Wellness Warrior meets Wellness Warrior – Jess Ainscough interviews Lissa Rankin

http://www.thewellnesswarrior.com.au/2013/05/mind-over-medicine-my-interview-with-dr-lissa-rankin/

Two of my favourite wellness warriors get together to discuss Lissa Rankin’s new book ‘Mind over Medicine’.

Both of these ladies are very much on my page when it comes to health.

This interview is well worth listening to.

Important points raised during the interview are;
What does your body need to heal? What prescription does your body need you to prescribe for yourself? What would you do if you could do anything you wanted, to make yourself better?

– Leave your abusive relationship?
– Leave your horrible job?
– Go to college?
– Move countries?
– Get married?
– Do something you always wanted to do?
– Get a new job with a better employer? 🙂

Lissa’s idea about letting the patient write the prescription for themselves is really liberating.

In the context of epilepsy research I think it is relevant to the epilepsy research project what treatment would you prefer?:

http://www.epilepsy.org.uk/research/take-part/projects-you-can-take-part-in/patient-preferences-treatment-options

https://epilepsymeandneurology.wordpress.com/2013/05/20/national-epilepsy-week-19th-may-23rd-may-2013-what-treatment-do-you-prefer/

Nobody is the same, so everyone will need different treatment.

Healing is not neceserraly curing.

The moral of the story – Turn off your stress response, it could save your life.

I love epigenetics!

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.

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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worrying actions on generic drug distribution from Ireland.

Novus Medica

Generic medicines would only be allowed to be supplied to patients in cases where they provided the same quality and safety as the drugs they were substituting, said junior health minister Alex White.  “This [legislation] is not a charter for cheap drugs,” said Mr White. He urged all sides to place trust and confidence in the Irish Medicines Board, which will have responsibility for authorising generic medicines that can be used as substitutes for patent drugs. (Examiner) >

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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!

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!

fire in the blood.

Make Wealth History

This week has seen some excitement over the possibility of the first case of someone being ‘cured’ of HIV, generating a lot of hope and expectation for future treatments. This week has also seen a little attention on the story of HIV drugs in Africa, which is a much darker story. It’s been told for the first time in a new documentary, Fire in the Blood, which is currently screening in Britain.

It’s the work of Indian-Irish historian and filmmaker Dylan Mohan Gray, and it tells the story of how the pharmaceutical companies blocked the sale of cheap anti-retroviral drugs in Africa. It protected their profits, but caused an estimated 10 million unnecessary deaths. That’s a crazy number of deaths that could have been avoided. You would need to add the Holocaust and Stalin’s gulags together to match it. It’s little wonder Gray refers to it as ‘the…

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Britons beware of changes to the NHS. A Time Magazine article on the problems with private health care accross the pond.

Health & Family

Corrections Appended: February 26, 2013

1. Routine Care, Unforgettable Bills
When Sean Recchi, a 42-year-old from Lancaster, Ohio, was told last March that he had non-Hodgkin’s lymphoma, his wife Stephanie knew she had to get him to MD Anderson Cancer Center in Houston. Stephanie’s father had been treated there 10 years earlier, and she and her family credited the doctors and nurses at MD Anderson with extending his life by at least eight years.

Because Stephanie and her husband had recently started their own small technology business, they were unable to buy comprehensive health insurance. For $469 a month, or about 20% of their income, they had been able to get only a policy that covered just $2,000 per day of any hospital costs. “We don’t take that kind of discount insurance,” said the woman at MD Anderson when Stephanie called to make an appointment for Sean.

Stephanie was then…

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