Panic attacks

[Ellie]

Lesley, or if you or your mum ask the Dietitian for a sample of Nutricia's Nutilus Fruit, Nutilus Complete Creme and Forticreme Complete, these are all pudding style, nutrionally complete desserts which she may like.

And yes, the Dietitian can easily request or get samples

Hopefully your mum can keep her weight up.

Best wishes to you both.

Love Ellie.

[Terry]

Hi Lesley,

I have fortisip chocolate 220 ml drinks, which are not as gloopy as the more consentrated smaller ones. Also very cold things can be easyer to drink.

Certainly the fruit base ones would be different consistency

So loads of things to ask her diatian about.

Love Terry

[LesleyJ]

Thanks everyone, I think we need to chat with dietician. The drinks she has are nutricia calogen extra shots strawberry and they are making her gag (they look lovely as well!)

[Ellie]

Oh I know those Lesley - luckily I took them through my feeding tube

[Hayls]

I started with Bulbar symptoms and was affecting my taste tolerances, to the point my throat muscles would spasm and either spray anyone or anything of what was in my mouth and or cut off my airway which is very distressing but I was lucky that I knew that I needed to calm down for the muscle to release to begin to breath again, it’s very scary and seeing my family faces when this happens I know caused them a huge amount of panic but luckily they, I’ve had to avoid a lot of flavours and textures to make it less of a risk but my emotional lability is still not controlled which affects my breathing substantially, my respiratory specialist says my respiratory system is unaffected by my MND but my emotions are affecting it, could this be affecting her? Defo avoid anything triggers and find an alternative, wish you lots of luck that you find what works

[Sheila]

The same thing would happen to me with the throat muscles and cutting off the airway, it is very scary. It is surprising what flavours and textures sets it off. And the mucus builds up in my throat. Not nice.

[LesleyJ]

Thanks so much everyone, this forum is so supportive