Alana’s Epilepsy Mission

09/08/2026

WHAT TO DO IF SOMEONE IS HAVING A NON-CONVULSIVE SEIZURE

Firstly, what is a non-convulsive seizure?

Quite simply, it is a seizure where the person is not visibly convulsing.

They may:
• Seem absent or unresponsive
• Look like they are daydreaming
• Stare blankly
• Make unusual or repetitive movements
• Behave differently or appear confused
• Be unable to respond normally

Just because someone isn’t shaking does not mean they aren’t having a seizure.

SO, WHAT SHOULD YOU DO?

1️⃣ TIME THE SEIZURE

As with any seizure, note when it starts and keep track of how long it lasts.

2️⃣ KEEP THEM SAFE

Do not restrain them.

Move anything nearby that they could injure themselves on and give them space. Stay with them and calmly monitor what is happening.

3️⃣ WHEN THEY COME AROUND

Gently reassure them and remind them where they are.

They may not realise they’ve had a seizure, so calmly let them know what has happened.

4️⃣ IF THE SEIZURE LASTS LONGER THAN 5 MINUTES

If you know the person’s individual emergency management plan, follow it.

Every person’s epilepsy is different. Their plan may tell you to:
• Give emergency medication at a specific time
• Contact their medical team
• Call 999
• Continue monitoring for a specified period

Follow their individual plan.

For example, with my daughter Alana, her emergency management plan states that for a non-convulsive seizure, we administer her emergency medication after 30 minutes.

That is Alana’s individual plan and should not be used as a general rule for someone else.

IF YOU DON’T KNOW THE PERSON OR THEIR EMERGENCY PLAN

If the non-convulsive seizure has lasted more than 5 minutes, seek medical help.

📞 Call 999

Tell the emergency operator:
• The person is having a non-convulsive seizure
• You don’t know the person or their emergency plan
• How long the seizure has lasted
• Any other relevant information you have observed

Remember:

A seizure doesn’t always look like shaking.

Sometimes, the most dangerous seizures can be the ones that aren’t immediately obvious.

TIME IT. KEEP THEM SAFE. STAY WITH THEM. FOLLOW THEIR PLAN.

💜Alana’s Epilepsy Mission 💜

08/08/2026

‼️PLEASE SIGN OUR PETITION link below 👇 ✍️ https://c.org/GgGVgy9qrg

Paramedics, often the first medical responders during a seizure, must be adequately trained to identify and manage all types of seizures, including non-convulsive seizures which are often overlooked. Current training programs for paramedics and medical professionals frequently fall short, lacking comprehensive and updated content on the full spectrum of seizure types.

Statistics indicate that approximately 1 in 26 people will develop epilepsy at some point in their lives. Despite its prevalence, epilepsy awareness and education remain inadequate. This gap in knowledge and preparedness can mean the difference between life and death during a seizure episode, especially in cases of complex, drug-resistant epilepsy.

This isn’t just our experience, it’s supported by evidence.

👉🏻 Research suggests that UK paramedics do not currently receive comprehensive epilepsy awareness training.

Studies have found that: Only 27% of UK paramedics feel very or extremely confident making non-conveyance decisions for people experiencing seizures.

Training often focuses on convulsive status epilepticus, while seizure recognition, seizure differentiation, and post-seizure risk assessment receive far less attention.

Limited access to patient medical histories and specialist care pathways can lead to unnecessary hospital conveyance, placing additional pressure on emergency departments and causing avoidable distress for patients and families.

We call for mandatory training requirements to be established for all paramedics and healthcare providers to encompass comprehensive education on all types of seizures.

Click the link below to sign and please share 💜 with many thanks Alana & Alana’s mummy 💜

https://c.org/GgGVgy9qrg

Mandatory Comprehensive Epilepsy Awareness Training for Paramedics

08/08/2026

☕💜 Just a reminder! 💜☕

The Plymouth Epilepsy Support Group Coffee & Chat is this coming Wednesday (12th August) and we’d love to see you there!

🗓️ Wednesday 12th August
🕛 12:00pm – 2:00pm
📍 Plymouth Unitarian Church, Notte Street

Whether you’re living with epilepsy, supporting someone who is, or simply looking for a friendly and understanding community, you’re very welcome to join us.

Pop in for a cuppa, a chat, and a relaxed afternoon with people who understand. New faces are always welcome – there’s no need to book, just come along. ☕💜

Alana and I are away on holiday but will be back in September again 💜

07/08/2026

07/08/2026

Earlier this year, Hairy Biker Si King, who lost his friend and TV co-star Dave Myers in 2024, praised the concept of a 'wind phone', which lets those left behind after death speak to their loved ones.

07/08/2026

🧠 Neuroplasticity: The Brain’s Greatest Strength… and One of Epilepsy’s Biggest Challenges

Neuroplasticity is the brain’s incredible ability to change, adapt and form new connections throughout life. It helps us learn, recover from injury and develop new skills.

But in epilepsy, neuroplasticity has a more complicated role.

Every seizure can strengthen abnormal neural pathways, making it easier for future seizures to occur. Repeated seizures can alter brain networks, damage important areas such as the hippocampus, and recruit healthy brain tissue into seizure activity. This is one reason why some forms of epilepsy can become more difficult to control over time.

The good news is that neuroplasticity can also work for us.

Modern treatments, including responsive neurostimulation, aim to retrain abnormal brain circuits using carefully targeted electrical stimulation. Researchers are also exploring ways to encourage the brain to release its own natural calming chemicals, helping to reduce seizure activity and build resilience. Alongside appropriate medication, good sleep, healthy routines and therapeutic support, these approaches can help protect brain function and support recovery.

Neuroplasticity reminds us that the brain is constantly changing. While epilepsy can reshape the brain in harmful ways, science is increasingly finding ways to harness that same adaptability to improve outcomes and quality of life.

💜 Understanding how the brain changes helps us better understand epilepsy and why continued research, innovation and support are so important.

05/08/2026

We’re delighted to share that we’ve recently taken on a new role as vloggers for Epilepsy Action 💜

If you’re not already following them, please do, and consider sharing their content. Every share, comment and conversation helps raise awareness, challenge misconceptions, and amplify the voices of people living with epilepsy.

Together, we can help saturate social media with meaningful epilepsy awareness, education and advocacy.

05/08/2026

Cruelly, and yet so beautifully, our children will teach us more than we could ever teach them. 💜

Living with epilepsy changes a family. It changes the way you think, the way you plan, the way you dream. There will be moments when your child needs you more than words can describe. You’ll become their safe place, their advocate, their comfort, and sometimes their voice.

But there will also be moments when they leave you completely in awe.

Despite the seizures, the hospital appointments, the uncertainty and everything epilepsy takes from them, they continue to smile, to laugh, to hope, to adapt and to keep going. Their resilience is extraordinary.

As parents, we’re often conditioned to believe that successful parenting means raising children who reach every milestone on time, become independent, achieve academically and fit neatly into society’s expectations. It can feel like a race we never chose to enter.

Epilepsy teaches you to let go of that.

It teaches you that success isn’t measured by how closely your child follows someone else’s path. Success is getting through today. Success is finding joy after a difficult seizure. Success is celebrating the smallest victories that others might never notice.

Our children don’t need to fit into a world that wasn’t designed with them in mind. The world needs to become more understanding, more inclusive and more accepting of them.

So let’s stop comparing.

Let’s stop apologising for lives that look different.

Let’s celebrate our children for who they are, not despite epilepsy, but because of the incredible strength, courage and resilience they show every single day.

Our purple warriors are changing us just as much as we’re fighting for them. And that is one of the greatest privileges of all. 💜

03/08/2026

Today, Alana’s friends rang and asked if she wanted to meet them at the local park. They’d decided to get the bus to our area because they’re practising travelling independently before they start secondary school in September.

And it hit me.

While other children her age are preparing for this exciting new chapter, discovering their independence, learning new routes, and gaining little freedoms, Alana isn’t.

She still went to meet her friends today, but not independently. We had to stick to our routine. Her health had to come first. I packed her emergency medical bag, drove her to the park, and stayed nearby. I found a quiet place to sit so she could laugh, chat, and just be a 12-year-old girl with her friends.

From a distance, it probably looked no different to any other group of children enjoying the summer.

But epilepsy was there too.

That’s the thing about epilepsy. Even in its quiet moments, when there isn’t a seizure, when everything appears calm, it still has a hold on your life. Every decision, every outing, every plan is shaped around the possibility that something could happen. It silently dictates what freedom looks like.

There is something profoundly cruel about a condition that doesn’t have to be visible to change everything.

People often think epilepsy only exists during a seizure. The reality is that it lives in all the moments between them too.

Today, I watched my daughter smile with her friends, and I was grateful. But I also quietly grieved the independence that so many children her age are beginning to experience.

This is what living with epilepsy really looks like. 💜