Chubbs Cycle Challenge Update

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So we are now on the countdown, this time next year we will be on route between Lands End and John O’Groats. So with this in mind, it is time to beef up my personal training! I have just enrolled at my local Gym with the intention of loosing my last stone (or maybe stone and half) I also need to build up my core body fitness, and if I gain a little muscle in the process well, all the better.

I can also confirm we have now reached a total of £200 so we are 20% towards our target. Please continue to give generously. Lets see if we can get to 50% by Christmas shall we.

You can give directly from our Just Giving page. http://www.justgiving.com/chubbs-cycle-challenge

You can also donate by Text. Just text CHUB88 and your amount to 70070. EG: CHUB88 £10 (send to 70070)

Many thanks,

Roy

Dedicated to everyone who has suffered a loss through SUDEP

Those of you who know me, are by now aware of my commitment to raising awareness of Epilepsy and especially of SUDEP. (Sudden Unexpected death in Epilepsy) This cause has been close to my heart since the death of my younger brother Nathan.

I am honored to have received a phone call yesterday from SUDEP Action, who have invited me to participate in a SUDEP awareness ‘Think-Tank’ with a few like minded people who are determined to make a difference.

With that in mind, and inspired by talking to local Singer Songwriter Guy W. Stoker who fights tirelessly to raise awareness and understanding of epilepsy, I set about writing my own Acrostic Poem to help raise awareness.

I’m no writer, but I thought, I would like to share it with you. Please feel free to share, so that together we can raise awareness.

SUDEP AWARENES Acrostic – By Roy Grimes

S – Secrecy prevails around this much unspoken word,
U – Unless we make it our intent to get our voices heard.
D – Death and devastation, families torn apart,
E – Experiences no one wants to play upon their heart.
P – Please join with us, lets spread the word with one united shout

A – Awareness, action and understanding, that’s what we’re all about.
W – While personal loss and tragedy has visited our lives
A – All of us have a powerful voice that we’ll never compromise
R – Regardless of our story, our losses and our grief
E – Earnestly we’ll stand up tall, as it is my belief
N – Not one who suffered SUDEP should ever die in vain, so
E – Even those who suffered loss, take comfort in your pain
S – SUDEP Awareness with your help will shortly have its say
S – So with a heart so filled with hope, I wish you peace this day

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.

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

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?

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 roy@chubbscyclechallenge.co.uk