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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A video that will give you hope in the next generation

Trenton and Lindsay Cochran on caring and muscular dystrophy

TED Blog

Walt Cochran, a teacher in Kansas City, shared this touching video with us for Education Week about his children — one disabled, one not — who make you think about the depth of the sibling relationship. Lindsay, 10, suffers from a form of Muscular Dystrophy called Spinal Muscular Atrophy and has been in a wheelchair since she was 2 years old. Meanwhile her older brother Trent, 12, sees his role as not just protective older brother, but as an ambassador to remind others that kids with disabilities can do anything they put their mind to with the help of technology and support of loving relationships. Really, we dare you not to shed a tear while watching this.

This video feels especially relevant today given a comment we noticed on John Legend’s performance of “True Colors,” from Caroline Playle, who gave a talk at TEDxKingsCollege. She writes, “This just made me…

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Guest Post – Autism And Epilepsy Combined

I would like to thank http://rosewinelover.com/ epilepsy action advocate once again for taking the time to write a guest post.

This month epilepsy me and neurology  has asked me to write a brief (or not-so brief) piece on what it’s like to live with both epilepsy and autism; I shall endeavour to do my best. Continue reading

life at full volume – meditation and diet fatigue fighting and side effects of anti epileptic drugs – GREAT blog!

Life at Full Volume

550131_425393197537643_1221104998_nAs a person living with epilepsy, I not only fight seizures, but I fight fatigue. And I fight fatigue with a mighty vengeance, baby. You’re probably wondering why I’m so fatigued. Well, I’m on a lot of Anti Epileptic Drugs (that’s just a fancy way of saying medication, but I kinda like Anti Epileptic Drugs. It sounds fancy!) and a common side effect of all of them is fatigue. So I can easily have a solid eight hour sleep and still feel tired throughout the day. It’s not the kind of tired where it’s like “Oh, a little coffee could cure this!” It’s the kind of tired where you feel like you could fall into bed and sleep for hours. And hours. And HOURS. But the thing is, sleep does absolutely nothing to fix this side effect. In my opinion, it just makes it worse, because you’re throwing off your…

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‘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

some of you may be interested in making a contribution to this post about ‘abiltiy’ or ‘disability’. I know I am.

The Autistic Voice

Hi Readers

Playing devil’s advocate today…

I recently gave a session on autoethnography and reflexive writing at Sheffield Hallam and I included several examples of autoethnography of my own.  One example was some reflexion I had done during the Paralympics.  Someone suggested I put it in a blog to encourage debate:

‘So the past month has been about planning, and watching the olympics and paralympics, which have really got me thinking about disabilities – in fact it is not about disability but all about ability.  Even the language used is interesting – political correctness talks about people of restricted height for example, but paralympics talk about dwarfism.  Language is much more direct, honest and matter of fact.  Is PC for the benefit of the ‘inflicted’ or is it to make the public feel more empathetic to individuals’ feelings?  Do we worry too much about upsetting people?

One amputee…

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What do Epilepsy, Autism, Hormones, Sleep, Music, Meditation, Exercise have in common? The Hippocampus and Neurogenesis.

This was my first full year of blogging and it has been an enormous learning curve.

Blogging has been an amazing way to connect with other people, read about life experiences, thoughts, emotions and ideas. Thank you to all the bloggers whose work I have read this year. It has been very enriching.

For me, I have been able to express myself in writing, and to say what I am thinking about – which is quite liberating.

Most of all blogging has helped me to make sense of epilepsy.

So, when I was looking back at all the subjects that came up in the last year, I was struck by how although very different subject areas were covered, a number of these topics  could all be knitted together in a ‘holistic’ kind of way via one area of the brain.

The hippocampus.(1)

Architecturally the hippocampus sits within the limbic system (2) fairly centrally inside the brain (towards the brainstem).

This area of the brain is implicated in; mood, memory, learning and spatial awareness. Because of these factors the study of the hippocampus has been important in diseases such as Alzheimer’s and depression.

Relatively recently scientists identified the hippocampus as one of a number of areas in the brain that is capable of neurogenesis into adulthood. (3) Neurogenesis is the ability of the brain to create new neurons.

For this reason the hippocampus crops up in lots of neurological studies.

Within epilepsy for example, some of the factors that aggravate seizure symptoms generally are sleep deprivation and stress. Sleep deprivation and stress negatively affect neurogenesis and there are a number of studies around the relationship with epilepsy and the hippocampus. One study in particular shows; abnormal neurogenesis in the hippocampus of people with epilepsy, increased neurogenesis in people with epilepsy and inhibited neurogenesis in the hippocampus, in particular a study relating to temporal lobe epilepsy (4). All of these problems can impact on mood, depression, memory and learning in epilepsy.

Having found information that epilepsy and autism can be linked I started exploring this area more and even found people advocating for both such as Epilepsy Action’s Advocate blog (5).

Within autism, the hippocampus is mentioned in studies relating to the importance of autism and working memory. (6) The reason I was looking at this relationship is because one of my friends who is on the autistic spectrum benefits highly from martial arts training. I read an article ages ago in ‘Martial Arts Illustrated’ magazine  about ‘Sandra Jane Beale Ellis’(7) who has autism and has spent her life helping people with autism to train in Karate (8). Recently someone posted a blog about how kung fu and tai chi training help people with autism. (9) These studies reminded me how much tai chi training helped me with seizures and how much my memory, concentration, co-ordination and overall health was improved by tai chi and karate training. Some studies of autism indicate that an enriched learning environment from a young age in autism can be beneficial to promote neurogeneisis (10).

Hormones such as cortisol negatively effects neurogenesis within the hippocampus (11) cortisol is elevated by stress. Studies relating to oestrogen show there may be some impact of this hormone within the hippocampus and co-ordination (12) I found this research interesting because of problems I have around oestrogen and progesterone and seizure control. Melatonin (13) studies within the hippocampus indicate that melatonin may have neuroprotective qualities and indeed other bloggers with epilepsy have said that they find melatonin supplementation to be beneficial (14).

This leads onto Sleep deprivation negatively influences or reduces neurogenesis within the hippocampus (15). I am quite interested in the importance of sleep in relation to this area of the brain, because it crops up a lot in my personal experience of managing seizures. Reading about Jill Taylor Bolt stroke insight caused me to think about how sleep influences the brain and why. The asdresearchinitiative also shows a study of how sleep pattern problems impact on autism. (16) During sleep the brain goes through a process of ‘pruning’ neurons, this process also happens at different times in life. (17) (18)

Music came up more recently in relation to the ‘Mozart effect ’ in classical music (19). Studies of the hippocampus in music show how the hippocampus is implicated in long term memory and stringing together music in the brain. The music of Mozart in particular has been used to train mice to carry out spatial tasks in mazes, and one theory is that music may activate the same pathways as spatial awareness in the brain. (20) Music can cause emotional responses and I was interested how the hippocampus is located in the emotional brain or limbic system.

Within meditation, Studies into meditation have shown that meditation influences neuroplasticity and neurogenesis positively within the hippocampus. (21)

Exercise studies show that exercise promotes neurogenesis within the hippocampus. (22) In relation to exercise and mental health exercise has been shown to have a positive influence on mental health and some studies show that this positively influences the hippocampus. (23) This could explain why life systems such as yoga or tai chi which incorporate meditation as well as exercise are very good for the mind and body, because they support growth in the hippocampus.

In the context of Traditional Chinese Medicine, the Kidney energy (24), is an area that I felt conceptually could be linked to neurogenesis by ‘pre natal chi’ (25) or Jing. This is because of the involvement of the Central Nervous System and stem cells in neurogenesis (26). I also thought that this could be carried across into ‘sexual energy’ or ‘kundalini’ in yoga.

Of course the hippocampus is only one small area of the brain and only one small part of the ‘whole body’, but I am interested that there are so many links with so many corresponding or similar impacting factors such as stress and sleep. The hippocampus is a bit like the ‘spaghetti junction’ of the brain! It is quite important how it fits into the whole body and mind because when it goes wrong or without it (such as was the case for poor Henry Molaison who had his hippocampus removed!)(26) things could get really messy!

The hippocampus is not the be all and end all of epilepsy and autism, or brain function; but I thought it was a good area to take a ‘big picture’ ‘small area’ snapshot into holistic mind body connections.

Normally I talk about one thing at a time, but it occurred to me that it can all fit together if you cross reference all these areas to help understand mind body health!

Happy Christmas and New Year! Wishing you all the best for 2013!

 

1)      http://en.wikipedia.org/wiki/Hippocampus

2)      http://en.wikipedia.org/wiki/Limbic_system limbic system

3)      http://en.wikipedia.org/wiki/Neurogenesis

4)      http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2654382/ epilepsy

5)      http://rosewinelover.com/      Epilepsy Action Advocate Blog

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

7)      http://challengeautism.wordpress.com/ Sandra Beale Ellis blog

8)      http://www.challengeautism.co.uk/#/autism-me/4543515032 autism and karate

9)      http://doctordilday.wordpress.com/2012/12/21/just-another-form-of-exercise/ tai chi and autism

10)   http://brain.oxfordjournals.org/content/124/7/1317.full#ref-29  enriched learning and autism

11)   http://en.wikipedia.org/wiki/Neurogenesis  cortisol

12)   http://www.ncbi.nlm.nih.gov/pubmed/16965297 oestrogen and cognition

13)   http://www.angelfire.com/yt/yas709neuroscience/hippocampus1.htm melatonin

14)   http://epilepsytalk.com/2012/11/19/epilepsy-and-melatonin-yes-no-or-maybe-so/

Epilepsy Talk

15)   http://asdresearchinitiative.wordpress.com/2012/12/24/top-40-research-articles-of-2012-autism/#comment-1391 autism research

16)   http://asdresearchinitiative.wordpress.com/2012/12/24/sleep-disturbance-in-autism/ sleep autism

17)   http://jonlieffmd.com/blog/new-brain-cells-many-triggers-for-neurogenesis pruning neurons in sleep

18)   http://ahmritanaturalmentalhealth.wordpress.com/2012/11/26/autism-spectrum-as-a-developmental-disorder/ see webinar

19)   http://dragonandrose.wordpress.com/2012/12/18/epilepsy-classical-music/ Mozart effect

20)   http://serendip.brynmawr.edu/bb/neuro/neuro99/web1/Sancar.html

21)   http://www.brainsync.com/blog/neurogenesis-your-brain-renewed/ meditation and neurogenesis

22) http://www.enotes.com/exercise-78701-reference/exercise-108360

23)   http://jonlieffmd.com/blog/new-brain-cells-many-triggers-for-neurogenesis exercise

24)   http://wellmother.wordpress.com/2012/12/20/reflections-on-winter-part-2-how-to-support-our-water-energy-and-the-energy-of-kidney-and-bladder-and-their-relevance-to-211212/ kidney energy

25)   https://www.acufinder.com/Acupuncture+Information/Detail/The+Definition+of+Jing+-+Essence prenatal Jing

26)   http://en.wikipedia.org/wiki/Neurogenesis

27)   http://en.wikipedia.org/wiki/Henry_Molaison Henry Molaison

Epilepsy & Classical Music

epilepsy and classical music experiences

dragonandrose

I wanted to do some online research to see if there was some connection between epilepsy and classical music.  Every time that I listen to it I instantly forget all of my worries and feel completely at ease.

According to http://www.epilepsyhealth.com/music-healing.html:

  • Raymond Barr, head of the Coronary Care unit at Baltimore’s St. Agnes Hospital says, “For adult patients, half an hour of music produces the same effect as ten milligrams of Valium.”
  • For best results, do not listen to music for more than three hours at one time. If you find that you’ve had music playing for more than three hours, turn it off and take a break. The brain responds to variety and too much of any one stimulus produces a kind of fatigue and even irritation.
  • You are unique. Experiment with different types of music, and be aware of the effects each style of music…

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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/

Recovery – Living the Experience of Hope

more about recovery, this time recovery from mental illness which is not given enought advertising or promotion. A lovely post from a mental health advocate about a mental health advocate.

Ignite Your Life Though Action

I have found the link to this video in my spam folder, boy am I glad I checked it out. The message of Hope and Recovery from a Mental Illness Diagnosis from someone who has lived it, is a ‘must share’ to encourage everyone not to give up.

http://www.youtube.com/watch?feature=player_embedded&v=_FolgAZ3YuU

 

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