Trying to be a grown-up with his own house and having to deal with PKU has it's challenges - like trying to find new, inventive ways to have low protein food and have my exchanges all in one go, three times a day, every single day.
This is going to be a thread 🧵 - feel free to read more below 👇
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.
Just took a quick look at #Bluesky in case I would have the surprise to find people from the #PKU community.
Answer: Nah.
At least, Bluesky would have been a better choice than anything related to #Meta or even #Twitter, but no. There's no movement.
I have pretty much left Twitter, I'm progressively leaving Instagram and I do everything I can to encourage people to subscribe to my blog so they can stop relying on Facebook.
It's honestly baffling how much having low phenylalanine has changed my life!
I used to have so much anxiety, be really indecisive about things, get incredibly frustrated when things didn't go the way I wanted to (and lets face it, when does life ever go exactly the way you want it?). And honestly, I was quite miserable to be around.
I got very serious about sorting out my knowledge about exchanges in my thirties, and it has made such a difference!!
Going to be seeing some old friends, and also planning on having some phe exchanges outside.
What are folks tips and tricks for managing phe for foods that you don’t know (e.g. restaurant food)? Mine is skipping either lunch exchanges or both lunch and dinner exchanges to ensure I stay in the green…
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.
So, I dreamt that I underwent a surgery where I was implanted with a gadget just a little smaller than a credit card and that was supposed to drastically decrease the amount of phenylalanine I had in my body. 😳
One thing I always get stuck on when eating with #PKU 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)
Hi #PKU -ers! Sorry for long silence from my side, but we´re finishing preparations for @NSPKUcze annual meeting which will be held in two weeks (28th.of sept.-1st.oct.). And then I´m going to #birmingham. Will I met some of you there? @soheb@Chloeormerod@poconnor@ClairTheGinger@pcublogue
I have spent months doing baseline testing and trialling Sapropterin. Like many others, it has proven a hard road, but I feel ready to share my experience in a series of 3 blogs.
Early morning cooking with pregnant Clair, trying to make #PKU friendly but also slightly higher exchange snacks, can you guess what I'm making!?🤔🤔 #PKU
Hello! @poconnor has released a new monthly newsletter, and in it there is a bit about batch cooking PKU food WHICH OF COURSE I'm going to study like my exam is tomorrow morning!!
If you have PKU or curious (also same about brain injury!), then check out the newsletter here:
Quite interesting a lot of the pros are trying to avoid social situations where one would make things awkward or inconvenient by explaining PKU rather than just rolling with it.
Also, I'm so with her on the selfishly making tea things!
This feels like the end of a very long, hard nearly 3 year journey (started pre-contraception diet in 2021!) but I'm so damn proud of myself for getting through it, and to come out the otherside with a beautiful, happy and healthy baby.
No more carrying around extra water, powder everywhere, bag explosions, spilling on carpet, feeling sick from being too full, midnight forcing to get last one in, but just most importantly NO MORE DRINKS! 🥺
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.