Epilepsy and Exercise Study and Epilepsy at the Olympics – ‘Exercise is good for the brain and the heart, and everything else’ Dr. Elinor Ben-Menachem from Göteborg University.

This week I was listening to the ETP (1) blog cast and was really inspired by the post on the work of DR Elinor Ben-Menachem on her project on exercise and epilepsy as discussed with Dr Joseph Sirven.(2)

Topics discussed:

Raising seizure threshold by exercising more.  Low cardiovascular fitness related to 79% higher risk of developing epilepsy after age 18.

Exploring the importance of exercise before the age of 18 in the importance of prevention of health problems in later life, including epilepsy. The possibility that exercise may be an inexpensive way of managing seizures is also mentioned.

Her message is that exercise is ‘good for the brain and the heart, and everything else’.

Full transcript (3)

Also of interest Dr Ben-Menachem’s Hot Topics Symposium Modulators of Epilepsy:  The Influence of Lifestyle and Environmental Factors (4)

This research presentation is interesting because it covers neuroplasticity, the hippocampus, the role of exercise in preventing central nervous system diseases, cardiovascular fitness and the future risk of epilepsy. Hormones are also discussed. The Hypothalamic Pituitary Testes and Ovarian axis is covered, together with progesterone treatment trial.

The hypothesis is: cardiovascular fitness could modulate brain plasticity by increasing amounts of circulating growth factors or beta endorphins or some other neuroactive molecule.

Dr Ben-Menachem discusses the Olympic silver medallist cyclist Marion Clignet (5) who was not allowed to race for America at the Olympics so she cycled for France instead. Marion has written a book called ‘Tenacious’ with a fellow sportsman yachtsman Benjamin Hovey who also has epilepsy see here (6) (7)

Further athletes with epilepsy at the Olympics can be found at (8) The Epilepsy Institute of North Carolina blog. Worthy of note in this blog post:

‘Dai Greene played football (soccer for us since he’s British) when he was a teenager.  He had to quit playing soccer in his late teens due to a growing spurt that causes knee pain.  It is called Osgood Schlatter Disease.  He now runs the 400m hurdler for Welsh and Great Britain.   Dai had his first seizure at seventeen.  He doesn’t take any medication; instead he doesn’t drink any alcohol and makes sure he gets the right amount of sleep needed.  Several medals have been won and he will be Captain for the Great British Athletics Team.’

This is very promising from the point of view of the possibilities of using alternative means to control seizures and giving people options beyond medication.

Dr Ben-Menachem has also written a book called Case Studies in Epilepsy (Case Studies in Neurology) [Kindle Edition] (9) This book looks very interesting and although it is out of my price range the initial ‘look inside’ was very promising so if you can find it at a library resource it may be very useful.

Dr Ben-Menachem covers barriers that prevent people with epilepsy from exercising such as; over protection, social isolation, low self-esteem, anxiety and depression. She mentions that weight can be a problem.

I would add one other problem area facing people with epilepsy and exercise which is ‘stigma’; either because of society, weather it is because of lack of understanding of epilepsy or ignorance of what epilepsy is and that it is important to exercise no matter what the health problem.

Exercising in groups is recommended.

Some useful strategies for safely exercising with epilepsy are covered in this blog post from Rosewinelover epilepsy action media volunteer;

http://rosewinelover.com/2013/01/04/epilepsy-and-fitness-resolutions-for-2013/

For myself I can say that without exercise my personal seizure management is extremely challenging because I experience so many positive benefits from exercising. (10)

Happy Exercising Everybody!

1)http://www.epilepsy.com/epilepsy/hallway_2013_podcasts?utm_source=Epilepsy+Therapy+Project&utm_campaign=535342f2b3-Epilepsy_News_2_20_13&utm_medium=email

Epilepsy Therapy Project

2) http://www.gu.se/english/about_the_university/staff/?languageId=100001&userId=6850

3) http://professionals.epilepsy.com/pdfs/Exercise%20and%20Epilepsy%20-%20HC%20-%201_9_13.pdf Epilepsy Therapy Project Blogcast Transcript

4) http://www.hope4harper.com/wp-content/uploads/2012/12/The-Influence-of-Lifestyle-and-Environmental-Factors.pdf

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

6) http://marionclignet.com/

7)http://marionclignet.com/tenacious

8) http://epilepsyinstitute.blogspot.co.uk/2012/07/epilepsy-and-olympics.html

9) http://www.amazon.co.uk/Case-Studies-Epilepsy-Neurology-ebook/dp/B00A8GYWBO

Case Studies in Epilepsy (Case Studies in Neurology) [Kindle Edition] Hermann Stefan (Author, Editor), Elinor Ben-Menachem (Author, Editor),Patrick Chauvel (Author, Editor), Renzo Guerrini (Editor)

10) https://epilepsymeandneurology.wordpress.com/2012/12/26/what-do-epilepsy-autism-hormones-sleep-music-meditation-exercise-have-in-common-the-hippocampus-and-neurogenesis/

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/

The Mystery of the Missed Connection – Review

Agenesis and the Corpus Callosum

Scientific American Mind (1) (2) January/ February 2013 published an interesting article on the ‘Corpus Callosum’ the connective bridge between the two hemispheres of the brain.

This particular article is very interesting as it discusses some of the common links of the area and research into Autism, Epilepsy and schizophrenia to name a few.

Critically, it discusses how neuroplasticity can affect ‘re-wiring’ of the brain if this structure is missing.

Because the corpus callosum is central it has many roles such as motor skills, attention and memory. It joins up the two hemispheres and helps them work together.

Although the article doesn’t discuss how hormones impact on the tissue in the Corpus Callosum it is a very interesting article about neuroplasticity and its implications.

In particular the article features a condition known as Agenesis – see this blog link for one of the contributors (http://agenesiscorpuscallosum.blogspot.co.uk/2012/12/acc-mystery-of-missed-connection.html). Of particular interest is the self- advocacy website attached to the blog for families and people with this rare condition see here: http://scenicbeauty.tripod.com/AngelsAroundTheWorld.html

This explains that Agenesis is a rare condition where children are born with out or only a partial corpus callosum.

I have read about the corpus callosum before in relation to Einstein who was dyslexic and had epilepsy. (3)

When the brain of Albert Einstein was cut up, it was discovered that he had a much thicker corpus callosum but other areas of his brain were deficient. (4)

In terms of neurodiversity and neuroplasticity I am very interested in the findings of the article.

As a follow up I had a look for information about hormones and the corpus callosum which was very interesting, as this e-book link (5) discusses findings in relation to difference in connectivity between the sexes and the studies relating to thickness of the corpus callosum caused by sex hormones which appear to have a great impact on the development of this area.

The author light heartedly puts forward the difficulties of studying sex difference and cognitive ability, and some of the problems (I mean arguments) this can cause between scientists.

I thought it was interesting that one piece of research seemed to suggest that the greater thickness of connectivity in the corpus callosum could account for better verbal skill/ connectivity in women! 🙂

1) http://www.scientificamerican.com/article.cfm?id=the-mystery-of-the-missed-connectio

2)http://www.nature.com/scientificamericanmind/journal/v23/n6/full/scientificamericanmind0113-54.html

3) http://www.authorsden.com/visit/viewArticle.asp?id=19984

4)http://recievemore.com/?tag=corpus-callosum

5)http://books.google.co.uk/books?id=2zNNhXqlJP4C&pg=PA199&lpg=PA199&dq=corpus+callosum+hormones&source=bl&ots=7I8iYq-ZMW&sig=r-QeVzRsFhFjs2YpqUI9vAX2x2Q&hl=en&sa=X&ei=VP_4UNnSFISW0QXB3oDwDA&sqi=2&ved=0CGIQ6AEwBw#v=onepage&q=corpus%20callosum%20hormones&f=false

More Health and Exercise Condition Management

Wales National Exercise Referral Scheme (NERS) – Cynllun Atgufeirio Cleifion I Wneud ymarfer Corff Cymru

Thank you once again to my ‘Yoga I Bawb’ teacher Alyson for pressing a guest blog from me in relation to health. If you are interested in reading it is at:

http://alysonyoga.wordpress.com/2013/01/09/yoga-for-weight-loss-and-peace-guest-post/

I thought that this would be a good opportunity to draw people’s attention to the Welsh Government scheme Wales National Exercise Referral Scheme (NERS).  Aimed at 17 years of age and over, who are not used to being regularly physically active and have a medical condition, the scheme is designed to provide opportunities to exercise that are fun; rewarding and that can be incorporated into every-day life.

It consists of a wide range of activities both gym based and class based to choose from for patients that have been through a rehabilitation programmes. The benefits are listed as weight management, reduction of blood pressure, reduced risk of heart disease and strokes, reduction of cancer risk, reduced stress and anxiety, improve mental and social wellbeing, increased energy, improve strength, mobility, co-ordination and balance and improved health and wellbeing.

The link for information is: http://www.wlga.gov.uk/ners

To be referred you need to approach your GP/practice nurse/health professional. Give it a go!

I have not had experience of this scheme myself but would be interested to hear from people with any feedback that they would like to share.

Perhaps there is a similar project helping people with health conditions through exercise in your area?

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.

‘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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