Has anyone got advice or words of support for Jane?
This is a tough one, any advice would be amazing. Jane wants to get back to her social life, but her swallowing difficulties are holding her back.
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Hello Jane
I feel so sorry and sad as I too suffer with dysphasia. It can be so challenging. As a young person you would miss going out socially and having fun with friends.
I am 88, my stroke occurred 11 years ago. The people who have helped me cope are my speech therapist, OT and dietition. Your weight loss needs to be monitored as dysphasia can cause huge weight loss . Yes I agree with you taking thickener for drinks would not be much fun. Do you have a stroke support group nearby who are living stroke , they are people who understand. I have been out for coffee with my stroke support group and feeling more confident when out socially.
Jane I wish you well for achieving your goals. Stay well and have fun. - Jenny
Some more comments for you jane:
Jasmine Anne
Stroke Foundation talking to a neuropsychologist tbh. And just knowing people aren't watching you drink coffee, curiosity is unavoidably human nature. Time to adjust really, no quick fix. Oh and find a survivor support group!! Genyus has a coffee and chat zoom meeting ! Social and you get to talk to people who understand
Kerri King
There are drinks made for this condition. They are more nutritionally balanced so they can support you nutritionally.
Olive Duggan
Acceptance is the key I have memory loss and struggle with names of things since my 2 strokes I just laugh at myself I can’t change it so just have to accept it I know they are different but you are alive so live your life that has been saved any way you need to Good luck
Deirdre Reich
It was suggested acceptance is the key I still dribble from my left side but my children are good and quietly n discreetly point 2 their own mouth so i know where 2 wipe having a good friend that knows your problems i guess eat and drink at your own pace order th same thing 4 your friends 2 see how they cope they may get ideas while they struggle with your food and at least understand wot you are living with now
Christina Edwards
Did your speech pathologist give you any exercises to help? Maybe a regular review with your speech pathologist for support and idea
Emma White
Hi Jane, speech path here. In my opinion, there’s nothing sexier than following a speech path’s recommendations!
Seriously though, dysphagia sucks and I’m sorry that’s happening for you.
Losing weight in a hurry isn’t great for you, even if you have goals around losing weight eventually. Remember your body and brain are recovering and they both need the right nutrition to do that. A dietitian might be a good person to chat to, so you can lose weight in a healthy way, if that’s a goal for you.
It’s difficult for me to give you specific advice but there’s lots of ‘normal’ drinks that are safe for people on thickened fluids (eg drinks that are naturally thick, like smoothies). I really recommend talking to your speech path about creative solutions for drinks you can easily have when you’re out and about. We’re full of helpful suggestions!
They’re a bit more expensive than the big tubs of thickener, but some brands of thickener sell individual sachets. They look just like sugar packets. It’s a really discreet way to thicken a coffee, or anything really.
As for the isolation, I know it’s tough, but try to think of ways to socialise that you feel comfortable with. Connection is so important. You’ve got this!
David Crombie
I started out on thickened water off a spoon and now 18 months post stroke like nothing more than a glass of cold water. Stick in there.
Eddie Pleban
Hi, I’m 12yrs post brainstem stroke and I have dysphasia so I know how you feel, in my early days recovering from my stroke and struggled drinking 'wall paper paste' in a way I was fortunate that I had a PEG for 18 months after an 8 month stint in hospital.
I say fortunately for I had to keep my PEG clean so I cheated I would keep myself hydrated by drinking water through m PEG.
Any way while in rehab my consultant told me that my swallow was compromised and I had to take care when swallowing he also said that to drink very cold water or tea will in time improve your swallowing, for me it worked.
These days I still prone to chocking while eating or drinking but I’m no way as bad as in the early days, one more thing I found by accident is that during the night and need a drink I can drink from my sports bottle while lying on my side I can gulp and swallow without any problem.
Good luck.
