Can’t swallow; can’t ear and miserable

[Rayoflight123-]

Brother is currently working on swallow exercises because he lost his swallow following a brain injury.

Has anyone experienced similar and had a good outcome? What did your journey look like?

[absa]

ahhh yes.... thickened water and the joys of dysphagia...

I don't miss it

[AndrewT]

Dear Rayoflight123-,

I have no Direct experience, of this problem, however I have Encountered it- in others- a number of times. There are, as absa comments, many Thickeners, available- which give drinks both more Texture and Bulk.

Have a Word, with the 'Yogurt Ladies'- as their often known- the Swallow Feflex Team. (The Yogurt 'nicname' come from them giving Yogurt to Patients, in order to Check a Swallow Reflex). Often VERY 'Helpful' People Indeed they may, very well, suggest 'Things' not thought of before.

I know that everyone 'here' wishes your Brother 'Well' Ray please Do 'pass on' our

Very Best Wishes

AndrewT

[Catx1978]

I have swallowing difficulties too following my brain injury. I'm on a?level 6 diet because of it so I'd be interested to hear from anyone who has recovered from it as well

[Daisy_Dee]

Wishing your brother all the very best, my bro is going thru the same. Your posting has helped me because I didnt know about the yoghurt diet. Mind you my bro is peg fed... As with everything, love and compassion and being with him, will help a lot. Keep strong. There is a large community out here willing you on...

[pozza40]

My husband had great difficulty with his swallowing, and it has taken a while to get to the point where he is now eating a near normal diet. He was peg fed for 6 months and during that time he had frequent swallow tests with yoghurt.in the early days he failed those but preserved and once he managed yoghurt he soon moved to puréed food then lumpier.I would say it was about 18 months before dieticians where happy to remove peg tube and now he can eat pretty much anything.

I hate to say it,as I know it’s hard not knowing how long it’s going to take or whether it gets better,but it takes time and patience.

Sending you and your brother, all my best wishes

[jennylowe]

My son had brain bleeds 8 years ago he still can’t swallow and is peg fed, he is really disheartened about this, but there doesn’t seem to be any other treatment other than what you have mentioned above. He is 14 and very isolated because of this, he often says to me “will I ever get my swallow back”

[14th]

My daughter had this issue following a brain injury 8 years ago. We did the usual with thickened fluids etc.. slowly reducing the thickener. She now drinks normal fluids and can eat anything(including meat) so do bear with it. We never dreamt she would ever eat again following her accident and now that part of her life is absolutely back to ‘normal’

[Hidden]

Hi Rayoflight123,

Yes, my daughter had a good outcome. The speech and language department gave her sheets of exercises to do about 3 times a day, involving large lollipop sticks that she had to put in her mouth and try to move them, to try to get the nerves working again. After several months the facial palsy healed, which meant the eating/swallowing was back to pre-TBI.

I wish you and your brother all the best, and keep up with the exercises - they really do help 🙂

[Dogsabighelp]

hi can only add to all other posts really.they really are so clever these o/ts.the thickeners in fluids etc encourage the swallowing process,it just takes time.my son had trachcy/peg etc.i sat with him yesterday while he was ordering todays meals...he us having ham salad,coleslaw,potatoes for lunch and chicken kiev with rice/chips for evening meal.not sure if i was more surprised at what he can now actually eat or that he ordered a salad?!!!i dont think i can ever remember him eating "green stuff"unless it came from well know burger outlet..anyway,theres the nature of a brain injury....keep the faith,just a matter of relearning how to chew,swallow safely,therapists know their job..best wishesxx

[Skulls]

Hi Ray’,Yes, I followed the thickened cola pathway. That was disgusting. They stuck me on a no solids diet which meant all I could choose from were varieties of sludge with lamb, chicken or veg as claimed components. I was eventually freed from these constraints when I could prove I wouldn’t choke if fed proper food. I then discovered the halal menu and that was a game changer. The best hospital food available! Still, the weight fell off me whilst in hospital. Good luck to your brother.

[Trullite]

My son (now 32) had a severe brain injury over 6 years ago plus a cranial nerve palsy that left him with weakness on the right side of his tongue. He was PEG fed for nearly a year whilst trying the thickened fluids and very soft diet route. He also had a lot of issues with having a weak suck. Pat Saunders straws with a valve helped this.

Once he was able to talk again, singing and breathing exercises really helped with lung function, speech clarity and control. He still eats 'at risk' and avoids rice, whole nuts - and struggles with carbonated drinks. He does have a very good cough reflex!

He is still making very slow improvements. We never give up on any of his rehab - it is all so frustratingly slow.

[F1951]

My husband did'nt eat or drink for about 15months l noticed he wasn't dribbling so he was swallowing his saliva , got in touch with tbe salt team she came out and it all started with a very thick drink the consistency of wallpaper paste.with the salts help(speech and language) l weaned him like a baby, eating small amounts of baby rice etc it took me 12 months , he's now on a soft diet sndThickened fluids, so there is a light at the end of the tunnel, good luck.