I did not do too badly at school, but last week I went to the hardest lesson of my life – a half-day course on the ketogenic diet at the National Hospital of Neurology and Neurosurgery in London.

It started quite gently – the nutritionist asked what I, along with my mother, the other patients and their family members (who like my mother had come along because they wanted to assist their loved ones in their new undertaking) knew about the diet.

We were a well-informed lot – we knew it was a low carb/high fat diet; we knew that ketones were a bi-product of the diet that could help to reduce seizure activity and we knew that it was going to be hard work.  Our little group thought we were doing quite well.

And then she hit us with the tables.  A very long list of tables. They listed the amount of carbohydrates in various products.  For example did you know that 8g apple, 13g onions and 250g mushroom each contain 1g carbohydrate? And don’t get me started on bread, rice or pasta (11g sliced white bread has 5g carb etc etc).  These are the tables for which the next three months, at least, we were going to live by. Our little group knew we had a lot to learn.

Based on my weight, height and activity levels the nutritionist had calculated the amount of carbs and fat I must have at each meal or snack – each patient had different targets, but at least we didn’t have to calculated protein. There was to be no wiggle room she stressed – I must have the amounts she had stipulated, no more, no less at every meal and snack.

So I must know these amounts like a mantra – breakfast, lunch and dinner 4g carb, 40g fat at each meal; and 3g carb and 25g fat for three snacks throughout the day.  Everything I eat must be measured in advance like a military exercise.

And then came the crunch time – the calculations.  What should we do if we wanted to eat something not on the list? For example I want to use my favourite pasta sauce (to flavour fish or meat but definitely not pasta). It contains 11g carb per 100 gram.  How much of it can I use for my lunch?  And so, under the guidance of my nutritionist, I learnt to calculate that I can have 36g pasta sauce with my meal to meet my carb requirement. Our dietician/maths teacher was patient with her patients as we learnt our new life skill.

But that’s not all.  We had we had to take into account our fat requirements.  The tomato sauce has 2g fat in it per 100g.  That’s way below my fat target. So I’m going to have to add some double cream to my pasta sauce which could be quite nice and then have a high fat dessert. Of course I still have to limit carbs and also remain kosher – Jewish laws stipulates that I can’t consume milk and meat together in the same meal, so I will have to have tomato and cream sauce with fish which doesn’t sound too bad.  And to top it off, at least at the beginning of the diet, I cannot use meat or cheese or oily fish towards my fat target.

It was indeed a very difficult lesson to take in – and with a foggy brain like mine, this is the hardest challenge of my life.

But the nutritionist was upbeat – it is possible came back the message.  You can do this – other people have.  But it won’t be easy and there are no guarantees that it will improve your cognition or reduce seizures. She was on our side –  I’ll be there to help you all the way, adjusting the plan if necessary, she stressed. But, the other patients, like myself, must have been pretty desperate – fed up with the epilepsy that is destroying the quality of our lives, because that is the only reason you would take this diet on.

I came back from the seminar with my goody bag – two recipe books, one electronic device which will measure my ketones and glucose levels daily via a blood test, lots of tables containing lists of carbs and fats in various products and notes about what to do if you are unwell (keep to the diet and check meds are low carb!).  Plus we also got the number of direct line to the dietician, which is now listed as a favourite on my mobile phone.

My mother and I were exhausted.  We had entered into a world that we didn’t know existed.  We were uncertain whether we would be able to stay the distance.  But we must try. So next week, after spending sometime meticulous planning each meal I will start the diet – just with breakfast at first and then slowly building up over a week to include every meal.  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/

A similar blog was also published by the Epilepsy Society here.

I am still doing the ketogenic diet and my next blog will be published by the Epilepsy Society in due course 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 of act upon it seem 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 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.  As I explained I while back (Blog 10 – the theory of the mind – for those that have been following) 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 sort of spurious ideas – and some 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 people 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 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.  You have an essence about you that means that you go on.  Some people with limited cognition or intelligence might even need assistance in functioning in life but nobody ever argues that they are not human.

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 – it can’t be explained and it isn’t necessarily logically. 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 it’s 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 a 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 for http://www.chabad.org/library/article_cdo/aid/80899/jewish/Chochmah-Binah-and-Daas.htmfurther info

This is my blog about my first visit to the ketogenic clinic at the National Hospital of Neuroscience and Neurosurgery in September. A similar version was published by the Epilepsy Society the following month.

Sharon Ross is about to start the ketogenic diet.  This is the first in a series of blogs about what it involves.

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 specialist in metabolic medicine.  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).  I  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 is a half day information session with other people also starting the diet at the hospital.  I will then spend the first week slowly weaning myself onto 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/

‘I am useless’, ‘I haven’t achieved anything,’ I used to tell my therapists who presumably had heard that sort of thing a million times before. But I also said some slightly odd things like ‘I don’t make decisions,’ ‘My seven-year-old daughter knows more than I do’ and most peculiar of all ‘After I had a car accident and my one-year-old daughter, my youngest, was in the back crying I felt that I went to check on her, not because of any instinctive feeling, but more because I knew that was what other mother’s would do in that situation’.

I thought I had these feelings because I was depressed – and that’s what the many therapists and psychiatrists I saw thought as well.  But now I know differently, I know that my problem is neurological, not psychological – I have frontal lobe epilepsy − my brain activity is abnormal (but I am not having obvious seizures) and my processing, decision making, memory, attention and awareness are impaired and this, my primary diagnosis, is making me depressed.

It has taken me 20 years of seeing therapists, psychiatrists, neuropsychiatrists and neurologists to come to this conclusion. And along the way I have also discovered that I am not alone in having a neurological condition that makes me depressed. People with undiagnosed ADHD, Autistic Spectrum Disorder, dyslexia, epilepsy and other neurological conditions often feel, as I do, in some way different from others and it leads them to the therapist’s door. The statistics prove the point – ‘Forty percent of people on the autistic spectrum experience at least one anxiety disorder at any time’ (The Autistic Society); ‘lifetime prevalence of depression with people with epilepsy could be as high as 55%’ (Journal of Neurology, Neurosurgery and Psychiatry) and ‘adolescents with ADHD are 10 times more likely to develop depression than those without ADHD’ (University of Chicago Medicine).  But it’s also intuitive – if you feel different but don’t know why and you try time after time, and fail time after time, to be like everyone else, it is almost inevitable that you are going to get depressed.

Yet even though the evidence is there to see most therapists and, in my experience, most psychiatrists just aren’t trained to recognise atypical processing, memory or communication skills. No more so than for therapists – it’s not their bag – they deal with the psychological.  But the impaired or atypical neurology impacts hugely on the psychological and I believe that those in the profession should become more aware of that. Although most psychiatrists should up their game and find out more about these conditions, many depressed people might not see a psychiatrist, or only rarely.  Therefore other mental health professionals such as therapists and social workers (and even GPs) should also be trained to recognise symptoms. It doesn’t mean that they should diagnose or treat these people – they should just be trained to recognise symptoms and then, if appropriate, refer them to a suitable professional for assessment.

I still have a significant journey to go on. Epilepsy is not an easy or straight forward condition to treat.  But I am convinced now that I need to find an effective treatment plan for my epilepsy and if I find that then my mood will improve.  I don’t need to see a therapist, even though I am depressed. My case is complex – but shouldn’t have taken me 20 years to get this far – but without appropriate changes to the system others, with far less complicated conditions, will be doing the same thing.

Sharon Ross blogs at https://sharonrossblog.wordpress.com/

This article can been seen at http://www.huffingtonpost.co.uk/sharon-ross/why-mental-health-profess_b_17793906.html

The research quoted in this article can be found at the following websites

ADHD  – http://www.uchospitals.edu/news/2010/20101004-adhd.html

Autism – http://www.autism.org.uk/about/health/mental-health.aspx

Epilepsy – http://jnnp.bmj.com/content/76/suppl_1/i45

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 of me last July when 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.

This diagnosis has helped me to fully understand what my difficulties are. The frontal lobe controls your emotional expression, problem solving, memory and language, judgment[1]. If it doesn’t work, because abnormal electrical impulses are happening in your brain every day, like mine, you’re basically stuffed.  Therefore, in contradiction to popular thinking, I have concluded that you do not control your thinking – your brain does. 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.

At the end of my hectic year experimenting with various anti-epileptic drugs, therapy and minerals I have not been able to resolve my problem.  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 – conventional drugs only effectively treat two-thirds of patients and I am one of the unfortunate third that remain currently untreatable –even having tried out alternative medicine.

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 life 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 – The First 30 Years (this is my father’s project, which realising that I needed something to do and that I could write, he kindly found a job for me).  For every year from 1997-2017 I have summarised world news so it can be compared to what was happening at London City Airport in that year. Don’t ask me about to recall anything that has happened in these years because I haven’t retained much of what I have written. But nevertheless I have written 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 and celebrated my 40^th along with my children’s nineth, sixth and fourth birthdays (and soon to celebrate my husband’s 40^th) .

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.

[1] https://www.healthline.com/human-body-maps/frontal-lobe#1