Pain/Agony

[Ellie]

Hi Chrissie,

So glad your Gran has recovered well and is back in the nursing home.

Ellie- I read up about feeding tubes and aspiration-related chest infections/pneumonia and it said that PEG doesn't decrease the risk- in fact, it increases it!

In ALS/MND, a feeding tube is not associated with an increased risk of aspiration, but it does decreases the risk. As Rachel said, giving feed or liquids through a tube should NOT be done when the person is laying flat or almost flat.

I saw the link in your post discussing feeding tubes and it's not really appropriate to compare PEG placement and use in a person with MND who cannot safely swallow, with people who are failing to thrive, have cancer or GI issues etc.

But yes, as with all surgical procedures, from the removal of a toenail to cardiac surgery, an elderly person is more at risk of complications and that goes for a PEG procedure too.

It is a complex decision for your Gran to make and I wish her well.

Take care (hope your stress levels are somewhat reduced!)

Love Ellie.

[Lynne K]

Thanks Rachel. I'll speak with my neurologist when I see her next month. Lynne

[MNDConnect]

Hi Lynne

Not everyone with MND has a PEG. Some people choose not to have one and for some people they don't experience any swallowing problems and so don't have one.

People often have a PEG fitted quite early on or as soon as swallowing symptoms start to appear. Having the PEG doesn't mean that you have to use the PEG. You can have a PEG fitted and carry on eating and drinking. This means that the PEG is already in place if and when it is ever needed. People often first use the PEG for medications as it takes away the difficulty of struggling to swallow tablets.

If you are having some swallowing difficulties then it's worth mentioning a PEG to your healthcare team. They could tell you more about the procedure so that, should you need one, you can make an informed decision about it.

Best Wishes

Rachel

[Lynne K]

Thanks Rachel from MNDA. Do all MND sufferers eventually benefit from a PEG and when's the best time to have it done? I'm not too bad swallowing. In the last 6 months a bit of difficulty half a dozen times, but nothing serious and no chest infections. Thanks. Lynne

[MNDConnect]

Hi all....me again!

Regarding PEGs, they can help to prevent aspiration as they enable people to receive nutrition without the danger of trying to swallow and so aspirate. Swallowing is a very complex process and with MND, some of the important steps can be ineffective and so food and drink travels to the lung and can cause a nasty infection or aspiration pneumonia.

There is a risk of aspiration with a PEG tube which is one of the reasons why someone should never lay flat whilst the PEG is used.

Best Wishes

Rachel
MND Connect Adviser

[MNDConnect]

Hi all

Pain and whether it is a symptom of MND or not is something that gets discussed a lot both at the MND Association and in the wider world.

The dying of the motor neurones themselves isn't painful. The effect that these dying motor neurones have on the body can be painful. So cramps, chest infection, immobility, etc can all be very painful. Pain is usually felt through the sensory nerves which are not believed to be affected by MND and so experts say that MND does not cause pain. The symptoms of MND do cause pain.

I think it's as very fine line and it's something that is often discussed at the MND Association.

Best Wishes

Rachel
MND Connect Adviser

[Broostine93]

Thanks, Lynne

Terry- absolutely agree. It must feel so strange!

The quote from one of the articles I read is below:

"About a quarter of patients will have a complication, such as tube occlusion, wound infection, pain, aspiration pneumonitis, and peritonitis, after the PEG tube is placed.16 Aspiration occurs frequently after PEG tube placement and can occur in up to half of older patients with feeding tubes regardless of whether nasogastric or gastric tubes are used."

Source: https://www.the-hospitalist.org/hosp...be-or-not-tube

Might be useful for someone to read when trying to make their mind up as to whether to have the PEG or not.

Personally, I like the idea of the PEG- I think it's brilliant for providing nutrition when one doesn't enjoy or want to eat food anymore and I think the idea of being able to administer medicine through it would be invaluable during the 'late stages'. I don't think Gran agrees (and, understandably doesn't want to think that far ahead to see the practical advantages of it). It's her choice and I can see where she's coming from with regard to 'not wanting to linger' as she puts it. I do very much worry about what's to come when food can no longer be swallowed, though.

[Terry]

Hi Christine,

It doesn't take us long to forget how to use legs, because even after nine years I think that they move like a normal person's does, automatic reset.

Can't see how feeding tubes increase the risk of any thing going into the lungs. Sometimes I don't clear the mouth completely before I put more food in and that causes problems. Getting tired when eating can also cause problems.

You don't have to use a feeding tube all or any of the time. But handy for the occasions when you do.

Love Terry

[Lynne K]

Hi Chrissie, Great that your Gran's chest infection has cleared and that she's is now out of hospital. I hope that everything works better now with the care home. I don't know about the rotunda you. mention or PEGs. Lynne

[Broostine93]

Hi All,

Gran's chest infection cleared up in 2 days and she's now back in the nursing home. She was rather fuming on her discharge day, as they'd told her she was leaving in the morning- they didn't get the transport for her until 7:30pm (I did try to tell her that the ambulances were most likely tending to emergency situations- seemed to make her feel better about it). When she got back to the home, they tried to transfer her from wheelchair to her bed using the rotunda and her legs gave way. They couldn't lift her so had to get her into the hoist. We thought that this would be the start of hoisting (and continued use of those horrid adult nappies), but she's now able to use the rotunda again (think the prolonged stays in bed, without the hospital staff knowing how to use the rotunda properly for Gran's needs and so they just stuck her in the nappies made her legs 'forget' how to stand for a short while). Glad things are 'back to normal' for now.
Devonmaid- so sorry to hear Tony has pneumonia I hope he has a speedy recovery!
Ellie- I read up about feeding tubes and aspiration-related chest infections/pneumonia and it said that PEG doesn't decrease the risk- in fact, it increases it! I was shocked to read it, as all of the professionals involved with the palliative care seem to indicate that it eradicates the risk altogether- very surprising indeed!
xx

[Ellie]

Tony has been eating and drinking things he should'nt have and ended up in A&E this week with aspirational pneumonia.

Hi Devonmaid,

Sorry to hear Tony has aspiration pneumonia - would he consider getting a feeding tube or has one been mentioned because of the aspiration?

Hope he recovers quickly from the pneumonia.

Love Ellie.

[Barry52]

Hi Devonmaid,

I hope Tony is more comfortable today. I agree with you that we often experience pain and Terry sums it up well. I think the information on the MNDA website is misleading.

Barry

[Terry]

Hi Devonmaid;

Sorry to hear of Tony's chest infection and hope that is under control now so his more comfortable.

Most of us experience bad pains at times, muscles, joints, teeth, wind, constipation, broken bones, well the list goes on and on and it's all mostly due to have Mnd.

Love Terry

[Devonmaid]

chest infections can cause a lot of pain. Tony has been eating and drinking things he should'nt have and ended up in A&E this week with aspirational pneumonia. He was getting a lot of pain in his chest on breathing. I disagree about MND being relatively painless. This is because the fact that someone's muscles etc are seizing up causes pain, which wouldnt have happened without the MND. My husband is on a pain patch, oramorph, amitriptyline and other pain meds. If you move any of his limbs he finds it very painful. Everyone is different though and other MND sufferers won't get this. But I wish I had known it was a possibility as I could have prepared myself.

[Kayleigh]

Hi Chrissie,

I hope your Gran is feeling more comfortable today and she is no longer in pain.

Love,
Kayleigh x