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Multiple System Atrophy Trust

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Swallowing issues

Jillhb profile image
Jillhb
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Hi all

Wondered if you can help, Dad on fork Mashable diet and thickened drinks. Just been rushed into hospital this week with another uti, just can't seem to get them under control😢. Since been ill on Thursday , trouble swallowing tablets and jaw is wobbling a lot of the time , any ideas ?

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Jillhb profile image
Jillhb
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10 Replies
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You may find the hospital suggesting PEG fitted. Xx

Take care.

Hi, speak to the hospital about a PEG and also chat with a speech and throat therapist as they advise on PEG. Sounds like your dad swallowing has got worse and he can't define between throat and windpipe.

PEG maybe the route before he is to unwell to fit it

Paul

Yanno profile image
Yanno

Hello Jill. UTI's are horrible things, people underestimate just what a bad effect they can have on one. Your MSA nurse will be able to explain better but one of the issues with MSA can be fully emptying the bladder and so using a catheter to ensure it is empty may stop the UTI's. Your doctor should be able to arrange for the continence nurse to visit to do a scan of the bladder to confirm the extent of urine retention, The hospital may be able to do this for you.

You will see on another post some comments about fitting a PEG (or not). It's a very personal decision but we have decided that it's the best thing to do whilst Jackie is well enough. We were quite shocked how quickly she went downhill when she had a couple of UTI's over Christmas. She is back to her happy self now and eating well but thought we would take the procedure as a precaution. We see the PEG is a way of maintaining choice in the future not removing it.

We hope all goes well with your Dad. Take care, Ian

Beverley52 profile image
Beverley52

With the uti, there is a quite simple remedy, that helped my husband enormously. It was suggested by his neurologist. And worked. It kept the infections under control and he was never at the doctor for antibiotics again. Try it. It worked for us. Take vitamin c every day for2 weeks. Then stop that and take potassium Citrate every day for 2 weeks. It came in a capsule form and I opened them and mixed it in his breakfast every morning. I found that in a health store on line. Though it may be available in a somewhere like holland and Barrett.its not expensive. Just keep swapping over every 2 weeks.

I see that a catheter has been suggested,. In our experience that made no difference whatsoever as regards UTIs. Billy had a catheter for about 4 years. It made no difference to the small mount of urine retained. It only meant he never had anymore accidents, and so retained some dignity, and I could see exactly what was going on with his urine.

What the combination of vitamin c and potassium Citrate does ,is change the acid/ alkaline balance in the urine, so that the common bugs that cause the uti, never get a chance to multiply enough to cause a problem. Hope this helps for the future.

Thinking of you and all who are coping with awful, awful condition. Hope your dad is home soon.xx

Jmt24 profile image
Jmt24 in reply to Beverley52

That sounds like a brilliant and safe, simple idea to try. Thanks for that. My husband is catheterised and has only had one infection since then, but it really made him ill and set him back functionally for a long time.

Beverley52 profile image
Beverley52 in reply to Jmt24

Hi, hope it works for you.Billy was getting UTIs every couple of weeks till we tried this. It was like magic. Had a bit of trouble at first sourcing the potassium Citrate. Apparently it's the main ingredient in cistitis medication,but buying that all the time was quite expensive. I found an online health store called Bodykind. And got it there. 90 capsules for €10. So probably only about £5/6 for you. Good luck.

FredaE profile image
FredaE

Potassium citrate or mist.pot.cit. is a traditional remedy for cystitis. It does not cure it but keeps it at bay. You are not supposed to take it indefinitely which is presumably why your neurologist says to alternate it with vitamin C.

More recently real cranberry juice has been used a lot for the same purpose. (NOT cranberry drink which is watered down and with other flavours - always pays to read the labels - just like orange juice drink which is not what you think it is)

Also drink enough water.. what is it about us as we get older that the only way to get us to drink enough is to hold our noses and pour it down our throats.

Freda

Marie_14 profile image
Marie_14

Has anyone tried using convenes instead if a catheter? My husband never had UTI thanks to using them.

Marie

budsey profile image
budsey in reply to Marie_14

Hi Marie What are Convenes? Please.? I use a Catheter and have just out of hospital with UTI

Budsey

Marie_14 profile image
Marie_14

Budsey

Sorry for asking a daft question but are you make or female? If you are male you can use a convene. If female they don't as far as I am aware have great ones. Please correct me anyone if I am wrong.

If you are male It is like a sheath and so rolls on with help. You can also get adhesive to ensure it stays on and a spray to help take it off. You need to see your continence nurse who will decide what size you need. They are delivered to your home and free on the NHS.

If you have any other queries please come back to me?

Marie x

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