Chewing and swallowing issues

[Lynne K]

I can’t chew any longer and can’t swallow pills so had to take them with vegan yogurt. I’ve just had 2 scrambled eggs, easy except hands weak. I’ve bought a vegan meal substitute from Amazon but it won’t be delivered until Friday.

I’ve got an appointment with Wythenshaw breathing team next week (12th), and hope that they don’t cancel with all the Greater Manchester Hospitals having difficulty meeting appointments and that they get me a PEG urgently, otherwise I’m going to waste away.

What did you all do with similar difficulties pre-PEG? I’m dairy intolerant so makes finds meal substitutes harder. Xx

[matthew55]

Sorry to say this but it illustrates the need to get a PEG early. If only for peace of mind. ✌️🙏🙄🤗xx

[Lynne K]

Sorry to say this but it illustrates the need to get a PEG early. If only for peace of mind. ✌️🙏🙄🤗xx

Yes true Mathew but I’m worried now xx

[matthew55]

You are in my prayers tonight. 🙏

[Lynne K]

Thanks Mathew.
My speech and language nurse is coming Monday at 10.30am xx

[LindaB]

Lynne K some Ensure drinks might be dairy free? Could your hospice team offer advice/prescribe?

[Ellie]

Lynne K Is it lactose intolerance or something else? xx

[Deb]

Sending you big hugs Lynne. Im so sorry that you're having such a distressing time with swallowing and also with transferring.

I really hope you get the support you need quickly. Xx😘🤗🤗

[Lynne K]

No not lactose it’s milk protein that I’m intolerant to xx

[Lynne K]

Sending you big hugs Lynne. Im so sorry that you're having such a distressing time with swallowing and also with transferring.

I really hope you get the support you need quickly. Xx😘🤗🤗

Thanks Deb, husband Steve tired with having to get up in the middle of the night. Luckily I can still stand to go to the loo independently but that’s today. I obviously don’t know if tomorrow will be the same and even if so I’m losing the use of my hands xx

[Lynne K]

Lynne K some Ensure drinks might be dairy free? Could your hospice team offer advice/prescribe?

Thanks Linda, I don’t know but Speech and Language assess me on Monday xx

[GillB]

Lynne K

I am the same but find some foods ok. Try soup or baked potatoes with tuna although guess you can't have mayo. Leave the skin. Tinned ravioli or even frozen Chinese dumplings. Are you veggie in which case quorn in a shepherds pie or with cut up spaghetti or macaroni. For puddings I guess it is more difficult for you but maybe soya puddings. I have Altraplen as my supplement drink and they taste nice. They have helped me stabilise weight loss and put some back on.

Sending hugs 🤗

[Lynne K]

GillB no I’m not veggie just dairy intolerant so eat vegan yoghurt. I could manage shepherds pie last night but every day is different isn’t it xx

[Mary C]

Hi Lynne K,
Can you ring SALT to get advise before your appointment next week?Is there a nutritionist in the team that can help you?

My RIG was fitted months before I needed it but I had lost weight pre diagnosis due to anxiety.The respiratory team advised to have it fitted for when needed.

At least if you have some advise from SALT, nutritionist it might relieve the anxiety.It’s awful for you when so many symptoms happening all at same time.

GillB has made some suggestions for food she manages.
Thinking of you …
Mary

[Lynne K]

Mary C SALT is the best person to speak to according to my OT and the SALT is coming Monday 10.30am.

I replied to Gill’s suggestions thanks xx