I’ve had a FEes endoscopy and a barium sulphate swallow xray. They’ve found that I aspirate a little. Do any of you have advice or experience with learning to eat and drink again. My chew and mouth muscles are very weak and I chew silicon chew blocks to try to strengthen them. I’d love to hear about your eating and drinking journeys.
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I had and still do have swallowing problems. I ‘choke’ a lot when eating, usually aspirating food and liquid. I had a SALT assessment last year for my aphasia, but the therapist assured me that I had no problems. I find it very embarrassing when I’m eating out; I do try to eat carefully but it happens with no warning. Luckily my cough reflex is good and I can usually clear my throat after a time,( I do have a partial denture and it worries me that I might cough it out one day), thankfully though I have never vomited by choking. Best wishes Norma
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Thank you @norma it is comforting to know someone else has the same issues as me. My cough is also fairly good and I do hope will serve me enough to be able to go home and stop using this blasted Peg.
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Eating is still an issue for me even after 4 years apart from taste buds being shot I have to eat slowly else I start coughing which is embarrassing if out in company lately I also find my left eye , my stroke side waters when I’m chewing 
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Really I’ve never heard of eyes watering possibly from the coughing, my eyesight was very affected by the stroke and I spent the first few weeks unable to see at all until I was finally given an eye test and glasses😎
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I had my second stroke 2 years ago. Since that time I’ve been unable to swallow. This means I have to spit out everything. My wife grinds up my medication and mixes it with water, then injects it into my stomach. I am PEG fed. I get about 1500 calories per day over 13 hours of continuous feed. I have lost at least 8 stone in weight. When I see myself in a mirror I do not recognise the undernourished person looking back. What keeps me going is the thought that one day I’ll be able to swallow again. So whatever you’re going through do not give up. It will get better!
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Thank you @PhilipS it’s so comforting to me to know others are going through the same ,I do hope you can swallow soon.
There are 2 positives to come out of my swallowing ‘disorder’. Firstly I’ve come down from a 4XL to an L and secondly I used to be on Sitagliptin and Metformin for diabetes. I’m now not diabetic, so I’m off both drugs!
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Philip - with regards to your feed, the 1500 calories taken over a continuous feed - is this something you are happy with? I am guessing you are eating on the move for example when you went away for your break to the Cotswolds?
I ask because, I am carer for my Mum who is nil-by-mouth and on a PEG feed and was put on a continuous feed like you and she was taking a litre of liquid food (Jevity) and initially this was done overnight. We felt this was not normal or natural i.e. “eating in your sleep” and at night time and so we asked to switch to daytime feed. But with the care calls (4 times a day) the feed stretched out to up to 16 hours (8am to midnight) and again we thought this is not normal - your body is not used to continuous eating.
So we had another review and Mum’s dietician said Mum can go on a Bolus feeding regimen. Put simply, this aims to replicated “normal feeding patterns” and so Mum now essentially has 3 “meals” a day and a snack meal to get her calorific intake - she is on 1000 kCal per day which is delivered via Ensure Plus and Ensure Fibre feeding supplements.
Not sure if this is something you wish to consider - if you are interested, please talk to your dietician or GP.
I note many people say they lost weight post stroke.
My Mum is the same weight as she was pre-stroke 
She lost about 3 /4 Kg in the first stay in hospital post stroke because she was not given any food/nutrients for about a month and then the rest of the time she was fed (via NG and later PEG) “part-time”. The staff did not always get round to starting her feed as they had to make sure the NG was safely in the tummy and often this meant going in for an x-ray which could add up to six hours delay as it cannot be pre-booked. It was a total nightmare.
Anyway, once home she put her weight back on and now only loses weight when she is admitted to hospital because they cannot (A&E) cope with her feeding regimen - sometimes we end up having to take her feed and equipment in to make sure she is fed in a timely manner.
So there you have it, the wonders of being PEG fed.
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I’m delighted she put the weight back on @ManjiB
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I take feed at 100ml/hr of Nutricia soya for 12.5hrs per day. So I get 1250 calories. Any faster and I’m sick. Aware that my weight was constantly dropping my dietician prescribed a liquid to stop my weight dropping off. I take about 300 calories per day of that liquid. My weight has consequently steadied. I am happy. I could be fed at night but choose to be fed during the day. I take the PEG feeder with me when I go away as it’s battery powered, so it is charged through the night. My wife bags up the feeder and attaches it to me and the back of my wheelchair each time I go out.
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I think you are doing the right thing Philip - we have to find the right balance between what is available, what we would like and what we can tolerate.
I always say “Listen to your body” and you clearly do that. No point in forcing it do things before it is ready.
Being able to feed on the go is great - that back-pack and pump gives you quite a lot of freedom. The FreeGo pump and indeed the PEG are some ingenious inventions! Without them, my Mum would not be here
Wishing you and your wife (or should I say your carer all the best.
Can I ask if you are having any problems with the PEG e.g. blockages, advance and rotate issues? Hopefully it is all under control.
I ask because it is one area where we had problems despite us following all the best practice advice on cleaning, maintaining etc. and as a result, Mum has now got a “buried bumper” 
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Thanks Mich-mm for helpful information
After my swallow X-ray my SALT has stopped me eating yoghurt which has really upset me because I got so much from the dopamine fix!Apparently just smoothies now and wait to see her until Friday to discuss further all I Seem to do with the NHS is wait!
I don’t think SALTs realise the psychological importance of eating and getting a dopamine fix from food particularly sugar.
Michelle - I’m so sorry you have been told to stop eating yoghurt following your swallow x-ray.
Hopefully on Friday when you meet to discuss, you will have an understanding to the reasoning behind their decision.
I think they do understand the psychological importance of eating and the dopamine fix, but they will likely be constrained by the risk associated with allowing you to continue if it is not safe for you to do so. I expect there is some concern about how safe your swallowing is and the risk of you piking up a lung infection if the yoghurt ended up in your lungs. Aspiration is a concern for PEG fed patients.
Let’s wait and see what they come up with.
Take care.
Thank you @manjib i too hope iget to eat yoghurt again.
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