pcublogue, to random French
@pcublogue@pkutalk.com avatar

Bleuets 🫐
Bananes 🍌
Avocats 🥑
Lait d’amande
Sirop d’érable
20g de protéines de formule
Une bonne façon de commencer la journée
😋 💪🏻👌🏻
*
Blueberries 🫐
Bananas 🍌
Avocado 🥑
Almond milk
Maple syrup
20g of formula protein
A good way to start the day
😋 💪🏻👌🏻

pcublogue, to random French
@pcublogue@pkutalk.com avatar

Beau début de journée. ☀️
📌 6000 pas jusqu’à maintenant
📌 Musculation
📌 Jeûne de 14 heures
📌 40g de protéines de formules pour briser le jeûne

Tout ça avant 11:00!

Motivation, motivation 😛💪🏻

poconnor, to random
@poconnor@pkutalk.com avatar

Good morning @NSPKU Conference. Metabolic dietitian Suzanne Ford kicks us off with a look at the treasure trove of information on the NSPKU webpage.

the research page has open access to relevant studies, while the documents page is a rare resource of helpful information.

Plus, full page copies of the News & Views!

image/jpeg

soheb, to random
@soheb@pkutalk.com avatar

There was a great panel talk by @poconnor about living with PKU and sapropterin.

One of the questions was "are you doing well with phe levels", and one of the points was that how life changes do have a severe impact on phe levels.

As someone who moved house quite recently AND had a job change, I am proof that big life changes as well as changes to routine absolutely do mess up phe levels.

#pku #LivingWithPKU #ClassicalPKU #diet #lowProteinDiet #LowProtein #phenylketonuria #phenylcetonurie

pcublogue,
@pcublogue@pkutalk.com avatar

@soheb @poconnor Hey I just though of something. It would be nice to bring your key takeaways from #NSPKU2024 to Québec. Would any of you (or maybe even both) would want to write a short text about your highlights that I would feature on my blog? Of course when I do that I clearly mention who wrote the text. Let me know what you think :)

pcublogue,
@pcublogue@pkutalk.com avatar

@soheb @poconnor in fact, if you know anyone else, the more the better 😁 #PKUGlobal

soheb, (edited ) to Youtube
@soheb@pkutalk.com avatar

In PKU news, a good friend of mine Paul has updated his PKU Insights YouTube channel to discuss some of the new things in the future.

You can check it out here (and subscribe to the YouTuvbe channel!)

https://www.youtube.com/watch?v=iMPr16eAuGo

soheb,
@soheb@pkutalk.com avatar

Also in more PKU news (it's all kicking off in the PKU community!!) @pcublogue has released a new blog post for Low Protein Nachos...

NACHOS!

Give it a read/watch, and for goodness sakes, please do subscribe via RSS/email to @pcublogue's newsletter!!

https://phenylcetonurie.ca/2024/05/01/product-low-protein-nachos/

poconnor,
@poconnor@pkutalk.com avatar

@soheb thank you! The increase in prescription costs is an issue for those with PKU in England, so hoping to alert as many folk as possible 🙏

poconnor, to random
@poconnor@pkutalk.com avatar
soheb,
@soheb@pkutalk.com avatar
soheb, to languagelearning
@soheb@pkutalk.com avatar

Today a work colleague just looked on my low protein PKU pasta, and I thought he was weirded out by the low protein-ness of it all.

He pointed out it was overcooked. He is Italian, so obviously he was going to judge my pasta cooking skills 🤦‍♂️

#pku #lowprotein #pasta #italian

soheb, to random
@soheb@pkutalk.com avatar

To all my PKU folks in the UK - the NSPKU has a great section on foods that are suitable for PKU folks as well as the relevant exchanges.

Please check those docs here: https://nspku.org/documents/?wpdmc=dietary-info

soheb,
@soheb@pkutalk.com avatar

For example, I found the savoury list, and while I was shopping today I managed to find a rice substitute as well as bread from the store that I can use instead of PKU bread.

The benefit of this means that I no longer have to wait 2 weeks for PKU Bread to come on prescription.

Nspku pdf

poconnor, to baking
@poconnor@pkutalk.com avatar

PKU-Friendly Chocolate, cherry & sour cream cupcakes incoming…

pcublogue, to random
@pcublogue@pkutalk.com avatar

Dinner this evening: Vegetables overload and sweet potatoes 🍠

pcublogue, to random French
@pcublogue@pkutalk.com avatar
pcublogue, to random French
@pcublogue@pkutalk.com avatar

Est-ce que la volonté est comme un muscle qu’on peut entraîner? J’ai besoin d’y croire! 😝

Il n’y a rien qui travaille ma volonté comme faire le petit déjeuner de ma fille EN PLUS d’être en train de jeûner. 💪🏻😅

pcublogue, to random
@pcublogue@pkutalk.com avatar

, jour 1 (repas 2 de 2).

📌 Riz fri aux légumes (konjac)
📌 Salade verte avec huile d’olive, curcuma et câpres

1g de protéines (méthode simplifiée) 🙌🏼
8g de glucides net 😄

pcublogue, to random
@pcublogue@pkutalk.com avatar

jour 1, mon déjeuner (repas 1 de 2).

📌 Sandwich BLT (le « bacon » est de la noix de coco fumée)
📌 Frites de céleri rave
📌 Ketchup sans sucre céto

Moins de 4g de protéines (méthode simplifiée)
11g de glucides net
Excellent 😋

soheb, to random
@soheb@pkutalk.com avatar

Didn’t do them last week as I had a cold, so didn’t see the point of being scolded for high phe levels which I had no control over.

poconnor,
@poconnor@pkutalk.com avatar

@soheb yeah, I took one before Christmas which turned out to be high. And turns out I had Covid again.

I also took one this week, so Fingers crossed for both of us for good levels this time

soheb,
@soheb@pkutalk.com avatar

@poconnor Boo for COVID, I do hope you kicked its butt (and I got COVID last year too! It's so annoying!!)

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