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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

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23. 25th February 2017 – Final Diagnosis/ Sharon goes to a job interview

Super Important Interviewer (SII):  So, Sharon, as you know you are here today to be interviewed for post of Highly-Efficient-Super-Organised-Nearly-Perfect-Person.  My first question is – Tell me about yourself.

Sharon Ross (SR):  Well, I went to a very nice doctor last week and he said that my personality can be described by my frontal lobes.  The doctor said my frontal lobes are not working properly because I have epilepsy.  This means that I find processing, problem solving, decision making and planning very difficult.  I have a poor short term. I also have a poor autobiographical memory – I can’t describe the details of holidays that I have been on or trips to the theatre.  However, the doctor pointed out that the good news is, like most people with this condition -I have above average IQ and I am sociable.  But I am depressed a lot so that doesn’t make me feel sociable and I’m not super intelligent I’m just higher than the average IQ.  Of course, no-one can be described purely by their frontal lobes – I am a mother to three very beautiful children, I am a wife to the long-suffering Michael Ross, I am a sister, an in-law, and I have some very special friends.  I am a committed Jew – although I am finding it difficult to understand why God would screw up my brain so fundamentally  – and I live in the ‘ugly on the outside, beautiful on the inside’ town of Borehamwood.

SII: ‘ Erm, thank you Sharon.  That was very honest of you.’  Can you tell me about your strengths and weaknesses?

SR: I will start with weaknesses – as I said there are many.   Most people do not know this but when you are trying to organise your children’s lives it involves a lot of cognitive or executive functions such as planning and decision making.  And these are things that I just can’t do, no matter how hard I try. If two of my children have to go to two different parties on the same day at different times I just can’t work it out.  The algebraic equation that seems to happen quite naturally in someone else’s mind does just does not happen in mine.  So in such a case I might ask my husband to work out if it is logistically possible for two (or three) different people to go to different parties at different locations and if it is possible how they will get there and get back. I simply cannot do the algebraic equation in my head to work this all out.

And my strengths –  On the plus side I am very determined.  My children always go to birthday parties, no matter what.  Even if it is difficult for me to think through the logistics – I know it is important for them – so they go.  Indeed according to my sister and brother who ‘commissioned’ a very uplifting word art picture for my 40th birthday apart from determined I am also resourceful, caring and want justice.

I can also write.  I am writing a blog about my experiences at the moment which I have received good feedback from.  I am also co-authoring a book about London City airport – the editor, my father, is very sympathetic towards my needs and likes my work.

SII: ‘Last question Sharon, – Why do you want this job?

SR: I would like this job for three reasons.  Firstly I need routine.  I haven’t had a routine for a very long time and I find it difficult to get into one.  If I had a job I would have a routine.  Secondly, I would like to be productive.  Due to my deficiencies I very rarely feel productive and maybe this job would help me feel productive.  And thirdly – I didn’t think that I would get this job but my blog has thus far purely been me wittering on about nothing –  I wanted to spark it up a bit and thought this interview would do the trick.

SII: ‘Ok thank you for coming today’.  I am sorry and I don’t usually do this at interview stage – but I am not giving you this job.  This is for two reasons – firstly, your weaknesses are too vast – although I appreciate your candour. To be honest, I am not sure if you will ever be able to get a job.  And secondly I have already got a candidate lined up who I want to give the job to – it’s company policy to have fair and open interviews.  We are very keen on equality and diversity in this company. The person I want to give the job to has been working here on a temporary contract for six months and she’s very good.

SR: So we are both wasting each other’s time then?

SII: I guess so

SR:  Well nice to meet you – thanks.

In other news

The interview in this blog was made up for the benefit of readers’ enjoyment however, it roughly parallels what a very well versed and Compassionate Professor of epilepsy at a top neurology hospital said to me this week when I went for my 99th(?) opinion (obviously he said it in a much nicer way).  As I have said previous blogs although I did think that Very Important Doctor was correct when he said I had a dissociative disorder/ functional neurological disorder I did not think that cognitive behavioural therapy or antidepressants, which is what he suggested, would treat it.  It wasn’t working so I decided to stop the therapy.  I went for yet another (private) opinion and this professor said that although there was no clinical evidence (ie EEGs or MRIs) that indicated that I had frontal lobe epilepsy the symptoms that I described to him suggested that I almost certainly did. Compassionate Professor recommended a three stage treatment plan.  Firstly I need more sleep – I feel drowsy a lot and he was the first doctor who has told me that I need more sleep. Secondly he recommended a different type of anti-epileptic medication – but he pointed out that the drugs won’t work unless I am having enough sleep.  Finally he said that I need to go and see a neurorehabilitation unit – so that I can work out some strategies to deal with my condition – however at least six months ago I was referred to one by a different doctor but this referral has not yet come through.  People that go to these units are usually those recovering from traumatic brain injury or a stroke. Really I just want the magic pill to take away the pain that I am feeling.  Coming up with strategies to deal with my disorder seems too exhausting. But the nice compassionate doctor just said: ‘You’re intelligent.  You’ll be able to work it out.’

 

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19. 6th December 2016 – On nothing

I hear a lot of people say, ‘I wish I could do nothing all day.  I’m so busy.  I really need a lazy day.’  But my question is ‘Do they really mean nothing?’  For some doing nothing might mean not getting dressed all day, watching a movie and catching up on some housework and for others it means doing some gardening, spending time with the kids/ grandchildren and getting an early night.  However for a stereotypical depressed person doing nothing all day means simply that – doing nothing ie lazing in bed or watching tv all day.

However, as in all spheres of life, not everyone is a stereotype. Thus for some depressed people even though they are doing something (eg working in a stressful job, meeting up with friends) it feels like they are doing nothing because they don’t have the koi-uch – the strength, the energy, to fully take part in the activity.

At the moment I am not doing a lot and although doing nothing might sound like some people’s dream, honestly it’s not.  I have come to the conclusion that with a marginalised cognitive function it is difficult for me to do most things eg to have an idea of what needs to take place when my children come home from school; to make a decision as to watch a tv programme to watch or to read a book and to take it in.  I do these things but I now realise that it isn’t in the same way that other people do them and therefore it feels like I am doing nothing.

Most people don’t really want to do absolutely nothing – because really they want to be productive and to go to bed and say ‘I did bla bla today’.  If you can’t say these things to yourself, for whatever reason, you start to feel depressed and the whole thing becomes a vicious circle becoming harder and harder to get out of.  And on top of that a depressed person has to also deal with whatever is ailing them in the first place (eg stress overload, a psychological reaction to a difficult childhood, etc or having an oddball cognitive function like me).  And therefore just ‘snapping right out of it’ is like some sort of mysterious fairy tale that you have only heard about in books and the movies.  So, if and when I get better, I will revel in the fact that I am doing nothing, because actually I will know that doing nothing is actually quite a lot of something.

In other news

It’s is going to take the signatures of three doctors for me to get hold of the medicine which Doctor Second Opinion prescribed me.  Doctor Second Opinion needs write to by NHS neurologist explaining why he thinks I need this medication. The NHS neurologist will be able state that I need this medication which will mean that I do not have to pay for it privately. However, neurologists these days don’t actually prescribe medications – they prefer, I presume for budgetary reasons, to send a letter to GPs asking them to prescribe it.  So perhaps by next week my GP would have got this letter and I will be prescribed this elusive medication which may or may not help me.

Although I may think I am doing nothing, I could also argue that I am chillaxing after a hard few months of carrying out an extensive project entitled ‘the investigation into my mind’.  I’ve consulted with neurologists, psychiatrists, neuropsychiatrists, facebook groups and google and might soon have a conclusion to my project.  However, I have decided that I am not going to write this blog as regularly as I have been because I am worried that one week I will have nothing to say and I don’t want to witter on about simply nothing. But next week I will definitely write and because I know that I have something to say and of course I will still keep you updated on my journey, but just on a more sporadic basis.