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Melanie_MND
23rd March 2015, 17:37
We have redeveloped our care information sheet on on PEG and tube feeding, which is now available to view online:

PEG and tube feeding – Making the decision (http://www.mndassociation.org/Resources/MNDA/Life%20with%20MND/information-sheet-11-peg-and-tube-feeding.pdf)

Best wishes,

Melanie

pete
23rd March 2015, 18:37
We have redeveloped our care information sheet on on PEG and tube feeding, which is now available to view online:

PEG and tube feeding – Making the decision (http://www.mndassociation.org/Resources/MNDA/Life%20with%20MND/information-sheet-11-peg-and-tube-feeding.pdf)

Best wishes,

Melanie

Hi Melanie,
That's the best guide I have read so far, much less biased and what I consider to be a fair assessment of the procedure can involve ,so a definately better guide.

Pete

Rainey
24th March 2015, 11:42
I have made the decision not to have a feeding tube. Is there anyone else out there who made the same decision, if so how are you doing? Info is available if you DO have the tube but no info if you DONT! I realise starvation and weakness is the order of the day but any other info? Love to hear from you. Rainey

crackers
24th March 2015, 12:02
Rainey this is a sensitive one.
I have made the same decision as you but I have ALS. If my condition had been Bulbar it may have been different? My decision is based on not wishing to prolong suffering for us all.
I am very careful when eating , soft food and bending the neck forward when swallowing.

Take care

Kelvin

willsandco
24th March 2015, 13:08
I had the PIG procedure in Sheffield in January, simply and solely because it seemed the common nonsense thing to do to be able to take in liquids and sustenance when your swallowing muscles finally pack up! I am not using it, except for the twice daily flush feed of water - I had it put in as a safeguard. The decision was difficult but I am pleased now I have the option to use the tube But it is horses for courses. People just consider their own circumstances and make their own decisions, don't they? Joycie x

mik
24th March 2015, 13:34
hi,
i opted for the PEG quite early on and i'm glad i did. The idea of dehydration and starvation is just something i couldnt comprehend. I'm not trying to antagonise but for those who have decided against any help with feeding i was wondering why?
mik

Springtime
24th March 2015, 13:46
I have made the decision not to have a feeding tube. Is there anyone else out there who made the same decision, if so how are you doing? Info is available if you DO have the tube but no info if you DONT! I realise starvation and weakness is the order of the day but any other info? Love to hear from you. Rainey

My husband decided not to have a peg, he was constantly being mithered about the need to have one fitted from November until finally after many times quietly saying no, he one day got quite adament and more forceful and more or less shouted NO I don't and won't have one! Well it worked, everybody stopped bothering him about it and he became more relaxed again. We have the support of the hospice, who respect his decision.
Myself and family totally support his decision because we saw how anxious the thought of a peg was making him feel. I don't know if he has made the right decision. It's a very difficult and individual decision to make.
springtime

ccinjersey
24th March 2015, 14:03
I think it’s very forward, and courageous to undergo the procedure, and live with the adjustments of having a tube feeding. I also think it’s very courageous, and resolute to decide not to have a tube feeding and live with the challenges without it.

A brave bunch :)
xoxox

Springtime
24th March 2015, 14:09
Yes Cc I think you have that......spot on .

Many Hugs to you lovely lady xxx

.

Jan
24th March 2015, 14:35
I am dithering between having and not having to be honest, I am waiting for my appointment with Consultant Gastro and see what that brings

LisaJade
24th March 2015, 15:03
I have made the decision not to have a feeding tube. Is there anyone else out there who made the same decision, if so how are you doing? Info is available if you DO have the tube but no info if you DONT! I realise starvation and weakness is the order of the day but any other info? Love to hear from you. Rainey

Hi Rainey,

You can find some more information about what support you can access if you choose not to have a feeding tube fitted on pages 5 and 6. Here is the text:

What happens if I decide against a feeding tube?

Your muscles will continue to waste whether or not you have a feeding tube. However, without a feeding tube, you are likely to lose weight and become dehydrated as eating and drinking becomes more difficult. You may worry about how this will feel, but thirst and hunger usually become less intense as your MND progresses. You may find it reassuring to discuss this with a palliative care specialist. Ask your health and social care team for a referral.

Once you have considered the options, you can make an informed decision. If you decide that a feeding tube is not right for you, your nutrition nurse, dietitian and speech and language therapist will still support you. They will advise about food, drink and prescribed supplements to suit your needs.

Your palliative care team will also support you, and advise on any medication that may be needed to relieve hunger or thirst as necessary.
This advice may include adapting food textures and fluid consistencies to help you continue to eat and drink for as long as possible.

For easy to swallow recipes, see: MND Association Recipe Collection
For more details about eating and drinking with MND, see: Information Sheet 10 – Swallowing difficulties

If you wish to ensure that you do not have a tube fitted, even in an emergency, you can state this in an Advanced Decision to Refuse Treatment (ADRT).

I hope this helps.

Kind regards,
Lisa

Rainey
24th March 2015, 15:47
Thank you Lisa, that was very helpful. I was officially diagnosed with Bulbar in April 2014 but we worked out that I had been having symptoms for at least 18months previously. In the past 3 months my condition has deteriorated dramatically in legs, arms, feet and swallowing, although I still manage quite a lot of sloppy foods and thickened drinks, although to be honest, my husband insists on me having food and drink, I personally am not bothered! All those years of trying to cut down on calories and now it's important to shove as many of them down us as we can! My thinking was, and still is, that not having a tube would not prolong the disease once it got really bad. So far, so good!! Thanks to you all for your thoughts. Rainey

Jan
24th March 2015, 16:47
That really is helpful Lisa, my feelings at the start were to try to keep going and drinking nutrition through a straw if needs be, I am well used to gels and the like being a former long distance runner. I've also had some good advice from Terry. I have a swallow x-ray coming up this Thursday and shall think more about the PEG then. Its not that I am totally against it, more that I am troubled by it as hubbie is very squemish and I just know that he won't be able to care for it when I am unable to

pete
24th March 2015, 20:58
I have made the decision not to have a feeding tube. Is there anyone else out there who made the same decision, if so how are you doing? Info is available if you DO have the tube but no info if you DONT! I realise starvation and weakness is the order of the day but any other info? Love to hear from you. Rainey

Hi Rainey,
So far I have managed to survive Bulbar for seven years, eating carefully and slowly I eat most foods and enjoy them, I too refused any tube feeding, at day one, nothing I have read has changed my view ,my thinking was ,I can't talk, walk, or play with my one and only grandchild who I adore, when the day arrives when I can no longer eat and taste food ,pretty much that's game over for me ,I don't want to linger once my quality of life has gone ,I love my wife and daughter too much to make them have to see me deteriorate to a point where I exist trapped inside a body that no longer functions. I have so many wonderful memories of the years before MND

Jock
11th June 2015, 14:44
I have a home visit with a PEG nurse in 20 minutes. The problem is more down to loss of appetite than swallowing issues. I'm favouring a PEG because I feel there's still some life in me worth making more comfortable. The link at the start of the thread no longer works.

Dude
11th June 2015, 15:27
I made a decision shortly after diagnosis not to have a feeding tube. I made an ADRT ( also called a living will ) to save my kids any decision on what they feel is best for me. I'm 66, diagnosed Dec 08 (symptoms at least 1 year prior). I can still swallow pills and have 5 Ensure drinks each day and endless brews. With all the encouraging medical advances lately I may reconsider a feeding tube. Dude.

Ellie
11th June 2015, 16:10
Hiya Jock,
Could the lack of appetite be down to constipation?
Hope the PEG Nurse had an objective discussion with you. I am a supporter of PEGs, but understand not everybody wants one. They can make life easier and less stressful for both the pwMND and carer, which has to be a good thing.
I’ve had a MicKey button since 2008 and it has definitely made a positive difference to my quality of life.
Take care,
Ellie x.

Jock
11th June 2015, 16:23
I'm booked for a RIG a week Monday.

Hi Elle - Could be. I will get my hospice nurses onto that. Cheers.

Candle
11th June 2015, 18:27
Hope it all goes well for the RIG.

Terry
11th June 2015, 18:50
We have redeveloped our care information sheet on on PEG and tube feeding, which is now available to view online:

PEG and tube feeding – Making the decision (http://www.mndassociation.org/Resources/MNDA/Life%20with%20MND/information-sheet-11-peg-and-tube-feeding.pdf)

Best wishes,

Melanie

Hijack

This is the new link:-

http://www.mndassociation.org/wp-content/uploads/2014/07/Information-sheet-11-PEG-and-tube-feeding.pdf

Jock
12th June 2015, 09:09
Cheers Terry and thank you Candle.

If the RIG doesn't go then I'm back the following week for a PEG - Beds allowing of course. :)

Candle
12th June 2015, 09:12
Oh the dreaded bed situation. I'll keep my fingers, toes and eyes crossed.

willsandco
12th June 2015, 09:43
hoping that all is well, jock. Keep us updated Love. Joycie xx

Night walker
13th June 2015, 00:00
Good luck Jock x

Ellie
14th June 2015, 13:34
If the RIG doesn't go then I'm back the following week for a PEG

Jock,
I'm just curious to know why the nurse suggested having the RIG procedure as the first choice procedure. Usually the PEG is the first choice option: any idea?
Nosey Ellie.

Steve
14th June 2015, 13:41
yeah, a peg is more risky with breathing probs that's why you do a rig/pig.

Jock
14th June 2015, 14:08
yeah, a peg is more risky with breathing probs that's why you do a rig/pig.

Yes, breathing/swallowing was the reason given. Thank you for the best wishes. Friday we confirm transport and a week today we confirm the bed.

Ellie
14th June 2015, 14:15
Bringing you back for a PEG if they can't do a RIG doesn't make sense though. Better breathing is required for the PEG procedure.

Anyway, hope it goes well for you Jock x

Jock
14th June 2015, 14:27
Aye, I hear you there on that point of logic Elle. Bangor hospital prefer the RIG in my situation. I'm going with the flow so it's either up the nose or through the mouth..

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