National Epilepsy Week 19th May 23rd May 2013 What Treatment Do You Prefer?

National Epilepsy Week this week and there is a reason to celebrate, because this month Epilepsy Action magazine published an article about an epilepsy research project titled; ‘Which treatment would you prefer?’.

A very sensible question, its always nice to be asked what you want!

🙂

you can take part by following the information in this link;
http://www.epilepsy.org.uk/research/take-part/projects-you-can-take-part-in/patient-preferences-treatment-options

BIG THUMBS UP TO THIS PORJECT!

*Actually its full title is ‘People’s Preferences and Priorities for Treatment Options and Outcomes in Epilepsy’ but I like to get to the point.

Singing for Alzheimer’s and Mysicophilia by Oliver Sacks

 

I recently had cause to dig out my copy of Oliver Sacks book Musicophilia and lend it to a friend, because she has started to volunteer for an organisation that is using singing to help people with Alzheimer’s. This improves memory, health and wellbeing.

For those of you that are interested the Alzheimer’s society project link is very interesting.

http://alzheimers.org.uk/site/scripts/documents_info.php?documentID=760 and shows a video of the project and has links explaining what it is.

I know a lot of people who have said sound effects their epilepsy, I found this  newspaper review that explains what Musicophilia has to say about Alzheimers and epilepsy.

If anyone wants to borrow my copy just let me now and I can lend it to you when it gets back to me!

‘Sacks tells some very moving stories about those with terrifyingly profound amnesia, or Alzheimer’s disease, for whom music can “restore them to themselves”. People with aphasia can be taught to speak again through singing. On the other hand, previously healthy people begin to have “musical hallucinations”, blasted by intrusive ghostly music during every waking second; and others have seizures in response to music, or “musicogenic epilepsy” – which, intriguingly, can be selective. One woman Sacks cites “had seizures only in response to ‘modern, dissonant music,’ never in response to classical or romantic music” – and her husband was a composer of the type of music that gave her seizures, which one suspects may be a hint. But such a violent response to certain music might be more common than suspected: “Many people, [one researcher thought], might start to get a queer feeling – disturbing, perhaps frightening – when they heard certain music, but then would immediately retreat from the music, turn it off, or block their ears, so that they did not progress to a full-blown seizure.” Indeed, certain styles of free jazz have always made me physically nauseous.’

http://www.guardian.co.uk/books/2007/nov/03/scienceandnature.music review Stephen Poole The Guardian Newspaper

Advice call after epilepsy drug Epilim study – Epilepsy Care In Wales BBC News

In the wake of the withdrawal of legal aid in the ‘Families who were pursuing a legal case against the makers of an epilepsy drug have dropped their action because legal aid was withdrawn’ BBC News January 20th 2011

http://www.bbc.co.uk/news/uk-england-london-21523434 London reporting on Pregnant women ‘unaware’ of epilepsy drug risks 25th February 2013, BBC Wales are now reporting:

http://www.bbc.co.uk/news/health-12242857

“Campaigner Nicole Crosby-McKenna, from Epilepsy Action, wants the Welsh government to review the way information is conveyed to pregnant patients in Wales.

She said: “We would like to know, if they haven’t got access to an epilepsy specialist nurse, who is giving the women that information? Are the GPs passing the information on to women? And also, do the GPs have enough specialist knowledge to accurately give them pre-conception counselling?”

http://www.bbc.co.uk/news/uk-wales-21733153

See BBC news links for full details.

Guest Post – Who Am I?

Today I am very honoured to have a guest blog post from http://rosewinelover.com/

Thank-for sharing your experiences!

First of all, I would like to thank Epilepsy Me And Neurology for inviting me to guest blog here. This has added a whole new aspect to my line of “work” – to advocate for epilepsy  from my living room, reaching a target audience all over the world.

So, who am I? Allow me to introduce myself…

My name is Gemma. I’m a thirty-nine year old housewife, married to a wonderful man who I have been with for five years now. I have a profoundly autistic son from a previous marriage, who lives with a foster family because I am not strong enough – physically or mentally – to be able to handle his behaviours without significant harm coming to others and myself. I do love him fiercly though, and so my husband and I visit him as often as we can. Continue reading