Eating Question

[Tess]

At what point do you research or enquire into feeding tubes etc? (No need for this now but being vigilant)

Do you wait until there's a choking incident to know that food isn't going down anymore or does this tend to be gradual? Would be great to hear from those who took the transition.

Tess x

[Ellie]

Never too early to research the issue Tess - put Feeding Tube into the search box and you'll find plenty of threads on it. Also here's the MNDA Info Leaflet on feeding tubes:

https://www.mndassociation.org/app/uploads/2019/03/07B-Tube-feeding.pdf

No, it's much better to have a tube before swallowing causes coughs and choking episodes. The swallow doesn't tend to disappear in a few days but often a few weeks can see quite a change, which is why it's good to research and know the very early signs, bearing in mind waiting times for the procedure.

That said, if your BF has no issues atm, it probably isn't a cause for concern but you're right to think of it.

The Neuro and/or SLT will keep an eye on him at his regular appointments too.

Take care.

Love Ellie.

[Stonehengeman]

Hello Tess, I was diagnosed with PBP in Jan 2018. At that time I could swallow without too much difficulty and my speech was still OK as long as I spoke slowly. I have now lost my speech but can still eat "normally" as long as everything is chopped small or minced though it takes me twice as long.
I had advice from the Neurology Team about when to have a feeding tube fitted especially in the light of weight loss, as if too much is lost a tube cannot be fitted. I decided to have one and a RIG was fitted in August last year. I have not used it for feeding yet (It has to be flushed daily). It was replaced with a low-profile tube earlier this year, which is much more manageable than the RIG.
My biggest disappointment with the tube is that I have suffered seepage around the tube so it has to be cleaned around daily and a gauze pad inserted around the tube.
With that experience I wish I had delayed longer before the tube was fitted, but that is with hindsight. I have always been a sun worshipper and I am now concious that the sight of me sunbathing showing the tube can be upsetting for some people. But at 81 I am past worrying about it!

[Tess]

Thanks for your responses there. I'll definately have a wee read at some point soon- just to be in the know.

Stonehengeman definately keep enjoying that sun, I'm sure you've seen plenty of sights sunbathing in your time so you're right in saying to be past caring.

Tess x

[Banned]

It is so important to get a whole genome test. It can answer so many important questions like this one.

PEGs are intrusive, prone to infection and the enjoyment of eating is taken away.

I can only talk of my experience to illustrate. I was strongly advised in 2010 to have a PEG fitted, '... Before it gets too late'. Piling on the pressure. I refused, at that time I reckoned, if my time is up, then my time is up.

I have DCTN1 gene MND. I cannot talk and struggle to swallow. Food often penetrates the epyglotis and I may have aspirated food over the years. My lungs are compromised yet reflexes are brisk. However with this type of Upper Motor Neurone MND, I survive.

[matthew55]

I have been living with it since January this year and I am on my 6th day with a PEG. I can still eat and drink almost normally but, my god, what a change for the good it has been? Breakfast is sorted! x

[denise]

hi everyone
after hospital appointments had been cancelled we had a phone call from my husbands doctor and he suggested that he have a peg fitted. i wasnt sure to be honest. i had looked on here at what was being said by everyone and decided yes he should have it done. the date for the appointment was set by the hospital. my husband should have had it done today but yesterday he refused point blank that he was not having it done he can still eat and when he cant eat he will die. i feel the doctor should have explained to us face to face the pros and cons and i wish i hadnt had to make the choice on my own in the first place. at the time when i said yes it was because i was worried that newly made appointments might well be cancelled again. i just hope he has made the right choice. this is not easy. i tried to explain that its better now before his weight drops too much. that the extra nutrition might well stop him feeling so tired. but no, he wasn't going to have a tube fitted and that was it. we have another appointment with the doctor soon and i am going to make sure we discuss these things properly.
denise

[Tess]

It is so difficult to know the right timing with any of this and I completely understand his point of not wanting to do things until he really has to. It's horrible looking ahead sometimes and I do feel that when a procedure or new piece of equipment is involved or introduced it is definitely a next step in the process and takes the mind alot to get used to.
Any time the OT hands us some sort of new gadget, shower chair or bed equipment I have to gulp as it's scary that it's a next step in a direction that no one wants to go.
But similar to you I try to explain to my partner that its for his comfort and convenience to make things as 'smooth', pain free and hassle free as possible.
I think you're right to get as much information as possible from the Dr before proceeding and definitely the pros and cons will build a better case in both of your minds at least.

Tess x

[matthew55]

Seriously I don't get people's objects for. PEG. I was sedated and I don't remember anything from the op. 9 days in and I can sleep comfortably on my stomach. I use a syringe as it is soooo easy.

[Ellie]

Some folk would rather not prolong their lives - maybe they're older, have other stuff going on, have ethical objections, don't want any interventions, are afraid etc. Ours is not to reason why but to acknowledge free choice...

[matthew55]

I can seriously say that have made provision for a personal decision to end my journey before the actual end. That done I have been a lot happier since. x

[nancy]

Hi all, my mum was offered a peg when she was diagnosed with mild swallowing difficulties but she refused, anyway she tried to take her medication which went into her lungs causing aspiration pneumonia, she died 10 days later. I would advise anybody with swallowing difficulties to have a peg fitted. i'm still grieving her loss and i wished she'd had one fitted but she wouldn't, she was always hoping the diagnosis was wrong, anyway i hope this helps some people.

[Ellie]

Welcome to the forum Nancy.

I'm sorry to hear of your mum's death - heartfelt condolences to you.

Thank you for posting.

Take care.

Love Ellie.

[Coxl3]

Hi Tess ! I’m 3 years with ALS , the peg has been mentioned to me also . At 40 years old I simply cannot move to that next step either x I totally understand your partners feelings on it as it’s a radical and very poignant stage of progression of the disease . I know some day I’ll accept it but for now no .

[denise]

i think stephen might be coming around to the idea of the peg but we will have to see how it goes with the doctor. i think if it suddenly appeared in place over night then he might be ok with it but i think its the whole idea of having it done. when you think how many of us put of going to the dentist never mind this. i read what matthew had to say about his lamb casserole and putting it down the tube - well that was certainly different. i suppose what nancy had to say about the opportunity for infection when the food goes in the wrong direction is worth thinking about.
slight change of subject but during christmas my family suggested a wheel chair and at the time i thought oh my goodness imagine putting that infront of stephen. how will he feel when he realises this might be the next thing. now he is having giddy moments and already 2 nasty falls. my daughter has got him some walking poles to help with his balance. how long before we need to get a wheelchair and then what's next? he looked at the mnd paperwork yesterday, as i wanted him to get involved with what he needs to think of next, and he just said 'i am just going to get worse' hell it really broke my heart.
matthew i would like to ask, if you don't mind, but what have you decided as your final step? sorry if you don't want to answer its ok.
love to everyone
xxxxx