really interesting advanced cognitive neuroscience and application of gaming, mobile technology etc. Really cutting edge brain training!

Psyche's Circuitry

I just attended the second annual Entertainment Software and Cognitive Neurotherapeutics Society (ESCoNS) conference. Say that five times fast.  This conference brought together people in the gaming world with cognitive neuroscientists. I went because I’m developing (and testing) an app that I believe can help people reduce stress, worry, and anxiety in their lives. In addition to more deeply exploring how to make mental health truly fun, I felt that I was seeing the future of mental health unfolding before my eyes.

Gamifying mental health

Here are four ideas I think will change how the field of mental health will look in a decade (or less):

1. Mental health care WILL BE gamified. The mobile revolution and app zeitgeist have changed how we get things done. We want an app for everything because we want our life mobile and streamlined, and the minute we think we want to do something, we want…

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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

Why do I practise yoga? A personal perspective

Happy New Year Everybody!

The new year begins with a guest blog post from http://alysonyoga.wordpress.com/

If anybody is interested in doing a guest blog post please get in touch via my gravitar profile or drop a note to tell me how to contact you.

Thank-you Alyson for this blog post!

Guest blog post

Yoga’s been part of my life for so long I rarely stop and think ‘What am I doing?’ or ‘Why am I doing this?’ However, in writing this guest blog post, I’ve tried to put some of it into words to explain why I practise yoga, and some of the benefits it brings me.

I’ve been practising yoga for roughly half my life, attending my first classes when I was 17. I’d dabbled earlier than that at home with Mum apparently but can remember little of that. During university my yoga practice was on and off, but for the last 11 years I have been attending yoga classes regularly, at first once weekly, then twice, then three times, and then I took the plunge and started (and completed) my yoga teacher training and have been teaching since 2008.

But why do I go to classes and practice at home? For me, if I don’t do my morning stretches I soon start stiffening up. One Christmas I had family staying and routines were abandoned. After a week my neck, shoulders and back were stiff, aching and unhappy! A few days after getting back into my routine I was fine again.

My morning routine is only about 20 minutes long and consists of basic stretches that limber up most parts of the body and joints, and it seems to be the right amount for me to keep things ticking over.

If you are struggling to implement a daily routine start small. For years I talked of doing more yoga at home but I didn’t do any. Eventually I just set the alarm five minutes earlier than usual, got up and did five minutes of stretches. Gradually I increased the time and now it’s a regular easy habit.

So, I practise daily for physical comfort.

Less noticeably, I think the benefits are a calm disposition, a more peaceful state of mind, and greater body awareness. These are some of the less tangible benefits that a yoga practice can bring.

One of the things from the yoga teacher training course which had a direct impact was the starting of a pranayama (controlled breathing) practice and diary. I tacked this onto the end of my morning routine, and it’s something I’ve (generally) kept up. We sometimes focus mainly on the physical side of yoga, the postures, but the breathing practices can be very useful, and just as illuminating as to our current state of health etc.

Likewise, I have tried to also include a short meditation into my daily session, although sometimes this is pretty short! I find the meditation to be very beneficial in helping me focus, and just to observe my current state of mind and how distracted I am.

In some ways, the benefits are often more noticeable when I’m not practising yoga. When I’m not practising, for whatever reason, I realise why I do practise!

Currently I have a foot in plaster and the enforced inactivity is a challenge. However, being able to practise just 20 minutes of stretches makes me feel better – not only physically but also mentally. And it’s amazing what you can do even with a foot in plaster!

I’m still not sure why I started practising yoga though. Unless I can recall my thoughts of my 17 year old self I’ll probably never know!

[if you want to link to my blog it’s http://alysonyoga.wordpress.com/]

‘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

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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B.K.S Iyengar

BK.S Iyengar a back and breathing success story worth reading! from speaking with people who do this style Mr Iyengar has re-build many backs! 🙂

little windmill

B.K.S. Iyengar – The Ultimate Freedom Yoga [1976] from Praktijk Ourobouros on Vimeo.

Most yogis have heard of or practice Iyengar yoga, created by the late B.K.S Iyengar. My only knowledge of Iyengar himself was a few excerpts from the documentary Enlighten Up, and since then I have only heard more and more fascinating things about him. I took an Iyengar class in Brooklyn at the Yogasana Center. The thing I remember the most is that at one point in a Supta Baddha Konasana, we were using 7 props. At the time I thought that was ridiculous and excessive, but was later informed that Iyengar yoga is largely based on aligning the body in a perfect way.

Here is my personal summary of his life story:

Bellur Krishnamachar Sundararaja, rightfully nicknamed B.K.S, was born dirt poor in an Indian village suffering from health epidemics in 1918…

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This reblog post about a gulf war veteran who never gave up and the transformation that happened when he found the yoga teacher who helped him to believe in himself.

Reading Without Limits

Got Grit? Watch this inspiring video of a veteran who used yoga to not only walk again, but find hope. Teaching the soft skill of grit is essential is important, according to author Paul Tough who profiles KIPP Infinity Charter school in his new book How Children Succeed. I thought that this video would be useful in classrooms who are interested in sharing the power of grit with their students. How would you use the clip?

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Epilepsy Drugs Free – Is It Possible to Fly Without Wings?

One year ago I opened my copy of Epilepsy Action ‘Epilepsy Today’ magazine to read the ‘My Journal’ experience pages. (1)

There before my eyes was the story of a lady so rare that she could be listed as an endangered species next in line to the Dodo.

The story read:

‘The Jury is still out on whether complementary therapies can be effectively used to treat epilepsy. After an initial seizure, Emma Wilkinson decided to try them for herself.’

‘There is very little available information about treating epilepsy naturally, without medication. If you ask your doctor about it, they will probably say that there is no scientific evidence to prove it is possible. Yet, I have done it – through natural health my seizures have stopped. After being diagnosed with epilepsy, I began upon a natural route. I have seen incredible results on my health. It is my hope that by sharing my journey, you may be inspired to look into the treatments that may be used alongside your medication.’(p 27)

Unfortunately although Epilepsy Action have started posting new issues of the magazine online the back issues are not yet up, so I will briefly outline Emma’s story.

Emma started having seizures in 2008 following a gym training session which caused her to develop a migraine and on the way home she had her first seizure.

After initial investigation and a tumour scare, her neurologist told her that a small area of her brain showed up as having died, and was harmless (not a tumour), but caused an increased risk of seizures. This condition was linked to head injury but Emma had never had one.

She had been living with Bulimia for 7 years at the time and was not sure when to tell her neurologist.

She was diagnosed with Primary generalised seizures and epilepsy in 2009, when she was offered anticonvulsant medication.

At this point Emma’s story deviates drastically from the one’s I have read about previously, because she decided to meet a natural nutritionist who listened to her concerns about the side effects of anticonvulsant medication.

She says she was cynical about meeting her nutritionist because she didn’t see how changing her diet could stop her having seizures; her doctors were quite clear there was something wrong with her brain. The nutritionist really listened to her which was the first time she felt this had happened.

Information was gathered about events surrounding her seizures, emotionally and physically, health from birth to present day, Family history of health and illness, her troubled relationship with diet and exercise.

The nutritionist was clear that she could not ‘treat’ epilepsy, but the aim was to improve migraines that seemed to be linked to the condition.

‘She (the nutritionist) explained that when we suppress illness symptoms, our bodies lose the ability to tell where imbalances lie. Her job was to understand those imbalances and teach me to treat them appropriately through gentle detoxification techniques.’(p 29)

Additionally, to help Emma reduce the stress of experiencing epilepsy.

Emma made dietary changes, created a tailored supplement programme using naturopathic techniques from the nutritionist.

Emma says ‘It was the first time since my seizure that I felt so optimistic. Rather than being consigned to a lifetime on drugs, I was given an option of trying a different way. In natural health I was expected to take an active part in my own healing process. I would rather that than passively accept a one-size-fits all drug.’

Emma’s friends and family had reservations but within 6 weeks Emma noticed fewer migraines with loss of vision.

Additionally she felt she had more energy, felt less stressed and craved less exercise, she felt the incentive to continue.

She also enrolled in counselling specifically to help with her bulimic symptoms. She went to psychotherapy. Understanding how her early life had formed her thinking, feeling and behaviour and how it affected her relationship with food. It also helped her come to terms with having epilepsy.

Things got complicated when she started her teacher training. Emma had to rely on public transport where before she could drive. Between the long journeys, work and pressure she became tired, relapsed into her old stress, exercise and bulimia problems and so a year after her first seizure she had another one.

Obviously she was devastated. With a second seizure came further loss of independence and driving. Her consultant said she was at 90% risk of more seizures.

‘After much deliberation, I came to terms with the fact that I was responsible for my own health. Perhaps another seizure was just part of the journey. It told me that something within my body was not right and needed to be addressed, rather than supressed. I could see that, despite having this second seizure, I had come so far with my health. I felt that I owed it to myself to continue. With renewed determination, I moved onto the most important part of my healing process. I didn’t want to simply work towards reducing the likelihood of having another seizure. I was finally prepared to understand what factors, other than diet, were causing them.’

Emma purchased ‘Treating Epilepsy Naturally’ by Patricia Murphy (2).

She started to receive acupuncture and zero balancing therapy in addition to nutritional therapy. She went to a complementary therapist for massage which helped her to manage stress.

Her migraines totally disappeared.

‘My overall health and vitality blossomed. I was experiencing a wonderful state of full health for the first time in ages. These practitioners have also helped support my body through detoxification. They have enabled me to get rid of negative thinking patterns. They have allowed me to understand how my emotions are mapped onto my physical body.’

Emma states that her ‘team’ of therapists helped her to come to the painful realisation that she thought she was unable to love and accept herself unconditionally.

‘All of this work helped me make lots of positive physical and emotional changes. It is only through this understanding of my physical body that I made the biggest achievement of all. I learned to believe in my own self-worth. I can love and respect myself.’

In December 2011 Emma had been seizure free since 2009 and was looking forward to a career in music and was experiencing good physical and emotional health.

Emma finishes by acknowledging the contribution that western medicine has had on epilepsy treatment options.

She goes onto say ‘Western medicine encourages us to believe that doctors hold the power and have the answers that will cure us. It does not encourage us to listen to what our bodies are telling us or try to understand why a seizure occurs. I have learned that full health is my right – but it is also my responsibility.’

Emma ends by saying that natural health offers a totally effective therapy that can be tried alongside medication. She thinks it can work for everyone.

Epilepsy Today have BIG red writing paragraphs underneath about there being no scientific evidence to suggest that any type of complementary treatment is successful in curing epilepsy; AND about using complementary treatment alongside anti-epileptic medication rather than on its own.

It also signposts to www.cnhc.org.uk Complementary and Natural Healthcare Council to find a trained and qualified complementary healthcare practitioner.

Personally there is a lot about Emma’s story that I could relate two, although the circumstances around our epilepsies are completely different.

I would also state that in my experience no anticonvulsant medication has ever ‘cured’ the seizures I experience.

I have also used a large number of complementary therapies on my epilepsy journey, and there is a small army out there who I need to thank.

Unlike Emma I do take anticonvulsant medication. I was very young when my seizures started and so never had the opportunity to choose alternative therapy as a sole treatment from the outset.

I sometimes wonder what it would have been like to try alternative therapy as my main source of treatment, and whether or not the drugs I have taken over the years prevent me from ever finding out.

I don’t know what research there is in relation to neurodevelopment when anticonvulsants are prescribed.

Research into Cannabis shows that this drug does affect neurological development (3), I wouldn’t trust a drug company to honestly state what anticonvulsant medications do to the developing brain, but I still take my medication. (4) I did have really big problems with learning on some medications.

Emma mentions a book by a lady who chose to treat epilepsy naturally; I have found a second in my search for natural treatment see (5).

From this I have concluded that the incidence of completely natural epilepsy treatment is very much like spotting an extremely rare bird, there isn’t a high incidence of sightings.

For me Emma’s story goes to show it is possible in some RARE circumstances to ‘fly without wings’ and go it alone without medication, and for her sharing her story I am grateful.

She might be rare but she is flourishing and that is really something to behold.

Emma BELIEVES she can fly.

Not everyone is so fortunate.

It has served to highlight to me how unique we really all are in our health needs, experiences and treatments.

1)      Epilepsy Action Magazine – Epilepsy Today Issue 110 December 2011 pages 27-30.

http://www.epilepsy.org.uk/news

2)      http://www.amazon.co.uk/Treating-Epilepsy-Naturally-Alternative-Therapies/dp/0658013793

3)      http://www.mcpap.com/pdf/Cannabis.pdf

4)      http://www2.massgeneral.org/childhoodepilepsy/child/index.htm#anticonvulsant

5)      http://books.google.co.uk/books/about/Treating_Epilepsy_Naturally.html?id=lj99VaBHSFcC

Epilepsy and the Circadian Rhythm – Do you dance to the beat of your own drum?

Exercising for many people can be a struggle, because of body image, obesity, lack of time or just lack of interest.

For myself it was seizures that were very much inhibiting movement.

One of the important factors in turning that around was the discovery of the Circadian Rhythm (1) and how it impacted on my hormones and seizure patterns.

I have always had difficulty keeping my alter ego ‘Wareruth’ under wraps. Husbands across the globe will hold testament to the fact that their nearest and dearest turn into unrecognisable creatures, with gnashing teeth that can only be consoled with chocolate bribes when the moon gets fat. For women with epilepsy this may be compounded by the problems that ‘Catamenial’ (2) epilepsy and oestrogen and progesterone fluctuations cause (3).

Since childhood I have always been more likely to have seizures on a monthly basis resulting from hormones, although it is not the reason why I have epilepsy.

I now monitor the situation closely and have found that my seizure pattern has changed over the years. This appears to be in time with the progesterone and oestrogen monthly cycle.

Changes in oestrogen production also occur around pregnancy. In women with epilepsy it also can cause marked changes at menopause as well (4).

Interestingly migraine is also commonly linked to the monthly cycle in some women (5).

Personally I find that pain management becomes a high priority at this time, my body in particular my back and my joints get really sensitive.

After trial and error no medication has controlled this.

On realising this was the case I had to find out how to ‘go with the flow’ sought of speak.

Traditional Chinese Medicine and Ayurveda seemed to be helpful because of their understanding of the endocrine system.

I would be very interested in finding out more about what Ayurveda has to say about epilepsy, the model I am most familiar with is TCM.

TCM (Traditional Chinese Medicine) is based on the Five Element model (6). Within this model holds the key to understanding how seasons in the year and times of the day are attributed to different organs in the body (also known as the Circadium rhythm or biorhythms), and how these impact on the body.

For example the Kidneys are linked to winter and the element Water. The TCM model also incorporates the emotions into this model so the emotion that is attached to the kidneys is fear. The endocrine system is very sensitive to emotions (7),so understanding your emotional make up is a useful tool for managing potentially damaging emotions such as stress which may impact on epilepsy management.

Using methods like yoga – in particular Hatha yoga, ‘yin yoga’ (8) and Qigung (9); have brought me some relief from epilepsy symptoms, this includes meditation exercises of any form.

Yin Yoga, in particular, I found very helpful for acute problems at the wrong time of the month. Yin yoga postures that allow for supported deep relaxation on the floor allow me to feel in a place of safety as well as relax, stretch and release tension. My living room floor looks like a sofa the amount of cushions and blankets I use!

Having spent much of life hitting the floor, feeling safe on it is very reassuring. Letting gravity take its course without going south can be a good thing.

Equally I have found that standing poses in tai chi practice (although nothing in riding horse stance – sitting down into hips with legs wide apart this causes dizziness and nausea for me). Standing in Bear posture with feet shoulder width apart so the Kidney 1 points (10) on both feet are firmly anchored to the ground can also be highly beneficial for hormonal problems (I find).

Sadly wanting to run around and play with my friends is not something that results in good seizure management when my body is at its most sensitive. Neither is activating the sympathetic system. There is a delicate balance between doing too much and too little. I defiantly don’t want to be rolling around or standing on my head at high risk times.

I’m not saying I wrap myself in cotton wool, but from my experience pushing to exercise my body when it’s vulnerable can cause further seizures. If I listen to my body and give it some respect when it needs tender loving care, problems don’t crop up so much.

Throughout the day, one of the most positive changes that has helped in my seizure management was being able to lye down for 20 minutes at lunch times.  This is either to close my eyes and rest or meditate. This meant that I have a chance to de-stress, re-charge and avoid overtiring which caused further seizures.  This has really reduced seizure problems associated with overtiredness and stress.

My Qigung and tai chi instructors (11) are very passionate about ‘lying chi gung’. The hours between 11am and 1pm are known as ‘heart time’ on the Chinese Clock and for this reason it is identified as a good time to rest the heart.

Although this is not an exact science – like the rhythm method of birth control (don’t take risks – I always take my medication), having some understanding of how hormones can be managed through exercise or not has been really helpful to me.

For the best results I find continual practice of yoga or chi gung and tai chi are what is most effective in order to have preventative and long term health benefits.

It is unfortunate that my favourite pastime – calculating how many endorphins are in one cubic centimetre of chocolate Marsbar – is probably not helpful to my hormone balance or blood sugar! 🙂

If you have epilepsy and have any experience of the above I would be very interested in hearing your management strategies and any tips are always welcome!

If you have any experience of complementary or integrative medicine I would also like to hear your thoughts on this as I find it fascinating and would welcome hearing from anyone else’s experience.

I like dancing, finding my own beat has meant that I can enjoy the music of life.

1)       http://www.jcircadianrhythms.com/

2)      http://www.epilepsy.org.uk/info/women/your-periods-menstrual-cycle

3)      http://www.waterstones.com/waterstonesweb/products/michael+r-+trimble/women+and+epilepsy/3569072/

4)      http://professionals.epilepsy.com/page/hormones_menopause.html

5)      http://www.patient.co.uk/health/Migraine-Triggered-by-Periods.htm

6)      http://www.tcmbasics.com/basics_5elements.htm

7)      http://candacepert.com/biography/

8)      http://www.sarahpowers.com/

9)      http://en.wikipedia.org/wiki/Qigong

10)   http://www.acupuncture.com/education/points/kidney/kid1.htm

11)   http://www.uktqf.co.uk/

CHANGE – The Day My World Got Turned Upside Down! (in a good way)

At approximately 8 am this morning a minor miracle happened (no I didn’t give birth)…

…I actually got my legs over my head in an arm balance (called peacock!).

Actually, what happened was 2 yoga teachers saw me struggling because I have NO proprioception of my legs leaving the ground WHATSOEVER and they lifted my legs over my head towards the wall.

It’s amazing how when your head is underneath your legs it feels like you’re in free fall!!

Despite support the second that they got near the wall I starting squealing and they had to lift me down again, BUT for me this was BIG!!

The last time I got my legs in the air for a handstand was when I was 12.

I was in a gym class and I hadn’t learned to roll from a handstand safely, so I just went SPLAT! On my back and winded myself really badly.

I haven’t been able to go up (side down) in the world since!

I was totally put off and always stiffen up and my breathing goes out of the window!

Obviously, it’s probably going to be sometime before I can do this by my-self, but it goes to show how – I can change! 🙂

So happy! 🙂

Some people can travel the world, but I am really more than happy to travel all around my body. I feel so lucky that I have a chance to learn these things I always wanted to do.

Not a Peacock yet, but not Advanced Hedgehog Pose either!!!

https://epilepsymeandneurology.wordpress.com/2011/12/31/epilepsy-advanced-hedgehog-pose/

Thank you Lesley and Sue! (my yoga teachers)

And Alyson http://alysonyoga.wordpress.com/ nearly forgot you not there today!