Navigating Life's Challenges.
Change is a constant in life. Whether itโs a global event, a personal health journey, or an unexpected disruption, we are often forced to adapt to new realities
Explore how spoon theory and ambiguous loss shape our willpower and resilience. Learn to navigate change, chronic illness, and daily energy limits with practical insights.
#SpoonTheory #MentalHealth #Resilience #PKU #BrainInjury
RE: https://pkutalk.com/@soheb/116188606885004550
The results for this bloodspot was 227umol/L!
My weight lifting seems to be helping quite a bit with the bloodspots! Also, I've rounded down with my exchanges, which has helped quite a bit (I rarely ever hit 2 exchanges exactly).
I'm trying to cook my own food now to cut down on visceral fat that my weighing scales report back, so next results should be interesting...
March PKU & Brain Health Update:
- Rare Disease Day equity report,
- PKU research, pancake recipes,
- brain injury app trials,
- and a book sale ending 7th March!
Share your story & support the community.
https://www.pigpen.page/march-2026/
#pku #rarediseaseawareness #shareyourstory #phenylketonuria #braininjury
@soheb Is this really the latest thread we had? If so, that's probably my fault, I hadn't done one in a way too long time...
Well, I finally did it today. And it was looking really good after four circles. Maybe we should trade cards, you would have good use for five circles and I seem to hit the limit at four. ๐คช
Mark Gadala-Maria (@markgadala)
Helios ํ๋ก์ ํธ์ ๊ณต์ ํ์ด์ง ๋งํฌ๊ฐ ๊ณต์ ๋์์ต๋๋ค(https://pku-yuangroup.github.io/Helios-Page/). ๋ ผ๋ฌธยท๋ฐ๋ชจยท์ฝ๋ ๋ฐ ํ๋ก์ ํธ ์๋ฃ๋ฅผ ํตํด Helios ๋น๋์ค ๋ชจ๋ธ์ ์์ธ ๊ตฌํ ๋ฐ ์ฑ๋ฅ ์ ๋ณด๋ฅผ ํ์ธํ ์ ์๋ ๊ฐ๋ฐ์์ฉ ๋ฆฌ์์ค ํ์ด์ง์ ๋๋ค. ํธ์คํ ์กฐ์ง์ PKU Yuan Group ๊ณ์ด๋ก ๋ณด์ ๋๋ค.
To all PKU folks - Share your story!
@poconnor has got some great PKU stories on her blog - one from yours truly ๐ง - and you can add your story into the mix as well!
Visit this link to find out more: https://www.pigpen.page/share-your-story-2/
Your Story Matters!
For Rare disease day, people with PKU are sharing their story.
๐ง Clair discusses parenting with PKU, when your child does not have PKU - and the interesting challenges she has faced.
๐ซ Ifan shares his experience navigating the manosphere, and what that meant for his PKU and mental health.
๐ฆ๏ธ Soheb wrote a series of blogs for PigPen - looking at moving home with PKU, and getting into the gym.
Good news, did a blood spot recently! Came back 226umol/L! ๐ฅณ๐๐
#phenylkeotnuria #PKU #Phenylcetobnurie #PKU #bloodtest #health #nhs
Getting ready for Valentine's Day - and Pancake Tuesday :)
An easy low protein recipe for reliable PKU pancakes: photos & video guides :)
Ideas for protein-free, and measured protein toppings.
https://www.pigpen.page/pku-pancakes/
#PKU #LivingwithPKU #LowProtein #LowProteinIdeas #Phenylketonuria #Pancakes
poconnor
Soheb
Caoimhรญn
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