# PigPen | Pauline O'Connor
> Books, recipes, articles, and advocacy on PKU, low-protein food, rare disease, brain injury, and mental health.
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## Pages
- [About Pauline](https://www.pigpen.page/about-me.md) - Author. Advocate. Motivational speaker. Content creator & editor. Butler to ''FluffMuppet" the Keeshond.
- [About this site](https://www.pigpen.page/about.md) - PigPen.page is an independent publication launched in July 2024 by Pauline§. If you subscribe today, you'll get full access to the website as well as email newsletters about new content when it's available. Your subscription makes this site possible, and allows PigPen.page to continue to exist. Tha…
- [Books](https://www.pigpen.page/books.md) - Pauline writes about real lives shaped by rare disease and resilience. Stories that turn science into understanding and action.
- [Contact Pauline](https://www.pigpen.page/contact.md) - Contact Pauline, or subscribe to the newsletter. Scroll down for copyright & disclaimer notices, and policies.
- [Living with PKU](https://www.pigpen.page/living-with-pku.md) - A clear, compassionate guide drawn from 40+ years of PKU life. For those newly diagnosed with PKU, or those with an allied disorder or a low-protein diet therapy. A great book for health professionals, too.
- [Low Phe ABC](https://www.pigpen.page/low-phe-kids-books.md) - A Low-Protein Alphabet for PKU Buy now Author: Pauline O'Connor Pauline O'Connor is an author of fiction and non-fiction, and a patient advocate. She campaigns for brain injury survivors, and for those diagnosed with the rare disease, Phenylketonuria (PKU). A brain injury ended Pauline’s successful…
- [Living with Mild Brain Injury](https://www.pigpen.page/mild-brain-injury.md) - A vivid memoir of concussion, recovery, and rediscovery. For brain injury survivors Loved ones and carers supporting someone with mild TBI, Neurorehabilitation professionals and advocacy groups.
- [Newsletter](https://www.pigpen.page/newsletter.md) - Want easy updates on PKU, brain injury, and mental wellbeing — all in one place? Subscribe to the PigPen newsletter for a monthly roundup of new articles, research highlights, and practical tips — plus early access to PKU-friendly recipes and community stories.
- [The Red Hat Stories](https://www.pigpen.page/red-hat-stories.md) - Short fiction exploring connection, loss, & serendipity in London. Nine interwoven stories for fans of short stories, curious observers of human connection, and readers seeking reflection and surprise.
- [Speaking and advocacy](https://www.pigpen.page/speaking.md) - I speak with patient groups, charities, and businesses to share real-life perspectives on PKU, brain injury, and mental health. Get in touch to discuss your needs.
- [Tags:](https://www.pigpen.page/tags.md) - Pauline O'Connor (PigPen) articles on PKU, Brain Injury, mental health, Phenylketonuria, concussion, TBI, ABI, Rare Disease

## Posts
- [July 2026](https://www.pigpen.page/july-2026.md) - I'm excited to introduce my new YouTube video series and share some book chapter excerpts with you all. But first, let's catch up on the latest PKU and brain injury news.
- [PKU Day 2026](https://www.pigpen.page/pku-day-2026.md) - Hullo there, The 28th of June is International PKU Day: a chance for the Low Protein community to raise awareness of Phenylketonuria and allied inherited metabolic conditions, like Tyrosinaemia. To mark it, I am launching my YouTube channel: youtube.com/@PaulineAuthor It is a space for practical Lo…
- [Heatwaves & Brain Injury](https://www.pigpen.page/abi-and-heat-waves.md) - A brain injury can sometimes cause problems with temperature regulation, making it harder for survivors to control their body temperature.
- [June 2026](https://www.pigpen.page/june-2026.md) - June 2026 roundup: PKU news, menstruation study, rare disease advances, brain injury AMA with Dr Putrino, plus PigPen recipes & stories
- [YouTube soft launch](https://www.pigpen.page/youtube-soft-launch.md) - My first YouTube video! And your feedback would mean the world to me. This is brand-new territory for me, and I want to get it right.
- [You are more than your PKU!](https://www.pigpen.page/you-are-more-than-your-pku.md) - Maddison shares 'One piece of advice I’ve always had is don’t let PKU define YOU as a person. You are more than your PKU!'
- [Tips for PKU and non-PKU pasta](https://www.pigpen.page/tips-for-pku-and-non-pku-pasta.md) - I once knew a Frenchman who insisted that pasta cooked without salt and oil was an abomination. I tried it, and can confirm that both PKU and non-PKU pasta benefit
- [May 2026](https://www.pigpen.page/may-2026-2.md) - A bumper bank holiday edition: May brings local elections in the UK, find out about ID’s & accessible voting. Plus, updates from the NSPKU conference, help with research.
- [NSPKU England 2026 conference](https://www.pigpen.page/nspku-england-2026-conference.md) - Updates from the NSPKU 2026 conference: Future PKU treatments (sepipapterin, kidney treatments), Home Blood Phe Monitoring, and research updates on Phenylketonuria.
- [April 2026 news](https://www.pigpen.page/april-2026.md) - April Update; Catch up on the PKU, Brain and mental health stories behind the turbulence of March. Plus, ideas to refresh PKU food.
- [46 March 2026](https://www.pigpen.page/march-2026.md) - Rare Disease Day Reports, PKU GI research, Low Protein Pancake recipes, brain injury app trials, and a book sale ending 7th March!
- [Welcome, start here!](https://www.pigpen.page/start-here.md) - Welcome to PigPen — a space for lived experience, research, and storytelling around PKU, brain injury, and mental health.
- [Share Your Story](https://www.pigpen.page/share-your-story-2.md) - I believe that every story matters. If you’d like to share your experience — whether funny, heartfelt, or practical — on my blog, please get in touch
- [When the Parent Has PKU](https://www.pigpen.page/when-the-parent-has-pku.md) - The day my baby was born, as well as all the emotions that I felt on finally getting to meet my baby girl, I was so relieved that I had done it. All that hard work I put into my diet for over 2 years had been worth it, she was perfect!
- [PKU, Protein, and Pressure](https://www.pigpen.page/pku-protein-and-pressure.md) - I’ve never struggled too much with my diet... What has affected me is the mental state the diet puts me in. The constant weighing and measure of every option before me. The anxiety of it.
- [Share Your Story](https://www.pigpen.page/share-your-story.md) - Every story adds to our shared understanding of PKU. The post can be anonymous, we don’t have to share your name. Join our community and share your story today
- [Lived Experiences of Genomic Testing](https://www.pigpen.page/lived-experiences-of-genomic-testing.md) - Genomic testing isn’t just about science—it’s about people. This blog explores the emotional rollercoaster of the UK Sapropterin rollout and why patient voices matter.
- [PKU Pancakes](https://www.pigpen.page/pku-pancakes.md) - An easy low protein recipe for reliable PKU pancakes: photos & video guides :) Ideas for protein-free, and measured protein toppings.
- [February 2026](https://www.pigpen.page/february-2026.md) - A free workshop on Living with PKU; Genetic medicine, personalised treatments, and PKU; Campaigning for change in strokes and brain injury support; and What is the PKU injection (Palynziq)?
- [What is Palynziq?](https://www.pigpen.page/what-is-palynziq.md) - Also known as Pegvaliase, or PAL, or PEG-PAL. PAL stands for Phenylalanine Ammonia Lyase, which is a plant enzyme with breaks down phe. This is why it has been developed as a treatment for those of us with PKU.
- [January 2026](https://www.pigpen.page/january-2026.md) - Resolutions: One thing at a time! Advice for managing PKU; Celebrities and 'brain holes'?; Please help with adult research; Dates for the diary; Plus: find ALL of my Low Protein recipes.
- [Twixtmas reading, 2025](https://www.pigpen.page/twixtmas-reading-2025.md) - 18 reading suggestions to curl up with while polishing off leftovers. The articles include PKU research and updates; Rare Disease and advocacy articles; then Brain, neurological, and mental health reading.
- [December 2025](https://www.pigpen.page/december-2025.md) - From new breakthroughs to Christmas tips and recipes, here are the PKU and Brain stories worth knowing about in December 2025.
- [NSPKU in Wales 2025](https://www.pigpen.page/nspku-in-wales-2025.md) - From the psychology of living with PKU to new treatment pathways and the fight for fair access, highlights from this year’s NSPKU Conference in Wales.
- [Mushroom & Jackfruit Wellingtons](https://www.pigpen.page/mushroom-jackfruit-wellingtons.md) - This recipe makes four individual, low protein Wellingtons. They are great for Christmas or Thanksgiving, yet are so easy that I’ve been making them as a mid-week dinner.
- [RareSummit 25](https://www.pigpen.page/raresummit-25.md) - My first RARESummit: What I Learned from a Day of Rare Voices. CamRARE’s 2025 event reflected on “A decade of impact. A future of possibilities”.
- [Meta Healthcare’s new low-protein products](https://www.pigpen.page/metas-new-low-protein-products.md) - Here’s what I discovered about Meta Healthcare's new-to-UK low-protein Salty sticks (breadsticks) and Pizza crackers. Plus a kitchen trial of a new chicken-substitute.
- [Nov 2025](https://www.pigpen.page/nov-2025.md) - AI and a golden age of medicine, more on UK Pharma, the latest in PKU treatments, new neurological rehab guidelines, and much more.
- [PKU friendly recipes to try in October](https://www.pigpen.page/pku-friendly-recipes-to-try-in-october.md) - October: a time for warming oven dishes, and keeping things simple. Here are two Easy, low-Protein, PKU friendly dishes to try this autumn.
- [What’s in the treatment pipeline](https://www.pigpen.page/whats-in-the-treatment-pipeline.md) - Insights from Prof. MacDonald’s talk at NSPKU 2025 — Sepiapterin, JNT-517, and more — and what they might mean for adults living with PKU.
- [News for Oct 2025](https://www.pigpen.page/oct-2025.md) - Developments in UK Pharma, and why they matter for those with PKU or brain conditions. Another new PKU treatment. Exciting developments in concussion detection - and much more
- [Four quick ‘school-night’ dinners](https://www.pigpen.page/four-quick-school-night-dinners.md) - Quick, easy dinners that satisfy both the PKU diet and your taste buds.Three recipes are Phe-free; the fourth has 2.5 g Phe per adult portion, with optional additions if you need more.
- [Sept 2025](https://www.pigpen.page/sept-2025.md) - News for September 2025: PKU App now free, More help for long-term conditions, New PKU podcast, Four new recipe sites to try - and much more. Subscribe today for free.
- [Falling Forward](https://www.pigpen.page/ultra-running-for-pku.md) - Ian had no idea how much that first marathon would change his life. He had only ever intended to run a single marathon. Until Sharon challenged him to run one in under 4 hours. So they signed up for another marathon, and then another.
- [Fennel and orange salad](https://www.pigpen.page/fennel-and-orange-salad.md) - An easy, no-cook, low-protein salad which is 1g protein per portion. This recipe serves two as a main or four as a side salad. Protein-free option provided. Needs one hour to marinate.
- [Endurance training with PKU & brain injury](https://www.pigpen.page/endurance-training-with-pku-brain-injury.md) - Living with PKU means juggling the restrictions of a low-protein diet therapy with the demands of every day metabolism. Throwing in an endurance challenge means I need to double-down on ensuring I’m getting enough energy and nutrition without exceeding my protein limit.
- [July 2025](https://www.pigpen.page/july-2025.md) - July 2025 news: Men's voices in healthcare, EU approves new PKU treatment, New Books for PKU kids, & Neuroplasticity in brain injury recovery.
- [372 Miles for PKU](https://www.pigpen.page/bristol-to-newcastle-2025.md) - It’s a stretch of tarmac, and trail most of us only see through a windscreen—yet Ian will cover every metre on foot to raise money for NSPKU (Phenylketonuria)
- [PKU kids books](https://www.pigpen.page/pku-kids-books.md) - Designed especially for children with Phenylketonuria. Full of foods which are considered protein-free for PKU in the UK, and have been checked by PKU clinicians.
- [June 2025](https://www.pigpen.page/june-2025.md) - First CRISPR treatment for a rare genetic disease, Cost of brain injury to the economy, Low-Protein recipe of the month, and much more...
- [Rare Creatives’ Lives](https://www.pigpen.page/rare-creatives-lives-event.md) - Catch up on YouTube: "Rare Creatives’ Lives: Storytellers on Rare Disease in the Arts". All guest creatives have PKU in the family:
- [Low-protein Waldorf Salad](https://www.pigpen.page/low-protein-waldorf-salad.md) - An easy, & PKU-friendly Waldorf salad for a quick, healthy lunch. 1g protein / 1 phe in the UK. I use pine nuts for the protein as you get more 'nuts' per serving.
- [The Memory: we that are left](https://www.pigpen.page/the-memory.md) - A short story in memory of those who fought, released freely on the 80th anniversary of VE Day. From "The Red Hat Stories" by Pauline O'Connor.
- [May 2025](https://www.pigpen.page/may-2025.md) - Could you walk 24 miles (39 km) in one day? Or try a different challenge this PKU awareness month. Plus, a low-protein recipe, and brain injury on stage.
- [April 2025](https://www.pigpen.page/april-2025.md) - Packed with Easter tips, ideas for school holiday baking, new brain injury research, and a chance to report on the NSPKU conference.
- [Living with Mild Brain Injury](https://www.pigpen.page/mild-brain-injury-3.md) - “Incredibly vivid... this book will be of great benefit to professionals, survivors and their families alike.” Dr Neil Parrett. Consultant Clinical Psychologist (Neurorehabilitation)
- [The origins of PKU treatment](https://www.pigpen.page/origins-of-pku-treatment.md) - Prof. Anita MacDonald presented the origins of PKU treatment on an afternoon of PKU legends, both past and present.
- [Financial Support](https://www.pigpen.page/financial-support.md) - Information on financial support for those in the UK with Inherited Metabolic Disorders (IMDs). Including links to information for support other countries (below article).
- [March 2025](https://www.pigpen.page/march-2025.md) - Spring news: new UK patient guides, updates on the NSPKU conference and activity weekend, plus insights into brain injury rehab. Also, my Low Phe ABC book is almost here! Read more & join the conversation.
- [What is PKU?](https://www.pigpen.page/what-is-pku.md) - Explaining PKU, Phenylketonuria, a rare inherited metabolic condition treated by a low-protein diet.
- [Publishing paths](https://www.pigpen.page/publishing-paths.md) - My experience of traditional and self publishing, and the lessons learned! This is a tough industry, and the average author’s income is declining.
- [Community Spotlight February](https://www.pigpen.page/february-2025.md) - New PKU books, home phe monitoring update, Mental Health Insights & Rare Disease Day, 28 February 2025
- [When the baby is not OK](https://www.pigpen.page/when-the-baby-is-not-ok.md) - A memoir of Motherhood and PKU. “When the Baby Is Not OK: Hopes & Genes” by Jennifer J. Brown
- [Metabolic Support UK](https://www.pigpen.page/metabolic-support-uk.md) - Similar to the NSPKU, MSUK was started by a family trying to find information about their child’s rare disease. However, MSUK encompasses all IMD’s, of which PKU is the most common
- [Share your challenges of Living with PKU](https://www.pigpen.page/paid-research-1.md) - Take part in paid market research on the challenges of living with PKU. The online session is 90 minutes, and you will receive £100 compensation for your time.
- [PKU Mac & Cheese](https://www.pigpen.page/pku-mac-cheese.md) - An easy, low-protein macaroni and cheese recipe, with options for adding more protein if your PKU allows.
- [January 2025](https://www.pigpen.page/january-2025.md) - Book ideas to start your 2025 well; Fad diets in January; back to basics with a PKU bread maker recipe.
- [Ginger and dark chocolate cookies](https://www.pigpen.page/ginger-and-dark-chocolate-cookies.md) - Delicious, chewy ginger and chocolate cookies with an orange hint. These are low protein and protein-free options for PKU and other restricted diets.
- [Eating out with PKU](https://www.pigpen.page/eating-out-with-pku.md) - Eating out can be a challenge for those of us following a low-protein (or PKU) diet. Here are some tips and recommendations.
- [Low protein books](https://www.pigpen.page/low-protein-books.md) - A selection of low protein books for adults and children. Gift ideas for those new to PKU and inherited metabolic disorders. Plus, a free gift for subscribers.
- [December 2024](https://www.pigpen.page/december-2024.md) - Monthly round up includes recipes and tips for Christmas, accessing NHS prescriptions, and a reminder to bag your free copy of Mental health & PKU.
- [PKU at Christmas](https://www.pigpen.page/pku-at-christmas.md) - Tips and links to help with a low protein Christmas or Thanksgiving. I’ve included PKU and low protein menu suggestions & recipes.
- [Fragrant carrot soup](https://www.pigpen.page/fragrant-carrot-soup.md) - A low protein (possibly protein-free depending on your regime) curried carrot soup for chilly days. Makes an easy PKU meal with 10 mins prep and 30 minutes cooking time.
- [Ensuring prescriptions on the NHS](https://www.pigpen.page/ensuring-prescriptions-on-the-nhs.md) - Challenges to our treatment regime shouldn’t happen. Sadly, this isn’t an ideal world. These questions are annoying and exhausting, and it is important to be firm and clear in your response.
- [Hello there](https://www.pigpen.page/hello.md) - Welcome to the PigPen community — a place for connection, insight, and hope through science and storytelling. I’m thrilled to have you on board.
- [Join the conversation!](https://www.pigpen.page/join-the-conversation.md) - Joining is a breeze. Sign up for free today and start contributing to the conversation—don’t miss out on the fun!
- [The Red Hat Stories](https://www.pigpen.page/the-red-hat-stories-2-2.md) - An enticing collection of short stories which explore the connections between strangers on the streets of London.
- [Adults’ experience of PKU clinic](https://www.pigpen.page/adults-experience-of-pku-clinic.md) - There was a wide discrepancy in the services which UK adults received at their PKU appointments.
- [Rare Minds Workshop](https://www.pigpen.page/rare-minds-workshop.md) - The NSPKU contacted a mental health charity specialising in supporting those with rare diseases—Rare Minds.
- [All of our voices, together](https://www.pigpen.page/all-of-our-voices-together.md) - The fight for sapropterin means the NSPKU team now know a great deal about the licensing process. This bodes well for future campaigns. As does the experience, which shows that the advocacy of patients tipped the balance.
- [PKU United panel](https://www.pigpen.page/pku-united-panel.md) - One of the consistent highlights of NSPKU conferences over the years has been the patient panel. This year, the panel was called PKU United. Because we are stronger as a united community.
- [Sitemap / tags](https://www.pigpen.page/sitemap.md) - Pauline O'Connor (PigPen) articles on PKU, Brain Injury, mental health, Phenylketonuria, concussion, TBI, ABI, Rare Disease
- [Lived Experiences of Sapropterin](https://www.pigpen.page/lived-experiences-of-sapropterin.md) - An NSPKU presentation on a forthcoming PhD “to collect information about the rollout and response testing for sapropterin treatment in England since its availability on the NHS for all ages in 2021”.
- [#PKUDay2024](https://www.pigpen.page/pkuday2024.md) - Exciting new research and clinical trials in the UK, which you can support for PKU Day 2024. June 28 is a chance for this rare disease community to raise awareness of the inherited metabolic condition, Phenylketonuria (PKU).
- [Review of the EU Guidelines on PKU](https://www.pigpen.page/eu-guidelines-on-pku.md) - The guidelines...help inform policy changes and establish the best treatment practices in places where those are still being developed, and to support those in areas where treatment falls short.
- [Brain Injury News, June 2024](https://www.pigpen.page/brain-injury-news-june-2024.md) - - A brain injury manifesto for the UK election - Two research opportunities - Share your views on medicine shortages. - And tell the government what you think of PIP
- [PKU News, June 2024](https://www.pigpen.page/pku-news-june-2024.md) - Update on sepiapterin and other groundbreaking treatments. A primer on the PKU injection treatment PegPal, AKA Pegvaliase or Palynziq. A new way to distribute treatments for Rare Disease?
- [PKU future treatment update](https://www.pigpen.page/pku-future-treatment-update.md) - The NSPKU conference held from 17-19 May 2024 included an update on possible new treatments for PKU. These are my notes from the sessions on sepiapterin, mRNA, gene therapy, solute carrier 6, and options for PegPal.
- [Brain injury news, May 2024](https://www.pigpen.page/brain-injury-news-may-2024.md) - This research study is looking at ways to improve mood after brain injury by taking part in rewarding activities
- [PKU news May 2024](https://www.pigpen.page/pku-news-may-2024.md) - Looking for a massive online resource with recipe & product ideas, managing PKU and fitness, and honesty about living with PKU? Check out Tristan’s blog...
- [Kickstarting The Red Hat Stories](https://www.pigpen.page/kickstarting-the-red-hat-stories.md) - This short story anthology is my first fiction book, and the choice to try a Kickstarter was strategic. The Kickstarter campaign successfully funded! Grab your copy now
- [Speaking at the WI](https://www.pigpen.page/speaking-at-the-wi.md) - I encourage fellow authors to explore speaking at local groups. They are a powerful platform not just for income, but for raising awareness and connecting with communities.
- [Neuro Navigators](https://www.pigpen.page/neuro-navigators.md) - Neuro Navigators help patients to understand the process of neurological rehabilitation. How to find them in London.
- [Starting the Conversation](https://www.pigpen.page/starting-the-conversation.md) - We wanted a space where adults with PKU felt able to hold an open discussion about managing PKU, and to collect data about our concerns in real time.
- [Emergency travel with PKU](https://www.pigpen.page/emergency-travel-with-pku.md) - People with PKU need to prepare for the unexpected, here are my tips for travel. What are yours?
- [What is LNAA?](https://www.pigpen.page/what-is-lnaa.md) - Large Neutral Amino Acid (LNAA) treatment for PKU This is a supplementary therapy for PKU which is in use in some European countries. It is particularly aimed at those with mild PKU
- [Tips for blood spots](https://www.pigpen.page/tips-for-blood-spots.md) - TW: discusses blood and needles. Not all lancets are equal! While no blood collection method is fun or painless, the type of lancet used does have a significant effect on pain and healing.
- [Sapropterin trial, part 3: the trial](https://www.pigpen.page/sapropterin-trial-part-3-the-trial.md) - The blood spots from my first week on the pills seemed to show a drop. I admit that I began to get excited. That was a mistake, and one I’d encourage others to avoid.
- [Sapropterin trial, part 2: Baseline testing](https://www.pigpen.page/sapropterin-trial-part-2-baseline-testing.md) - Maintaining this level of control would be a tough ask. But I discovered that, when I thought I had been strict on my diet in the past, I really hadn’t.
- [Sapropterin trial, part 1: genetics & patience.](https://www.pigpen.page/sapropterin-trial-part-1.md) - A year after I went in for blood tests to determine if my PKU would respond, I finally took my first dose of sapropterin.
- [Happy Birthday to Living with PKU](https://www.pigpen.page/happy-birthday-to-living-with-pku.md) - Living with PKU hit NUMBER 1 in the Genetics hottest releases list. It also made the top 6 bestsellers list, up there with Richard Dawkins and Adam Rutherford.
- [The genetics of PKU](https://www.pigpen.page/the-genetics-of-pku.md) - A simple run down of the genetics of PKU, and how that relates to sapropterin testing. I’m going for the “Explain like I’m five” version here!
- [PKU Raisin Scones](https://www.pigpen.page/pku-raisin-scones.md) - Tasty, fluffy, protein-free raisin scone recipe - with pictures and baking tips for people on Low Protein diets like PKU, Phenylketonuria.
- [Cucumber and avocado smoothie](https://www.pigpen.page/cucumber-and-avocado-smoothie.md) - Something a bit different for hot weather and PKU meals. I came across this as a recipe for a ‘no-cook’ soup but in both temperature and texture it is best described as a smoothie. 2g protein, Low Protein
- [Fennel and 'cheese' salad](https://www.pigpen.page/shaved-fennel-and-cheese-salad.md) - PKU and heatwave friendly 'no-cook' recipe fennel and 'cheese salad'. Can be made phe-free, low-protein, or add protein as needed.
- [Protein-free Carrot Cake](https://www.pigpen.page/protein-free-carrot-cake.md) - A protein-free carrot cake recipe with picutures. It is great for PKU celebrations or the occasional treat. (0.45g of protein in the entire cake)
- [Newsletter 8 - January](https://www.pigpen.page/newsletter-8-january.md) - How a new perspective might help you in 2023. Another new PKU treatment(!), & helping with PKU research. Plus, 5 ways to wellbeing through kindness. (Jan 2023 newsletter)
- [Campaign update at NSPKU2022.](https://www.pigpen.page/campaign-update-at-nspku2022.md) - Liz Twist MP spoke to the conference in her role as Chair of the All Party Parliamentary Group (APPG) for PKU. She began by extolling the difference which Sapropterin makes for those who respond, but she also acknowledged the need to work for those who do not respond.
- [Review: five Sphere flavours](https://www.pigpen.page/review-five-sphere-flavours.md) - Vitaflo Sphere have two new, and frankly delicious, flavours in their supplement range. I tried all five flavours in one day and took notes for you.
- [New book: Living with PKU](https://www.pigpen.page/new-book-living-with-pku.md) - No one’s PKU is quite the same, yet we can support each other. I don’t pretend to have all the answers, but this book contains what I know from forty years of Living With PKU
- [PKU recipe for breadmakers](https://www.pigpen.page/pku-recipe-for-breadmakers.md) - A reliable recipe for making PKU bread in a breadmaker. I've used this recipe for years, and it consistently makes a soft, white loaf. Plus, how to avoid that hard ring of flour and using psyllium husks.
- [Everyday acts of kindness](https://www.pigpen.page/everyday-acts-of-kindness.md) - We are all aware that it is good to be kind. New research has found that, as well as benefiting the person you are being kind to, offering an act of kindness has benefits for you too.
- [The dogs of change](https://www.pigpen.page/the-dogs-of-change.md) - Dog sitting has helped me realised how quickly we can adapt. Change may happen quickly or slowly, but we can adapt to either.
- [100 in June 2021](https://www.pigpen.page/100-in-june-2021.md) - June was a busy month for the PKU family as we ran, cycled, walked, planked, push-upped our way towards International PKU day.
- [Dizziness after brain injury](https://www.pigpen.page/dizziness-after-brain-injury.md) - Dizziness can be hidden behind other injuries at first and can even interfere with treatments. When you are finally up and moving around, dizziness can be very isolating.
- [100 for PKU](https://www.pigpen.page/100-for-pku.md) - The campaign aims to get people active by setting a target to hit this month. Your target is 100. 100 km cycling or running, 100 minutes exercising, 100 push-ups, 100 lengths of the pool, 100 hula hoops-a-hooping... The possibilities are endless.
- [PKU awareness month 2021](https://www.pigpen.page/pku-awareness-month-2021.md) - PKU Awareness month has been difficult for me. My adherence to diet has not been great. It is odd to admit that I’m over 40 and still find myself sneaking food.
- [Fatigue after ABI: boom and bust](https://www.pigpen.page/fatigue-after-abi-boom-and-bust.md) - Fatigue caused by an illness or injury is known as pathological fatigue. This isn’t the same as simply being tired...Pathological fatigue is always there.
- [PKU ‘Fish’ fingers](https://www.pigpen.page/pku-fish-fingers.md) - When I asked my friends for their recommendations for my first ‘fish’ finger supper, the reply was ‘I haven’t had those since I was 10.’ There is no reason for fish fingers to be a child only meal, we face too many food restrictions for that nonsense.
- [Research & changes in sport related ABI](https://www.pigpen.page/research-changes-in-sport-related-abi.md) - We should be using the phrase ‘sport related ABI’. This is because ‘particularly for neurodegeneration, it is not really about concussions, it is about knocks to the head.’
- [First income as an author](https://www.pigpen.page/first-income-as-an-author.md) - This income wasn’t from directly from book sales nor from my publisher. Rather it came from secondary uses of my work.
- [Change and neuroplasticity](https://www.pigpen.page/change-and-neuroplasticity.md) - Just as a brain injury survivor can find hope in neuroplasticity, so can someone rebuilding during and after the pandemic.
- [PKU and non-PKU lasagne in the same dish.](https://www.pigpen.page/pku-and-non-pku-lasagne-in-the-same-dish.md) - A 2-in-1 lasagne. A single dish with one half PKU lasagne and the other non-PKU lasagne. Good for winter dinners, with enough for leftovers in the freezer
- [Dear New Zealand,](https://www.pigpen.page/dear-new-zealand.md) - I want to tell you what we have learned so far. It will get worse before it gets better. Just because someone is being a dick, it doesn’t mean you should be a dick too.
- [Follow a plan, not a feeling: Finding a way out of low mood.](https://www.pigpen.page/follow-a-plan-not-a-feeling-finding-a-way-out-of-low-mood.md) - Even with the promise of a better feeling ahead, it can be difficult to drag yourself into an activity when in a low mood. This is where the research meetings helped me.
- [PKU and being ‘Hangry’.](https://www.pigpen.page/pku-and-being-hangry.md) - Satiety and 'hanger' can be a problem for those with PKU. Here are a few tips to help you to feel full on a low-protein diet.
- [Resolution redux](https://www.pigpen.page/resolution-redux.md) - If you have struggled with the changes, remember that by simply paying attention to what you are eating you are already making a difference. The habits and effects will come.
- [New Year, New Book](https://www.pigpen.page/new-year-new-book.md) - It is unnerving to send a story out into the world, but I’m grateful to see that is has been well received: “Incredibly vivid... this book will be of great benefit to professionals, survivors and their families alike.”
- [Art and Music Therapy in a Pandemic](https://www.pigpen.page/abil-seminar-lead-in.md) - The use of music as a reabilitation tool alongside other therapies had never occurred to me. Elizabeth Nightingale, the Neurological Services lead at Chiltern Neuro and Medical services provided an introduction to this fascinating field.
- [Rugby concussions and Cricket rigour](https://www.pigpen.page/rugby-concussions-and-cricket-rigour.md) - We must continue to raise awareness of brain injury so that participants in all sports can make an informed decision about their safety.
- [Gyms and PKU](https://www.pigpen.page/gyms-and-pku.md) - Like with everything, going to the gym should be fun and rewarding... it just takes a bit of time and care - like anything with PKU!
- [Brain injuries and lack of insight](https://www.pigpen.page/brain-injuries-and-lack-of-insight-2.md) - A lack of self-awareness, or a lack of insight, is fairly common in a brain injury survivor. I’ve suffered from and have written about it in my book, but how do you spot it in yourself?
- [Moving with PKU: Get moving!](https://www.pigpen.page/guest-post-moving-with-pku.md) - In his first blog for PigPen.Page, Soheb discussed the benefits and potential pitfalls facing a PKU-er moving out of home for the first time. Part two looks at practicalities of moving and how to prepare.
- [Moving with PKU: Get ready](https://www.pigpen.page/inaugural-guest-post-moving-with-pku.md) - Moving out can be pretty intimidating in itself, but when you have PKU, it can feel incredibly intimidating...If you are considering moving out into a new place, there are a few things you will need to think about carefully.
- [Support for Brain Injury during the pandemic](https://www.pigpen.page/support-for-brain-injury-during-the-pandemic.md) - The pandemic is far from over, but already there are positives to be found in understanding and treating Acquired Brain Injury.
- [Coronavirus, rule changes and ABI](https://www.pigpen.page/coronavirus-rule-changes-and-abi.md) - The pivot to a Covid response has caused considerable disruption to an already strained service. There have been reports that the NHS will not fully recover for four years.
- [A day in the life of PKU](https://www.pigpen.page/a-day-in-the-life-of-pku.md) - 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?
- [NaNoWriMo and daily habits](https://www.pigpen.page/nanowrimo-and-daily-habits.md) - Almost any piece of advice on being a writer will emphasise the need to develop a daily writing habit. This is an allocated time of day when you sit down and write for a set word count or a certain length of time. Famous authors credit a large part of their success to this habit.
- [2020 - halfway through.](https://www.pigpen.page/2020-halfway-through.md) - 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.
- [Dark Chocolate & Ginger Hot Cross Bun loaf](https://www.pigpen.page/dark-chocolate-ginger-hot-cross-bun-loaf.md) - 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
- [Change, ambiguous loss, and spoons](https://www.pigpen.page/change-ambiguous-loss-and-spoons.md) - 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
- [Now it’s summer](https://www.pigpen.page/now-its-summer.md) - I saw a friend on Tuesday. I hadn’t seen her since January. We judged the breeze. Where to sit so one doesn’t breathe on the other?
- [PKU in a time of Covid](https://www.pigpen.page/pku-in-a-time-of-covid.md) - This is a worrying time so I will start by highlighting the NSPKU Video on Coronavirus and the statement on their website.
- [NSPKU 2020](https://www.pigpen.page/nspku-2020.md) - This report covers the Saturday morning session which includes the latest research and legal wrangling on PKU.
- [Fad Diets & PKU](https://www.pigpen.page/fad-diets-pku.md) - Lifestyle diets like veganuary yeild pros & cons for PKU As the prime month for dieting begins, please remember that the ability to chose what you eat, or avoid, is a privilege. Plant-based products help with PKU
- [Blogging Anxiety](https://www.pigpen.page/blogging-anxiety.md) - 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!”
- [Rugby rules, football failures and concussions in sport.](https://www.pigpen.page/rugby-rules-football-failures-and-concussions-in-sport.md) - The last few years have seen numerous studies showing the damage which contact sports can cause to the brain. This has moved the argument on...to how to make the sports safer...But as fast as these rules are introduced, loopholes are found.
- [ABI & Gardening](https://www.pigpen.page/abi-gardening.md) - Gardening helps |to reduce depression, improve self-esteem and provide brain injury survivors with vital peer support and companionship."
- [Fitness, BMI, & PKU](https://www.pigpen.page/fitness-bmi-pku.md) - Living with PKU means my weight is regularly discussed. Throw in the messages, conscious and unconscious, about weight from society in general, and you quickly see that we deal carry a greater burden of weight issues than many.
- [Pausing the anxiety cycle](https://www.pigpen.page/pausing-the-anxiety-cycle.md) - Learn how to pause the anxiety cycle using self-compassion and mindfulness, including the RAIN technique, to create space and emotional clarity. If there ever was a time to be kind to yourself, this is it.
- [Brain Injury and exercise](https://www.pigpen.page/brain-injury-and-exercise.md) - Exercise has many benefits, but what exercises can you do after a brain injury? My experience may help, and possibly inspire you to try a new fitness activity.
- [Concussion substitutes now allowed in international cricket.](https://www.pigpen.page/concussion-substitutes-now-allowed-in-international-cricket.md) - In a landmark rule change, cricket teams will be able to replace concussed players during international games. This is exciting news for brain injury awareness, brain injury prevention and for sports fans.
- [Cheese Scones and tips](https://www.pigpen.page/cheese-scones-and-tips.md) - Tasty, fluffy, protein-free cheese scone recipe - with pictures and baking tips for people on Low Protein diets like PKU, Phenylketonuria.
- [Webinar - Healthy eating on a low protein diet](https://www.pigpen.page/webinar-healthy-eating-on-a-low-protein-diet.md) - 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.
- [UKABIF at Parliament](https://www.pigpen.page/ukabif-at-parliament.md) - Two weeks after Chris Bryant MP led a debate in Parliament on Acquired Brain Injury (ABI) he co-hosted a Lobbying Reception in Speakers House. The aim of the event was to raise awareness of ABI and of the need to improve neuro-rehabilitation facilities.
- [All Party Parliamentary Group (APPG) for Acquired Brain Injury](https://www.pigpen.page/all-party-parliamentary-group-appg-for-acquired-brain-injury.md) - Explore the APPG for Acquired Brain Injury: its mission, recent work, and how policies affect those living with brain injury in the UK.
- [PKU Awareness Month Challenge](https://www.pigpen.page/pku-awareness-month-challenge.md) - A challenge for May, PKU Awareness Month: tell someone about PKU. Over time, I've learned that life is easier if others know of the rare disease, Phenylketonuria.
- [New Waitrose Vegan Range](https://www.pigpen.page/waitroseveganrange.md) - It seems there is a new Vegan range at Waitrose and I picked up two of them for a weekend taste-a-thon.
- [What is GMP?](https://www.pigpen.page/what-is-gmp.md) - Learn what GMP is, how it supports people with PKU, and why it’s used in low-protein diets. A clear guide to benefits, safety, and daily use.
- [Chocolate Sphere trial: results!](https://www.pigpen.page/chocolate-sphere-trial-results.md) - 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?
- [ABIL Conference March 2019 - Brain Injury and Mental Health](https://www.pigpen.page/abil-march-2019.md) - ABIL Conference March 2019 - Brain Injury and Mental Health The conference programme promised a varied group of speakers who presented to a packed house at Irwin Mitchell in Holborn, central London.
- [Who are ABIL? Acquired Brain Injury London](https://www.pigpen.page/who-are-abil-acquired-brain-injury-forum-for-london.md) - Various groups from across London who work together to raise awareness of Brain Injury and to press for care services.
- [New Chocolate Sphere](https://www.pigpen.page/new-chocolate-sphere.md) - 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.
- [Concussion, cavernoma, & vestibular migraines](https://www.pigpen.page/pollys-brain-injury.md) - Living with Mild Brain Injury, a story of concussion, cavernoma & vestibular migraines. With practical lessons, recovery tips, and advocacy for brain injury.

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