38. 6th January 2018 – Dear Neurologist

I’m still on the ketogenic diet and I will let you know how I am getting on that 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. I know that you will say that you don’t have time for this, but I would argue that it is more important to get to know people like me than it is to go to yet another conference or write another research paper.  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 qualify 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 relationships 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 people with epilepsy in these ways might give you a bigger sense of satisfaction when you manage to find a good treatment for them..

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 are written on the same type of leaflet as one for aspirin or a cough mixture.  But there are a huge range of side effects listed for AEDs  ranging from ‘dizziness’, ‘fatigue’, ‘acne’, ‘unwanted hair growth’ and ‘behavioural changes’.  They are all real and although the packet might say that only 1 in a 100 are affected; if that 1 in 100 is you it can have a dramatic impact on your quality of life.   In addition 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 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 that AEDs can cause cognitive side effects.  Therefore, it would be wise of neurologists when discussing medications with patients and their families have a discussion with them about the powerful nature of these drugs so that they can weigh up the risks and benefits (which might be significant) before taking 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, might reduce when on them.

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!

[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

35. 15th October 2017 Ketogenic blog 2

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.

 

 

36. 22nd November 2017 – Free Will

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

 

34. 26th September 2017 – Ketogenic diary 1

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/

 

 

 

33. 14th September 2017 – The New Year

Unlike secular self-improvement guides on self- improvement, which focus on learning new skills, increasing monetary wealth and setting targets the Jewish way focuses on middot – personal characteristics.  This way says that 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 your weakness is that you 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 you should do, if your weakness was that you were always late then getting to one place on time might seem like an enormous obstacle but you should try 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 just one of these character traits is the reason for the existence of humankind[1].

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 – to work on a particular middah (the singular of middot) – is not something superficial, but if thought about seriously, and over time and with sincerity and effort worked upon, can invoke real change in 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 middah that needs working on the most does seem like a sensible way to 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 have had enough of religion, 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 who is a full time carer); those who are chronically depressed or have dementia or for whatever reason life just seems to be a bit too much.  Surely Judaism should give me and these people a bit of a let our clause for the New Year?

However, having done a quick scan of Jewish law I have decided that there are two reasons for the get-out clause I and many others need not try to self- improve this year. The first is that I am ill and the Jewish law can be very lenient on those are ill (for instance if you need to use a car to go hospital,  because you are ill, on the Sabbath- a day that you normally wouldn’t be able to drive – then you can[2]).  And the second reason why I believe that I and many others who are ill, who are full time carers or who are generally exhausted and life-is-too-much don’t have to try at self-improvement is because that we are already expending all our energy  trying to, in whatever way, make life just a tinsy wincey better for ourselves minute-by-minute day-in-day out. Day after day I

write letters and phone doctors in the hope that I will achieve full health and this is a huge challenge.  Each ill person is on a different journey and faces different challenges but they are all hard and require extreme effort. In this way surely I am along with the other exhausted-life-is-too-much people 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 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, in the spirit of self-improvement, 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. I don’t know if the visit will have any influence on whether I get better or not but as I said it didn’t cost anything and no harm done. So Sharon’s assessment on visiting a Rebbe: an alternative therapy definitely worth trying out.

 

PS  Happy tenth English birthday to my lovely daughter Gabriella, whose Hebrew birthday is the second day of Rosh Hashanah.  I don’t know if you will ever read this, but if you do you probably won’t be ten and it won’t be your birthday but I just I just want you to know that I wanted you to have a happy birthday.

PPS The Rosh Hashanah self-improvement thing is obviously a pretty hard thing to achieve many, if not most, Jewish people that I meet do not try at it.  That’s because it’s hard, they think that they might fail and maybe they will. And I believe that a compassionate all-knowing god understands that.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

[1] Shlah – Leviticus 1:18

[2] There are various law surrounding how you would use a car on the Sabbath if you are ill, so check them out – by speaking to a rabbi or Jewish person educated to a high level in Jewish law, if you think you will need to do this or if you’re just nosey. or Jewish person educated to a high level in Jewish law.

32. 24th August 2017 Why Mental Health Professionals Need To Know About Epilepsy, ADHD, ASD And Other Neurological Conditions

‘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

31. 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 getting out of the car to comfort my baby daughter – but realising that the only reason why I was doing that was was because I knew that was that other people would 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 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 figure out that we had been burgled.  I knew there was something wrong with me and I felt stupid and scared that my very thoughts somehow weren’t doing what they were supposed to be doing but I didn’t know what to do about it.

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 every have.  ‘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. At the same three events other people might have felt extreme panic or anxiety – the only difference being that their brain reacted differently.  Thus feeling scared is just about the brain reacting to certain events, or thoughts, and is actually not about what is taking place before our eyes.

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 anything 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 about research about cannabis oil.  Although in the UK, you cannot be prescribed medical Marijuana, you can buy quite legally, cannabis oil – a substance made out of the hemp part of the cannabis plant and there was been some research that says that this oil 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 constructive to do with my days. My neuropsychologist 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, Headway does not have funding to see me.  As I said in my last blog, I will not being see my neuropsychologist again. However, I responded to the Epilepsy Society’s request for suggestions about how they could best serve people with epilepsy (train neurologists in the non-seizure impact of epilepsy, carry out research into how cognitive of the condition could be treated) and I also attached a link to my blog. They got back to me and said – would you like to write a blog for us about the ketogenic diet.  I thought that was a good idea, so that is what I am going to do – it should keep me amused for a while.

 

30. 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 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 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.

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

29. 25th June 2017 – Epilepsy – Not ‘just’ a seizure disorder

Nearly a year ago I wrote a blog explaining epilepsy as I knew it then.  Having spent many hours trawling through Facebook groups, trying to find an answer to my problems, I now know a little bit more.  Therefore, in this blog, I will explain the mantra of every discerning epilepsy Facebook group ‘Epilepsy – it is not just a seizure disorder.’

However, before I begin, I have to admit that epilepsy is a seizure disorder, so I better explain what a seizure is. A seizure is a sudden surge of electrical activity in the brain which can cause convulsions, a range of physical symptoms, thought disturbances, or a combination of symptoms. The most well-known is a tonic-clonic seizure – involving a loss of consciousness, rapid jerking of the arms and legs and falling to the ground.  But there are over 22 other types of seizure including an absence seizure (loss of consciousness for a few seconds), a partial complex seizure (staring blankly, repetitive movements) and a myoclonic seizure (spontaneous quick twitching of the arms and legs).

Seizures are not pleasant to those that are having them in the moment, but it is the impact that the seizures have on the rest of their lives that can cause the real problems and here’s why:

  1. Your life becomes a little unpredictable (but not in a good way). Some people come to understand what the triggers for their seizures are – it can be anything from excessive heat, loud noises and strobe lighting to drugs, alcohol, stress, interactions with other medications taken for different conditions as well as changing anti-epileptic medications because the current ones aren’t working. However, it can be difficult to manage your life so that you don’t encounter your personal trigger. And other people do not know what their triggers are and reflecting afterwards as to why a seizure happens proves fruitless. Trying to manage triggers or being anxious about the possibility of having a seizure is not a pleasant way to live life.
  2. Post-seizure impacts – Post-seizure you might have to deal with an injury that happened during the seizure eg I saw a photo of a person who had serious burn injuries because when she had one she was holding an iron. But also post-seizure you have to deal with the wooziness and fogginess that it leaves you with – I heard of one instance where a lady was raped post-seizure but she was only made aware of it because her  ‘boyfriend’ later told her that he had done it – she had no memory of it at all (Although please note that 99% of loved ones, including my own are more than caring and thoughtful after seeing their beloved this way – putting them into recovery position, staying close by their side for hours in case they have another seizure and also suffering the anxiety that it may happen again).
  3. You can’t drive – If you have epilepsy or have had a seizure the Driver and Vehicle Licensing Authority may take your driving licence away from you for a period of time. If your job requires you to drive or if you live in a place with poor transport links, this can be dramatically change your life in an instant.
  4. Cognitive impacts – Although I’m not having seizures at the moment I do have chronic cognitive difficulties which impact on my planning, processing, concentration, and memory (one neuropsychologist said my cognition was similar to someone with traumatic brain injury). These difficulties can be caused by the epilepsy itself or the anti-epileptic drugs (see point 5 below). My symptoms are quite severe although many people with epilepsy suffer, to some extent, with cognitive dysfunction.
  5. Side effects from medication – The anti-epileptic medications have to be very powerful to prevent seizures. But so are the side effects. Not only can they cause cognitive difficulties that I mentioned above, but they can also cause drowsiness, insomnia, aggression, paranoia – to name just a few.[1][2]
  6. Depression – For all of the reasons given above people with epilepsy are much more likely to get depressed. And treating the depression can be hard because, in my experience, neurologists do not know that much about depression and therapists and psychiatrists do not know that much about epilepsy.

And so in conclusion this is why, I hope you will agree, epilepsy is not just a seizure disorder. It’s a disabling condition that can have severe impacts on the person living with it at all times.

 

In other news

I have been taking my new anti-epileptic medication but I don’t like the side effects – when I am stressed I involuntarily stick out my tongue and become inarticulate.  My doctor looked in the BNF (the doctor’s medical bible of pharmaceutical side effects) and said that because my side effects weren’t listed they couldn’t possibly be down to the medication.  But I think it is, and since I am not seeing any benefits of the medication, I am going to discuss with him how I can wean off of it (I have to wean off because if I do it too quickly I could have a clonic tonic seizure).

I only have a few more sessions with my neuropsychologist for neuro-rehabilitation.  We aren’t really getting anywhere – she suggested I used some apps to help me reorganise myself but then I forget that I have the apps on my phone.  But anyway, even though I like her, the NHS funding is going to end. I have found our meetings useful because she made me understand that I am not going mad – that there are other people like me.  She gave me metaphor of my brain being like a filing cabinet – whilst most people take in information all day long and put them in files and then retrieve them at the exact moment when they need them, when I get information I don’t know where to file it and therefore I cannot retrieve them. I am still waiting to start the ketogenic diet – I now have an appointment date with the dietician in September and I hope to start the diet in October.

NB – My UK Huffington Post blog, of the same name and published on 30th January 2018, is based on this blog entry.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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

[2] https://www.webmd.com/epilepsy/medications-treat-seizures#1

 

 

 

28. 7th June 2017 – On Dementia

 

I could say that last week was a busy one for me – I attended a batmitzvah of some very special friends of hours, the following day was a wedding of a relative and then it was half term. In half term there was the two day festival of Shavuot (in Israel and for reform Jews it’s one day, but that’s another matter). For various reasons to do with Jewish law I prefer to cook the vast majority of food before the festival began and we also had guests over this period and together before the festival began I calculated that, together with my husband we cooked 30 meals. To top it off it was my six year old’s birthday party on the Sunday of the half term with all that that entails (ie softplay followed by lunch). But I didn’t feel busy. I didn’t feel busy at all. And I have come to realise that the reason why I didn’t feel busy or even involved in what I was doing was because my epilepsy has some of the features of dementia.
I was aware that a good percentage (10-22% )of people with Alzheimer’s (the most common type of dementia) develop epilepsy and I wanted to find out more about it so I decided to read Sally Magnusson’s book ‘Where memories go’ about her mother who had Alzheimer’s Disease. In its’ review The Scotsman wrote the book was ‘profoundly moving’ and I think that this is because it is clear in every page how much Magnusson (whose father was Magnus of BBCs Mastermind) loved and respected her mother, Mamie Baird, and, even in her mother’s darkest days, tried to understand what it was like to actually be her mother, to think like her mother, to approach life like her mother.

As I was reading the book I noticed three features of Mamie Baird’s, illness that were like my own. Firstly Mamie Baird tells her daughter that she cannot be herself – that feels disconnected. And that is exactly how I feel. It is not that I, and I suspect Mamie Baird, do not know who I am in a philosophical way – I have a strong identity; I know who I am and what I want out of life – it is that I have lost (or didn’t have in the first place?) a sense of who I am on a minute-by-minute basis. Somehow, when I go into a shop it takes me forever to decide which sticker I should buy to decorate my son’s book; when I stand in the kitchen and the meal needs to be made, the washing needs to be put on, the children are asking me to do something, I kind of stand still (my mum says I’m prevaricating) – I just don’t know what I am doing. And that decision about where to send my child to school. How is it possible to make a decision like that? But deep underneath the mush – the indecision and the lack of focus, I know squarely and powerfully who I am – but it just seems impossible to obtain.

The second feature my illness shares with Mamie Baird is a lack of sense of time. Magnusson describes a scene where she is standing on a beach noticing the waves and all that is around her and then she thinks about the past and memories of her father and then she remembers something that she has to do in the future and then she understands that her mother cannot have these thoughts – she cannot think about the past; she cannot analyse the present and she cannot think about the future and for the most part that is how it is for me – I sit in the present without connecting to how what is happening now connects to the past or how I can make plans for the future. And by future I mean the next day, the next hour – if the kids need an early night because they are doing something the next day, it sort of doesn’t occur to me.
And the third similarity my illness shares with Mamie’s is a lack of curiosity. I know, I realise what you are thinking, ‘Sharon, you have tonnes of curiosity,’ but I will illustrate otherwise. At my son’s birthday party last weekend my daughter’s friends helped me prepare the lunchroom whilst my son and his friends were at softplay. I started to put a drink carton at each plate. ‘Should we put some drinks in the centre, ‘ my daughter’s friend said, ‘that way the children can choose which flavour drink they would like’. ‘OK’, I said flummoxed as always – how does a child put these questions in her head which simply never in a million years would occur to me? And then she changed her mind, ‘It doesn’t matter – they can just choose where they are going to sit based on which flavour drink they like’ . ‘OK,’ I said really not knowing which was the right approach and also knowing there wasn’t one whilst realising at the same time that my daughter’s friend’s brain worked on a level that mine simply could not do. I know it might seem in these blogs that I am curious – indeed I am absolutely fascinated in how the brain works; in how we can make life better for people that are suffering; in what Hope G-d can offer people in pain – but these are intellectual curiosities, without substance, because I can’t hold facts. What I mean when I say that I lack curiosity is that I am not curious in the mundane – in the seemingly trivial but somehow very important things that happen every day and thus because of that, like Mamie Baird, I suspect my life even when busy, feels boring and a little dull.
As I said the reason why I believe I share ailment with Mamie is because many people with dementia also have epilepsy. Indeed my neuropsychologist said that my symptoms are similar to those of stroke and traumatic brain injury patients (TBI) – that is probably because some of these patients also have epilepsy as well . By all accounts Mamie Baird was an extraordinary person who led a full life with joy which makes her demise, likes those who have suffered a stroke, TBI and with epilepsy all the more tragic.
Election News
Just a plug to all those in the UK – please vote in today’s election! Voting for no-one isn’t a vote for democracy and at this time it is important that we exercise our right clearly and authoritively. But please don’t vote Labour. If you want someone to run a large corporation you don’t choose someone who has never held a management post, who makes friends with people that are notoriously bad for the company, and who although purports to value those who are different in his company is quite happy to let some of his supporters aggressively and openly be racist to a group of people who have contributed so much towards the corporation, and indeed, his own financial backers over the years .