The sense of taste.

[Terry]

Hi Cambridgeshire People;

I like spicy food too, rice can be a problem if it's light and fluffy. I tend to get it over cooked or/and put coconut oil on it to make it heaver and easier to mix and swallow. You can get coconut oil that does not taste much of coconut.

Doubt that I'll make the next meeting, when is it?

Love Terry

[Fru]

Hi Terry,
On my card it says that the next Cambridge meeting is Thursday 15th Feb. It's always good to see now familiar faces and new ones too.
Ed saved some of his curry to have for lunch tomorrow or Monday. Not eating huge meals. Had another fall today but is using his rollator a lot now. He is also good at getting up off the floor. Knees last week, arm today.
Love Joy xx

[Rick]

Hi Raj,
I've been talking Riluzole for just over 6 weeks now. So far my tastebuds seem fine. After a week or so I had a few really good days. I don't know if it was due to the Riluzole or not though.

Fru is 100% right about weight. You can't stop the muscle wastage but you can keep fat on. I had no appetite for 2 weeks and was losing weight. My appetite returned and I'm eating normally. I'm maintaining my weight for now.

You're right on the Riluzole. It can extend your life 2-3 months. You have to get regular blood tests though to check your liver isn't being damage. Unfortunately at present there is nothing that will make you better. Riluzole can only slow it down slightly.

Rick

[Ellie]

Hi Terry,

I've given up on rice - too dangerous - but rice noodles are good with a curry or a stir fry. You could try them maybe?

Love Ellie.

[Terry]

Yep, I do have rice noodles with meatballs or sometimes we use tagliatelle. We tend to over cook pastas as well to make them easier to eat.

Glad to hear that you can still enjoy eating a bit.

Love Terry

[Wife of Jim]

Raj , my husband can't stand spicy or sour foods anymore. He loved hot sauce , mustard and pickles.He would gag and his eyes water.Now he eat soft bland food, but it take's a long while to eat anything.So glad we have the feeding tube now. he takes all of his water and meds with the peg.All the best to everyone here.

[Dis1960]

Pre-MND I loved making/eating hot curries ( favourite was a chicken phall based on a Pat Chapman recipe )

Now I cannot stand to eat a jalfrezi

Something has changed and I strongly suspect MND is behind it

[Lynne K]

I went off sweet things including cake, chocolate and most biscuits since MND. I thought that it is caused by rilozone. I still enjoy curries, hot, but not too hot and medium. My favourites are chicken saag balti, and others that I cannot remember the names of. Lynne

[Dis1960]

Could it be a combination of the tongue shrinking AND sometimes biting the tongue during sneezing?

[Gillette]

I was a real chocoholic but now I don't eat much chocolate at all. In fact, my consumption of chocolate had been reducing for a few months before diagnosis. I find that I'm eating more savoury snacks.

[Lynne K]

Hi Dis, I don't think a shrinking tongue has anything to do with it, well at least in my case. It's something between my taste buds and my brain that have changed. But I really enjoy my savouries. I've always favoured veg and protein (fish or meat) over puddings, but I used to regularly have a pudding on Sundays ie apple pie. That's very seldom now. Lynne

[Guest]

I don't have motoneuron disease but I had an infection 12 years ago and since that time everything has changed in flavour from what I can gather it's because of starvation, I lost too much weight to quickly and the infection reached my brain !and I had some Brain damage, in the first few months after the infection everything tasted like tomato! from what I can understand it means I was deficient in potassium or it tasted like sunflower oil,my sense of taste is still impaired after 12 years i'm saying this but just because I remembered, I have no way of knowing how it would impact somebody with motor neurone disease, my mother tried the grape cure diet and it worked and cured dysentery it appears that if you eat just raw food it clears out the toxins you can do it for a day which is probably best if you are very weak my mother did it for longer than that

[Devonmaid]

My husband's lost his sense of taste a few years before his diagnosis or any symptoms. His taste has changed since having MND. He never had a sweet tooth but now doesn't really like savoury things and would eat something sweet for most meals if he could. I saw some research this week that said older people who lost their sense of taste are much more likely to die within a short time than others and they think it may be due to some underlying health problem that has not been found yet.