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.

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!

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

I forgot to share the good news!

The last result was 413umol/L - looks like creating had little effect on my phe levels. (Well, my levels before were 300, so could be? But before that it was 481 and 556, so… 🤷‍♀️)

https://pkutalk.com/@soheb/112226425483912059

pcublogue, to random
@pcublogue@pkutalk.com avatar

I’m totally in phase with that. Of course, when it comes to , we need to add management and amino acids formulas intake.☝️

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, to random
@poconnor@pkutalk.com avatar

🎉 On the 4th day of the , let's create a !

Share a song, quote, or image that brings hope and joy during challenging times.

'The Best' by Awolnation always gets me dancing (odd video though!)

Spread positivity with your favourite uplifting tune! 🎶

soheb,
@soheb@pkutalk.com avatar

@poconnor I think this image is what is bringing me hope and joy atm

soheb, to random
@soheb@pkutalk.com avatar

I really loved watching this presentation given by our very own @pcublogue! It's about his experiences with PKU. Goes to show no matter the language/nationality/culture difference, there are some things we all share the same, and @pcublogue put it brilliantly! Well worth a watch:

https://videos.pkutalk.com/w/343pZ7gFhvhrN39QGAbQmH?subtitle=en

soheb, to random
@soheb@pkutalk.com avatar

Made myself some stir fry noodles the other day!

It was actually quite nice!

soheb, to food
@soheb@pkutalk.com avatar
soheb, to food
@soheb@pkutalk.com avatar

Made myself some low protein burgers using the Promin burger/bun mixture. They both tasted great! I think it would be better with a leaf of lettuce, some tomatoes, and some vegan cheese though...

soheb, to random
@soheb@pkutalk.com avatar

My last blood test results came back at 570 umol/L!

The one before was 801 umol/L, so it’s nice to see such a drastic difference. It came down to a spice I regularly used having quite a significant amount of protein! Once that got cut out, my levels went down.

soheb, to random
@soheb@pkutalk.com avatar

So… just tried the Promin chicken burger from the ESPKU conference and... it's a little grainy??

Did anyone experience this or is it just me??

soheb, to random
@soheb@pkutalk.com avatar

Has anyone tried the GMPro powder/drink in comparison to the PKU Sphere? What did you think of it?

soheb, to food
@soheb@pkutalk.com avatar

So I found these two low protein items from Tesco that seem suitable for PKU folks! Here is my little review:

The spring rolls: was ok. I think I prefer normal vegetable spring rolls. It’s 1 exchange for each spring roll too 😒

The tempuras: Oh. My. God. These are sooooo delicious!! And at 0.5g of protein too per tempura (half an exchange for PKU UK folks).

Cook from frozen 15-17 mins New TESCO Plant Chef 10 NO-PRAWN TEMPURAS 100% PLANT BASED Jackfruit & King Oyster Mushrooms in a seasoned gluten free batter

soheb, to random
@soheb@pkutalk.com avatar
gimulnautti, to random
@gimulnautti@mastodon.green avatar

Most of the time when I hear from people saying causes learning & memory problems, it’s from people in the ”conspiritualist” scene.

They also tend go on and on about a big pharma plot to enslave all humanity by making them stupid, and they frame themselves as the hero saving everybody, so I tend not to take them too seriously.

But then there’s the occasional serious study with definitive results.

High metabolites may be the culprit.

https://www.nature.com/articles/s41598-023-41213-2

soheb, to random
@soheb@pkutalk.com avatar

Just done the blood spot. Very happy with the blood spot circles!

soheb, to random
@soheb@pkutalk.com avatar

I tried this can of Green Cola - Sour Cherry flavour.

I'm not one for sweet things or fizzy drinks, but WOW!

This was so good! It also has no sugar and no aspartame!! Good stuff, I really enjoyed it!

soheb, to random
@soheb@pkutalk.com avatar

Completely forgot to share this - PKU scrambled eggs I fried a few days ago!

With a bit of salt and pepper, it was delicious!!

soheb, to Health
@soheb@pkutalk.com avatar

I miss sushi so much now that I'm behaving and on-diet.

What PKU foods do folks miss?

soheb, to Health
@soheb@pkutalk.com avatar

New blood spots!

First finger prick didn’t get too much blood out. The second one did the trick.

Given how the second finger (my usual go-to finger) is hurting and the other one feels like nothing happened to, I would say I probably didn’t put the needle close enough to the finger. Oh well.

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

Tried making some pasta out of the packet (this was the product: https://prominpku.com/product/promin-low-protein-pasta-in-sauce-moroccan-flavour/?add-to-cart=180)

I added waay too much water, and in the end it was pasta in a watery soupy mess with the faintest hint of the flavour 🥲

soheb, to food
@soheb@pkutalk.com avatar
soheb, to Stoicism
@soheb@pkutalk.com avatar

If you haven't heard, @poconnor is donating half of her profits from "Living with PKU" to the NSPKU - a fantastic charity that helps people with the rare disorder called PKU!

And if you buy both of her books, you get 25% off!

Get her books here now:

https://pigpen.page/books/

Also, please boost! Boosts are incredibly welcome!!

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