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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BIG EQUALITY

‘Where’s your job you scrounger?’

I filled in all my forms,

The ones that said disabled,

The ones that said I’m worn.

 

I feel fatigue and lethargy from trailing JCP,

The department that plays ‘Vivaldi’ constantly at me.

I phoned up nearly thrice per day to say that I’m still ill,

The cancer in society wants me to foot the bill.

 

My debt to the economy,

The banks and to the lenders,

One more stat on the balance of

Parliamentary spenders.

 

Does it matter that I’m broken,

That is all you see?

What employer do you really think,

Will want to employ me?

 

I tried the Big Society

I tried to volunteer,

‘Sorry love but we don’t want

Your sort round ‘ere.’

 

Out of work and out of place,

Not the first time it’s been bad

You can’t miss the things you dreamed of

The things you never had.

 

Take pills for all these ills,

So that I can numb the pain,

That society doesn’t want me

That I may never work again.

 

Give them the satisfaction

Of driving me to drink

Another excuse for the recession

Tea totalling on the brink.

 

Do you know who I am?

Do you even care?

Not really, Not in the slightest,

The books are balanced so it’s fair.

 

Loss of consciousness is infectious

Computer says no! ATOS Who?

See I said it was infectious

The computers got it two!

 

Big Society, I know you’re out there

And that Cameron thinks your ace

But, would you know equality

If it smacked you in the face?

 

http://www.independent.co.uk/news/uk/politics/its-a-stunt-iain-duncan-smith-dismisses-demands-to-live-on-53-a-week-8556985.html

 

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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GREAT parkinson’s neuro recovery blog!

Kaitlyn Roland

This week kicked off brain awareness week… and the people over at sharpbrains.com debunked 10 myths around brain fitness… here are my 5 favourites!

Myth 1. Genes deter­mine the fate of our brains.

Fact: Life­long brain plas­tic­ity means that our lifestyles and behav­iors play a sig­nif­i­cant role in how our brains (and there­fore our minds) phys­i­cally evolve.

(we have some aspect of control and can create new neural pathways – say with exercise for brain change!)


Myth 3. Med­ica­tion is the main hope for cog­ni­tive health and enhance­ment.
Fact: Non-invasive inter­ven­tions can have com­pa­ra­ble and more durable ben­e­fits, and are also free of side effects.

(drug side effects are not necessary, but side effects – like endorphins – from exercise are encouraged!)

Myth 4. There’s noth­ing we can do to beat Alzheimer’s dis­ease and cog­ni­tive decline.
Fact: While noth­ing has been shown to pre­vent the pathol­ogy of Alzheimer ’s…

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Advice call after epilepsy drug Epilim study – Epilepsy Care In Wales BBC News

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

http://www.bbc.co.uk/news/uk-england-london-21523434 London reporting on Pregnant women ‘unaware’ of epilepsy drug risks 25th February 2013, BBC Wales are now reporting:

http://www.bbc.co.uk/news/health-12242857

“Campaigner Nicole Crosby-McKenna, from Epilepsy Action, wants the Welsh government to review the way information is conveyed to pregnant patients in Wales.

She said: “We would like to know, if they haven’t got access to an epilepsy specialist nurse, who is giving the women that information? Are the GPs passing the information on to women? And also, do the GPs have enough specialist knowledge to accurately give them pre-conception counselling?”

http://www.bbc.co.uk/news/uk-wales-21733153

See BBC news links for full details.

Epilepsy, the National Health Service and the post code lottery – A Tale of Two, or Three or Many Postcodes

I have had some time to think about writing this post. It was sparked by my fellow bloggers post about the loss of her epilepsy nurse (1).

I do not have an epilepsy nurse. I had to put up quite a fight to keep my consultant neurologist.

First I would like to say thank you to my Consultant Neurologist and to my GP Doctors medical practice. I would like to say thank-you, you are all great and you are all doing the best you can in what appears to be increasingly difficult conditions in relation to funding health services in the UK.

But in relation to access to health care for epilepsy, this is my story.

As a child with epilepsy I saw my consultant pediatrician and was assigned to him until my 18th year when I finally became an adult under UK health provision.

He tended to my health care needs and oversaw my prescription medication. He was a lovely man and I was sad to hear he has now passed away.

I encountered the biggest problems with seizures whilst I was at college in my late teens and early 20’s. I had moved away from my home hospital in Wales and after a couple of years ended up in England.

There did not seem to be any plan for who would oversee my medication and epilepsy care. I think on reflection that this was at a time when there were no National Institute of Clinical Excellence (NICE) guidelines for epilepsy care (2)(3) in the UK. Through organisations like Epilepsy Action (4) awareness of the importance of epilepsy care has also grown amongst health care professionals.

My GP (General Practitioner) in England was in charge of my medication and decided to change it. The change was made (as it always is) in my best interests. When I had a significant deterioration in seizure control because of the new medication it took 2 years for me to be assigned to a Consultant Neurologist in a different county in England.

England has different health care arrangements by different County’s much like Wales, but these shift depending on where the specialist services are located.

The consultant who I was assigned to was an expert in his field, but he had a LOT of patients and not a lot of time for me. This experience was not a positive one.

I moved from one county in England to another county, and despite significant problems with seizures there really wasn’t much help from my then neurologist because he just gave me more and more medication which didn’t work.

It is difficult not to want to apportion blame, but I have come to the conclusion that when things go wrong rather than being one person’s fault it is in fact a huge system failure that by and large results in poor health care.

I think that medication is seen as the cheapest option and therefore, for a lot of people the only one.

Finally after some years, my GP decided to take action and referred me to a new Neurologist. This is the one I see to this day. I hold him in high esteem and think he is very thorough. He does listen to me, even though we have differences in opinion.

The problem with this was we had to start from scratch.

He left no stone unturned in the search for my brain squiggles (EEG), and although it took years for him to confirm that I am indeed epileptic, at least I now have closure on this. It made me highly anxious that there may have been some possibility that I could have a brain tumour, scar or be so deeply troubled that I might be able to lose consciousness and go blue and have convulsions all by myself. Then there were the lights, headaches, myoclonic jerks and medication side effects as well as partial seizures.

I could access the epilepsy nurse under my Neurological Consultant in England.

I will never be able to thank my neurologist enough for removing most of my medication.

I can now think.

But it wasn’t over there.

I am now back in Wales and continued to see my neurologist in England without any problems for several years. I did not have an epilepsy nurse, but that didn’t matter so much because I was assigned to a specialist neurologist.

Then the local health board was re-arranged to create a different funding structure a few years ago.

The county where I live does not have a Specialist Consultant Neurologist for Epilepsy or Epilepsy Nurse.

One day I got a letter from the hospital in England saying that my health board were no longer going to pay for my neurological consultations.

This decision had been taken by the local health board without assigning me to a Consultant Epilepsy Neurologist in Wales, or Consulting my General Practitioner or my consultant neurologist in England.

I was absolutely furious. I made a complaint with the help of an NHS Advocate.

I was not able to see my consultant for a year.

It took the health board that long to work out that they would have to pay for me to see a Consultant Neurologist in Wales if they did not continue to fund my trips to England.

As part of my complaint I asked the health board to tell me what they planned to do about access to epilepsy services in Wales.

Then there was a change in Government.

I am now deeply troubled by the current government’s ideas about private health care. (5)(6)

My health has suffered because there was not a joined up service. Under the new proposals, the NHS would be more open to private companies and further fragmentation.

I have seen how private companies and fragmentation has negatively affected the welfare state in Britain.

I find it deeply troubling that more and more people not just with epilepsy but with other health problems will fall through the gaps or face charges for care when there is no money.

If your health is poor you can’t work.

I feel like I have to do all the health care work for myself.

I still don’t have an epilepsy nurse.

In comparison to some countries I obviously feel grateful to have health care at all.

This is not everyone’s experience of epilepsy care in Britain, but it is mine.

1) http://rosewinelover.com/2013/02/25/you-wont-be-seeing-frank-any-more-hes-no-longer-here/

2)http://publications.nice.org.uk/the-epilepsies-the-diagnosis-and-management-of-the-epilepsies-in-adults-and-children-in-primary-and-cg137

3)http://publications.nice.org.uk/the-epilepsies-the-diagnosis-and-management-of-the-epilepsies-in-adults-and-children-in-primary-and-cg137/key-priorities-for-implementation#management

4) Epilepsy Action http://www.epilepsy.org.uk/

5) http://www.bbc.co.uk/news/health-21649307

6) http://www.bbc.co.uk/news/health-21703667

Neurological Rock Stars 3 – Epilepsy Therapy Project

http://www.epilepsy.com/newsletter/feb13/cc_dietary_therapy?utm_source=Epilepsy+Therapy+Project&utm_campaign=8077df411a-Epilepsy_News_2_27_13&utm_medium=email

Whether or not you are new to epilepsy The Epilepsy Therapy Project is a great resource which provides an all round look at epilepsy, medication, mind, body and diet (even spirit 🙂 although possibly not the alcoholic type which will interfere with medications ).

In terms of information resources the latest newsletter focuses heavily on epilepsy diet and so I have posted the article by Patricia Osborne Shafer RN, MN Resource Specialist, epilepsy.com. It is a very good article about Modified Atkins Diet for epilepsy as a successful story of an alternative to drug based treatment or in conjunction with medication.

Additionally, in the same Newsletter is an equally valid an interesting post on Modified Atkins Diet in Children:

http://www.epilepsy.com/newsletter/feb13/modified_atkins_dre?utm_source=Epilepsy+Therapy+Project&utm_campaign=8077df411a-Epilepsy_News_2_27_13&utm_medium=email

Similar therapies are the Ketogenic diet resources to be found at these links:

http://www.google.com/cse?cx=005246551797440562563:wb-yegiey0w&q=ketogenic%20diet%20epilepsy&oq=keto&gs_l=partner.3.0.0l10j34.688606.689292.0.692368.4.4.0.0.0.0.97.337.4.4.0.gsnos%2Cn%3D13.1.0.0.2449j3313169j5..1ac.1.Q7dWzb3EYz4#gsc.tab=0&gsc.q=ketogenic%20diet%20epilepsy&gsc.page=1

You can sign up for the Epilepsy Therapy Project newsletter to be sent straight to your email account.

The information on diet for epilepsy may shed light on why if you like me are epileptic you may have difficulty going to straight vegetarian or vegan diet (although if you have experience of success with either of these and epilepsy I would love to hear from you).

http://www.epilepsy.org.uk/info Epilepsy Action Provide information and advice about epilepsy in the UK

THANK YOU ONCE AGAIN Epilepsy Therapy Project!

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/