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.

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GREAT parkinson’s neuro recovery blog!

Kaitlyn Roland

This week kicked off brain awareness week… and the people over at sharpbrains.com debunked 10 myths around brain fitness… here are my 5 favourites!

Myth 1. Genes deter­mine the fate of our brains.

Fact: Life­long brain plas­tic­ity means that our lifestyles and behav­iors play a sig­nif­i­cant role in how our brains (and there­fore our minds) phys­i­cally evolve.

(we have some aspect of control and can create new neural pathways – say with exercise for brain change!)


Myth 3. Med­ica­tion is the main hope for cog­ni­tive health and enhance­ment.
Fact: Non-invasive inter­ven­tions can have com­pa­ra­ble and more durable ben­e­fits, and are also free of side effects.

(drug side effects are not necessary, but side effects – like endorphins – from exercise are encouraged!)

Myth 4. There’s noth­ing we can do to beat Alzheimer’s dis­ease and cog­ni­tive decline.
Fact: While noth­ing has been shown to pre­vent the pathol­ogy of Alzheimer ’s…

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Neurological Rock Stars 4 – Dai Greene Captain GB Athletics Team

http://www.epilepsysociety.org.uk/WhatWeDo/News/DaiGreenecaptainsGBteam

I came across this piece in epilepsy society about Dai Greene, a fellow welsh person and his inspiring athletics career. His career in athletics  has assisted him to manage his seizures without medication.

There is a link to an interview with Dai Greene in Epilepsy Review issue 2 2011.

He talks about combating common problems with epilepsy by health, lifestyle and sleep management.

He talks about the differences between his seizure management and his brother who also has epilepsy.

Really impressive and inspiring story!

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.

Epilepsy, the National Health Service and the post code lottery – A Tale of Two, or Three or Many Postcodes

I have had some time to think about writing this post. It was sparked by my fellow bloggers post about the loss of her epilepsy nurse (1).

I do not have an epilepsy nurse. I had to put up quite a fight to keep my consultant neurologist.

First I would like to say thank you to my Consultant Neurologist and to my GP Doctors medical practice. I would like to say thank-you, you are all great and you are all doing the best you can in what appears to be increasingly difficult conditions in relation to funding health services in the UK.

But in relation to access to health care for epilepsy, this is my story.

As a child with epilepsy I saw my consultant pediatrician and was assigned to him until my 18th year when I finally became an adult under UK health provision.

He tended to my health care needs and oversaw my prescription medication. He was a lovely man and I was sad to hear he has now passed away.

I encountered the biggest problems with seizures whilst I was at college in my late teens and early 20’s. I had moved away from my home hospital in Wales and after a couple of years ended up in England.

There did not seem to be any plan for who would oversee my medication and epilepsy care. I think on reflection that this was at a time when there were no National Institute of Clinical Excellence (NICE) guidelines for epilepsy care (2)(3) in the UK. Through organisations like Epilepsy Action (4) awareness of the importance of epilepsy care has also grown amongst health care professionals.

My GP (General Practitioner) in England was in charge of my medication and decided to change it. The change was made (as it always is) in my best interests. When I had a significant deterioration in seizure control because of the new medication it took 2 years for me to be assigned to a Consultant Neurologist in a different county in England.

England has different health care arrangements by different County’s much like Wales, but these shift depending on where the specialist services are located.

The consultant who I was assigned to was an expert in his field, but he had a LOT of patients and not a lot of time for me. This experience was not a positive one.

I moved from one county in England to another county, and despite significant problems with seizures there really wasn’t much help from my then neurologist because he just gave me more and more medication which didn’t work.

It is difficult not to want to apportion blame, but I have come to the conclusion that when things go wrong rather than being one person’s fault it is in fact a huge system failure that by and large results in poor health care.

I think that medication is seen as the cheapest option and therefore, for a lot of people the only one.

Finally after some years, my GP decided to take action and referred me to a new Neurologist. This is the one I see to this day. I hold him in high esteem and think he is very thorough. He does listen to me, even though we have differences in opinion.

The problem with this was we had to start from scratch.

He left no stone unturned in the search for my brain squiggles (EEG), and although it took years for him to confirm that I am indeed epileptic, at least I now have closure on this. It made me highly anxious that there may have been some possibility that I could have a brain tumour, scar or be so deeply troubled that I might be able to lose consciousness and go blue and have convulsions all by myself. Then there were the lights, headaches, myoclonic jerks and medication side effects as well as partial seizures.

I could access the epilepsy nurse under my Neurological Consultant in England.

I will never be able to thank my neurologist enough for removing most of my medication.

I can now think.

But it wasn’t over there.

I am now back in Wales and continued to see my neurologist in England without any problems for several years. I did not have an epilepsy nurse, but that didn’t matter so much because I was assigned to a specialist neurologist.

Then the local health board was re-arranged to create a different funding structure a few years ago.

The county where I live does not have a Specialist Consultant Neurologist for Epilepsy or Epilepsy Nurse.

One day I got a letter from the hospital in England saying that my health board were no longer going to pay for my neurological consultations.

This decision had been taken by the local health board without assigning me to a Consultant Epilepsy Neurologist in Wales, or Consulting my General Practitioner or my consultant neurologist in England.

I was absolutely furious. I made a complaint with the help of an NHS Advocate.

I was not able to see my consultant for a year.

It took the health board that long to work out that they would have to pay for me to see a Consultant Neurologist in Wales if they did not continue to fund my trips to England.

As part of my complaint I asked the health board to tell me what they planned to do about access to epilepsy services in Wales.

Then there was a change in Government.

I am now deeply troubled by the current government’s ideas about private health care. (5)(6)

My health has suffered because there was not a joined up service. Under the new proposals, the NHS would be more open to private companies and further fragmentation.

I have seen how private companies and fragmentation has negatively affected the welfare state in Britain.

I find it deeply troubling that more and more people not just with epilepsy but with other health problems will fall through the gaps or face charges for care when there is no money.

If your health is poor you can’t work.

I feel like I have to do all the health care work for myself.

I still don’t have an epilepsy nurse.

In comparison to some countries I obviously feel grateful to have health care at all.

This is not everyone’s experience of epilepsy care in Britain, but it is mine.

1) http://rosewinelover.com/2013/02/25/you-wont-be-seeing-frank-any-more-hes-no-longer-here/

2)http://publications.nice.org.uk/the-epilepsies-the-diagnosis-and-management-of-the-epilepsies-in-adults-and-children-in-primary-and-cg137

3)http://publications.nice.org.uk/the-epilepsies-the-diagnosis-and-management-of-the-epilepsies-in-adults-and-children-in-primary-and-cg137/key-priorities-for-implementation#management

4) Epilepsy Action http://www.epilepsy.org.uk/

5) http://www.bbc.co.uk/news/health-21649307

6) http://www.bbc.co.uk/news/health-21703667

fire in the blood.

Make Wealth History

This week has seen some excitement over the possibility of the first case of someone being ‘cured’ of HIV, generating a lot of hope and expectation for future treatments. This week has also seen a little attention on the story of HIV drugs in Africa, which is a much darker story. It’s been told for the first time in a new documentary, Fire in the Blood, which is currently screening in Britain.

It’s the work of Indian-Irish historian and filmmaker Dylan Mohan Gray, and it tells the story of how the pharmaceutical companies blocked the sale of cheap anti-retroviral drugs in Africa. It protected their profits, but caused an estimated 10 million unnecessary deaths. That’s a crazy number of deaths that could have been avoided. You would need to add the Holocaust and Stalin’s gulags together to match it. It’s little wonder Gray refers to it as ‘the…

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Britons beware of changes to the NHS. A Time Magazine article on the problems with private health care accross the pond.

Health & Family

Corrections Appended: February 26, 2013

1. Routine Care, Unforgettable Bills
When Sean Recchi, a 42-year-old from Lancaster, Ohio, was told last March that he had non-Hodgkin’s lymphoma, his wife Stephanie knew she had to get him to MD Anderson Cancer Center in Houston. Stephanie’s father had been treated there 10 years earlier, and she and her family credited the doctors and nurses at MD Anderson with extending his life by at least eight years.

Because Stephanie and her husband had recently started their own small technology business, they were unable to buy comprehensive health insurance. For $469 a month, or about 20% of their income, they had been able to get only a policy that covered just $2,000 per day of any hospital costs. “We don’t take that kind of discount insurance,” said the woman at MD Anderson when Stephanie called to make an appointment for Sean.

Stephanie was then…

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How do beliefs interfere with and prevent recovery? Is there a happily ever after to your fairy story?

I have been recovering from epilepsy for a long time and have become interested in reading a great deal about belief in relation to health and wellbeing. Other bloggers have touched on it recently, for example an excellent post from the http://workitwell.wordpress.com/2013/01/18/what-are-your-core-beliefs/

was titled ‘what are your core beliefs’.

Belief is a big word with few letters. Thinking about it might bring up ideas about your-self, others, religion, believing in something not believing in something, maybe even right and wrong.

So at what stage in your life did you start asking questions about the tooth fairy and Santa Clause?

Why do we believe what we believe and at what point do we begin to ask questions about these beliefs?

In the context of religion for example, asking questions about faith could be a welcome part of the discussion within a place of worship. Spiritual leaders may encourage debate about beliefs and use them as an opportunity to Shepard their flock to safer pastures.

However examples of how much resistance has been encountered in relation to changing beliefs can be found throughout history.

One such example of this would be the geocentric model (1) of the earth as the centre of the universe, and the resistance faced by Galileo Galilei (2) when he tried to present his case that things might be different.

Without reconsidering and changing beliefs such as the Earth as the centre of the universe, humans may never have made it to the moon. We could still be trying to leave the ground instead of taking into account new physics to take us upwards on an evolutionary path towards new technologies.

Can you imagine what would have happened if Galileo had suggested that you could communicate with people the other side of the world on an electric light box?

Bearing this in mind, how difficult is it for us to challenge or own beliefs and those held by people who are charged with our health care?

This type of difficulty is well illustrated by the distressing experience of Well Call me crazy here:

http://wellcallmecrazy.wordpress.com/2013/02/16/the-irony-of-it-all/

Having had experience of how difficult it can be to hold the ‘reflective mirror’ up to myself at what point do you question the beliefs of your doctors?

It is a sad fact that the men in white coats are often given great power by us. We look to them to answer our health problems but sadly don’t question their fallibility, and even if we do we can easily be put off by the sheer dazzling power of the white coat complex.

‘With great power comes great responsibility’ (star wars), which is sadly often abused. Pharmacy is big business and there are many millions of billions of motivations why modern medical culture doesn’t encourage us to ask questions about what is in our medication, how does it work, and what is it doing to the body?(3)

Great strides have been made by modern medicine in the mechanistic understanding of the body and yet the deities charged with our health care are only human. Why do we not ALWAYS ask what are you putting into my body?

A lot of people like my-self may have had the experience of being told that they would be on medication for life and that they need to be cured.

I prescribed to this belief for many years, despite experiencing side effects that were detrimental to my health and emotional wellbeing. This belief was driven simply by the fact that I thought my doctors new best. As a result of taking medication without question I didn’t get any better and ended up with significantly more health problems as a result.

I can’t remember exactly when I began to question the men in white coats, but I can remember that it was after I began to seek help from a white coat who went against the grain and decided to reduce my medication. The problem was it was turning me into a zombie – and zombies defiantly don’t think for themselves or ask questions.

My white coat was actually not convinced that I was epileptic at the time, so although I have to give him some credit for removing the medication it wasn’t because he had acknowledged that I am epileptic; although this did change once he had removed enough medication to find my EEG.

Whilst alternative therapies continue to be held up as many things (including the last resort for patients such as myself) there are a number of common denominators that I feel are important to mention.

The power of belief.

I have been following the work of Lissa Rankin MD.(4) You may have seen her TedX talk which I have posted at the bottom of the page. The placebo and nocebo effects are covered and Lissa speaks about the work of the institute of noetic Sciences (5) spontaneous remission project.(6)

Lissa’s blog has recently run a 4 part series http://lissarankin.com/is-it-your-fault-if-you-cant-heal-yourself-part-1 which asks is it your fault if you can’t heal yourself? This question in particular is relevant to recovery from ill health and was sparked as a result of the suggestion that we perhaps may be able to heal ourselves without medication and/or despite it.

Lissa’s work is an encouraging step towards introducing the notion that the body and mind may be intrinsically woven together in a more complex way than is currently outlined by modern Big Pharma medicine.

Would now be an appropriate time for Western medicine to start asking questions about how the mind is woven into the fabric of the body? Or is it too much of an expensive and painful prescription to swallow for Big pharma?

For me I it is not too late. I have had the lights turned on. The fog has lifted, and now I can ask questions.

For years I have been labouring under the impression I can’t learn, but last year I went to college and got 88%, 84% and 69% in exams in the same month as having seizures all month. I have spent this week twitching and seizing but I can still think.

The question had to be how?

All the time I couldn’t think I believed it was because I have epilepsy.

Now I have come to the conclusion that this isn’t so. I couldn’t think because I was on vast quantities of mind bending prescription medications.

I have had to address my core beliefs.

It has been very challenging and I still haven’t had time to integrate this new view of myself into my mind and body.

Socially epilepsy can be a very stigmatising health problem to experience. My experience has made me question how much society, attitudes, and beliefs play a part in recovery.

Thankfully I feel like I have been given a second chance. Realising that I can think and study has meant that I can go back to college to study with the support of my family.

Maybe one day we will all believe that the body, mind and environment are linked and that they are all as necessary for health as each other; just like we can now see we are only a small planet in a solar system in a universe that doesn’t revolve around us – or does it?

This post below illustrates how a different world view can influence recovery, and how diet is important to blood chemistry.

http://freeupliftingbooksonline.wordpress.com/2013/02/15/cup-of-green-juice-for-life-eating-light-with-michiyo-mori/

Why do we consistently reach for pills when diet can be so powerful?

It is sad to think that so many people may never know who they are without medication. I am glad that I found out.

http://www.youtube.com/watch?feature=player_embedded&v=LWQfe__fNbs

Lissa Rankin MD TEDX

1)http://en.wikipedia.org/wiki/Geocentric_model#Historical_positions_of_the_Roman_Catholic_hierarchy  Geocentric model

2) http://en.wikipedia.org/wiki/Galileo_affair

3)http://www.alternet.org/story/147318/100,000_americans_die_each_year_from_prescription_drugs,_while_pharma_companies_get_rich

4) http://lissarankin.com/is-it-your-fault-if-you-cant-heal-yourself-part-1

5)http://noetic.org/library/publication-books/spontaneous-remission-annotated-bibliography/

6)http://noetic.org/research/program/consciousness-healing/

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

‘Disability is a crushed spirit’ as defined by Aimee Mullins –‘Ability’ or ’Disability’ what is it all about?

For me disability is about education and empowerment. Of myself and others.

Not talking about disability, in my case epilepsy, leads to fear and ignorance, it creates taboo and prejudice.

Not embracing epilepsy or disability as a part of me would be to deny my whole self. Until it sits alongside me as my reflected other half I am not whole.

Treating disability with a ‘Fight Club’ mentality (The first rule of Fight Club is: you do not talk about Fight Club) (1) will not lead to health (you only have to watch the film to see how destructive this type of thinking can be! (2)).

Disability for me is about acceptance of myself, but in the wider social context to be accepted by society would be the ideal.

Not accepting our differences leads to disharmony within the self and society.

There is a fine line between ‘accepting’ and ‘labelling’ disability. It is about how we see ourselves as much as how others see us.

http://www.drfranklipman.com/aimee-mullins-redefines-the-word-disabled/

Frank Lipman’s blog about Aimee Mullins is one of my favourite posts from 2012. In it she talks about all the disempowering negative language that is associated with the word ‘disability’, and gives her new definition.

One of the most frustrating things about having epilepsy is people who tell me I’m sick. Actually, they often never get as far as the word disability, I am ‘sick’.

Disability its self is a big label to be handing out, but sickness!

Normally, I might add, my personal experience of the word ‘sickness’ is that it is banded about in the context of work!

I am NOT sick, I am not DEAF, I am epileptic, but I am capable, I am intelligent and I can use my voice and prove everyone who ever said I can’t do something that they are wrong about me! I don’t define myself by my disability but it really did help to make me who I am today.

‘Disable’, (verb)

To crush a spirit, to withdraw hope, to deflate curiosity, to promote an inability to see beauty, to deprive of imagination, to make abject.

Ant.  To make poss-able

Aimee Mullins 2009 new (and better!) Thesaurus  2009 Edition

Here she is in her TED talk, which is titled ‘The Opportunity of Adversity’.

She’s my heroine.

1)      http://uk.imdb.com/title/tt0137523/quotes

2)      http://en.wikipedia.org/wiki/Fight_Club