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who were pursuing a legal case against the makers of an epilepsy drug have dropped their action because legal aid was withdrawn’ BBC News January 20th 2011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

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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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/

‘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

Invalid and Invalid – A walk on the dark side of health

One word I hear mentioned a lot in relation to health is invalid.

Not so much as a description of a sick person, but from the mouths of the sick I hear a lot of;

‘My feelings aren’t valid’

‘I feel invalidated’

‘No one listens’

‘I need an advocate’(1)(2)

From the vulnerable I hear it crying out like an echo, coming up again, and again, and again.

It’s like a sound that isn’t heard.

Why do sick people feel invalid? Why do we need advocates to speak for the sick? Does being sick mean that you can’t speak?

Or does it mean that others don’t hear what is being said?

There are lots of situations where having another person or ‘advocate’ to fight for someone else’s corner is necessary, not just in legal situations but in health settings as well.

I decided to look at where the words invalid and invalid come from.

One word two different meanings. (3)

One is ‘invalid’ in relation to sickness, one means ‘invalid’ in relation to having no cogency or legal force.

How does suffering from disability, illness or injury lead to invalidation?

How did sickness become to invalidate? (4)

As I read around the subject I came across this article http://eqi.org/invalid.htm it defined invalidation in the following terms;

‘Invalidation is to reject, ignore, mock, tease, judge, or diminish someone’s feelings. It is an attempt to control how they feel and for how long they feel it.’

‘Psychiatrist R.D. Laing said that when we invalidate people or deny their perceptions and personal experiences, we make mental invalids of them. He found that when one’s feelings are denied a person can be made to feel crazy even they are perfectly mentally healthy’.

‘Invalidation goes beyond mere rejection by implying not only that our feelings are disapproved of, but that we are fundamentally abnormal. This implies that there is something wrong with us because we aren’t like everyone else; we are strange; we are different; we are weird.’

‘Psychological invalidation is one of the most lethal forms of emotional abuse. It kills confidence, creativity and individuality.’

The article ends with;‘I still remember many years ago when I was driving my car thinking about how people in my family would so often argue and debate about everything. I stopped the car, opened my laptop and wrote in a large font ‘

‘Feelings Are Not Debatable’

I found this article very sobering,

Not only can people feel invalidated when they are unwell, but by actually invalidating people’s emotions healthy people can become sick.

The article actually links this type of invalidation to personality disorder. (5)

This made me think about another area of invalidity.

In Britain there has been a welfare state (6), which has supported the vulnerable and provided subsistence level state benefits to live off.

In 2008 a new benefit called ‘Employment and Support Allowance’ was introduced to replace the old ‘Incapacity Benefit’.

As part of ‘Employment and Support Allowance’ sick people have to complete a questionnaire and sit a medical assessment.

‘Charities and disabled groups say the assessment is “not fit for purpose”, with appeals against 40% of claims that are turned down. They cite cases of suicide where the coroner has said denial of benefits was a contributory factor. The BBC’s Panorama this year found a case of a man who died of heart failure just 39 days after being found fit for work’ (7)(8) Randeep Ramesh Social Affairs Editor The Guardian Thursday 13 December 2012

So, invalids who don’t have their health needs validated and recognised by the state are actually dying because of the lack of recognition or validation of their health needs for benefit purposes.

In terms of health I would argue that validation of health needs, experiences and emotions would lead to a healthier society.

If invalidation leads to sickness I would argue that currently our society is heading in the wrong direction, people can only be well when they are valid.(9)(10)

1)      http://www.mind.org.uk/help/rights_and_legislation/mind_guide_to_advocacy

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

3)      http://www.thefreedictionary.com/invalid

4)      http://www.thefreedictionary.com/invalidate

5)      http://en.wikipedia.org/wiki/Personality_disorders

6)      http://en.wikipedia.org/wiki/Welfare_State

7)      http://www.guardian.co.uk/society/2012/dec/13/disabled-man-government-court-benefit-test

8)      http://www.citizensadvice.org.uk/not_working.htm

9)      http://www.thefreedictionary.com/valid

10)   http://ahmritanaturalmentalhealth.wordpress.com/2012/12/10/recovery-living-the-experience-of-hope/

I found this blog on autism by ahmrita natrual health really interesting and there is a great link to about the neurodiversity movement.

Ignite Your Life Though Action

Thank you to Reflections on life thus far, for this response! http://reflectionsonlifethusfar.wordpress.com/

I am hoping to enlarge on this with some back up from a webinar I have seen this week and also an article about early behavioural interventions, which I am still reading.

I don’t believe Autism Spectrum Disorders are mental illnesses; rather, they are neurobiological disorders. They are a neurological difference instead of a sickness. Treating it as a mental illness makes it seem like the person with it is ‘not quite right’. True, some may have struggles and need coping skills taught to them for their particular challenges but I would certainly not deem them mentally ill. Autism is part of the person and makes them who they are.

It is a similar thing with dyslexia and ADHD. Although these conditions can make the person’s life difficult it’s better to find coping strategies. Many people simply…

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Health Problems and Emotional Wellbeing – Prevention Not Cure

In his forward to Chinese Medical Qigong page 1 (1) Marc S. Micozzi M.D. PHD states “current political debates in the US about healthcare “reform” amount only to “rearranging the deck chairs on the SS Titanic”.

Personally I would extend this description of healthcare to Britain as well, because in my experience current welfare and NHS “reform” amounts to the same superficial, short sighted rearrangement. (2)

In global economic recession poverty and therefore health problems are on the rise.

In the book ‘Violence, inequality and human freedom’ by Peter Iadicola and Anson Shupe; ‘structural violence’ is described as ‘violence of institutions’, ‘for example, violence can be an outcome of how we have organised society in terms of access to basic necessities of survival’ (3). The implications of which are limited access to medical care and education for the poor.

In the wake of the economic sinking ship there is the question; how to tackle health problems when poverty is on the rise?

The NICE Guidelines for clinical excellence (4) lay out the ‘stepped approach’ for mental health problems and recommend therapies such as Cognitive Behavioural Therapy, counselling and access to health care services which should be available to combat common mental health disorders. NICE lays out all guidelines for healthcare in Britain.

It is unfortunate that the resources to provide for these guidelines are being cut, or in some cases are simply not there at all (5). Additionally changes to the benefit system are being made which negatively impact upon the emotional health of the sick and disabled (6).

The situation is not helped by competition for the little work that is available. It is easier to manage health with an income and something to occupy the mind such as a job, in my experience.

What possible solutions are there to these problems?

Could the application of systems theory (7) be the beginning of change in bringing information about health to the masses?

In her book ‘Your Health is Your Wealth’, Jacqueline Harvey appears to be supporting the view that self-education and self-care and responsibility are the way forward in terms of a long term solutions to integrative health. (8)

I support this whole heartedly, as in my experience holistic health practices such as yoga (9) and tai chi (10) are very beneficial for health and promote self-care and self-education. They encourage the exploration of body, nutrition/diet and psychological personal development.

It would be nice to think that children have the opportunity to access these types of exercises and mindfulness practices, as well as physical education and sports so that in the future they did not need to access Dialectical Behavioural Therapy (11) for health conditions like personality disorder. DBT has some basis in Buddhist mindfulness practice. Would it therefore be cost effective to build mindfully based approaches to health into the education and health system from an early age?

In the circumstances the building of networks, social or otherwise, and communities on a local, national and worldwide scale; made up of existing established resources, practices and health resources seem like the way forward in tipping the balance towards preventing health problems and managing conditions.

I think I am a little bit ‘evangelical’ about promoting personal health care exploration.

God bless the World Wide Web.

And finally:http://www.drfranklipman.com/motivation-and-personality/ an after thought but very relevent.

References

(1) Chinese Medical Qigong – Editor in Chief: Tianjun Liu, OMD Associate Editor in Chief: Kevin W Chen, Ph.D.

(2) http://www.huffingtonpost.co.uk/vincent-brogan/private-healthcare-and-th_b_1909057.html?utm_hp_ref=health-and-social-care-bill

(3) Violence, Inequality and Human Freedom by Peter Iadicola and Anson Shupe ISBN:0-7425-1923-6 Rowman and Littlefield Publishers, Inc

(4) http://www.nice.org.uk/nicemedia/live/13476/54520/54520.pdf

(5) http://www.guardian.co.uk/society/2012/jul/11/benefit-reforms-penalise-disabled-people

(6) http://www.macmillan.org.uk/Documents/GetInvolved/Campaigns/Benefits/FailedByTheSystemReport.pdf

(7) http://en.wikipedia.org/wiki/Systems_theory

(8) http://www.amazon.co.uk/Your-Health-Is-Wealth/dp/1401916287

mine came free with http://www.ommagazine.com/ October 2012

(9) http://littlewindmillyoga.com/2012/10/21/yoga-the-ultimate-freedom-trailer/

(10)                    http://www.taichimaster.com/tai-chi/the-tai-chi-tipping-point/

(11)                    http://www.priory.com/dbt.htm

‘It’s character building’ – Epilepsy and Karate part 2

I read an article written by one Sensei analysing how she felt following a car accident where she injured her back quite badly and found her-self lying in hospital thinking ‘none of this is as bad as a training session with our Sensei’.

Under the firm conviction that ‘it’s a man’s world a girl’s got to be able to look after herself’ I put aside my reservations about Karate and joint care to have a go as an adult.

As a child I struggled to hit people with conviction. Not being the slightest bit athletic I was happier doing kata as it meant remembering patterns or dancing around as I saw it (all wannabe ballerina’s do!). I only learnt 3 kata because I didn’t stay long enough to learn any more.

As an adult, thankfully, like ‘Cat- woman’ in the latest Batman film ‘The Dark Night Rises’; I don’t feel quite so strongly about not hitting people. Preferring the approach of ‘varying degrees of massage’ I did feel strongly that it is important to be able to defend myself.

I went to see the film ‘Lawless’ last night (based on a true story) (1). The story of 3 brothers, the youngest of whom is Jack Bondurant (played by Shia Lebouf) who wouldn’t hurt a fly.

The film is interesting from the point of view that we see the events that change Jack.

How violence and injustice cause people to behave and the outcome at the end make for a gripping movie. What is more interesting is that the final straw is not violence inflicted on Jack, but against those he loves that is the emotional turning point.

The film is a study of fear and survival at a time of great hardship.

Physical and psychological attack is something that happens in life. No-one wants a big sign over their head saying ‘kick me’.

Sickness and disability in particular make people vulnerable to harassment, discrimination and abuse.

The way sick and disabled people are viewed in Britain currently is a whole new Dickensian novel. (2)

The Paralympics have just been hosted In Britain and while this has brought much discussion and debate in our country about ability in the context of disability; society has a long way to go before everyone is treated as equal. (3)

My own personal ‘fight back’ campaign began with Karate as a child and somehow stayed in my head as a ‘Nemesis’.

If I could draw a line pinpointing where it all started to go pear-shaped at 12 years old after falling down the stairs from having a seizure then Karate was the defining event.

Ultimately to beat epilepsy it felt like I had to do karate.

If I were a computer it would be like going in and re-writing the programming. Who doesnt need a copy of ‘Toumb Raider’ amongst the microsoft office software?

Is this going towards the ‘Dark side’ or facing up to my own demons?

Personally to me it felt like I was addressing something within myself.

I wake up every day and look at myself in the mirror. I see my best friend and my worst enemy. That is before I even have to deal with anybody else.

When I first started training I was very ill. I purchased a t-shirt with a superman ‘S’ on the front. It was like I needed to create my own personal alter ego to make me superhuman and to protect me.

Nearly 5 years down the line I can honestly say that karate training has helped me keep a job (despite discrimination), keep my home and given me the help I need without having to resort to violence.

I think that everybody can find their inner ‘grit’. For me I just needed to find the people who could show me the way.

There is no such thing as superheros who can protect us.

If we are lucky we have friends who care enought to look out for us.

It would be nice to think that there is someone out there that would fight for you when your screaming but no-one can hear you.

1)      http://en.wikipedia.org/wiki/Lawless_(film)

2)      http://www.ukuncut.org.uk/blog/press-release-former-paralympian-joins-activists-to-target-atos#.UDaRnwwg0j0.facebook

1)      http://apps.facebook.com/theguardian/commentisfree/2012/aug/23/paralympians-state-help-disabled-benefits-cut