On Saturday 24th March I shall be broadcasting my 25th radio show (The Pleasuredome Pick'n'Mix) on the community radio station, Peterborough FM. To mark the occasion I have compiled a poll of 25 songs that best represent the music styles I play in order create a chart rundown.
As this week also coincides with a number of fundraising activities for Young Epilepsy and the My Purple Pledge campaign, I have decided to link the poll in with raising funds for the charity.
I am personally willing to donate 10p for every voter who takes part in the poll up to a maximum of £25 (250 voters) but I will double it to £50 if we reach 1000 voters. I am also using this opportunity to highlight the Young Epilepsy 'Just Giving' page which will hopefully encourage people to donate to the cause too.
So here's what you have to do...
Please visit the following link to choose your favourite 10 songs on the 25 song list. Then, if you are able to make a donation, please visit the Young Epilepsy Just Giving page and make a contribution to the cause.
There's no obligation to donate as it's all absolutely voluntary but it would be great if you could. Please feel free to circulate the poll and this page among your friends via Twitter, Facebook, email etc so as many people can take part as possible. This way more people will be able to learn about the Young Epilepsy charity and hopefully raise yet more valuable funds. Maybe a business or individual will agree to match my donation once it we reach a certain level - that would be fantastic!
As I said I will be doing the full chart rundown on my Peterborough FM Saturday show which is scheduled to begin at 8:00pm so tune in at www.peterborough.fm and click on the 'listen online' link.
Please vote and please donate - with your support we really can make a difference.
About Peterborough FM
Peterborough Community Radio Project, known as Peterborough FM is driven by the delivery of outputs of social benefits, giving everybody the chance to get their voice heard, thanks to the Big Lottery Fund Reaching Communities Programme and the BBC Children In Need Appeal. The charity PACO is behind the project. The project has been running since 2007 and has so far involved more than 700 volunteers to date.
Using radio as a tool, Peterborough FM contributes to regeneration and improved community cohesion and capacity in the city. Peterborough FM is sees as a community resource, to be used by individuals and organisations making up the city’s community. The project brings together people from diverse backgrounds who would not meet each other in the normal course of their lives.
Further information
About My Purple Pledge / Young Epilepsy
My Purple Pledge is Young Epilepsy’s annual fundraising campaign which takes place in March to coincide with Purple Day, the (26 March 2012), the international day to mark epilepsy awareness.
With the backing of some famous friends including Commonwealth, European and World Champion 400 metre hurdler, Dai Greene, Waterloo Road actor Phillip Martin Brown and footballer Leon Legge, to name just a few, Young Epilepsy is asking people to make a purple themed pledge to raise money for young people affected by epilepsy.
Further information
You can also vote in the poll below...
Monday, 19 March 2012
Sunday, 12 February 2012
'My Story' of living with epilepsy published on Young Epilepsy website
Jeremy Orbell helps Young Epilepsy fundraise in the Peterborough area. He talks about his experiences of being diagnosed with epilepsy as a teenager and how it affected his early years.
Original article can be found here.
When were you first diagnosed and at what age?
I was first aware I had a problem back in 1986 not long after starting my first job at Norwich Union (now Aviva). This would make me around 17-18 years of age. One of my tasks was inputting insurance details on to the computer system and I often felt myself losing concentration after looking at the screen for long periods. I put the problem down to tiredness and just put it to the back of my mind.
The following year I took my driving test and passed first time but at no time did it occur to me that these occasional blackouts could've been putting me in danger.
In 1988 I moved from Norwich to Peterborough and took a new job which eventually led to a role in the Design Studio at Thomas Cook. All seemed fine then one day in the Autumn of 1990 I had a series of absenses in quick succession and a colleague said I should get it checked out. Even I admitted it seemed odd so I booked an appointment with my GP who promptly told me not to drive until we'd established what the problem was. I guess he had an inkling pretty quickly.
I had some tests at the district hospital and then on the 18th February 1991 - not too long after my 22nd birthday - the news came through that I had what was in those days called Petit Mal epilepsy (these days referred to as absence seizures). I was told that my driving days were at an end unless the absenses could be controlled with medication for a minimum period of two years.
How did epilepsy affect your life at the time?
I remember being quite upset initially, mainly because not being able to drive took a lot of the spontaneity out of life. The previous summer I was at home one Friday with nothing to do and decided in a split second to go somewhere, threw a few things in the boot and went to Scarborough.
After being diagnosed I had to look at trains and interconnecting bus services and was it far to walk to get to the place I wanted to stay at. I found that all very frustrating.
In the beginning I was on two different types of tablet, one being Tegratol Retard. At first it felt like I was making progress and I went a full three months without a seizure and then one happened one Friday and I burst into tears - I was back to square one.
Ultimately I was not affected too heavily. I travelled by bus instead of car and had to take pills twice a day. On the face of it that's not much of a hardship when you see what other people have to deal with.
How did friends and family react?
Most of the time people would never know there was anything wrong. I could have a blackout and it be over so quick the person I was speaking to wouldn't even notice. I'd generally have to ask them to repeat what they'd said but as I'm deaf in my left ear too, that wasn't unusual.
The only time I recall getting really strange looks was when I was talking to a girl at work who I was particularly keen on. We finished our conversation and I bent down to pick my bag up...except I didn't get that far. There I was bent over, nearly picking up the bag but not quite. At that second I came round feeling very self-conscious. I blushed, made my excuses and left feeling mortified.
I later had the chance to explain what had happened and she was fine and despite never getting past the friendship stage it was never an issue. It was the same with everybody really. That said, absence seizures in my experience are very different to more severe epilepsies and I'm sure people are unnerved when witnessing a major seizure.
There's only really one occasion where I can definitely recall witnessing a tonic clonic seizure. I was in Addenbrokes hospital having some tests and in the TV room a young lad had a seizure and whacked his head against the wall with some force before settling down and carrying on watching the programme as if nothing had happened.
How does epilepsy affect your life now?
Now it's less in the forefront of my mind I'm beginning to wonder if the blackouts are happening less and less. Previously it could be once a week or four or five times a day. As I sit here now I can't remember the last seizure I had.
The point is people have to realise that epilepsy is not 'the end'. Over the years I have run four London Marathons, done a fire walk, abseiled, been pot-holing, taken the Yorkshire Three Peaks Challenge and now have my own community radio show. I don't look at my epilepsy as anything different to having two arms and legs. I'm already deaf in one ear as I've said and I don't consider that a disability and neither should anyone else.
What kind of seizures do you have?
The seizures I have have always been described as either black outs or absences.
Whenever I am asked about the condition I have a stock response that I give. I tell people it's like watching a film and someone has cut out two seconds of the action. You're in the same place as before but aspects of the scene have changed - it's like your brain shuts down for a moment before rebooting.
Why do you support Young Epilepsy?
I was looking to do something worthwhile in my community and found out about the charity through do-it.org. I’m in the process of helping set up the Peterborough Fundraising Group which I see as a very worthwhile cause.
When I was first diagnosed I was under 25 and could have potentially come into contact with the organisation. Having seen the work Young Epilepsy does, it is vital this tremendous facility has all the equipment it needs to help those who are living with epilepsy on a day to day basis.
Original article can be found here.
When were you first diagnosed and at what age?
I was first aware I had a problem back in 1986 not long after starting my first job at Norwich Union (now Aviva). This would make me around 17-18 years of age. One of my tasks was inputting insurance details on to the computer system and I often felt myself losing concentration after looking at the screen for long periods. I put the problem down to tiredness and just put it to the back of my mind.
The following year I took my driving test and passed first time but at no time did it occur to me that these occasional blackouts could've been putting me in danger.
In 1988 I moved from Norwich to Peterborough and took a new job which eventually led to a role in the Design Studio at Thomas Cook. All seemed fine then one day in the Autumn of 1990 I had a series of absenses in quick succession and a colleague said I should get it checked out. Even I admitted it seemed odd so I booked an appointment with my GP who promptly told me not to drive until we'd established what the problem was. I guess he had an inkling pretty quickly.
I had some tests at the district hospital and then on the 18th February 1991 - not too long after my 22nd birthday - the news came through that I had what was in those days called Petit Mal epilepsy (these days referred to as absence seizures). I was told that my driving days were at an end unless the absenses could be controlled with medication for a minimum period of two years.
How did epilepsy affect your life at the time?
I remember being quite upset initially, mainly because not being able to drive took a lot of the spontaneity out of life. The previous summer I was at home one Friday with nothing to do and decided in a split second to go somewhere, threw a few things in the boot and went to Scarborough.
After being diagnosed I had to look at trains and interconnecting bus services and was it far to walk to get to the place I wanted to stay at. I found that all very frustrating.
In the beginning I was on two different types of tablet, one being Tegratol Retard. At first it felt like I was making progress and I went a full three months without a seizure and then one happened one Friday and I burst into tears - I was back to square one.
Ultimately I was not affected too heavily. I travelled by bus instead of car and had to take pills twice a day. On the face of it that's not much of a hardship when you see what other people have to deal with.
How did friends and family react?
Most of the time people would never know there was anything wrong. I could have a blackout and it be over so quick the person I was speaking to wouldn't even notice. I'd generally have to ask them to repeat what they'd said but as I'm deaf in my left ear too, that wasn't unusual.
The only time I recall getting really strange looks was when I was talking to a girl at work who I was particularly keen on. We finished our conversation and I bent down to pick my bag up...except I didn't get that far. There I was bent over, nearly picking up the bag but not quite. At that second I came round feeling very self-conscious. I blushed, made my excuses and left feeling mortified.
I later had the chance to explain what had happened and she was fine and despite never getting past the friendship stage it was never an issue. It was the same with everybody really. That said, absence seizures in my experience are very different to more severe epilepsies and I'm sure people are unnerved when witnessing a major seizure.
There's only really one occasion where I can definitely recall witnessing a tonic clonic seizure. I was in Addenbrokes hospital having some tests and in the TV room a young lad had a seizure and whacked his head against the wall with some force before settling down and carrying on watching the programme as if nothing had happened.
How does epilepsy affect your life now?
Now it's less in the forefront of my mind I'm beginning to wonder if the blackouts are happening less and less. Previously it could be once a week or four or five times a day. As I sit here now I can't remember the last seizure I had.
The point is people have to realise that epilepsy is not 'the end'. Over the years I have run four London Marathons, done a fire walk, abseiled, been pot-holing, taken the Yorkshire Three Peaks Challenge and now have my own community radio show. I don't look at my epilepsy as anything different to having two arms and legs. I'm already deaf in one ear as I've said and I don't consider that a disability and neither should anyone else.
What kind of seizures do you have?
The seizures I have have always been described as either black outs or absences.
Whenever I am asked about the condition I have a stock response that I give. I tell people it's like watching a film and someone has cut out two seconds of the action. You're in the same place as before but aspects of the scene have changed - it's like your brain shuts down for a moment before rebooting.
Why do you support Young Epilepsy?
I was looking to do something worthwhile in my community and found out about the charity through do-it.org. I’m in the process of helping set up the Peterborough Fundraising Group which I see as a very worthwhile cause.
When I was first diagnosed I was under 25 and could have potentially come into contact with the organisation. Having seen the work Young Epilepsy does, it is vital this tremendous facility has all the equipment it needs to help those who are living with epilepsy on a day to day basis.
Thursday, 19 January 2012
2012 London Marathon Golden Bond places still available through Young Epilepsy
Young Epilepsy are currently looking for individuals to run the Virgin London Marathon in 2012
The 2012 Virgin London Marathon takes place on Sunday 22nd April and is one of the most inspiring events on the planet. In excess of 35,000 runners will take part on the day with over a million spectators lining the streets to cheer them on. Have you ever wanted to experience what it's like to be part of such an occasion? Well, now you can!
Young Epilepsy have guaranteed
Young Epilepsy understands the commitment and hard work that goes into running a marathon, not to mention the fundraising, and we strive to make every step that little bit easier for you. If you run for the charity you will receive lots of support, including regular race tips, an official Young Epilepsy vest, fundraising advice and lots more.
To apply for one of our places and join our fantastic team, please contact James Sommers on 01342 831245 or email jsommers@youngepilepsy.org.uk
So what is like to run the London Marathon..?
The 2012 Virgin London Marathon takes place on Sunday 22nd April and is one of the most inspiring events on the planet. In excess of 35,000 runners will take part on the day with over a million spectators lining the streets to cheer them on. Have you ever wanted to experience what it's like to be part of such an occasion? Well, now you can!
Young Epilepsy have guaranteed
Golden Bondplaces available for this fantastic event. If your application is successful you will be required to raise a minimum sponsorship of £3,000.
Young Epilepsy understands the commitment and hard work that goes into running a marathon, not to mention the fundraising, and we strive to make every step that little bit easier for you. If you run for the charity you will receive lots of support, including regular race tips, an official Young Epilepsy vest, fundraising advice and lots more.
To apply for one of our places and join our fantastic team, please contact James Sommers on 01342 831245 or email jsommers@youngepilepsy.org.uk
So what is like to run the London Marathon..?
The London Marathon Experience: 26.2 memories
By Jeremy Orbell, Young Epilepsy Peterborough Group co-ordinatorOver the years I have run many 10Ks, 10 milers and half-marathons and and also a duathlon of two 5Ks and a 10K bike ride but it is the marathon that is the ultimate memory for me. I am going to pick out 26.2 of the more memorable instances from my four London runs which best represent what it can be like to compete in a big city event. The route may have changed since I last competed but you’ll get the picture.
So here it is: This is your chance to take part in a marathon without moving from your PC. Don’t forget keep hydrated so I suggest you get yourself a drink!
1. On the free train from London Bridge station to Blackheath you join the masses of runners heading for the start. They all look fitter than yourself but everyone feels a connection because we are about to embark in what is akin to a spiritual experience. We are testing our strength and personal resolve against the ultimate test of human endurance – the mythical distance of 26 miles and 385 yards. Some people are quiet with it being their first event, others are chatty and excited having been this way before and then there are those who are running for a loved one or a good cause. In this final category you get those who take it a stage further and run in fancy dress. It is not often you find yourself nose to nose with a person in a rhino costume but curiously no-one bats and eyelid. Any other day and these people would be sectioned!
2. Waiting at the start you feel nervous and apprehensive about what lay ahead. Doubts about your training regime set in but there’s no going back. Up ahead I can see the start and the rough outline who may or may not be a celebrity. I can also see a runner who is carrying a 10 foot Mr Punch costume – surely that’s one person I can beat today. Right, let’s get started…
3. The gun goes and I immediately start my run much to the annoyance of the runner two paces ahead of me. Why? Well, this gentleman knew that you cannot move 30,000 people instantly so you have to wait until there is an actual space to run into which is why 15 minutes later I still hadn’t crossed the start line.
4. In all the build up to a marathon you are told to keep well hydrated but this does present a problem if you overdo it. There were several queues of 10 or more people waiting to relieve themselves at the portable toilets over five minutes after the gun had sounded. Others who were in position early would within 10 minutes find that they could hold on no longer so lined up on the edge of a roundabout to lose the excess. A funny though slightly disturbing site.
5. The first mile is going to be a big indicator how you finish the race because if you allow yourself to have your pace dictated by those around you, you could be in trouble. It’s almost impossible not to go off too fast on your first marathon purely due to the euphoria of the day. You want to run fast – you’ve trained for so long for this moment, you want to do well. Let’s see how you’re feeling after 18 miles.
6. I’m now well into my running in the fairly non-descript surroundings of South-East London. You do not expect to see three runners Womble costumes in front of you especially as they are more likely to be found on Wimbledon Common on the west side of the city. If you don’t understand the reference I suggest you Google it.
7. After around four miles we’re in Woolwich and I have a man dressed as a Smurf to my right while a man with one leg on a roller skate with crutches flies by to my left! This left me shocked at first but then overwhelmed me with admiration that someone would not let the inconvenience of being deficient in the leg department to the tune of one stop him achieving his goal. What a guy!
8. Next we’re into New Charlton where I pass two runners who are dressed for a wedding and that’s just where they’ve been as they were married earlier. Nick Gambrill and Barbara Cole from Croydon had tied the knot at Charlton House just two miles from the race start. Unfortunately I wasn’t invited to the reception. Pah!
9. At six miles it’s the Cutty Sark, the only surviving tea clipper still in existence, now sadly the victim of a huge blaze which occurred at the end of last year. It is a psychological if not mathematically measured quarter-way mark. This vessel was an awesome sight to see as you rounded its bow and one which will be a curious absentee for those running in 2008.
10. Miles 7-11 through Deptford and Rotherhithe offer some fairly unremarkable scenery but the crowds are out in force to keep the spirits up as you first begin to notice that you may have set off too quickly. I can see Canary Wharf, Britain’s tallest building but it will be another nine miles before I enter its shadow.
11. I pass Rotherhithe Youth Hostel where I spent the previous night with the feeling that it would have been nice to have had a lie-in and then sneaked out the back door to join the race here but the though soon passes thankfully. If I’m going to do this I have to do the complete distance.
12. We’re into Bermondsey now and coming up to Tower Bridge and the 12 mile point. This is again a visual if not technical distance marker and represents the virtual half-way point. When you turn the corner to start the crossing of the Thames nothing quite prepares you for the sheer mass people that greet you. It is absolutely packed and an experience guaranteed to put an extra zip into your stride. Suddenly the finish line seems a lot closer.
13. Whitechapel is the official half-way point and soon after passing this point I find myself slapping the hands of numerous children by the side of the road and I gleefully accept the offer of an Opal Fruit, or Starburst as they are now called. Unfortunately, this results in one of my teeth sheering off prompting a visit to the dentist the next week.
14. The road is split in two here as runners at about the 20 mile point pass us running in the opposite direction. It is likely to be more than another hour before I’m this way again. Grrrr!
15. I am now approaching the Docklands area which is where my experiences will differ from those who run London this year. The direction of the loop has been switched from clockwise to anti-clockwise. As these are my memories I will have to stick to the original route so those who are running this coming April should either look away now or just use their imagination.
16. Poplar has the 15 mile marker which on this particular occasion I cross in exactly three hours. The winners had finished some 50 minutes earlier and I had another 11 miles to go – and it’s raining. Ho hum…
17. I’m now in the heart of Docklands which is quite eerie compared to other parts of the route as the crowds are virtually non-existent. This is not a problem as this is a part of the city you wouldn’t normally see unless you worked here. There’s no doubting it’s an impressive skyline but it’s pleasing to see pockets of the old city still survive thus preserving London’s heritage.
18. The Thames almost totally surrounds Docklands in a large ‘U’ shape of water. As I make the turn at the very bottom of the loop I almost literally bump into a friend who is acting as a marshal for the day. I quickly take out my camera, take a snap of him, and on my way again.
19. Feeling really tired now and it’s getting increasingly difficult not to stop running. I guess I’m hitting ‘the wall’ and as we’re in Millwall I guess I should’ve guessed this would be where I’d find it.
20. Eventually tiredness gets the better of me and I stop and walk. This is fatal as the muscles contract like coiled springs and getting back into a fluid running pattern is something I’m likely to see again today.
21. In one of the few remaining flurries of actual running I pick up an energy drink from one of the many drink stations on the course. Almost immediately I find myself wading through a sticky gunk of discarded isotonic fluid. It does rather make you wonder what is in those little containers as I have to peel my trainers off the tarmac for at least the next 100 yards or more.
22. I’m now passing the Shadwell area again as the Tower of London comes into view. I pass under Tower Bridge and join the dreaded cobbles. The carpet that had been thoughtfully provided for runners is now thoughtlessly being rolled up when those runners with knees most shot most need something soft to run on. I certainly didn’t envy the guy on the roller skate.
23. Not far to go now – just three miles. Unfortunately it’s the most demoralizing part of the route even if it’s the most picturesque. Before I take on the Embankment I have a long road tunnel to navigate and this is very strange indeed. I am in the center of one of the world’s largest cities and I can hear nothing but heavy breathing and the sound of trainers padding on the road. I was pleased to return to daylight at the other end.
24. I’ve now had Big Ben in view for the best part of half-an-hour and was beginning to wonder if we’d ever be allowed to meet. The crowds are building up again and offering support which brings both a smile to the face and a spring to the step as I turn into Parliament Square but it’s hard to keep going for long.
25. By the time I reach Birdcage Walk I’m completely done in. I felt as if I was running on empty when someone calls out: “Come on! You’re so close – let’s see a big finish!” Before I know it I’m off again and is by a miracle I’m energized and off like a rocket…a slow rocket admittedly but certainly far quicker than those around me.
26. To my left is Buckingham Palace and I’m absolutely flying! I may be imagining it but a roar goes up in the crowd as I am virtually sprinting now. This is what it’s all about – I’d done it! With tears in my eyes I ran through the finish line. What a moment!
26.2 I collected my medal and kissed it. I’d run (and walked) a marathon and this was something that no-one could ever take away from me. A lifelong ambition achieved.
So there you have it. A taster of what it’s like to compete in a marathon and I will take it as the ultimate honor if you feel inspired to experience it for yourself. Incidentally, I never did see Mr Punch again so he did beat me but it doesn’t really matter because everyone is a winner on this day: the runners, the organisers, the charities and the crowd.
Whatever your level of ability the marathon is in your capability - it’s up to you to make it happen. You’ll never regret it.
So there you have it. A taster of what it’s like to compete in a marathon and I will take it as the ultimate honor if you feel inspired to experience it for yourself. Incidentally, I never did see Mr Punch again so he did beat me but it doesn’t really matter because everyone is a winner on this day: the runners, the organisers, the charities and the crowd.
Whatever your level of ability the marathon is in your capability - it’s up to you to make it happen. You’ll never regret it.
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