Not eating

[MF31]

Would be so grateful for some advice, will be taking my husband to see neurologist on Thursday he is eating very little and not drinking apart from small amounts becoming very frail. heartbroken to see how he is going downhill so fast, does anyone think a peg feed would help and maybe I should mention to neurologist when we see him. Should also mention a lot of the non eating is he just doesn’t want it. Thanks in advance to all who maybe help and god bless all with this struggle. Jill

[FredaE]

if he is very frail it may no longer be an opton. No limits in what you say to your medical advisers.l

[Hellebelle]

Dad said that he lost his sense of taste and so eating wasn't a pleasure for him anymore. He still seemed to enjoy certain things such as trifles and mousses and egg custards, so we gave him those and tried not to worry too much about what he had to eat. We just gave him what he fancied. It's a difficult one but I think if you have any questions about a peg then it's good to get advice. Helen xxx

[MF31 in reply to Hellebelle]

Thankyou for reply. Peter like jelly trifle and puddings maybe I need to go down this route I just worry as he has lost so much weight.

[Diane831]

If his reluctance to eat and drink is just that it is too hard and slow that it taking the pleasure out of it then a PEG would work well to take away the pressure to have enough to eat and drink to keep well. But as others have said, it depends on how frail he actually is as to whether they will consider him for the procedure.

[MF31 in reply to Diane831]

He does some times have difficulty but at the moment I am struggling to get him to eat much or drink he just doesn’t want it, blood pressure low I feel as though I’m struggling at moment more so because we are about to start alterations to house but will be good for us both when done he will have a wet room. Thankyou for taking time for us.

[Westcott in reply to MF31]

I discussed PEG feeding with Kàtie oñe of the Trust nurses because I'm having troublè eating . Just not huñgry. Onĺy thing I feel like eating is chocolate! Katie's vièw ìs the sàme às the surgeon who operated twice on me before the beast reaŕed his uglý hèad, it's better than nothiñg and at least has ĺòts of calories!! I imagine the view òf the desseŕts you're planniñg wòulď bè the same. Good luck with that and take care of yourself. Love Suexx

[AMBD]

It doesn't matter what he eats as long as it's got calories and the more the better! My husband was a pudding man as is his daughter, now in final stages of Huntingtons. Neither had/has a PEG, through choice. Sending love.

[Paul_and_Sue_Wood]

My Sue has the same in that no taste or sense if smell, so what's the point in eating. It was at that point we discussed a peg feed system and after chatting with fellow sufferers we had a peg feed system.The best thing ever. It feed all the balanced nutrition you need for a day in a few hours.

The pipe is tucked away when not in use, all meds go through it also.

We are now 12 years with MSA and still going. If we hadn't had it done she would be here.

But you have to be healthy to have it done as it is an operation.

Good luck.

Paul

[MF31 in reply to Paul_and_Sue_Wood]

Oh it does sound a really good option to look into I feel with very low blood pressure and lack of nutrition is adding to the amount of falls he has been having, it’s all very worrying to know what to do for the best just want to give him the best chance.

[binnyrox]

Hi I was immensely frail after 2 hospitalisations for aspiration pneumonia

Was bed bound, problems swallowing food and saliva

However the PEG was a game changer

I got the nutritional requirements from the prescribed milk with added home made blended food

My weight returned and I can now walk with assistance albeit short distance.

Oral feeding is not an option given my disease progression but I have a pretty good quality of life with the strength to do things I like.

I have no regrets at all with the PEG

Hope this helps

Best regards and take care

[MF31]

Oh that is so good to hear will most definitely run it by neurologist on Thursday as what is worrying me is the fact he just doesn’t want to eat and drink as Parkinson’s nurse who visited us said maybe brain not telling him he wants drink she visits msa patients as well.

[Crumpetthecat]

No harm in asking but they do weigh up viability and quality of life. We have been advised that we qualify but we are having issues with the referral. I hope it’s a positive outcome for you both but if they deem him too frail and not enough quality of life they won’t allow it. Good luck 🤞🏼

[TK-67]

There are no easy or right answers, we discussed this with mum, it was very much her decision after speaking to the consultant. It is a very personal decision and we took mum's lead that it wasn't something she wanted.