HD Australia

Hey guys,

One of the talks at the conference was on nutritional management for ppl with HD, which of course like everyone else you should be having a well balanced diet. I did get a bit upset though as I though they were talking that they needed to enforce this on the person through the whole disease. It hit a bit of a nerve with me as I was thinking about one of the nurses at mums nursing home telling me that she could not have a bowl of icecream until she had eaten her vegies and didnt my mother ever teach me this, needless to say I was furious. I latter spoke to the lady who did the talk and she let me know that if someone is in late stages like my mum than it really doesnt matter too much if all they want to eat is icecream.

Eating still needs to be pleasurable and it gives better quality of life compared to peg feeding. My mum had decided to stop eating and I think it is the last thing in her life that she has control over. The nurses decided to give her a drug that made her hungry and I think that this is just as bad as peg feeding.

Anyway I guess I was just trying to see what people's thoughts and opinions were on this topic:)
Nay

Hi Nay - I think you're absolutely right - if your mum wants to eat ice cream and it makes her happy, why not. She probably ate her vegies first most of her life and thinks what good did that do, and now she probably finds it easier to eat ice cream anyway. If she wants to have her cake and eat it too - that's possible - just get more cake (or ice cream). Giving your mum meds to make her hungry shouldn't have been a decision the nurses made on their own without consulting you and your mother's doctor.

I think it's similar to the story about the HD woman who was happy to be in a wheel chair so she could still wear her high heels - red stilettos - wow - how many people in wheel chairs do you see in red high heels - much better than boring slippers if she preferred her heels.

With regard to your mum I'd be mad as hell

Let her eat ice cream, as Marie Antoinette would say.

sonnie xx