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Problems swallowing. Any advice or experience?

Hi all,

My mum is 73 with severe MS. Recently she got a nasty infection and went into hospital. To cut a long story short, she survived but has since been suffering with problems swallowing. (a big part of me is just grateful to have her around a bit longer). Whilst she was in hospital her swallowing seemed to be improving and she was able to eat small, regular amounts of pureed food.

She was discharged yesterday back into her nursing home. Today the nurse has rung me to say that all they’ve managed to get down her is a carton of Fresubin (high calorie milkshake thingy) via a syringe. My sister is with her at the moment. Has anyone got any advice or experience of this? Is there any physio that would help? I don’t know what will happen next as if she begins to dehydrate then would that mean back into hospital or would a nursing home be able to deal with this?

I really, really don’t want to see her on a feeding tube (bet I’m not the only person to have ever said this). MS has robbed her of so many things, eating was one of her only pleasures.

Thanks for any help.

Hi there!

My mother is 57 with severe MS too.

I dont want to scare you at all just want to tell you my experience and give you my advice.

Id say from about end of 2007 to Feb 2009 we were fighting to keep my mum eating and drinking. We pushed it for as long as we could and to be fair to far. My mum began to loose interest of food and went down to 5 stone but it was her call to get the feeding tube inserted as you are aware its life changing and something we were all very scared of and especially her. But she got to a point when she knew she needed it and we had an appointment booked and we were prepared. So end of Feb 2009 we had everything booked and we were all ready as a family. Before this happened my dad took my mum on holiday where they went to a fantastic hotel and had their own personalised chef that pureed all mums food for her and had a wonderful holiday.

She came back and a few days later became un well. We did not recognise the signs of chest infections at that point and how serious they were as mum had never had one before. We called the GP and he came up and gave her cough syrup!!!

Next day were at a and e as she couldnt breathe properly and was admitted straight into ICU with Pneumonia and Septasimia. Was ventilated and had a tracheostomy fitted and we almost lost her. 4 months in ICU and 1 month in a normal ward it was a mirical she survived.

My advice to you and your wonderful mum that you know when the time has come to get the feeding tube. Like every step of this disease you adjust and get on with it. We thought this feeding tube was going to be the devil and be so heartbreaking. But its saved her life and has become the norm to us! We are in ouplic places and she needs water and we dive it to her without a secont thought! Its so easy. And honestly if we could go back in time we wouldnt have been so scared and just got on with it. Us prolonging things nearly cost her her life. We all went through the most traumatic experience and saw things that people only see in their knightmares when we almost lost her.

I am here if you want to talk properly about this. I promise it seems daunting, but her health is so important and it sounds like you are in the place we were. Dont put it off.

I send you so much love- i know exactyly what you are all going through.

4 years down the line my mums still fighting!!!

Hi, I am sorry to see no-one else has replied to your post hun.

I have no personal experience of this, but there is an NHS dept which deals exclusivly with Speech & Swallowing problems.

I would have thought your mum`s home would contact them on her behalf.

Perhaps you could seek them out yourself, eh?

luv Pollx

Hi, I’ve just seen this message, sorry at not seeing it sooner. Has your Mum seen a Speech and Language Therapist? These are the best people to assess swallowing. If she is struggling to swallow thin liquids such as water or milkshake she may need a thickening agent or intravenous hydration in the short term until her swallow has been assessed. Hydration is a key issue in the short term. Has here awareness reduced? This can be a sign of dehydration. Feeding tubes are not nice, a good, tasty meal is important to us all but if she is at risk of aspiration ( food entering the lungs). Then she will risk getting an infection and this won’t help her at. I’m not a dysphagia (swallowing) specialist and I would advise seeking one ASAP. The nursing home I’m sure will have links with one. I hope this gets sorted quickly for you, give me a shout if I can help anymore. Sara x

My wife has had ms for 20 years now, and had a tube fitted after me struggeling on for monthe trying to feed her and swallowing badly often .The peg tube helped me look after her so much she has a liquid feed but at first managed mouses and she could still eat if she could manage ,after the peg was fitted ,.Please dont wrry about a peg it really helped my wife she has had one for two years now, its tiny, and just so easy, as an extra,feeding/ drinking option.

My wife has recently developed swallowing problems. She was given some thickening powder to put into drinks to make them easier to swallow, although she still chokes on solids from time to time.

Hello my husband is 47yrs and has speech and swallowing problems its only in early stages at momment and can cut his food up for him making it easier.But like someone said swallowing problems are more common in advanced cases although hubby has just been diagnosed neurologist thinks with all scaring to his brain and spinal cord he has had it years.Waiting for diagnosis on type of ms xxx julie,PS i am so sorry about your mum songwhistler i know how upsetting it is to see someone you love go down hill,xxxxxx julie