Writing
Low protein books
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.
Mental health
Articles regarding mental health when living with long-term health conditions; such as PKU, Phenylketonuria, rare disease, inherited metabolic disorders, brain injury, concussion, post concussion syndrome, anxiety, TBI, ABI.
Conferences
Rare Minds Workshop
The NSPKU contacted a mental health charity specialising in supporting those with rare diseases—Rare Minds.
News
Starting the Conversation
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.
Brain Injury
Newsletter 8 - January
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)
Everyday acts of kindness
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.
Brain Injury
The dogs of change
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
June was a busy month for the PKU family as we ran, cycled, walked, planked, push-upped our way towards International PKU day.
Mental health
100 for PKU
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.
Mental health
PKU awareness month 2021
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.
Brain Injury
Fatigue after ABI: boom and bust
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.
Writing
Dear New Zealand,
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.
Mental health
Follow a plan, not a feeling: Finding a way out of low mood
Low mood after a brain injury can feel impossible to shift. Following a plan, not a feeling, helped me find a way through. Here's what I learned from behavioural activation and taking part in brain injury research.