you require help by pointing to your throat then your back – inviting a thump on the back. Men and women who have raised children will have experience gained from helping little Johnny to expel the rather large marble he’s just swallowed. Don’t be sexist – accept help from anyone who offers it. A caveat here: Any intervention that is to be successful needs to be carried out with some considerable force, and a knowledge of the technique involved.

    Thumps on the back:

    Experience with one girl friend demonstrated that she neither had the strength, nor could she always remember where to thump me. Feeble taps on the back of a 14 stone man are completely worthless. Show your significant other exactly where to thump you. Official advice is to use the heel of a hand between the shoulder blades. My experience has been that most females lack the strength to make a vital difference using the heel of the hand, so in this case 4 or 5 thumps with the side of a clenched fist, may do the trick. My ’sweet’ spot is 2-3 inches below my shoulder blades – yours may differ. Don’t wait until you are choking to instruct your partner – do some practise runs with them. This will give both of you confidence that they are capable of making a chosen technique work.

    Heimlich Manoeuvre:

    It is my opinion that this procedure should only be carried out by someone who has been trained in the technique. The manoeuvre is quite violent and may cause internal injury. Having said that, this procedure was carried out successfully on me by a perfect stranger back in 2001, and I suffered no lasting ill-effects. I am eternally grateful to him for taking the trouble to learn the technique.

    The Resuscitation Council’s guidelines are a useful source for information on positive intervention in the event of choking. (see: http://www.resus.org.uk/pages/guide.htm)

  • Coughing: You will not need to think about coughing – it is part of a natural reaction, and satisfies current medical wisdom. My advice is: If you find that coughing helps then by all means this is what you should do. My experience has been that coughing in response to either the choke, or the severe irritation in the throat is likely to move the food only a small distance – in my case, very often up and over into the trachea, I therefore try not to cough. This is me – You may discover that in your case you can cough the offending article free – good enough!

  • Lubricate: Try taking a drink of water – sips only. Sometimes I find drinks with a greater viscosity and/or have fatty content e.g. semi-skimmed milk to be more successful in freeing the offending food. Thin Yoghurt (with no bits in it) has also been used successfully.

  • Sit quietly doing nothing!: I know this looks insane, and achieving complete calm might also sound impossible, but that is precisely what I do now. I suppress both the ‘gag’ and cough instincts in spite of the extreme eye-watering irritation, and simply wait for my throat to do the work. Now that I’m aware of exactly where in my throat the food is stuck, I know it is not fully blocking my airways and I can breathe just well enough if I don’t panic. I can actually feel the slow passage of the food past the obstruction, then accelerate on to it’s destination. If you can still breathe a little, don’t attempt to take great swallows of air, but try to breathe naturally and calmly.

    If you find it difficult to achieve the above, try using some simple relaxation techniques you may know already.

    There is a trick I learned many years ago which may help regulate your breathing and take your attention away from any thoughts of imminent death. I used it to achieve falling off to sleep whilst suffering chronic pain. The idea is to make your conscious mind work on one problem only – in this case breathing. Start by counting 1 to 4 slowly and evenly (NOT deep breathing!) whilst breathing in, then counting slowly and evenly from 1 to 4 whilst breathing out. After doing this for 3 or 4 times, lengthen each breath phase (in/out) by counting up to 5. This might sound simple – believe me you will have to concentrate, and before you know it the food will be swallowed completely and you can resume your ‘other’ foreground tasks. The Hindus call this meditation – substitute: “OM” – I say it’s exactly the same as hypnotising a chicken!

    Another technique I use at especially stressful times is to put my middle two fingers of my right hand directly over the centre of my chest until I can feel the strong pulse and I then concentrate on slowing my pulse down. Again this is difficult, but just attempting to slow your heart rate in this way will calm your thoughts.

    Whatever relaxation technique you decide to use – practise it – don’t wait for a choking event before you try it out. Practice will give you both insight and confidence – two things that will be very important in helping you to remain calm.

  • Visibility: If you are alone, and feel you cannot remedy the situation – leave where you are and seek help – Don’t wait until it’s too late. Feeling foolish after running out into the street and banging on a neighbour’s door, only to find the blockage clears anyway is much better than the deadly alternative. (Yes, I’ve done it)

  • Stiff Upper Lip: Get rid of it, don’t be shy or ashamed, but ask (gesticulate!) for help. People can be kind.

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An interesting technical paper on this subject can be downloaded here: DISH & Dysphagia

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1 comment to Living with DISH (D.I.S.H) – Dysphagia

  • admin

    I posted a message on ehealthforum.com regarding the above article and they have removed my post – apparently I’m ‘advertising’. Considering I’ve nothing to sell here whatsoever, the rationale for their reasoning escapes me. I enclose a copy of their message below, together with my reply:

    From: eHealth Forum [mailto:administration@ehealthforum.com]
    Sent: 21 July 2009 13:17
    To: connectable.org.uk
    Subject: Please do not advertise on eHealth Forum

    Greetings from eHealth Forum.

    It seems that you posted a message containing advertising to our community health forum.

    Although the message was probably posted in error, we`d like to remind you that advertising and solicitation are strictly prohibited. Advertising is defined as “messages that promote, advertise, offer, or ask for contact information in regard to (but not limited to), websites, personal webpages, links to pictures, businesses, freebies, surveys, polls, products or services”. In general, we publish links from non-commercial sites that carry known authority. Your post will be edited to remove any reference to external products and/or services. Please refer to the website`s advertising policy for further clarification about advertising.

    Thank you in advance for understanding and complying with our advertising policies. We value each of our members and are glad to have you as a part of our community. Happy posting!

    Sincerely,
    The Administration of eHealth Forum
    ================================================================================================================

    My posting on their forum:
    There are some good comments here. My 1st symptoms appeared in 2001 and although we are told that the disease ‘progresses’ slowly, it hasn’t been slow enough for me. Also, barring one or two forums with useful comment such as above, there is little or no ‘help’ in coping with this debilitating condition. The worst aspect for me has been dysphagia – something that is only briefly mentioned, yet that can be life-threatening. I’ve just completed an essay on DISH-associated Dysphagia which has been posted at: http://www.joebrown.org/dysphagia and which I hope will both inform and benefit sufferers.

    My reply to their rejection email: Sirs,

    I posted the reference to my essay for the reason stated in my text – that there is very little in terms of sufferers experiences in overcoming the symptoms of DISH – your site is such an example. I’m selling nothing – but giving away insight and experience. I thought that this was helping the community, but you obviously don’t agree, So be it.

    JWB

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