Neurological Rock Stars 4 – Dai Greene Captain GB Athletics Team

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

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

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

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

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

Really impressive and inspiring story!

Ode to Homeopathy

 

My meditation,no more medication

Food for thought

Not good for contemplation,

Is life not hard enough without demotivation?

 

Difficult to see through fog

A path is hard to find,

The mind becomes a quagmire

I am lost and I am blind.

 

Challenged pharmaceutically

Is blood thicker than water?

The memory of what went before

Impressed upon a daughter

 

Given up biology

A need to go much smaller,

The head confined into a cell

It takes time to walk taller.

 

Where did I go wrong?

Prison is not the place to dwell,

For ignorance is only bliss

When not in living hell.

 

Physics shone like a blinding light

For the answer was inside,

My knight in shining armour

Now there’s no place left to hide.

 

Mind and body reunited

A homeopath was my guide

The soul is not a cell I feel

As a whole I now reside.

 

Thank you http://mariangray.co.uk/  I’v been accepted onto Acupucture course – you did a good job hunny, hope you enjoy seeing the world.

 

Guest Post – Who Am I?

Today I am very honoured to have a guest blog post from http://rosewinelover.com/

Thank-for sharing your experiences!

First of all, I would like to thank Epilepsy Me And Neurology for inviting me to guest blog here. This has added a whole new aspect to my line of “work” – to advocate for epilepsy  from my living room, reaching a target audience all over the world.

So, who am I? Allow me to introduce myself…

My name is Gemma. I’m a thirty-nine year old housewife, married to a wonderful man who I have been with for five years now. I have a profoundly autistic son from a previous marriage, who lives with a foster family because I am not strong enough – physically or mentally – to be able to handle his behaviours without significant harm coming to others and myself. I do love him fiercly though, and so my husband and I visit him as often as we can. Continue reading

Art House Meath Epilepsy Charity Blog

http://thearthousemeath.blogspot.co.uk/p/about.html

My sister found this wonderful charity blog which is a charity that specialise in making, selling and celebrating the art work of people with with learning difficulties and severe epilepsy.

There are prints and giftcards for sale at the links provided at the blogspot address link above.

Arthouse Meath

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/]

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…

View original post 165 more words

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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Insight into Stroke – Jill Bolte Taylor Ph.D.

S = SPEECH, or any problems with language

T = TINGLING, or any numbness in the body

R = REMEMBER, or any problems with memory

O =OFF BALANCE, problems with coordination

K = KILLER HEADACHE

E = EYES, or any problems with vision

Stoke is a medical emergency call 911 US or 999 UK

I first saw Jill Bolte Taylor on TED talks. I was captivated by her moving insight into how she as a neuroanatomist perceived the experience of having a stoke. How it had given her access to the right side of her brain.

Last week I was in a book shop and saw her book ‘My stroke of insight, A brain scientists personal journey’(1). I saw her name on the cover and immediately realising it was written by this lady from the TED talk I purchased the book.

There is something very reassuring about reading about other people’s brain experiences. It really helps to make sense of mine.

Having a person with intimate knowledge of the architecture of the mind, talk step by step through what parts stop working and how the symptoms are interpreted is very helpful.  It has assisted in my own understanding of what could possibly be causing changes in awareness and ability.

The most important part of the book for anyone to read and understand is about how she recovered.

Jill became a neuroscientist because her brother had schizophrenia. She wanted to understand why and I think also to see if there was a cure.

At 37 she had a stroke.

It took her 8 years to get back to where she was pre- stroke, the only brain cells that were completely destroyed by the stroke were her mathematics cells. Despite this she had to re-learn everything.

There were several parts of her recovery that resonated highly with me.

First, she emphasised how important it is to honour the body’s need to sleep and just sleep when she needs to.

Second, that one of her greatest lessons was how to feel the physical component of emotion.

Jill was experiencing sensory overload after her stoke. Everything was overwhelming, light, noise , other people.

Because Jill was recovering she was learning how to deal with these emotions for the first time and had to learn to choose how to deal with them. If she didn’t like the way it felt she chose not to let it back into her neural loops. She says paying attention to what emotions feel like has completely shaped her recovery. She realised she was in charge of how she chose to perceive her experience. Little Windmill posted a really good story about Alexander the great and a yogi and anger which illustrates this; http://littlewindmillyoga.com/2012/12/05/alexander-the-great-meets-a-yogi/

In relation to medication, post- surgery she had to take Dilantin for 2 years afterwards in case she had a seizure. Her biggest complaint about this was that she didn’t know what it felt like to be ‘me’ anymore and says that she is more sensitive to why some people would choose insanity over the side effects of antipsychotic medications.

Physically, she talks about the importance of exercising her muscle groups, walking , massage and acupuncture treatment which helped her to identify her physical boundaries. One of the side effects of her stroke was that she felt ‘fluid’ and very much a part of the universe.

The part of this story that is most important is that Jill shows you can recover from a stroke.

It is not necessary to experience a stroke to find inner peace. We can choose left or right brain talk, and although she acknowledges that in cases of serious mental illness this may not be possible, I am very much behind her on her mission that choosing inner peace is an idea worth spreading.

http://www.ted.com/talks/jill_bolte_taylor_s_powerful_stroke_of_insight.html

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

 

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

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!