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
😋 💪🏻👌🏻
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!
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.
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.
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.
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. 😳
I’ve been encouraging people to subscribe to my blog a lot lately rather than counting on social media algorithms to see my content. I strongly felt like I had to “walk the talk” and improve the user experience.
So, I spent a good part of my vacation re-thinking the structure and working on it.
En ce 29 février 2024, on célèbre la #Journéedesmaladiesrares. 😁
Comme j'ai une maladie rare appelée phénylcétonurie (PCU, PKU en anglais), je ne peux manger que 10g de protéines naturelles au maximum (moins, c'est encore mieux) car mon corps ne peut traiter un acide aminé spécifique, la phénylalanine.
Discussion au sujet du patient-partenaire.
📌 Qu'est-ce que c'est?
📌 Comment en devenir un?
No subtitles on the YouTube video. English subtitles available automatically if your Facebook profile is set in English here: https://fb.watch/qr6gcE5-_2/