Epilepsy

I'm Not Ashamed To Sometimes Ask For Help

Laura Rutherford | Posted 10.07.2017 | UK Parents
Laura Rutherford

everybody banner Unfortunately, parents also have to battle and beg local services for help and equipment and, although personally to date, we've been very fortunate with our local services, I am well aware from friends and social media how the services you receive are somewhat a postcode lottery.

Living With Epilepsy

Katy Mann | Posted 06.07.2017 | UK Parents
Katy Mann

everybody banner My kids have devised several ways to help me. James walks behind me with a duvet so he can catch me when I fall. Emily holds on to me and tells me to "SIT DOWN MUMMY" when she sees me get up as only a bossy five year old can. James can push me short distances in the wheelchair and quite enjoys having that control over me! He threatens to push me down hills on a regular basis.

Anti-Epilepsy Drug Restores Normal Brain Activity In Alzheimer's Patients

The Huffington Post | Sophie Gallagher | Posted 26.06.2017 | UK Tech

Scientists have found that doses of a drug designed to treat epilepsy, also has a benefit in restoring normal brain activity in those with mild Alzhei...

National Epilepsy Week

Katy Mann | Posted 19.05.2017 | UK Lifestyle
Katy Mann

Living with epilepsy is really hard and it would be so much easier if people understood the condition more. As I don't have the typical tonic clonic seizures people find it hard to class it as epilepsy. I get asked all the time if I just fell but it was actually a seizure. I also have myoclonic seizures which are jerks and can be very subtle.

How Do I Know If It's A Seizure?

Laura Rutherford | Posted 03.05.2017 | UK Parents
Laura Rutherford

Laughing was never something I ever associated with seizures. Then late one night when I was heavily pregnant with our daughter, Brody was asleep next to me and began laughing hysterically. I turned round to face him and he started having a clonic tonic seizure (I miraculously managed not to go into labour).

The Lack Of Answers When Your Child Is Undiagnosed

Laura Rutherford | Posted 28.04.2017 | UK Parents
Laura Rutherford

Or at least if they don't know the answers straight away, they will in the end. It's not easy to process the reality that they can't always figure things out. That there are unknowns and sometimes - no matter how many tests - some syndromes are so rare they are a needle-in-a-haystack hard to find.

Meningitis And My Family

Katy Mann | Posted 25.04.2017 | UK Lifestyle
Katy Mann

Six and a half years ago my life was changed forever. My baby son Charlie was diagnosed with pneumococcal meningitis. It turned our world upside down when he died six days after his diagnosis. As we lay with our baby while he took his last breath we couldn't believe our cheeky little 15 week old boy had been so cruelly taken from us

More Seizures And Epilepsy Awareness

Katy Mann | Posted 13.04.2017 | UK Lifestyle
Katy Mann

It's been a rather eventful couple of weeks here. I posted on Facebook that I made it to school without my wheelchair one day. Oh how the universe laughed at me. It's all been downhill ever since. My seizures have been terrible the past two weeks.

Pregnant Teen Dies After Having Epileptic Fit In The Bath

The Huffington Post | Jasmin Gray | Posted 05.04.2017 | UK Universities & Education

A pregnant teenager has died after having an epileptic fit while taking a bath. Australian Megan Walsh was taking a bath at a friend’s house in New...

Tips For Parenting With Epilepsy

Katy Mann | Posted 04.04.2017 | UK Parents
Katy Mann

I was diagnosed with epilepsy almost a year ago now and one of the toughest challenges for me has been looking after my two children, James (9) and Emily (5). I have atonic seizures, which means I fall several times a day

Mother's Day With A Chronic Illness

Katy Mann | Posted 24.03.2017 | UK Lifestyle
Katy Mann

We went out for lunch on Sunday as an early Mother's Day treat and I almost face planted my lunch. A coat strategically placed on the table meant I could have a nap while eating. There's no choosing when I sleep, it's when my body allows me to stay awake. My social skills aren't great though!

Surviving A Sleepless Life...

Ruth Drake | Posted 20.03.2017 | UK Parents
Ruth Drake

Ultimately, support and understanding, not only from each other but also friends, family and work colleagues is what is paramount in retaining your health, sanity and relationship. Don't underestimate people, most folk have experienced a sleepless night and will know exactly how you feel if you're dealing with it on such a regular basis.

Dealing With An Epilepsy Diagnosis

Katy Mann | Posted 17.03.2017 | UK Lifestyle
Katy Mann

So the purpose of this blog is to see the funny side of life. Life may be very difficult right now but I still have my sense of humour. I can only compare my life at the moment to one of a slug. I spend most of my time horizontal and moving slowly from room to room. The difference is I have arms so while I may feel as useless as a slug right now I still have the ability to type.

Scientists Have Uncovered An Extreme Way To Boost Your Short-Term Memory

The Huffington Post | Oscar Williams | Posted 14.03.2017 | UK Tech

If you want to boost your memory, you could try out a brain-training app or give the ancient Greeks’ techniques a go. But it’s probably best to st...

People With Epilepsy Are Being Accused Of Drunkenness And It Has To Stop

The Huffington Post | Rachel Moss | Posted 31.01.2017 | UK Lifestyle

As Dry January ends, a charity is urging the public to think twice before assuming that a person who is staggering around in a confused state is drunk...

Acceptance

Laura Rutherford | Posted 09.12.2016 | UK Parents
Laura Rutherford

Now that Brody is nearly 5, I have finally got used to the fact that Global Development Delay (GDD) doesn't mean "may catch up" for us. It's forever. And because he is still primarily undiagnosed, despite an autism and epilepsy diagnosis (as well as a few others), GDD seems to be moving on to a new "catch all" term - learning disability.

When Is It OK To Give Children Cannabis?

Mary Biles | Posted 28.11.2016 | UK Lifestyle
Mary Biles

Vera Twomey-Barry, mother of 6-year-old Ava who, who due to a rare genetic condition called Dravet Syndrome, suffers from as many as 20 epileptic seizures a day, decided to march the 300km to Dublin from her home in Cork.

Take It Back

Vikki Hammond | Posted 27.10.2016 | UK Parents
Vikki Hammond

Unless you have had experience of having a disability or caring for someone with a disability do not judge. Words hurt, we have feeling too. Every comment every snigger or every stare it stays in our heart. What you think you know, you know nothing. My child is my world, my life is not what I thought it would be, I am a carer I am a wife and a mum, I am no longer me.

Cannabis-Based Drug Could Help Thousands Of Epilepsy Patients, New Trial Suggests

The Huffington Post | Rachel Moss | Posted 03.10.2016 | UK Lifestyle

A drug derived from cannabis could dramatically improve the lives of people with epilepsy, new research suggests. Scientists at Great Ormond Street Ho...

Who Am I?

Vikki Hammond | Posted 12.09.2016 | UK Parents
Vikki Hammond

I am your voice, I do these things because I want the best for you. I want you here with me for as long as possible. Although what you have gone through is hard, and every day is a battle. I need you, here with me. Because without you I am nothing, I am no one. But with you I am your mum x

From The Heart, A Letter To My Children

Vikki Hammond | Posted 26.08.2016 | UK Parents
Vikki Hammond

Bailey summed it all up for me one day in the car.. "Mummy we are so lucky to have Kai, just think some people never get to experience someone like him. We are very lucky." With that sentence I felt my job was done, Kai has brought more joy into your life's than I could ever imagine.

Birthdays & Butterflies - The First Chapter Of My Son's Epilepsy Story

Roisin McArdle | Posted 24.08.2016 | UK Parents
Roisin McArdle

Over the next week I observed a further 6 or 7 seizures. I spoke with his school teacher who said she had noticed a remarkable deterioration in his concentration and attention since the start of the school term and she had been planning to move him to the front of the class to be closer to her.

An Open Letter to the Local Council...

Rachel Wright | Posted 02.07.2017 | UK Parents
Rachel Wright

Once you are home, after your difficult day, I hope you are able to relax on the sofa with your loved ones. When you do, please spare a thought for this family who, as a result of your difficult day, have had this 'luxury' restricted.

Hello Epilepsy

Laura Rutherford | Posted 22.06.2017 | UK Parents
Laura Rutherford

When your child has epilepsy, it is a constant weight on your mind. Without fail, the moment that weight eases off, a seizure will happen - just to make sure you know it's still there. It's thoughtful like that.

CDKL5 - Could This Be the Diagnosis You Seek?

Jonnie Temple | Posted 07.06.2017 | UK Parents
Jonnie Temple

It might be that your child has severe epilepsy and disabilities, but no diagnosis. Keep pushing, keep exploring the different options, and rarer conditions like Dravet and CDKL5. But more and more children are being diagnosed with CDKL5 as awareness spreads. We can all do something to share and make others aware of these condtions