Singer Songwriter talks of his life with epilepsy

They Say What Doesn’t Kill You

Since beginning this campaign we have always said that it has a twofold purpose. Yes, we need to raise money to support Epilepsy Bereaved but it is equally about making people aware of the issues faced by epilepsy suffers.

With this in mind, I had the greatest of pleasures to interview Guy W. Stoker on The Voice last Thursday.

Guy is not only the most knowledgeable person I know on the subject of epilepsy, he is a truly talented musician. He spoke eloquently about his life coping with the struggle of epilepsy. He is passionate about music, and has used his musical talent to enhance peoples understanding of what it is like living with epilepsy. Guy’s music is so powerful, during the interview I was moved to tears as I listened his song “What doesn’t kill you”. (Listen to the link above) Guy has also composed some award winning pieces of music both instrumental and lyrical that attempt to describe the process and after effects of a seizure.

It was so fascinating to hear how Guy was invited to speak at conferences in the USA and other places around the world. He has made a name for himself both through his music and his passion for using music to explore epilepsy.

F1 Fan?! How would you liked a signed Red Bull Racing team jacket?

You would?!!! Well! Thanks to benefactor Inge Heitmann we have a genuine Red Bull Racing F1 Team jacked signed by the drivers (including Sebastian Vettel) all ready to go to someone! We’re not quite sure whether by auction, raffle or exactly how yet! Once we have all the legals in place we shall let you know how you can get your hands on this awesome kit!! All proceeds will go to epilepsy bereaved!

Why raise money for Epilepsy Bereaved? What is S.U.D.E.P anyway?

I make no apologies for the seriousness of this blog post. It is about saving lives! It could not be more serious! Please take the time to read it and share it with your friends and family.

By now you probably know my story, in 2006 my brother Nathan died suddenly during an epileptic seizure. Nathan was just 32 years of age and otherwise in great health. He was the proud father of his new young son Ben, who at that time was just a few months old. Nathan had night time seizures and other than the occasional bruising Nathan would suffer during a seizure he lived a predominantly normal life. None of us could have predicted the events of the evening of November 10th/11th 2006.

Following a pleasurable day out with his wife and new son, Nathan settled down to watch a Bond movie, he was a big fan of Bond films. By then end of the evening he began to feel a little unwell and went to lie down. It was then that Nathan entered in to a seizure. Only this seizure was not going to follow the usual pattern! During the seizure, whilst unconscious, Nathan showed signs of breathing difficulties. After calling the emergency services, Nathan’s wife and friends started to perform CPR. When the paramedics arrived, they took over this life saving procedure, but after about 20 minutes of trying to re-start Nathan’s breathing the paramedics informed his shocked wife and family that Nathan was declared dead.

The following morning I received an early morning call from our mother informing me of Nathan’s death during epilepsy. How could this be? Nathan had suffered many seizures in the past and had always come out of it a little bruised but otherwise ok. So what had gone wrong on this occasion?

During the next few grief stricken weeks I embarked on a personal challenge to understand what had happened. After trawling the internet and my local library I first came face to face with the acronym S.U.D.E.P. I learned that this stood for Sudden Unexpected Death in Epilepsy. I learned that it is quite rare and that most people who have experienced a loss due to S.U.D.E.P were previously unaware of the risk. This sounded sadly familiar. To my horror, I learned that even though more than 500 deaths in the UK every year are attributed to S.U.D.E.P, it was not common practice for doctors to warn those diagnosed with epilepsy of the risk of S.U.D.E.P. This was also true of my brother. Nobody had discussed these risks with him. This raised the vital question WHY?

To understand this, we first need to understand that not a lot is known about the causes of S.U.D.E.P. The definition of S.U.D.E.P is by its very nature a vague one. If a person with epilepsy dies suddenly and unexpectedly, and no obvious cause of death can be found, it is called sudden unexpected death in epilepsy (SUDEP).  Whilst we know that it is connected to seizures, why it happens is largely unknown.  What is known, is that seizure activity in the brain may sometimes cause changes in the person’s heartbeat or breathing. This can result in the person stopping breathing or cause their heart to stop beating.

It was felt by the medical profession that as not enough was known about the cause, there was little that could be done to prevent the risk. That being the case, why add worry for the sufferer? Whilst I understand their motivation, it is a flawed concept, and one that needs to be changed. In my opinion and indeed the opinion of everyone I have spoken to who has experienced S.U.D.E.P, it is VITAL that the sufferer is informed of the risks. Why?

Information is power!

If an epileptic is aware of the risks, then they have the opportunity of minimizing the risk of a seizure. Reducing the risks of seizures naturally also reduces the risk of S.U.D.E.P as you cannot have one without the other.

Following Nathans death I setup a Facebook support group which quickly grew to over 1800 members. I was overwhelmed by the stories from those bereaved as a result of S.U.D.E.P. The group joined forces with a number of other Epilepsy support groups and campaigned parliament to recommend that doctors informed those diagnosed with epilepsy of the risk of S.U.D.E.P. Sadly, whilst now more and more doctors are informing their patients, not all do so and neither are the obliged to do so! This needs to change.

In order to make changes we need to raise awareness. This brings me to our challenge. The purpose of our cycle challenge is twofold. 1) To raise awareness of the risk of S.U.D.E.P associated with seizures and 2) To raise money to continue the amazing work that Epilepsy Bereaved do to research S.U.D.E.P and to support families in their loss.

What can you do?

Firstly, promote us as much as possible. Share us on your social media, let people know how important this challenge and what it represents is. Let’s not mince words here, making people aware of this risk saves lives! Secondly, if you are in the position to do so, please sponsor us. Even if it’s only £2, if every reader sponsored us just £2 we would hit our target in no time!

For more information on S.U.D.E.P and how you can reduce the risks please visit Epilepsy Bereaved

What really lies ahead!

Because our challenge is so far away it seems more mythical than anything. None of us are in shape to do this at the moment and I thought the biggest challenge will be getting fit enough to do it….Until I saw a few videos on You Tube!

I wanted to share the video Below. Andy Johnson completed his 888 mile challenge in 98 hours and 25 minutes, with only 7 hours sleep…. We, of course will be taking far, far longer….However I thought this video was truly epic and very inspirational. Well done Andy!



Rain is fine, it’s the wind that worries me!

As I sit here listening for the sound of the microwave ping which signals the obligatory pre ride porridge is ready another sound dominates my ears……the wind! Oh how I hate the wind!! Rain is fine, (well, Id rather have neither) but at least you can still make progress and depending on your attire stay dry!

Cycling into the wind is like wading through swamp of treacle…You push hard, muscles burning, you can hear nothing but the sound of the wind rushing past your ears then, giving it all you’ve got a pensioner on a mobility scooter flies past! AAAAARRRGGGHHHHH!!!! I often cycle on the Tarka Trail here in North Devon, the only problem is that it is quite open to the elements and running along the river, estuary & the sea the wind is often in your face….Had this the other day… Picture in your mind for a moment me, slightly over weight, riding an old 80’s racer, pushing hard into the wind, snot and tears flying everywhere, a steely determined grimace on my face…I look up….There riding towards me, wind BEHIND HIM is a sleek, fully Lycra clad cycling machine…..I nod as he passes at about 25 MPH (with not a drop of sweat on his brow) he looks me up and down as if seeing for the first time the shocking spectacle of “THE THING” rising out of the sewer before you, then though smiling lips atop his carbon fiber steed he guffaws “morning”………..Git.

The dumb irony isn’t lost on me that Scotland, the north, Devon & Cornwall, er…..OK Britain is a very windy place…I just hope that we can avoid it on the ride, or better still have the wind behind us… I suppose one positive is training, cycling into the wind you are working harder and getting fitter….Pah.

Cycle 900+ miles, REALLY?

Kind of rolls off the tongue doesn’t it? 900 miles for charity, so easy to say, but how hard will it actually be?

Ben Rockett completed the challenge in 5 days 21 hours 8 minutes (23 hours faster than previous record, set 2001), but then his daily average ride was a staggering 324.1 miles! That’s OK for uber fit cyclists like Ben. What will it be like for us chubby challengers?

Well, although we don’t have the route planned just yet, we do have a very good idea of what to expect. We will be cycling approximately 65-75 miles per day and it will take us about 14 days to complete the ride. Do I hear the cry of WIMPS! Well no one said we were going for the speed record did they? Out of interest, I wonder who holds the record for the slowest attempt!

Our ride though will carry us through some of the UK’s most beautiful locations from Cornwall, through to Devon, up through Somerset, Wales, Lancaster, Lake District and of course Scotland. These locations along the UK’s west coast are indeed very beautiful, but they have something else in common, Hills, hills and more hills! It’s a little known fact that no matter what direction you go in 75% of hills go up! In fact I have read that we will be climbing around 64000 feet on our journey! Its ok though because Sean assures me that its just one foot in front of the other. Thanks Sean, I know where my back foot will be heading with comments like that! :)

So one word really sums up our challenge, excruciatingly tough, wait a minute that’s two words. Maths was never my strong point! Still, they don’t call it a challenge for nothing now do they. So best foot forward and lots of training over the next 18 months readying myself for the climax of this challenge, the ride itself in 2014! Just got to keep my mind focused on the monumental amounts of cash we are going to raise for Epilepsy Bereaved!

Oh by the way, did I mention our Donation Page?

Meet our challengers: Sean Henson!

Sean Henson

Sean Henson

After suffering from appendicitis I was unable to exercises for quite a bit of time then Christmas hit the time of year where my family gather and the fridge and cupboards are loaded with food, the bad but yet oh so good food! So after food-induced coma I got on the scales and was shocked I weighed just under 22 stone if that wasn’t bad enough the scales were in pounds reading 304.1/4 pounds!!! I was weighing the same as a small whale or baby elephant.

Luckily enough Marc Kent was doing a 21 day challenge and gave a talk at my work so I joined eager to lose the small man I was carrying called FAT. After completing the 21day challenge I lost 16 ½ inches of fat and 13.75lbs.

So with my new-found motivation I plan on continuing with the fat loss and hope to get back down to a healthy 17 stone and a 36-inch waist. Some of you may think 17 stone is obese still but if I weighed less I would look worst then Peter Crouch! I am built like Shrek!

In order to achieve my goal, I have to lose even more weight and then keep it off! I also need to get myself fighting fit so that I have the stamina to complete this challenge of cycling 900 miles with Roy and Lee!!

As long as I don’t end up walking like John Wayne permanently I am up for the challenge!!

Knowing that the money raised from our little bike ride will go to such a worthwhile charity motivates me further and I will not accept failure!!

I need to get practising!

Well with Lee bragging about his ubber massive 24 mile cycle ride today, I am filled with respect and more than a little jealousy!! You see at the moment I am the only challenger who doesn’t actually own a bike! Let me hear you say Ahhhhh!! In fact, I haven’t ridden a bike for about 5 years now!

So, I need to get a bike ASAP so that I can start practising! You can help. If you know anyone who has a road bike for sale at a cheap price, let me know. I will be eternally in your debt, but my butt will hate you for it, so I hope you can live with that!

On our proper ride in 2014 we will need to be covering around 70 miles every day, so you can see why I need to get cycling! Sometimes I have to ask myself how do I get myself in to these things? But in it I am, and in it indeed up to my neck! Still its all in a very worthy cause!

If you know where I can get a cheap practice bike from email me

Loving your support!

What went from “shall we do a charity cycle ride?” …. “yeah OK, Lands End to John O’Groats?” “ok” has now become quite large! In the first week you lovely people have donated £69, offered first aid equipment, training rides and more! We have even had an email from the current Lands End to John O’Groats record holder Ben Rockett!

Thank you to Richard Cumes of Bideford Peleton offering us a space on their training rides to get used to endurance and group riding. Adam Ingleton who has already completed the challenge giving us loads of info on routes and copious welcome advice about the challenge itself! Thanks to UK medical equipment who have donated a uber First Aid kit to take along on the ride (hopefully we won’t need to use it!!)

If you’re reading this thinking, “I’d love to donate but I’m not sure how much I can afford or when” that’s fine! You can help us FOR FREE by liking and sharing our Facebook page, following us and re-tweeting our feed on Twitter and of course sharing this blog by hitting one of the share buttons below!

Thank you so much for your support! Right, I’m off for a ride!! Brrrrrrrrrrrrrr




Meet our challengers: Roy Grimes!

Roy Grimes

Four months ago I weighed nearly 21 stone and had been very overweight for a good number of years. I have always wanted to lose the weight but could never achieve it no matter how hard I tried. During the last 4 months I have managed to shed a massive 5 stone, that’s a whole child or a German shepherd! No comments please! What’s more in order to achieve my challenge, I have to lose even more weight and then keep it off! With the potential of raising much cash for a worthy cause, I am keen to succeed. Loosing weight is one thing, but I also need to get myself fighting fit so that I have the stamina to complete this challenge.

So now, this brings me to the challenge itself. My challenge is twofold.

1. Train hard, lose the weight and get myself fit!

2. The big push, cycle hard over 900 miles from Lands End and John O’ Groats!

I’m genuinely not sure which part of the challenge scares me the most. So in sponsoring me to do this challenge you will be supporting the tireless work done by Epilepsy Bereaved, as well motivating me to work as hard as I can over the next 18 months to get fit and complete the daunting cycle ride.