6th January 2018 – Dear Neurologist

I am still on the ketogenic diet and my blogs will be published by the Epilepsy Society in due course.  In the meantime I thought I would share with you a letter I wrote to a neurologist:

Dear Neurologist

I know that you have trained very hard for a long time to get to your position and I want to thank you for the good work that you have done to improve the quality of lives of so many people.  However, sometimes when I come out of a consultation with you, I do not think that you have truly met me – Sharon Ross – I think that you have met my EEG or my MRI, but you haven’t met Sharon Ross, mother of-three, struggling with life, clutching at straws but still with Hope.  Therefore, I am writing with two suggestions as to how you, and others in your profession, might improve your professional standards and thereby increase your ability to help me and the hundreds of thousands of other people with epilepsy[1].

You obviously have seen how people with epilepsy behave in a hospital ward and in a consultation room and you also are up-to-date with medical science’s current understanding of the brain.  However, I believe that to treat a person you also need to know a person. So my first suggestion is that you get to know the group of patients that you serve.  You could do this in one of two ways.  One way could be to hang out with someone with epilepsy for a day, for a week or on an ad hoc basis. Then you could see for yourself how their children react when they have a seizure or how not having a driving licence has meant that they have had to retrain in a profession – moving away from the dreams they had as a child or how the anti-epileptic medication (AEDs – see point 2 below) really seems to be screwing with their head.

Another way to get to know your patients would be to join some epilepsy Facebook groups, read what people have written, but do not comment (NB As a member of some of these groups I would be quite happy for you to become a member, but some groups may not allow you to join) . In these Facebook groups you will find a range of comments from ‘I applied for benefits, appealed and still didn’t get it but I can’t work and I really don’t know how I will carry on’ to ‘I’ve had two brain surgeries and I’m still getting seizures’ and ‘I’ve found it difficult to have a relationship because when I have a seizure, they get scared and walk away’.  You will also find signs of Hope on these groups – pictures of children holding up signs saying ‘one year seizure free’, ‘two months seizure free’; 100s of responses for requests for prayers as a loved one goes into surgery and lots of ideas and suggestions and messages of support to those that are going through a difficult time from those that have been there and done it.

Getting to know a person with epilepsy or reading through comments on social media groups might give you a different perspective of what epilepsy is about  and also a bigger sense of satisfaction when you manage to find a good treatment for a patient. There are of course, others in your profession who show more empathy and understanding, I am afraid to say, than you do.  However, I do believe that rather than go to yet another conference, or write another research paper they, like you, would benefit from increasing their understanding of what it is like to live with epilepsy in the ways that I have mentioned.

And my second suggestion as to how you could improve your professional standards is that you could, like the pharmaceutical industry that serves us, be a little more honest about the side effects of AEDs. The side effects listed on a typical packet of AEDs sound pretty innocuous – ‘dizziness’, ‘fatigue’, ‘acne’, ‘unwanted hair growth’ and one or two might say things like ‘behavioural changes’ or ‘memory problems’.  However it is well known that most, if not all, AEDs can have cognitive side effects such as ‘problems with thinking, remembering, paying attention or concentrating, finding the right words, or other symptoms[2]’.  I suspect that the fact that these side effects aren’t mentioned on most packets of AEDs is not because anyone has acted illegally or in an underhand way – it’s just that it’s difficult for a patient to have the self-awareness to say exactly what cognitive side effects they are having and therefore they don’t report it. However we do know that as ‘seizure medicines lower the excitability of nerve cells in the brain, they can also affect normal activity’[3] and even if the precise side effects of each medication aren’t known the general rule is that AEDs can cause cognitive side effects.  Therefore, it would be wise of neurologists when discussing medications with patients and their families to mention this so that they can weigh up the risks and benefits before taking them (and indeed family members should look out for them). Without this discussion some patients could not be aware of the side effects of the drugs that they are taking and their quality of life, measured not in numbers of seizures, but in other more qualitative measures, could reduce. Therefore to increase professional standards neurologists should be having these discussions with patients.

I thank you for taking the time to read this letter and I wish you much luck in your future endeavours.  If you would like to discuss anything I have raised in my letter, please be in touch.

 

With kind regards

 

Sharon Ross

 

NB I haven’t sent the letter, indeed it was not directed at one particular neurologist – but maybe I should!

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[1] Or to be more precise,  as you well know, 600,000 people in the UK with epilepsy and 50 million people worldwide.

[2] See https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/side-effects

[3] Ibid

22nd November 2017 – Free Will

I am still doing the ketogenic diet and my blogs will be published by the Epilepsy Society (although there is a time lag) but today I would like to discuss again with you free will, because it is something that I think about a lot.

Sometimes, it seems to me that I have no free will.  I know theoretically that I should make sure that all my children’s clothes are clean and ready the night before school.  I know it now, as I type, but I rarely do it – I forget. My desire to do something and the ability to act upon it seems to be juxtaposed.  And so it seems with this and a million other examples, my free will has been yanked out of me and thus something fundamentally human has been taken away.

Yet somehow, given my circumstances, on the face of it, I have made wise decisions and my life is turning out well.  I married a man that I love, we have three beautiful children, live in a nice house and I have some very special friends.  I also made a big decision to become an observant Jew and in doing so have made, over time, a radical shift in the way I go about life.

‘How can this be?’, I ask myself – how can I on the face of it be making good decisions, when on the inside it often doesn’t feel like I am making any decisions at all. And then I ask myself – what about other people with neurological disorders like dementia, schizophrenia, bipolar, ADHD and epilepsy like me – do they have free will?  We are taught that the reason we are different from animals is because we have ‘free will’ but because my free will is limited does that mean that I, and others with similar issues, are not so human after all.

After doing a bit of thinking and after trying to read up the subject and then not taking it all in, I have come to the conclusion that in some very odd way, I still do have free will and I am very much human and that therefore others with neurological conditions have free will as well.  I have come to understand that there are three types of knowledge – intelligence, cognition and intuition/ the soul (this very roughly follows the Jewish idea that there are three types of knowledge – chochmah, daat and binah[1]). Intelligence is thinking conceptually – some people have it in abundance and can argue theories and ideas on all sorts of spurious ideas – and have less of it. You do need some to live independently and make decisions about the way you live life but you are still human without it and thus you have free will.

And then there is cognition – this is the bit that I struggle with, as do some other people with neurological disorders. To function independently you need to plan, to process, to remember and crucially to make decisions. For whatever reason schools put more of an emphasis on intelligence than cognition, but as I have tried to illustrate in my blogs if you have intelligence but are limited in some way with cognition life can be hard. But to be human you do not need to have cognition or intelligence.  You still breathe.

However, what every human definitely has is a soul, a nefesh – even those people who have a whole myriad of learning difficulties have a nefesh – no human is born without one. I believe that you love someone not because you are attracted to their intelligence or their cognition (although it might help) but because of something much deeper – you have some deep attachment to their nefesh, their soul.  It can’t be explained and it isn’t necessarily logical.  I have a nefesh.  And even if my cognitive free will has somehow been dislodged my nefesh free will has not and I use this part of my brain to make my decisions and so far it has done quite well, even if at times it has felt if something is absent. And because this part of my brain is working just fine, I am very much human.

Therefore, in conclusion, I do have free will – although its shape might be different from others because it is based on my nefesh rather than cognition. However, I will fight on eating virgin oil, flaxseed and cream in abundance on the ketogenic diet trying to obtain the cognitive free will that I desire and I will let you know what happens.

[1] Very loosely daat is cognition and chochmah is intelligence  and binah is intuition/ nefesh please see http://www.chabad.org/library/article_cdo/aid/80899/jewish/Chochmah-Binah-and-Daas.htm

 

16th October 2017 – Ketogenic diary 1

To those of you who have been redirected from the epilepsy.org.uk website you might be interested in some of my other blogs on my long journey towards the ketogenic diet including:

a blog about my stay on an epilepsy diagnosis unit

https://sharonrossblog.wordpress.com/2016/07/01/july-1st-2016-epilepsy-and-me/

and my thoughts about epilepsy

https://sharonrossblog.wordpress.com/2017/06/25/25th-june-2017-epilepsy-not-just-a-seizure-disorder/

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Sharon Ross, a keen blogger, is about to start the ketogenic diet.  In this blog she recaps over her story so far and discusses her first appointment with her nutritionist and neurologist.

My name is Sharon Ross and I have an unconventional type of epilepsy and I am going to start an unconventional type of l treatment for it.  I have frontal lobe epilepsy – sometimes it seems like I have dementia and my neuropsychologist said I have similar symptoms to someone with traumatic brain injury or who has suffered a stroke. My memory, processing, decision making and problem solving are poor. I used to look at a weather forecast and wonder why anyone was interested in them – lots of numbers and pictures in a graph seemed dull.   But now I realise that people take an interest because they need to decide what clothes they should wear or how the weather will impact on their day.  However, I can’t translate the information on the chart into what it means for me because my mind is a constant fog. Thus frontal lobe epilepsy is not a pleasant condition to live with and I want, indeed need, to find a cure. The brain fog is caused by irregular epileptiform activity and although my medication is treating the atypical seizures that I was having the epileptiform activity is still occurring.  I have tried lots of medications to control it but they haven’t helped so in the next few weeks I am fortunate enough to be starting the ketogenic diet and I am writing a blog so that you can join me along my journey.

The ketogenic diet is a high-fat, adequate-protein, low-carbohydrate diet that is a recognised treatment for epilepsy. Much of the data regarding its efficacy comes from studies in children, but there is now a growing body of evidence for its use with adults. The exact mechanism of the ketogenic diet remains uncertain.  The diet provides fat as an alternative fuel source for the body, producing metabolites called ketones and other associated biochemical changes can reduce seizures and control epileptiform activity..

Before I went to my first appointment at the hospital I already knew quite a bit about the diet and how I thought it would impact upon me.  I am married with three young children, one of whom loves foods high in carbohydrates, especially jacket potatoes. The ketogenic diet is not a healthy one and my family cannot go on it with me so I know that managing my family’s eating requirements and my own at the same time is going to be tricky. I live about an hour away from the hospital which is useful, but I also know that often the dietician will catch up with me over-the-phone, so the distance is relatively inconsequential.  Because I am ill I don’t work, but I see this as a plus because it means that I can devote time to planning and cooking meals – you need to make time for this diet to work. .  As I said my illness means that planning, and indeed most things are difficult for me.  Therefore I have a secret weapon – my mum.  Everyone needs a good mum when they are going through a hard time and I am very fortunate enough to have one. My mum has therefore ‘volunteered’ to help me with the planning and preparation of meals – not for the rest of my life – but just until, hopefully, my brain starts to function as it should and then I will be able to do it by myself.

I am also an observant Jew.  Before the first appointment I thought the fact that I already take food with me when I go out on day trips when I know that I won’t find food that fits my dietary requirements would be helpful but I learnt that being kosher is not a benefit on the diet.  Being kosher means that I do not eat food derived from a pig or shellfish and I do not mix milk and meat together in the same meal.  This is a problem for a Jew on the ketogenic diet because a traditional ketogenic meal is essentially treif (unkosher) – the suggested week’s meal plan I was given has for example dishes such as chicken breast topped with cheese AND bacon, sliced ham with side salad as well as prawn mayonnaise. Treif is high fat and therefore good for the diet. But I have my  second secret weapon – Facebook.  I have found a few kosher, vegetarian and vegan ketogenic Facebook groups and I am hoping they give me inspiration for non-treif ketogenic dishes.

My first appointment at the clinic took place with a dietician and a neurologist.  They told me a bit about the diet, some of which I already knew and were honest about improvements I was likely to see –  40-50% of patients of patients will have an improvement to seizures after three months and on average seizures will reduce by  50%. They also said that they would be monitoring my overall health throughout because nobody wanted one illness to be treated but to be replaced with another (for example I had a blood test to measure my cholesterol level – if it is high I will not be allowed to go on the diet because it could cause heart problems).  I also have to complete a highly detailed three-day meal diary which includes brand names and exact quantities of the food that I have eaten so the dietician can assess my current diet.  I think the main point of the meeting was for them to outline how challenging the diet would be and then for me to go home and think about whether I really wanted to do it.  The diet is not going to be easy and you would only do it if you were desperate and I am desperate.

The next stage of my journey is an info-half day with other people also starting the diet at the hospital.  I will spend the first week acclimatising to the diet and then I will start in earnest.  I will let you know what happens.

You can keep updated with Sharon’s blog by joining her Facebook group here or going to https://sharonrossblog.wordpress.com/

PS – I am publishing this about three weeks after this appointment happened.  Apologies!  I will catch up with myself soon!

This blog has now been published by the Epilepsy Society. Please see http://www.epilepsysociety.org.uk/blog/my-journey-ketogenic-diet-18-10-2017#.Wfh0dzOnzYU

 

14 September 2017 – The New Year

Unlike secular self-improvement guides which offer many generic statements such as ‘believe in yourself’ and ‘set achievable goals’, the Jewish take on self- improvement says that each individual has a different way to improve and each person must find that way themselves. This Jewish way focuses on middot – personal characteristics.  Thus to improve ourselves firstly we must become aware of who we are, our strengths and our weaknesses.  We all have good traits such as being generous or hospitable.  But to improve we must focus on our weaknesses. If our weakness is that we are impatient, it would take a lot of energy and effort to try to be even a tiny weeny bit less impatient, but that’s what we should do, if your weakness was that you were always late then getting to one place on time might seem like an obstacle to large to overcome but you should really try and do it.  You won’t earn more money for making this sort of change but in Jewish terms you have achieved something absolutely huge and it is even said that perfecting these character traits is the reason for the existence of humankind.

In Jewish tradition there is no better time to focus on middot than Rosh Hashana – the Jewish New Year (which falls next Thursday and Friday).  Thus, in Judaism, a new year’s resolution is not something superficial, but a task that you have thought about seriously, and that if done effectively, will mean that you grow spiritually as a person.

In theory I think this this method of self-improvement sounds great – self-depreciation is all too easy but then so is keeping to the same behaviour patterns year after year – so picking on the one middot that needs working on the most does seem like a way to actually improve yourself.  However, this year I have decided to take a break and not make any effort in improving myself at all (not that I did very well at it before).  I have decided that I am too ill to make such changes.  I think I do quite well to get out of bed, get my children to school in clean clothes, give them some sort of dinner and get them to bed (in a completely chaotic sort of way).  If I tried to give myself any other target I would surely fail, so what’s the point?  This isn’t because I am too lazy or apathetic, it’s just that I’m too exhausted.  I don’t have the energy to self-improve. And looking around I can see that there are other people that might feel the same way as me – those living with cancer (and their spouse/  24×7 carer); people who hear voices in their head, or who are chronically depressed or for whatever reason life just seems to be a bit too much, surely Judaism should give them a bit of a let our clause for the New Year?

However I have decided that even though I am going to take a step back this year there are two arguments that still say that I am sitting in the Jewish model of what you are supposed to do at the New Year. The first is that I am ill therefore I don’t need to perform all the commandments – even the important ones.  I can only do what I am capable of and right now and I am simply not capable of this type self-improvement  (I know a lot of perfectly well people will probably feel this way as well) and that’s OK because G-d has compassion.  And the second position is that I am trying to improve myself – more than a lot of so-called ‘well’ people.  Day after day I write letters and phone doctors in the Hope that I will achieve full health and this is a huge challenge, as illness is for any unwell person.  In this way surely I am surely acting in the best of Jewish traditions of self-improvement – of meeting an internal struggle straight on and day-by-day trying very slowly but steadily to overcome it.

Alternative therapy

I’m really up for any crack pot idea if I think it will help me get better.  You name it, I’ve tried it – hair analysis, drama therapy, sacro-cranial therapy, cognitive analytical therapy and soon a new diet.  This week someone who I very much respect suggested that I went for some free alternative therapy which involved a very limited time commitment I was very much up for it and so this week I went to see a  Very Important Rebbe. For those of you that don’t know a Rebbe is a rabbi who has had a job promotion – he’s a rabbi and then some.  People seek a Rebbe’s advice because he’s on a higher spiritual plane than us mere mortals.  And I have to say, I was impressed with my visit. The Rebbe listened very carefully to what I had to say, gave me a blessing and a short regular task to carry out.  I actually thought the task was a lot more useful than the many tasks that cognitive therapists have suggested over the years and I truly felt blessed from his very sincere and heartfelt blessing. So Sharon’s assessment on visiting a Rebbe – an alternative therapy definitely worth trying out.

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24th August 2017 Why Mental Health Professionals Need To Know About Epilepsy, ADHD, ASD And Other Neurological Conditions

Hello readers

Just to let you know that I have written a blog for the Huffington Post about why I think mental health professionals need to know about epilepsy and other neurological conditions.  Here is a link:

http://www.huffingtonpost.co.uk/sharon-ross/why-mental-health-profess_b_17793906.html?

Hope you are having a good summer

 

3rd August 2017 – Being scared

There are three events in my recent past that have really scared me and I wanted to share them with you – the first was a car accident with my youngest daughter who was about six months old at the time; the second was when I came downstairs one morning to find that our TV, amongst others things, was missing and the third was going on the pirate ship at Legoland.

About three years ago, I sat in the passenger seat on a motorway somewhere in the middle of Israel minding my own business when all of a sudden there was a crash towards the back of the car – my baby daughter started crying and my husband and I were flung forward.  Someone had hit us.  All I remember was getting out of the car and feeling that the only reason why I was going to comfort my baby daughter was because I knew that was that other people do in such a situation – it wasn’t an instinctual feeling, it wasn’t innate, it was just something that I knew was the right thing to do at the time.  And I felt scared.  I still feel scared thinking about it.  I knew that there was something wrong with me.  I wanted to feel differently, I wanted to feel panicked and stressed and shocked, but I instead I felt dead inside – just as I normally do.

Then about two and a half years later I came downstairs one morning with my elder daughter, aged eight standing behind me and she said in a loud shrill voice, looking through the open lounge door, ‘The TV’s been stolen; we’ve been burgled,’ and at first I really didn’t quite understand what she was saying.  I then became aware that the TV wasn’t there. ‘But did that necessarily mean that it had been stolen’, I thought.  ‘How did she come to that conclusion so quickly?  Could there be another possible explanation?’  I couldn’t think of one.  And then I felt scared.  I was standing in front of my daughter as we walked down the stairs – why didn’t I notice that the TV was missing first and why couldn’t I just put two and two together and just figure it out.  I knew there was something wrong with me and I felt stupid and scared. My very thoughts were frightening.

And the last event was, when I went Legoland in that same year, with my family. We were reaching the end of the day and had found the Pirate’s ship.  ‘That looks fun’, my eldest daughter said and off we went to queue up.  We sat right right right at the back. The ominous bar came down and I was scared – scared in a good way, but still scared.  And as the ship went faster and faster I kept on holding my daughter’s hand tighter and tighter and my screams got louder and louder.  Whereas previously, after the car crash and the burglary, I had detested feeling scared, now I rather enjoyed it.  Feeling scared gave me an exhilaration that I rarely rarely felt.  ‘Let’s go again’, I said to my daughter.

Therefore after analysis of these three situations I conclude that feeling scared is all in the mind – it’s actually got nothing to do with the event that has actually taken place – it’s to do with the chemical reaction/ brain activity that result from what we see.  I’m pretty sure that someone else would have had a different chemical reaction and different thoughts about the situations I was in – it could have led to extreme anxiety and panic which might have been just as scary but was still a result of brain activity\ chemical reaction and thoughts that these provoked and not a result of the actual situation that had occurred.

In other news:

This week I have had further testing – at 24 hour EEG, where wires were attached to my scalp for a day to measure my brain activity.  I have had this test done many times before so I am not expecting the results to show anything new but it is worth taking the test anyway, just in case.

My first appointment at the ketogenic clinic isn’t until late September so in the meantime I have been carrying out research about cannabis oil.  Although in the UK, you cannot be prescribed medical Marijuana, you can buy quite legally, cannabis oil – a weaker substance but there has been some research that says that it can help with seizures.  So if the ketogenic diet doesn’t work I will try that.

Now that I have almost finished working on London City Airport – The first thirty years – I need to find something else, which is constructive. to do with my days. My psychologist contacted Headway, the brain injury charity, to see if they could assist me with finding something, but unfortunately because I do not have a diagnosis of a brain injury, even if I do have the symptoms, Headway will not get the funding to see me.  However, I am going to start writing a blog for the Epilepsy Society about going on the ketogenic diet, so that should keep me amused for a while.

 

6th July 2017 – One year on

It is a tradition by some Facebookers to reflect on a year since a particular photo was taken and thus in accordance with that tradition I would like to reflect upon a year since this photo was taken of me.

As illustrated on this photo last July I spent five days incarcerated 24×7 in a bedroom at the epilepsy hospital so that the doctors could measure the electrical activity in my brain.  Since then it has been a very busy year for me.  After the unit could not understand what was wrong I went onto see one naturopathic doctor, one neuropsychiatrist, three neurologists and two neuropsychologists.  I’ve also seen my mum quite a lot too. At the end of it all I have a diagnosis – frontal lobe epilepsy.  It now seems a bit bizarre to me that most people know more about the function of tonsils than they do about their frontal lobe, but that is the strange world that we live in.  The frontal lobe, as I understand it, controls your executive function ie memory, processing, decision making, strategic thinking and so forth (and thus shapes your personality).  Therefore, in contradiction to popular thinking, I have concluded that you do not control your thinking – your brain does. And if you have a broken brain controlling your thinking, like mine, it is problematic.

To remedy this problem this year I have tried out both naturopathic and conventional (anti-epileptic) medicines (not at the same time).  But the problem has not been resolved.  In fact one anti-epileptic drug made my condition worse. This is I believe due to the fact that epilepsy is an extraordinarily difficult condition to treat and the side effects of anti-epileptics can include decreasing cognitive function. Conventional drugs only effectively treat two-thirds of patients and I am one of the unfortunate third that remain currently untreatable (or intractable).

This year some people have suggested to me that I should give up on my little battle to find a cure to my ailments.  I should just find a way of living with my illness, like other people do, with chronic conditions. But I just can’t give up.  I want better for myself and my children.  And I live in the, perhaps false, hope that I will find one. My next step is in October to start a medicalised diet – called the ketogenic diet. It is similar to the Atkins diet but I will have a neurologist and dietician to aid me.

In other developments this year I have written 15,000 words of the book, London City Airport – The First 30 Years (to be published in October).  Don’t ask me about it because I haven’t retained much of what I have written. But nevertheless I have written it, in the knowledge that I am not retaining much of it. I have also taken a course in copywriting and life-writing and met some interesting people along the way. I have been to one batmitizvah, two barmitzvahs and two weddings (one wedding and one barmtizvah to go – and no funerals) and celebrated my 40th along with my children’s nineth, sixth and fourth birthdays (and soon to celebrate my husband’s 40th) .

So what have I learnt this year? I have learnt that medical science has much to learn about the brain; that people are not thankful enough that their brains work properly; that only God can truly judge another person because only She knows what is going on inside their head; that it is commonplace to pray for another person with a physical health condition but rare to pray for someone with a mental health condition and finally that it is important to laugh at your problems because sometimes if you don’t laugh you will cry.

I hope you had a good year too. Thank you for reading.  I really do appreciate your support.