Young Epilepsy and Epilepsy Action ‘My Journal’ Epilepsy Educators

Some time ago I was very pleased to read this post in epilepsy action about epilepsy in a rural community.

Around the same time I also read about Olivia and her experience of absence seizures. Here are the details for your information.

Hats off to Olivia Solvati fronting the Young Epilepsy campaign to raise awareness in Educators about the symptoms of Epilepsy. More great work being done by the BBC reporting and raising awareness and education.

Olivia talks about her experience of absence seizures which can be particularly hard to spot and very disruptive to eduction if they aren’t recognised.

See the link here for full article ‘Epilepsy: ‘I’m not daydreaming Miss, I’m having a seizure’

https://www.bbc.co.uk/news/education-46099603

Also, was very happy to see Epilepsy Action published ‘My journal’ written by Christena writing about what it is like to live with epilepsy in a rural area. Christena is passionate about supporting people with epilepsy and educating about what it is. She writes about her experience and research as well as her role in the local Epilepsy Action group in this article.

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Support for new mothers with epilepsy and mental health problems

https://www.bbc.co.uk/news/av/health-46064807/maternal-suicide-the-main-cause-of-death-in-new-mums

I saw the story of Bronagh in the BBC news. When I watched it I cried.

Bronagh had epilepsy and after she became a new mum at the age of 21 she became depressed.

Having a baby can put any woman at risk of mental health problems. According to NHS.co.uk 1 in 10 women experience postnatal depression, so GP’s need to be on the look out. Sleep deprivation and anxiety also cause problems. PTSD, OCD and psychosis can also be a problem postnatally. Only recently Adele shared the story of her friends struggle with postnatal psychosis. (1)

Bronagh’s Mum talks about how Bronagh was told she couldn’t be left alone with her baby because of her epilepsy, because she was a danger to her baby. Because of this Bronagh wasn’t comfortable lifting or touching her baby.

This is tragic.

When I read this it made me very angry. Women with epilepsy may need extra support after having a baby, but to be made to feel like she was a bad mother and couldn’t touch or look after her baby is a completely inaccurate and destructive impression to give anyone with epilepsy, or any new mother.

Women with epilepsy can and do have babies all the time. Women with epilepsy are good mothers. I suspect women with epilepsy feel like they have to be 1000 times better than other mothers, because-personally I have found women with a disability feel continuously under scrutiny.

Epilepsy action provides information to women in the UK about pregnancy and how to care for yourself and a new baby. There is no reason why a woman can’t have or hold her baby, or enjoy being a mother. (2) Some things like washing baby are better done when your partner is at home for support and safety, so it must have been especially difficult and frightening for Bronagh to have so much negative reinforcement about her ability as a mum.

Bronagh asked for help from health care professionals postnatally. She didn’t receive the help she needed.

Sadly Bronagh took her own life.

Her story raises the importance of perinatal Care not just in epilepsy but in mental health. In the UK there are only 131 perinatal beds. There are none in Northern Ireland or Wales. This has to change.

As a woman with epilepsy myself I am no stranger to the problems we face in society such as prejudice, ignorance and lack of education.

Unfortunately lack of healthcare is an area which can only be improved by better government funded NHS facilities. I hope the money that has been promised by the government does go into improving this area of health care.

Having a baby should be the beginning of a new life not the end of one.

(1) https://www.theguardian.com/society/2018/aug/15/adele-shares-story-of-friends-postpartum-psychosis-to-help-new-mothers?CMP=Share_iOSApp_Other

(2) https://www.epilepsy.org.uk/info/daily-life/having-baby/after-the-birth

Time To Change

‘Everybody wants to get better but nobody wants to change.’
From
http://www.amazon.com/Nourishing-Destiny-Tradition-Chinese-Medicine/dp/0966991605

I was in class a week ago, and the teacher gave us all this quote at the end of the lesson.

I felt like I had come home.

There is a time to be active and a time to be still in everybody’s life;There is a time to feel and time to sleep.

Now is the time to change.

I have a lot of learning to do, and so for now I am am taking a break from posting to concentrate on being still and undertaking some major restructuring as well as study.
I may drop by from time to time with articles, but for now, my friends, I will be reading your stories, your thoughts, your feelings, and I will be wishing you well (and commenting from time to time).

I am going to change.

When I resurface, i hope to be different, and better and CHANGED. 🙂

For now I am happily per-suing my dreams.

Keep well, until next time

I hope you are per-suing your dreams as well.

Investigating the root causes of the global health crisis: Paul Farmer on the TED Book “The Upstream Doctors”

just in case you haven’t see this already – it looks fascinating.

TED Blog

By Paul Farmer

At the end of almost a decade spent in teaching hospitals and clinics, most (we hope all) physicians have honed their clinical acumen by focusing on the care of the patient who is right in front of them. Perhaps this is as it should be: as patients, we don’t want our doctors (or nurses or social workers) distracted by “outside” considerations such as the suffering or concerns of other patients not there in the exam room or, heaven forfend, by abstractions such as the extra-personal social forces that place people in harm’s way. We want the doctor focused on us, by bringing expertise and attention to our specific “illness episode” and even to our minor aches and pains. That’s what we want: laser-like focus, to use another term from the medical profession, on our own “chief complaint.”

Or do we? What if most of our aches and…

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TCM Traditional Chinese Medicine

A brief introduction to Traditional Chinese Medicine – otherwise known as epigenetics to the west. lovely blog two.

Endless Light and Love

TCM. Traditional Chinese Medicine in China.

china-tcm-man2

Traditional Chinese medical education has a history going back thousands of years, and it has kept abreast of the development of TCM culture and Chinese civilization, which is rarely seen in the world medical history. Numerous practitioners have been trained and they have offered much in medical and health care for the Chinese people, and promoted development of traditional Chinese medicine. So far, it occupies an important place in national medical education.

A Brief History of the TCM Education System in China.
The ancient medical examination system took shape during the Zhou Dynasty fro 1100-256 B.C. Laid down In the Zhou Li Yi Shi (The Chief Practitioners Book of Rites) the requirements for TCM chief practitioners were recorded. Their compensation depended upon the response to their treatment, e.g. those whose patients responded well to their treatment without any failiure received the highest level of…

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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!

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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What The Bleep Is Neurofeedback You Ask?

more insights into Neurofeedback, not just for robots!

WELL CALL ME CRAZY

 

I have been wanting…..okay attempting…..to write a post about the internship I was doing in neurotherapy. Specifically, a post that would explain what neurofeedback is and its use in treating brain disorders of any kind. The post would be easy to understand, comprehensive without being overwhelming, with a bit of humor thrown in for good measure. I was on draft number four of writing said post when a peer emailed me the article below and I thought, “Wow,this guy just took the words right out of my mouth…..and did it better than what I was imagining!” So, of course I have to share it with all of you. I hope you enjoy it as much as I did and that it spurs you on to learn more and share with others.

 

 

Neurofeedback: Alternative Health Care for Robots?

 

by John Anderson, M.A

 
Many people interested in…

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