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Old 10-03-18, 03:15 AM   #1
Raphael
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Default Late Stage H.D: Diet & Recipes

Hi Anyone!
I wonder if you can help me with ideas for recipes for my partner who has HD and has reached the stage where Wiltshire Farm Foods pureed puddings are no longer palatable after 3 years eating them solely! - Our Speech and Language therapist has left us general notes about the types of foods in principle.

I looked on Nestle Resource Thicken-Up website and have found some recipes for simple one-dish meals... However, I know my partner only likes sweet foods. He takes over one hour to eat a small pudding... Can anyone suggest what they have tried or made for their loved person with HD? - Thank you.

Oh, I know he has Ensure & Fresubin dietary supplements. A liquid diet. The PEG is being refused and it has been his irrevocable choice to refuse it always! So, I really only need advice about meal-dish recipes for this late stage.

Best wishes from Raphael
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Old 10-03-18, 11:37 AM   #2
Trish
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Default Re: Late Stage H.D: Diet & Recipes

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Originally Posted by Raphael View Post
Hi Anyone!
I wonder if you can help me with ideas for recipes for my partner who has HD and has reached the stage where Wiltshire Farm Foods pureed puddings are no longer palatable after 3 years eating them solely! - Our Speech and Language therapist has left us general notes about the types of foods in principle.

I looked on Nestle Resource Thicken-Up website and have found some recipes for simple one-dish meals... However, I know my partner only likes sweet foods. He takes over one hour to eat a small pudding... Can anyone suggest what they have tried or made for their loved person with HD? - Thank you.

Oh, I know he has Ensure & Fresubin dietary supplements. A liquid diet. The PEG is being refused and it has been his irrevocable choice to refuse it always! So, I really only need advice about meal-dish recipes for this late stage.

Best wishes from Raphael
Hi Raphael

Sorry to hear things have taken a turn.

I would need to think more about actual recipes as it was mainly savoury food that I had to adapt and get the old blender out for (soups and blended lamb casserole etc). However, where Steve sounded like your partner not wanting PEG; and where he had a sweet tooth more than savoury, I would often get him through the day with protein drinks such as Ensure mixed and blended with fresh strawberries etc strained to take out the pips and always made with Gold Top - full cream milk.

He needed to keep on the 'normal' food too as well as shakes so I would give him a pot or two/three of Rolo deserts and other pot deserts like the Cadbury's chocolate trifles. Marks and Sparks did a fabulous thick vanilla custard which I would serve on its own or heat up and pour of a bought sponge which I would them mush down with a fork. Jelly; blancmange; full fat ice cream; and caramel deserts are also very smooth to slip down.

I know to lots of people the thought of just giving deserts may seem wrong but it was more about building calorie intake; having flavour to stimulate the taste buds and there gets to a stage in HD where it's more about taking nutrition from the fortified shakes made up with milk or added to custards etc than it is about a 'balanced diet'.

Other brands are available of course.

Mark
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Old 15-03-18, 02:55 PM   #3
Brian2001
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Default Re: Late Stage H.D: Diet & Recipes

Quote:
Originally Posted by Raphael View Post
Hi Anyone!
I wonder if you can help me with ideas for recipes for my partner who has HD and has reached the stage where Wiltshire Farm Foods pureed puddings are no longer palatable after 3 years eating them solely! - Our Speech and Language therapist has left us general notes about the types of foods in principle.

I looked on Nestle Resource Thicken-Up website and have found some recipes for simple one-dish meals... However, I know my partner only likes sweet foods. He takes over one hour to eat a small pudding... Can anyone suggest what they have tried or made for their loved person with HD? - Thank you.

Oh, I know he has Ensure & Fresubin dietary supplements. A liquid diet. The PEG is being refused and it has been his irrevocable choice to refuse it always! So, I really only need advice about meal-dish recipes for this late stage.

Best wishes from Raphael
-just a point about peg feeding... I eventually made the decision to have the peg fitted when Vanessa was really struggling to swallow and was going to starve if not helped.

It was the hardest decision of my life and had to be made at short notice.

-back to liquid food... calshakes were the best for V when she could still manage some food. They were all on the sweet side.

I need to flag up a massive concern at the point of considering 'is it time for a peg???'
Silent aspiration...


wishing you strength to face the challenges ahead.

Brian.
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