poconnor · @poconnor
21 followers · 262 posts · Server pkutalk.com
Lukas Rox · @rox_lukas
76 followers · 647 posts · Server cmdr.social
#Grafana dashboard for #BaldursGate3 peak concurrent users #pcu #graphs #steam stats
#grafana #baldursgate3 #pcu #graphs #steam
poconnor · @poconnor
21 followers · 246 posts · Server pkutalk.comSupplement, medicine, special drink... I'm thinking about #PKU supplements this month.
First up, looking at if we actually manage all of our supplement.
If you have PKU, do you take your supplement every day?
#LivingWithPKU #AdultPKU #PCU #PKUProblems #PKUCommunity #LowProtein
#pku #livingwithpku #adultpku #pcu #pkuproblems #pkucommunity #lowprotein
poconnor · @poconnor
20 followers · 240 posts · Server pkutalk.comTW: blood & needles
Tips for #PKU #BloodSpot
The #sapropterin trial meant daily #tests & I review different lancets & offer tips
TLDR: lancet has big effect on pain & healing as does choosing the site
#pku #bloodspot #sapropterin #tests #livingwithpku #lowprotein #adultpku #pcu #pkulife
poconnor · @poconnor
20 followers · 235 posts · Server pkutalk.comSneak peek for PKU Talk folks:
A new video review of #LivingWithPKU featuring our very own @jjunebrown
Thank you so much for this!
P.S if annotations has a good captioning to, please let me know!
#livingwithpku #pku #pkuawareness #pkulife #pcu
Soheb · @soheb
47 followers · 1366 posts · Server pkutalk.comI miss sushi so much now that I'm behaving and on-diet.
What PKU foods do folks miss?
#pku #pcu #phenylketonuria #phenylalanine #phenylcetonurie #lowprotein #diet #health #nhs
#pku #pcu #phenylketonuria #phenylalanine #phenylcetonurie #lowprotein #diet #health #nhs
Soheb · @soheb
46 followers · 1298 posts · Server pkutalk.com
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.
#pku #pcu #bloodspots #bloodspot #blood #Phenylketonuria #phenylcetonurie #phenylalanine #health #nhs #lowprotein #diet #lowproteindiet
#pku #pcu #bloodspots #bloodspot #blood #phenylketonuria #phenylcetonurie #phenylalanine #health #nhs #lowprotein #diet #lowproteindiet
Soheb · @soheb
46 followers · 1284 posts · Server pkutalk.comAspartame sweetener to be declared possible cancer risk by WHO, say reports
#aspartame #phenylalanine #Phenylketonuria #phenylcetonurie #pku #pcu #pkucooking
#aspartame #phenylalanine #phenylketonuria #phenylcetonurie #pku #pcu #pkucooking
Soheb · @soheb
35 followers · 694 posts · Server pkutalk.com@poconnor has written a blog post on how to make a Protein-free Carrot cake, for those with #PKU or #lowProtein diet. Check it out here:
#pku #lowprotein #pcu #phenylketonuria #phenylcetonurie
Soheb · @soheb
32 followers · 605 posts · Server pkutalk.comHere is a great blog post about #LivingWithPKU by Dan Elmer:
https://thetruthaboutlifewithpku.home.blog/2023/03/29/fight-or-flight-pku/
#livingwithpku #pku #phenylketonuria #pcu #diet #health
Soheb · @soheb
31 followers · 594 posts · Server pkutalk.com@pcublogue That is an *incredibly* fascinating read. I'll be honest, I've seen your #Keto posts before and the diet has baffled me, but your blog post did a great job at breaking it down. Speaking of breaking it down, it's incredible how you've managed to master the #keto diet along with the #phe diet and still keep on track for both!
Question: how hard was it to do the #keto diet at the start? What would you change given what you know about #keto and #pku / #pcu diet?
Clayton Hove · @adtothebone
132 followers · 622 posts · Server universeodon.com
Soheb · @soheb
11 followers · 37 posts · Server pkutalk.com@pcublogue @poconnor I think it depends on context - #pcu is great for French PKU folks, and I don’t think they would be too keen on British folk adopting it and talking about their own British experiences. However; if we want to celebrate pku peeps, then #pku and #pcu should be used (at least that’s how I feel).
In short: use whatever and see what shakes out. Let the people decide etc etc
PCU Blogue :superpcu: · @pcublogue
2 followers · 12 posts · Server pkutalk.com
poconnor · @poconnor
9 followers · 8 posts · Server pkutalk.com