PKU - Pig Pen

A day in the life of PKU

A dietician’s focus on PKU may be a purely objective one... They only see us once every few months so how do you show them the daily perspective? How do you explain living with PKU to someone who approaches it from a medical or academic perspective?

PKU

2020 - halfway through.

Our usual pace of life has gone which means I often brood on how little I managed to do this year. To help drag myself out of these moods, I drew up a list of five things I’ve achieved. It provides solid evidence and reassurance that I have progressed, despite the chaos.

PKU

Dark Chocolate & Ginger Hot Cross Bun loaf

What I really wanted was a Hot Cross Bun loaf which I could slice and toast like normal bread. And I have a bread maker

Brain Injury

Change, ambiguous loss and spoons

Change is a constant right now. We are bombarded with new concepts and rules to understand which can then change at a moments notice.

PKU

PKU in a time of Covid

This is a worrying time so I will start by highlighting the NSPKU Video on Coronavirus and the statement on their website.

Conference

NSPKU 2020

This report covers the Saturday morning session which includes the latest research and legal wrangling on PKU.

PKU

Fad Diets & PKU

Being able to chose what you eat, or what you avoid, is not an option for anyone on a medically restricted diet.

PKU

Blogging Anxiety

I have never said that the PKU diet is easy but I do try to avoid negative thinking. It is not easy to be positive about having an inherited metabolic disorder...I don't leap out of bed in the morning and shout “Hurray! I have PKU!”

PKU

Eating out with PKU

Every now and then there is a request on social media for help when eating out with PKU. Here are some tips and recommendations for eating out in the UK.

PKU

What is PAL? Or PEG-PAL or Pegvaliase or Palynziq...?

The four terms refer to different aspects of a single method of treatment for PKU. This is an enzyme replacement therapy which is usually injected. Bear with me while I try untangle it all.

PKU

PKU friendly recipes to try in October

Where the heck did September go? Admittedly I spent most of the month pretending it was still summer. The weather played ball early on, but now the season for soups and oven dishes is now upon us.

PKU

Fitness, BMI & PKU

BMI is not a personalised reminder of your chocolate and/or beer binges. It lets you know roughly how you are doing.

PKU

PKU and heatwave friendly recipes

For five days the temperatures are expected to hover around 30 celcius so it is a good time to revisit my handy ‘no-cook’ recipes. There are three on this page, ranging from phe-free, to 2phe per portion.

Brain Injury

Pausing the anxiety treadmill.

If there ever was a time to be kind to yourself, this is it. Take a breath and realise that one mistake is not a failure. We are usually nicer to everyone else than we are to ourselves.

PKU

Tea & Scones

My lack of baking prowess is legendary, as is my love for a freshly baked treat.So a few months back I decided to knuckle down and master at least one simple recipe. Every Saturday for a month the kitchen rang to the sound of muttered curses softened by a dusting of flour. But I got there!

PKU

Webinar - Healthy eating on a low protein diet

Louise kicks things off by saying that “in theory a Low Protein (LP) diet sounds very healthy as it should include a lot of vegetables and fruit.” But her research has found that it can be difficult to eat healthily and watch your weight on a LP diet. Fortunately, she has a few answers.

PKU

The Online PKU Community

This is PKU Awareness month and International PKU day is on the 28th of June. So this is the perfect time to get a bit more involved with PKU online.

PKU

PKU Awareness Month Challenge

Telling someone that you have PKU really can make it easier to stick to the diet; as well as raising awareness of the condition during PKU Awareness month.

About Polly O'Connor

What is PKU?

“I have inherited a mutated gene meaning my body cannot produce a particular enzyme which breaks down an essential amino acid. ...Ultimately too much protein in my food can lead to brain damage.”

PKU

New Waitrose Vegan Range

It seems there is a new Vegan range at Waitrose and I picked up two of them for a weekend taste-a-thon.

PKU

What is GMP?

All of the above is sounding pretty damned good, for most people it’s enough that a new supplement tastes better. But it’s looking like there might be even more benefits to using GMP over a synthesised amino acid supplement.

PKU

Chocolate Sphere trial: results!

With the new chocolate Sphere flavour out from Vitaflo I decided to see if I could fit this into my diet - see here for the first installment. How did I do it and what happened?

PKU

New Chocolate Sphere

What is a GMP substitute? If you haven’t heard of GMP substitutes before, here is a quick primer. Vitaflo Sphere background The Vitaflo Sphere has been available in the UK for more than 18 months and comes in sachets of either 15g or 20g protein equivalents.