Hi all.
My wife is struggling to swallow as time goes by and the next major step would be a PEG.
I want to know from contacts who both use one and carers who have users.
What are the pros and cons?
Things to watch out for?
Restrictions? Benefits?
How do carers cope with no meal times?
Family?
Friends?
Entertaining?
Day to day issues?
The more I know the more we are prepared.
Thanks
Paul
Geoff and I will be interested to hear replies to this post as we are getting to the same point. Geoff has begun to have swallowing problems, but his problems with chewing and using his hands are contributing mostly to meal times taking at least an hour.I believe that having a peg doesn't stop you eating what food you want but doesn't have to be the main nutrition.
Thanks for asking the question that i was about to pluck up courage to ask Paul.
Diane x
Hello Paul
As you know, Jackie has looked into this and is starting to go down the road of getting one fitted. We visited the specialist in Worcester who was charming. She gave us reassurance that Jackie could get one fitted very quickly should she need it but the advice without doubt is "sooner rather than later".
I wonder if the guys from MSA Trust in this community could help with any comments from their experience on your list?
Take care, Ian
I haven't reached that point myself so I'm also interested in the answers.
O well onward and upward. Glenn
Thanks Glenn.
As I learn more I will post.
Great to hear off everyone.
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My husband is now on puréed food and is managing at the moment. He too has coordination problems which is making getting the food to his mouth much slower now.
My experience with alternative feeding methods comes from caring for a child who initially had a nasal gastric tube, and then a peg. I found both methods easy enough to manage. Replacing the tube was fine and there are systems to ensure that the tube is in the correct place which are ok to do at home. The peg was good, we had some issues - it came out one night and there is a very limited time before the hole starts to close - we didn't make that! But it made going out easy as we had a pump with it.
Hope this is some help. Jenny
Hi Paul,
The MSA Trust produces a fact sheet that covers a lot of the questions you have asked about PEG feeding. You can download the fact sheet here - msatrust.org.uk/support-for... or we would be more than happy to post you a copy if that's easier, just give us a call on 0333 323 4591. If you would like to speak further about the pros and cons of PEG feeding please contact one of our MSA Nurse Specialists at nurses@msatrust.org.uk.
Best wishes,
Emma
Hi Paul, just recently we were looking in to going down that path. Unfortunately, the lung function test wasn't good (only 27%) so this route is no longer an option for her. In her case it would have to be a nasal gastric tube.
Hi all an update about Sue and PEG.
We have spoken with our GP, Nurses, Therapists and some users about the PEG and decided to move forward with one. The main driver for us is that Sue has no sence of taste or texture and as food is a pleasure, Sue has no enjoy and thus need. Sue is now struggling to swallow and can not stand any meats. To get through we are using slim fast shakes as they are a high protein diet supplier to which helps keep energy and also has all vitamins and minerals.
The PEG will take the mealtime pressure off as I will not have to try to get her to eat and mealtime menu is becoming a real issue for us. For me I now accept I cook for myself, which was hard as I always cooked for the family and eat what we all decided rather than what I wanted....
We are due a doctor's consultation on 22nd July and we will let you know.
The one main thing we learned...don't wait....
Agree strongly with your last comment. If you are going to have a peg do it sooner rather than later. Although it is hard to think of something fed by tube as better nutrition than REAL food the main issue seems to be quantity which can be impossible to acheive when eating gets so slow and difficult. By the time it becomes obvious that a peg is the only answer it can often be too late.
Freda
We have also gone down this route and see the nurse who deals with PEG's here on Wednesday. It is the speed that Geoff can coordinate his chewing and swallowing that is the issue. Even swallowing drinks is an issue. Dinner with tablets and a cup of tea took over 2 hours last evening! We will keep you posted too.
Diane
Hi Paul. The Speech therapist has written to the GP to get all the tablets in liquid form but things have rushed on...... We saw the nutrition nurse yesterday(12th) who agreed with the dietitian and speech therapist that it would be helpful for Geoff - she had already got a letter with an admission date which is just next Wednesday (19th). Gosh, didn't think that it would be so quick. Will keep you updated!
Diane
Diane,
I am sure everything will go well for you both.
Luckily my Sue condition is slow in progressing but we have out consultant appointment next week.
Good luck.
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