Is anyone else take food/water/medication by peg?
Since my Ischemic Stroke in August 2019 I am peg fed as I’m nil-by-mouth. Which is a bit of a bugger!
Unfortunately I have failed my previous videofluroscopies and have been doing daily excercises which strengthen my swallow.
As well as my exercises, I have recently started using an EMST 150(expiratory muscle strength trainer) and a IQoro device.
I wondered if there is anything else used for issues with swallow?
Apologies for the long message and if I’ve posted in an incorrect place.
I also have problems with swallowing and voice. I have 2 peices of equipment I use to help and some directions from speech pathology that actually help. I will post those in a little bit. Having trouble with words and typing today.
I am still having trouble with words today, and finding my equipment to give you the right names. I promised and I wanted to get back to you as soon as possible. You likely already know this but … for swallowing…sit up straight while eating or drinking, tip chin forward when swallowing, don’t try to talk while you are eating, try to stay focused on the eating or drinking, and continue to sit up at least 30 minutes after. I still have some swallowing issues, but it is mostly choking on spittle after a cough or sneeze, or thinking about a reply to a question while I am swallowing (being distracted). Thankfully, I am able to eat again, but when I was they were trying to put weight back on me. I have more than made up for that loss, and need to dial it down a bit
For speaking, saying vowel sounds in differing ranges…low to high. Almost trying to sing. E was the hardest for me. and is actually still hard, but getting easier. I used to love to sing. I still do, but hope no one hears it, as it was passable before, and fairly unbearable to hear now.
I can’t remember the equipment names but I will either find them soon, or look them up. They may be the ones you already have. They didn’t work quickly, but did eventually truly help in getting the breath needed for the words to come.
A device called an incentive spirometer can help you take deep breaths correctly. By using the incentive spirometer every 1 to 2 hours, or as instructed by your provider, you can take an active role in your recovery and keep your lungs healthy.
While these tools are specifically to make your lungs stronger, by doing so, you are also making the muscles you use to swallow stronger. There are plenty of other tools but I wouldn’t try any of them without talking with Speech Pathologist first. Many are a mist or straw system, but I still choke on mists of saliva, so wouldn’t be so great for me. I am not allowed to use a straw even after 22 months. I will probably never use one again. Be very careful to follow what they tell you because you do not need pneumonia and you want to be able to eat again soon. Those barium swallow tests are what tells the Pathologist which therapies will be helpful for you specifically. Thick or thin liquids, pureed foods, wet food… it tells them which muscles are not responding correctly. Trust them.
Hope you have a better day.
Unfortunately I keep failing the videofluroscopies. I’m next due for a test in December this year, hopefully. However I keep pushing for it to happen earlier and will let you and everyone know the result.
I am unable to swallow and after coming home from my Stroke I was hospitalised last year, with pneumonia affecting my right lung, for four days before again I came home with loads of antibiotics.
Previous videofluroscopies have led me to try thickened water up to level 2, orange juice and custard.
Daily (except Sundays) I do chin tucks, Mendelsohn maneuvere and vocal stuff. Repetitions of each exercise three times a day.
I also sing daily. Two songs,badly per day.
Like you I was better before.
Devices I was recommended by my SLT
and use are EMST, like you, (Mon-Friday inclusive) and more recently the IQoro everyday.
I tried 'Biozoom’ which was found to be too dangerous for me. I don’t think it was invented for red wine .
Thank you for recommending the use of an Incentive Spirometer. I have not heard of this previously and will discuss with my SLT first.
Just seen your post and noticed you are on PEG feed.
My Mum is also on PEG feed since she had her stroke in Marsh 2019. During this time we have tried to get her off the PEG feed, but it has been difficult since the stroke has left her with extremely poor communication skills. We tried to get the Speech and Language Therapist (SLT) to help, but were unable to make progress.
We were told to just keep trying to encourage Mum to take a sip of water and someone suggested pineapple juice to stimulate her desire to take food/drink by mouth. Unfortunaltely, we are unable to get her to take anything. She simply puts her hand across her mouth and refuses. We haven’t even got anywhere near the videofluroscopies.
Being PEG fed, watered and medicated does not seem to have adversely affected her though it is quite an inconvenience and time consuming process.
One other problem has been the tube itself which developed holes twice and had to be cut. It is now only abput 3 inches long and also we are unable to advance and rotate it.
The Abbott’s nurse thinks it is now buried and when it becomes blocked or malfunctions, Mum will have to be taken to A&E to get it replaced. We have tried to get the hospital to replace it, but they have been reluctant suggesting it is high risk for someone in Mum’s situation (she is in her early 90s and considered frail).
Sorry I can’t help you with your issue of swallowing, but just wanted to share our stroy with you.
Appreciate you sharing and my verbal communication is also very poor since Stroke(August 2019). It is called Dysarthria (difficulty speaking). I must confess it is crippling socially and thank goodness for a great SLT and my family are great. It can’t be good for them.
Daily I do speech exercises and read out loud (can be anything at all).
For my swallow I do variety of daily exercises and use the aforementioned devices. Though this may not suit your Mum, so always best to contact someone in the medical trade.
Regarding the peg I quite agree, it is inconvenient and sorry your Mum is going through this.
My dear Wife rotates it weekly and as I’m nil-by-mouth, since my Stroke, she also cleans the tube once a week with cool (was boiled water).
I’d be useless trying to do it!
I was recently 52 yo.
Whilst I had some infections
caused by the tube initially, these were cleared up by antibiotics.
Unfortunately she will have to attend hospital for a new tube. I would also if it gets to short.
Mum cannot speak words we can understand - she just makes noises and gestures. It’s a shame because she cannot convey her messages and it makes it hard for her to get the help she needs or wants.
Her PEG tube became infected about a year ago and we have not managed to clear the infection. Various antibiotics (external and internal) have been tried but still the site oozes a creamy fluid which tests positive for Candida Thrush.
We, the family feel helpless, and the professionals also struggle due to the communications and the lack of specialist support.
We are almost resigned to Mum being on the PEG for the foreseeable future.
We are pleased that at least your PEG is stable and you are able to communicate. With regards to your swallowing, are you able to drink water? We were told by the SLT to try to give Mum a sip of water or tea, but as she refuses we can’t progress. Once or twice she took a spoonful of water but then refused a second
Do keep us posted on your progress - there aren’t that many posts relating to PEG on this forum.
Communication is a pain. Can your Mum point?
If your Mum can , then a set of cards she can point at may help. Probably best to laminate them, if the SLT is not able to do it.
I found many medical staff didn’t have any knowledge of Stroke or a poor bedside manner.
Unfortunately I am unable yet to have any fluid. Everything goes through the peg.
Yes, Mum can point and she speaks in her “own” language which unfortunatley is alien to us, though we can guess from the tone of her voice and colour of her face - gets red when she is angry!!
She sings songs in her own language and all this is actually very cute and pleasing for us. It is a wonderful sound to our hears when she sings and she has a lovely smile on her face , she is just adorable
She has also worked out that if she raises her voice, she will likely get attention from us and quite often she will continue to call out until she gets seen to. She must have incredible lungs as she goes on and on and can do so for hours; don’t get me wrong - we don’t ignore her for hours, but at night it is difficult. For example, we settle her in and a few minutes (literally) later she starts calling out and we can only keep going up and down so many times before we get worn out.
With regards to medical staff expertise on the subject of stroke, I think, and if I am not mistaken, it has been concurred many times on this forum that this is indeed the case. We felt that once the hospital had tried the clot buster to remove the clot that caused the stroke and it failed to clear, that was it. From thereon, as Mum was declared medically fit within a week and they were ready to discharge her. Community care was hit and miss and in the end, we the family are now probably the “experts” regarding her condition and ongoing care needs. We are often having to “recommend” medications the GP should prescribe etc.
It is very sad that Stroke is not as well understood a medical condition as other branches of medicine.
That’s good news that your Mum can create a message.
Not great that it’s detrimental to you and the family at certain times.
However good news gesturing and using her voice.
Agreed Stroke is poorly understood amongst the majority of medical staff. It should have much higher profile. Plus I feel (and maybe wrong) that it shouldn’t be called Stroke but maybe Brain Attack.
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