Tag Archives: Bristol

PODCAST: Episode 4 – EPILEPSY AND WOMEN

Dr/Consultant Howard Faulkner, is a Epilepsy Neuro-Consultant in Bristol. In this podcast recording, Dr Faulkner talks about WOMEN AND EPILEPSY, providing a great insight and information in how Epilepsy and Seizures effect the female body, at all ages.

Podcast Duration: 1 Hour
Podcast Recorded: November 2012
Podcast Recorded at: Bristol Epilepsy Support Group Monthly Meeting

MORE INFORMATION ABOUT FEATURED SPEAKER:

NAME: Dr Howard Faulkner
Link: http://www.nbt.nhs.uk/our-services/a-z-consultants/dr-howard-faulkner

Year of first qualification: 2002, Imperial College, London
Specialty: Neurology
Clinical interest: Epilepsy, Epilepsy Surgery

Dr Howard Faulkner completed his BSc, PhD and MBBS at Imperial College, London before moving to Bristol for his Medical and General Neurology training. He then completed an Epilepsy and EEG Fellowship in Sydney, Australia, and was appointed as a consultant in 2011.

Dr Faulkner provides a full range of epilepsy services from first seizure clinics to epilepsy surgery workup.

PODCAST PRODUCTION NOTES:

This podcast was recorded and produced by SAM DOWNIE from Dsoundz Media.
Visit the website, at: http://www.dsoundz.co.uk

Follow Sam Downie on Twitter at: @samdownie / http://www.twitter.com/samdownie

This is Episode 4 from the UK Epilepsy Podcast, and it comes from the Bristol Epilepsy support group, in Bristol, SW England. Follow the hashtag on Twitter: #ukepilepsypodcast for updates and more. And follow @BristolEpilepsy on Twitter ( http://www.twitter.com/BristolEpilepsy ).

THANKS FOR LISTENING !

Advertisements

Fundraising Gig for Epilepsy in Bristol – Aug 10, 2018

36522930_1282564661879126_8313714877143187456_nJoin AFO Audio and friends, for an exciting fundraising gig for Epilepsy Society to be held in Bristol on FRIDAY 10TH AUGUST, 2018.

Time: 7PM

Address: The White Hart Pub, 84 Bedminster Parade, Bedminster, Bristol , BS3 4HL

Featuring several bands : Hannah Jane, Coldwater, Rokyoot, Place of Kings, Zendium Moon and Ellie Moonshine & The Prohibition Band.

Suggested Donation Entry : £5 (or more)

More Information from : https://www.facebook.com/afo.audio

Sarah’s Epilepsy Fundraising Story

Sarah Reid – is an inspiration and a member of the Bristol Epilepsy Support Group, in Bristol, England.

In spite of undergoing surgery for left temporal lobe epilepsy this year at Southmead Hospital, Bristol, Sarah has still managed to fundraise relentlessly for the five charities closest to her heart: Epilepsy Society, Young Epilepsy, Epilepsy Action, Young Carers and Mothers for Mothers.

‘Fundraising is a way of giving back,’ said Sarah. ‘Epilepsy Society and the other four charities have always been there for me when I have needed them. They have supported me in the lead up to my surgery, they have been there for me when I have been having a down day or when I have been struggling with my seizures or with employment issues.

Sarah fund raises for the #epilepsy group in Bristol, she says that…

It was rewarding giving a cheque last night  (February 6th, 2018) for over £40 to Bristol Epilepsy Support Group!

It was lovely giving 107 epilepsy information packs with laylas book epilepsy book for kid’s inside with 1st aid leaflets young epilepsy sent and young carers leaflets too. With information as well as stickers and balloons to put inside to help making the information packs exciting and educational , raising epilepsy awareness and money for epilepsy charities.

When I was at school teachers told me off for daydreaming when really I was having a seizure. I hope that raising epilepsy awareness in schools will stop what happened to me happening to anyone else.

Sarah also says..

A big thank you to staff and customers at downend co op for helping me to raise the money and to young epilepsy and young carers who kindly donated information leaflets and stickers and balloons. 

Now my next goal is to raise another £700 to send enough information packs for schools in Bristol.   Then my daughters Layla’s book and information packs will be in all South Gloucestershire schools and Bristol schools raising epilepsy awareness.  The cheque from the profit from her book will be sent to the Epilepsy Society in the next few months.

I am at Downend Co-op in Bristol, every week raising money for 7 charities close to my heart and donating Layla’s book EPILEPSY BOOK FOR KID’S to schools, epilepsy charities, to hospitals and to families who need them. 

You can buy the book on AMAZON here : https://www.amazon.co.uk/Epilepsy-Book-Kids-Layla-Reid/dp/1842890190 , or at Waterstones Bookstore in the UK here : https://www.waterstones.com/book/epilepsy-book-for-kids/layla-reid/9781842890196

Sarah continues..

Recently, I was in contact with a lady called Sarah from South Gloucestershire council who found the best was to get my daughter’s epilepsy book to schools was through the school’s nurse’s. I took all the epilepsy information packs to the kingswood hub where the school nurse’s loved them and thought they were a great way to raise epilepsy awareness and money in schools!.

Event: Epilepsy Action in Bristol – Treatment Options – 16th Feb, 2013

Epilepsy Action  - Logo

For More Information About This Event, Please Visit This Link: http://www.epilepsy.org.uk/involved/local-events/treatment-options

When ? : 16 February, 2013
Time of Event: 12pm to 4pm
Where ? : The Watershed, 1 Canons Road, Bristol, BS1
Cost of Event: £6 / £4 (cons)

[box]CLICK HERE TO BOOK YOUR TICKET FOR THIS EVENT IN BRISTOL[/box]

This series of half day events across England and in Wales will give information to people with epilepsy. They will be about the options for treatment beyond medication in difficult to control epilepsy.

People attending will have the opportunity

  • To gain knowledge on epilepsy and medication to control seizures
  • To be aware of treatment options beyond medication
  • To be aware of surgery as a treatment for people with epilepsy
  • To gain knowledge on the social aspects of living with epilepsy and the support available from Epilepsy Action

Cyberonics, manufacturers of the vagus nerve stimulation system (VNS) have generously sponsored these events.

The sessions will cover

  • Epilepsy and medication to control seizures
  • Surgery for epilepsy
  • Vagusnerve stimulation (VNS)
  • Ketogenic diet as a treatment for children with epilepsy
  • Complementary therapies
  • Personal experience of using VNS

Information about epilepsy and the work of Epilepsy Action will also be included

Each event will have presentations from medical staff and Epilepsy Action staff. Volunteers will be present providing information for people to take away with them.

Report – Disability campaigner spits at #bristolmayor #LibDem candidate John Rogers, at a #HardestHit peaceful protest in Bristol

On Thursday 25th October, a peaceful #HardestHit protest took place during lunchtime, organised by the Bristol Disability Equality Forum , held outside the Council House in Bristol, UK – yesterday (Thursday 25th Oct 2012).But – a few disruptive things took place, and one of these was picked up by the local press (The Post) who posted this story today “A Disability campaigner spat at #bristolmayor #LibDem candidate Jon Rogers”. And of course, a row broke out between Jon and other people with Disability’s, during this peaceful protest held in Bristol, campaigning against the cuts to Welfare, and employment.

As usual, the token ‘anarchist’, who has their own agenda, gets all the publicity from the media, as well as giving free publicity to two of the mayoral candidates, while the actual reason for the demonstration (i.e. disabled people’s fears of the cuts hitting them) gets a little bit at the end of the report. 

Mark Williams – co-Chair Bristol Disability Equality Forum

Background about the cuts to Welfare in the UK:

A report by the Children’s Society and Disability Rights UK claims 230,000 severely disabled people are set to get between £28 and £58 less in benefits every week, while 100,000 children stand to lose up to £28 a week.

Also – up to 116,000 disabled people whoWORK , will be at risk of losing £40 a week (which helps with costs such as Travel and Work Place adaptions, that employers do not provide!

Ms Kaye Long said: “On a day-to-day basis the cuts will have a huge effect on people’s basic human rights and living conditions. At least half a million disabled people will feel the negative effects.”

What the local Press had to say: (link to this news story)

http://www.thisisbristol.co.uk/Campaigner-spits-mayor-candidate-Jon-Rogers/story-17186260-detail/story.html

Here’s a few quotes, take from The Post (Bristol) (www.thisisbristol.co.uk) who reported on this protest, that I attended:

Quote: 
MAYORAL candidate Jon Rogers was spat at by a demonstrator when he attended a protest over cuts to benefits for disabled people. A man campaigning on behalf of a rival candidate also threw his cigarette at the Liberal Democrat hopeful, who is the city council deputy leader.

Jon Rogers said “he was appalled at what happened and said he believed the actions constituted “assault”.” The campaigner who spat at Jon Rogers, ‘Michael Wright’, attempted to justify his actions by claiming Jon Rogers had “no place” at the march because of Bristol City’s Council’s planned closures of care homes for Disabled and the Elderly.

The activist, who is campaigning for Trade Union and Socialist Coalition mayoral candidate Tom Baldwin, told The Post: “I don’t think he has much of a place at a demonstration like this. He has closed operations for eight care homes in Bristol.”.

After Jon Rogers walked away from the fracas he said: “I have come down here to offer myself up to talk about disability issues, not to be abused in an appalling way. It’s assault.” But Jon Rogers said he did not intend to take the matter further.

Read More:

Read the full article from ‘The Post’ (This Is Bristol), here: http://www.thisisbristol.co.uk/Campaigner-spits-mayor-candidate-Jon-Rogers/story-17186260-detail/story.html

SAM DOWNIE’S COMMENTS ABOUT WHAT TOOK PLACE:

As I was attending this peaceful ‘Hardest Hit’ protest, I’d thought I would share with you. Read to see what really went on and what I observed over the space of Lunchtime.

1. Jon Rogers

Around 20 minutes into this peaceful protest, Jon Rogers came by on his bike, wanting to know what was taking place. He did start to talk to various people, including me and yes he did listen to concerns.

Whilst I was talking to other people, I heard a argument row taking place, between Jon and someone who I didn’t know, someone who I’d thought had just ‘shown up’.  So I walked over to where the row was taking place, and listened for a short while.

No I didn’t see Jon being spat at. No I didn’t see a cigarette flung at him.

But – I did hear Jon say (during the argument taking place) “I don’t support people like you, and I don’t think you all need to be here”. Was this a dig at the person who spat at Jon, or was this a general thought/saying of his to everyone who was there (me included) ? (if that’s the case then that could be called ‘indirect disability discrimination’).


Other people I saw there and talked to were:

– Marvin Rees ( Bristol Mayor, candidate for Labour party) *in this photo

– Tom Baldwin ( Bristol Mayor, candidate – Trade Unionist and Socialist Coalition)

thanks both for speaking to me and coming to see what was going on and learning more about the Hardest Hit welfare cuts.

2. Why Was I There ?

Simple. I work. I have a Disability, and I claim Benefits (DLA and Working Tax Credits) which help me to stay in WORK.  I’m a self-employed Journalist (freelance for BBC News, freelance for The Guardian, freelance for Channel 4 + other technology magazines and websites). I’m also a Presenter / broadcaster. More information about me at my website :http://www.dsoundz.co.ukAnd as a Broadcaster/Journalist, these Welfare cuts will effect me, and my work.

Why? well perhaps I can answer it like this: Why do I need to claim Benefits?

3. What’s my Disability ?

It’s simple again. I have 3 forms of Epilepsy. (read more about me and Epilepsy here : http://www.dsoundz.co.uk/sam-and-epilepsy ). Epilepsy effects over half a million people in the UK, and over 50 million people worldwide.

I am banned from Driving (it’s against the law to drive with Epilepsy, where ever you are in the world), so need help with costs for getting to / and back from work.  My seizures effect the way I work too, as Epilepsy effects Memory and body control.

The AED’s (anti-epilepsy drugs) I take, don’t cure Epilepsy… as, there is no cure for Epilepsy… fact!All AEDs help by dampening the effects of seizures. And I take quite a bit of drugs per day to help combat seizures, but like all drugs, there are side-effects.

When you look at me. Ask yourself this: Can you see me having a seizure? (I have over 10 of these a day!). Epilepsy is a ‘hidden disability’, as it’s within the brain. So the next time you see me, do ask me How am I, and ask about what Epilepsy is and how it effects me and my work.

There’s more information about Epilepsy here : http://bristolepilepsy.org.uk/resources/epilepsy-facts/

4. What to do next ? 

Carry on protesting.
Carry on sending out the message that Welfare cuts, will hit everyone – in employment (or not).

What I am doing right now is…  talking to MP’s and various Lords in the HoC, by helping them with research.

I’m also doing some research for the ‘POST’ office (that is the Parliamentary Office for Science and Technology) a government body who discuss research and analysis in all kinds of things, but more recently they have held discussions and posted documents about Welfare benefits looking at things such as IT (technology) and how people with various impairments might not be able to use these new services being introduced by the DWP (department for work and pensions).

I’m also looking into the Data Protection Act and how Fraud is rife within the DWP and it’s Work Programme (but I’ll blog about this at another time).

5. To Sum Up

So before you come to the conclusion that people with Disability’s, do not work / or are benefit scroungers. Do think again ! and make sure you know yourself what the right thing to say is.

Working people like me, ARE tax payers. We pay rent too.  This is why I protest against the Welfare cuts, as it effects employment and a chance in a working life.

A Disability is for life…. fact !

Disability, effects everything around you, and sometimes there’s a small chance of a cure. There isn’t one right now for the over 50 million people worldwide who suffer daily with Seizures and Epilepsy.

So now you can see why I was there at the Hardest Hit protest in Bristol, on Thursday 25th October 2012.

Credits:

photo’s by Sam Downie (c)

Sarah Reid: How my Daughter Layla (age 7) wrote a book

Epilepsy for Kids - Book CoverSarah Reid (Bristol Epilepsy Support Group member) explains how her seven-year-old daughter Layla has written a book, “Epilepsy for Kids”, for children who have a family member with Epilepsy,

Epilepsy for Kids by Layla Reid, published by Pomegranate Books, Bristol £6.50 (p&p free for limited period).

(or CLICK HERE – to buy Epilepsy for Kids by Layla Reid , on Amazon )

“I had been hunting high and low for ages to find a book explaining epilepsy to my seven-year-old daughter Layla. I have come across so many books aimed at children who have epilepsy and adults who have epilepsy – but nothing for a child who has a family member with epilepsy.

Layla has witnessed me having seizures many times. At the worst point I was having five seizures a day.

I remember her getting so upset at times when I have been semi-conscious that I felt like crying. On one occasion I had a seizure at my parents’ house. I was surrounded by paramedics. My dad was trying to reassure her in the kitchen as she was screaming for me. I just wanted to run and tell her “It’s ok. Mummy’s here”. But I couldn’t, as my body wouldn’t do what I wanted it to do.

I feel useless at times and want Layla to understand why I can’t always do the things that mummies are supposed to do, like baking cakes together when we’re on our own or preparing the tea. Last time I tried I had a seizure and my husband Mark came home to a kitchen full of smoke. The thought that I could have set the house on fire and hurt Layla fills me with horror. I would have never forgiven myself.

I want Layla to understand why I can’t drive, why I always have to rely on others for lifts and why I can’t have a bath or shower when I’m on my own. I want her to understand why I worry about my clothes and whether anyone can see the incontinence pads which I wear in case I have a seizure and lose control of my bladder. This can be very upsetting and embarrassing.

I really hoped that finding a book to explain epilepsy would help Layla to understand these things.

Then I noticed that Layla was carrying around a notepad and pen. Inside she had drawn pictures and written about me and my seizures. It was things like, “Mummy has written front and back door on her keys so I can open the door and let the ambulance people in.”

That was when it struck me that perhaps Layla could write a book for children who have a parent with epilepsy.

Seeing the book now makes me so happy and proud of Layla. Each page has a simple drawing and explanation in Layla’s own words about how seizures affect everyday life. I hope it will let other children know they are not alone. I hope that by explaining about seizures it will help them to cope.

Since the book has been published I have met some amazing people, many of them with epilepsy, and some who have friends or relatives with epilepsy. One lady said she wished Layla’s book had existed when she was a girl as her brother has epilepsy and his seizures used to terrify her. She didn’t know what they were or what to do.”

The media has shown an incredible amount of interest in the book, both locally and nationally, and with the help of the Bristol Epilepsy Support Group and Epilepsy charities in the UK, such as Epilepsy Society and Epilepsy Action, I am confident we can do a lot to raise awareness about epilepsy.

[hr]

Epilepsy for Kids by Layla Reid, published by Pomegranate Books, Bristol £6.50 (p&p free for limited period).

(or CLICK HERE – to buy Epilepsy for Kids by Layla Reid , on Amazon )

 

National Epilepsy Society is seeking volunteers

The Epilepsy Society ( previously the NSE) is on the lookout for volunteers to help inform people about epilepsy in Bristol and the surrounding area.  

The Epilepsy society runs an information network, distributing information and giving support to people with epilepsy, their families, carers and others in the community.  If you are interested in joining Bristol team call Brenda Willis on 01803 882535 or email her at brenda.willis@epilepsysociety.org.uk.You don’t need knowledge of epilepsy as volunteers receive training. You just need to be a good listener, keen to help, enjoy meeting people and are happy to learn new skills.

The Epilepsy Society is also searching for people to help with its schools awareness programme. Trained volunteers spend time talking to pupils and staff about epilepsy – so if you can see yourself providing information at hospitals or clinics or visiting schools please get in touch.