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
😋 💪🏻👌🏻

ClairTheGinger, to random
@ClairTheGinger@pkutalk.com avatar

A 7/10 on the blood spot today.

soheb,
@soheb@pkutalk.com avatar

@ClairTheGinger and here is me wishing I can get my bloods to stay in the circle ⭕

pcublogue, to random
@pcublogue@pkutalk.com avatar

Short night, it affects recovery and training. It is important to listen carefully to your body, set limits and promote recovery. It's good physically and psychologically. (After all, we must also navigate through other personal and professional responsibilities.) Take care of yourself!

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

Petit rappel : Cette recette est délicieuse! 😋 Partagez-là!
Abonnez-vous à mon blogue pour voir d'autres recettes sur ! 😎

Reminder: This recipe is delicious! 😋 Share it!
Subscribe to my blog on to see more recipes! 😎

https://videos.pkutalk.com/w/iu55BdNGQANCwoFe2nu9Hg

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 😛💪🏻

soheb, to random
@soheb@pkutalk.com avatar

I'm trying to get a bit more veggies into my diet, and the best con I've come up with is stuffing cheese and garlic stuffed olives into mushrooms. Works quite well.

poconnor, to random
@poconnor@pkutalk.com avatar

Update on future for

From the NSPKU conference held May 2024 here are my notes from the sessions on , , , solute carrier 6, and oral options for /

https://buff.ly/4awqcJP

soheb, to random
@soheb@pkutalk.com avatar

For folks who have used PKU Calculator - I've been thinking about winding down the diet management side of the app for quite some time now, as well as winding down iOS and Android apps.

I'm super proud of said apps, but the truth of the matter is that these apps do take a long time out of my life to maintain. If I had a team of developers and testers, then this would be easy. That, and Apple/Google bureaucracy has killed the fun for me.

#PKUCalculator #pku #phenylketonuria #phenylalanine

soheb,
@soheb@pkutalk.com avatar

@caoimhin a little bit of column a and a little from column b.

I was trying to do the following:

Keep track of food consumed per exchange
Make it easy for users to track their diet in terms of meals etc
Have a way for users to count how much supplements they have

At first I did #1, then naturally I implemented #3, but then users asked for #2 and since I designed my schema in a certain way, it was so much hassle to sort it out.

soheb,
@soheb@pkutalk.com avatar

@caoimhin The lack of flexibility of postgres meant developing around it was such a chore that I didn't even enjoy implementing new features.

If I were to start again, I would probably have 3 internal API endpoints - one to handle login/verification, one to handle extra metadata about users (eg how many exchanges they are on, where they live to filter out food etc), and then a third just for dietary/blood spots etc

ClairTheGinger, to cooking
@ClairTheGinger@pkutalk.com avatar

It's salad time! 🥗😍

soheb,
@soheb@pkutalk.com avatar

@ClairTheGinger oh my GOD that looks so delicious!!

Btw have you tried the salad project in London? I should take a pic once I'm there (dinner time today!)

soheb, to random
@soheb@pkutalk.com avatar

So glad I managed to sneak some of this home from the conference. It is delicious!

I just wish there was pku food delivery or something!

ClairTheGinger, to random
@ClairTheGinger@pkutalk.com avatar

Dieticans this week trying to keep on top of all the requests to add to prescription after the NSPKU Conference.

Image from Microsoft SwiftKey Keyboard

pcublogue, to Health
@pcublogue@pkutalk.com avatar

It’s important to not overeat and looking at calories is a way to achieve that.

But when I take a look at the total amount of calories of just the PKU formulas, it’s a meal. (550 calories). 😒

The only way I found dealing with that is intermittent fasting (time restricted window), eating only 2 meals of food and carefully spread formulas during the day.

#Health #phenylketonuria #phenylcetonurie #pku #LivingWithPKU

soheb,
@soheb@pkutalk.com avatar

@ClairTheGinger @poconnor @pcublogue I think the worst one for me was the Glytactin drink. I don't know if they prescribe it anymore, but I was on it and I had gained WEIGHT! My doctor laughed and thought I was just eating more, but then I told him it was the supplement. Went back to PKU Sphere and lost like 3kg in 6 months.

pcublogue,
@pcublogue@pkutalk.com avatar

@soheb @ClairTheGinger @poconnor It’s a huge challenge. I mean, there are countless people having trouble managing their weight and we have this additional challenge on top of everything. 😓

soheb, to random
@soheb@pkutalk.com avatar

When you get the usual junk leaflets for fast food restaurants, but you also have #PKU

Lotr You Have No Power Here GIF

poconnor, to random
@poconnor@pkutalk.com avatar

Jogging with lettuce: a breakdown or something more sinister?

Residents were startled by the spectacle of a small wolf running next to a woman who was panting heavily & carrying an iceberg. 🥬

Inspired by her #PKU clan, the woman combined a daily dog walk with a return to running.

“The Allotment is a safe place & I needed to check on the plot. Lettuces were looking good & I fancied a salad for lunch.”

Authorities are seeking those who incited the incident.
#livingwithpku #jogging #NSPKU2024

ClairTheGinger, to random
@ClairTheGinger@pkutalk.com avatar

One thing I always get stuck on when eating with is remembering to eat and remembering what I actually have in my cupboards!

So I have my fruit and snack bowls, all filled either prescription snacks, less than half a gram or completely protein free snacks, so I'm less likely to go for the snacks that are more interesting but heavier in protein (yoghurt, crisps etc)

ClairTheGinger,
@ClairTheGinger@pkutalk.com avatar

@poconnor @soheb handy for when you're in the middle of cooking, covered in sauce and you can't remember what protein potatoes are and your phone is in the other room 😂

soheb,
@soheb@pkutalk.com avatar

@ClairTheGinger @poconnor yep, that is a common scenario for me! Luckily I have a chalk board that is being used as a neglected to-do list. I'll revamp it into exchanges board! 👍

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