Last reply 4 months ago
Living with dysphagia

So I’ve been living with it most of this year. I’m still learning and just pushing through as much as I can.

But can I ask for some tips.

For my I end up with food left on either side of the back of my mouth when I swallow so I have to keep going until it eventually moves, aka swishing water about and hoping it dislodges. I also randomly swallow without wanting to while I’m chewing which means choking, or if I’m lucky effectively regurgitating the food back up. (Erw, my husband jokes I’m just pretending to be a mama bird trying to feed her kids).
And then the issues of everything getting stuck a lot of the way down. Which again means chasing every bite with a ton of water. And having to use fizzy juice as a way to build pressure to dislodge prices that get properly stuck (found out I can’t have gummy sweets this way. Wasn’t fun).

I’m starting to make a list of foods that are worse for causing issues. Tonight I’ve added lettuce.

My aunt (speech therapist) give me the tip of swallowing pills with yogurt or something thicker. Although I admit I don’t do it often still cause I’m stubborn.

But yeah any tips on learning to deal with it.
I’m pretty stubborn so changing my ways is hard, especially as I was in a soft/liquid diet for a lot of my life aka from around 11years old until 23years old. And only actually starting eating fully solid food at that point after jaw surgery. I was excitable cause I can could finally eat steak! Now… Yeah that’s sort of lost again for me.

It’s a minor inconvenience as long as I don’t fully choke. But it’s still everytime I eat or drink and even swallowing saliva.

So yeah… Sorry. Probably given more detail than needed. But anyone got tips?

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doubleo7hud
4 months ago

She doesn’t sound reet nice this dysphagia woman who is she?


doubleo7hud
4 months ago

They give these things fecking silly names I mean what part of that means choking on yer beans on toast?


grandma
4 months ago

You have mentioned your Aunt, who is a speech therapist. I was referred to one by the NHS but she was a council one. Lovely lady, very thorough because I choke on food but both our problems are caused ms, have a word with your ms nurse, they should have bo problem doing so, and the speech therapists have loads of strategies for dealing with our problems. I have a list of foods I can’t eat when I’m on my own (which is quite a lot!) because I have no-one to pat me on the back or go forther if necessary. There are ways round almost everything and they should be able to help. Good luck😍


elliesmith
4 months ago

Haha I know…

It’s kinda like dysrathria. Difficulty with speach… Well I do now trying to see the flaming word.


elliesmith
4 months ago

@grandma
Yeah I read in the booklet I got from ms society that a speech therapist would be a good idea. Biggest issue and worry is my other aunt works semi locally. So there’s a small possibility she’d be my speech therapist. And while she’s amazing honestly I think that’d be a bad idea in terms of well everything haha.

I’m still pretty good at dislodging most of the time, although as long as it’s past my breathing tube I’m happy, even if it’s stupid danged uncomfortable (like right now where I’ve taken my pills and one has lodged itself… It’s taking the Mick).

Definitely making a list of foods also. And need to really start with yoghurt or something but I’ll need dairy free. Yey not, blinking expensive.

I’m kinda just struggling along and I do tell my gp, though she doesn’t much know what to do but keep track.


jas64
4 months ago

There is something at the pharmacy that you can add to food to thicken it making it easier to swallow – I’ve forgotten the name of it – a dietician can help you with this and other hints – best wishes!


grandma
4 months ago

I saw the thickener in action, my Aunt had a bad stroke and couldn’t swallow even a cup of tea, everything had to be thickened so I presume, whatever it’s called will be available on prescription. You should get yours free (if not why not). Worth asking your ms nurse because your gp seems as interested as mine. I always say mine wouldn’t …s on me if I was on fire!👇


elliesmith
4 months ago

@jas64 yeah can’t mind the name but ive used it for folks at care homes.
My husband and the dietician at the end of the month j might be cheeky and ask haha.

@grandma yeah the thickeners work I just sorta want to refuse to use them if I’m honest. I only drink water anyway, but I hate the sensation of yoghurt and thicker liquids, it gives me more anxiety tbh.
And tbh my ms nurse is much much less caring than my gp, my gp tries her butt off, she just doesn’t know what to do as she’s still new to the job (18months qualified). She’s not sure on the system etc.
Personally I honestly don’t have much confidence in my ms nurse nor my neuro, I’m sure they are good but for me I just haven’t had much luck with them yet.

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