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epilepsy events Health Podcast

PODCAST: Episode 3 – MEMORY

This is episode 3 of the Epilepsy UK Podcast. It was recorded at the monthly Epilepsy Support Group meeting held in Bristol, United Kingdom, on October 2012.

In this episode – we hear from Dr Margaret Newson, Clinical Neuropsychologist at Frenchay NHS Hospital (in Bristol), who will discuss Epilepsy and its impact on Memory.

Episode 03: Epilepsy and Memory (October 2012)

Audio Duration: 1 Hour 10 Minutes
[mejsaudio src=”http://archive.org/download/EpilepsyPodcastUk-Episode3Memory/ep_pods1_ep3_memory.mp3″%5D

Listen to this 1 hour podcast, to learn about how our brains and memory reacts to Epilepsy seizures, and why can’t we remember anything whilst a seizure takes place.

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Don’t forget to follow Bristol Epilepsy on Twitter for lots of updates! we are @BristolEpilepsy

This podcast is © Dsoundz Media ( http://www.dsoundz.co.uk ) and was recorded and edited by Sam Downie.
This podcast is episode 3 of the Epilepsy Podcast UK.

Categories
Action Benefits Campaigns Department For Work And Pensions events Health news

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)

Categories
epilepsy Health news

Flu jab and Epilepsy

People with epilepsy are being urged by The Department of Health, to get their annual free flu jab this year!

Don’t wait until there’s a flu outbreak before getting your jab this winter, is the message being given to people with neurological conditions such as epilepsy. The Department of Health advises people who may be at risk of complications from flu, to contact their GP to book their annual free flu jab.

Flu is a highly infectious illness that spreads rapidly through coughs and sneezes. Flu symptoms (opens in a new window) can hit quite suddenly and severely and usually include fever, chills, headaches and aching muscles. You can often get a cough and sore throat.

You should visit your GP if you have flu-like symptoms and you:

  • are 65 years of age or over
  • are pregnant
  • have a long-term medical condition, such as diabetes, heart disease, lung disease, kidney or neurological disease
  • have a weakened immune system (the body’s natural defence against infection and illness)

Flu can be more serious for these groups and antiviral medication may need to be prescribed.

Read more about how to treat flu and who should see a doctor.

More advice is available from NHS Choices (opens in a new window).

Categories
Action Campaigns events news Protests

Protest: HardestHit Peaceful Protest, Bristol

 

When: Thursday 25 October, 12 noon – 2pm

There will be a protest by Disabled People outside Bristol City Council offices, College Green, Bristol, BS1 – on Thursday 25th October 2012 at 12 noon til 2pm.

Following the big noisy rally in London on Saturday 20th October 2012, this is part of the Hardest Hit Campaign about the grossly unfair cuts to welfare benefits that Disabled People rely on to live. This peaceful protest is to remind Councillors, Officers and all people that the CAMPAIGN ISN’T OVER YET.

Please email bristoldef@gmail.com and let us know if you are planning to come along to this protest so we have a rough idea of numbers.

Categories
Action Benefits Campaigns Department For Work And Pensions epilepsy

Charities seek to safeguard disabled people’s benefits, says Epilepsy Society

News from Epilepsy Society UK:

Epilepsy Society is urging newly appointed Government contractors to consider the needs of people with epilepsy when reassessing their disability benefits.

The charity is part of the Disability Benefits Consortium which is encouraging the contractors to sign up to 10 pledgeswhich they believe will deliver a fair deal for those with a disability.

PIP – Personal Independence Payment

The Government has awarded a contract worth hundreds of millions of pounds to two private sector companies, ATOS and Capita, to reassess disabled people for a disability benefit –  Personal Independence Payment or PIP. This is designed to help with the essential higher costs of living.

ATOS already conducts face to face assessments for people accessing Employment and Support Allowance (the benefit for disabled people out of work), but continues to draw intense criticism due to the high rate of inaccurate decisions, successful appeal rates (40%) and waste of restricted resources. Appeals to ESA decisions cost over £26 million in 2010/11.

Disability Benefits Consortium

The Disability Benefits Consortium  is concerned that many disabled people will be stressed and fearful of the new process – as well as mistrustful given the overarching aim of reducing expenditure. DWP plans show that 500,000 fewer disabled people will be eligible for support.

The consortium is calling on ATOS and Capita to learn lessons from the Work Capability Assessment, used to assess people for ESA since 2008, and sign up to 10 pledges that will help alleviate concerns, establish a greater trust in the new system and deliver a process that is as fair as possible under Government plans..

Disability Living Allowance

PIP is being introduced as the Government abolishes Disability Living Allowance (DLA) which was introduced from 1992 to help disabled people with essential higher living costs. The change affects working age disabled people (16-64 years of age) from April 2013 .

Epilepsy Society’s communications and campaigns manager Amanda Cleaver said:  ‘We urge contractors to sign up to the proposed pledges and also recognise the particular needs of people with epilepsy.’

Disability Benefits Consortium 10 pledges.

Disability Benefits Consortium (opens in a new window).

Author: Amanda Cleaver

Categories
epilepsy Media news

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.

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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 )

 

Categories
epilepsy news Podcast

PODCAST: Episode 2 | UK Epilepsy Podcast

This podcast series recorded, produced and presented by Sam Downie of Dsoundz Media and co-hosted with @AlastairMillen . In which they talk about epilepsy and the various aspects of the condition.

In the 2nd episode of the UK Epilepsy Podcast, join Sam + Alastair and guests Kristen and Ken, as we Talk about Epilepsy and the support that is out there around the world.

Episode 02: Epilepsy Foundation (4th October 2012)

Audio Duration: 1 Hour
[mejsaudio src=”http://archive.org/download/Episode2UkEpilepsyPodcast/ep2_ukepilepsypodcast.mp3″%5D

In this episode Ken Lowenberg, Senior Director of Communications, at the Epilepsy Foundation (USA) and one of the co-founders of TalkAboutIt.org a non-profit Epilepsy awareness charity – joins us, and talks about what and who the Epilepsy Foundation are, and what they do.

Ken talks about his work at The Epilepsy Foundation and The ‘Talk About It!’ Foundation and how he came to work with Greg Grunberg developing Talk About It! (www.talkaboutit.org ) and what these organisations do for people with Epilepsy, engaging with many television and movie celebrity’s by asking them to lend a hand in helping raise awareness about Epilepsy that effects over 65 Million people around the world.

We are also joined by Kirsten, who talks about her experiences as a mother of her daughter, Meg who has epilepsy and how talking about it is so important with schools. So that the teachers and students know what to do if Meg has a seizure.

Please Note: This podcast was recorded using Skype, so there may be a few audio problems on this recording.

This podcast is hosted, edited and produced by Sam Downie from Dsoundz Media, find us online at: www.dsoundz.co.uk

LINKS MENTIONED IN THIS PODCAST EPISODE:
Talk About It : www.talkaboutit.org
The Epilepsy Foundation : www.epilepsyfoundation.org

THE APP WE MENTION :
Yowza! : www.getyowza.com

FOLLOW US ON TWITTER:
Ken Lowenberg : @klowenberg
Kristen : @cheekymonkey8
Alastair : @AlastairMillen
Sam : @samdownie
Greg Gunberg : @greggunberg
Talk About It : @talkaboutitorg

Thanks for listening. Thanks for Talking About Epilepsy !

=========

PLEASE SHARE !

Categories
epilepsy news Podcast

PODCAST: Episode 1 | UK Epilepsy Podcast

This podcast series recorded, produced and presented by Sam Downie of Dsoundz Media and co-hosted with @AlastairMillen . In which they talk about epilepsy and the various aspects of the condition.

Episode 01: Talk About It

Date of Podcast: 5th September, 2012
Audio Duration: 1 Hour
[mejsaudio src=”http://archive.org/download/EpilepsyUkChatEpisode01Talkaboutit/epilepsy_podcast01_sept9_2012_talkaboutit.mp3″%5D

In this 1 hour podcast Sam and Alastair talk about their own experiences with epilepsy and how it effects them. They also talk about what support is out there and where to find it.

This podcast is brought to you in conjunction with the ‘Talk About It!’ Foundation, a non-profit Epilepsy awareness charity based in the USA, founded by Actor/Musician/App maker Greg Grunberg and Ken Lowneburg, founder of The Epilepsy Foundation.

This podcast, is part of their Talk About It! epilepsy awareness weekend, which started on Friday the 7th September 2012, and finished on the 9th September 2012.

For more information on the ‘Talk About It!’ weekend visit:  http://www.talkaboutit.org/weekend2012/

Visit the ‘Talk About It!’ website, and watch famous Celebrity’s talking with Greg Grunberg about Epilepsy at:   http://talkaboutit.org/

To join the ‘Talk About It!’ community, and join in with the chat – visit: http://talkaboutitorg.ning.com/

Thank you for listening, we aim to raise Epilepsy awareness- via us who have epilepsy and these podcasts.
Categories
Action Campaigns Department For Work And Pensions epilepsy events news Protests

Take Epilepsy Action Campaign

Take epilepsy action is a national campaign to raise awareness among the general public of different kinds of seizures and appropriate first aid.

Interested?
To find out more about how you can get involved, contact the PR and campaigns team.

Email
action@epilepsy.org.uk or call Epilepsy Action on 0113 210 8889The campaign will run for 12 months and target different audiences with the same messages about different kinds of seizures and first aid. If you have an opinion about the different kinds of people we should target, please use the email address above.

Or check out the website – www.epilepsy.org.uk

… where you will find photographs of the Bristol launch and a film showing how to provide first aid during a seizure and much more on Epilepsy Actions website.

Categories
epilepsy events news The Epilepsy Society

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.