Posted on by sharonrossblog

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 .

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Posted on by sharonrossblog

21. 15th January – An Update – Still Ill

After two months on my new medication my cognitive function has not improved and therefore I am still ill.  I know my cognitive function isn’t working because of hundreds of seemingly innocuous events that happen to me every day that make me think that my brain isn’t working. For instance a friend of mine told me that she bought a new coat because her current one was two years old and looking a bit worn.  I was really baffled – how did she know her coat was two years old? Has it got a ‘bought in’ date on the label?  No – she just knows it.   And how does she know the coat is looking a bit worn?  Has she got a high tech ‘very warn’ app that tells her that her coat has had it’s day.  And then how does she put all this information together and chose a coat that meets her personal taste, budget and the season. I’m really not sure how people come to these conclusions but I know that I just can’t do and that’s why I know that I am still ill.

The self-awareness of my difficulties is making me feel very warn and depressed. But unless I had let you into my little secret, if you met me you might not have guessed.  And that is the point.  Mental illness isn’t seen.  Nobody knows who is suffering, unless the person suffering tells you.

Say tomorrow you buy a card from a shop and notice that the shop assistant has beautiful nails and a bit too much make-up. But did you know that underneath that thin veneer the lady finds it difficult to get out of bed, let alone go to work each day because she feels like she can’t go on after she lost her husband two years ago?  In the afternoon you go to see your cousin who you haven’t seen in a while.  He seems his normal self and he talks about the movie that he saw last night.  Did you know that the reason why was wearing a long sleeve top was because he has gashes all the way up his arm – a sign of the harm that he inflicted on himself as a reaction to the bullying he had received from older girls at school?  In the evening you want to relax and go to that movie that your cousin saw.   You sit next to a man, in his 40s, who with his partner. He is quite fidgety and quite frankly a bit annoying.   If you knew him a bit better, and you knew about various mental health conditions, you might realise that he has bipolar.  The man has also always thought this – but he has never seen a doctor about it because he is scared to take the medication – the periods or extreme elation and then the inevitable depression mean that his relationship with his partner is suffering but he doesn’t know who to turn to.

In this open, diverse, multi-cultural, mutli-lingual, open to everyone society that we live in we are not as open to everyone’s behaviour as we would like to be. People cover up their anxieties with a superficial smile (and that’s OK) but other people are just not aware that that is what is happening. But as we go through our everyday routines we should be aware that that mental illness exists everywhere, in every shape and form and just being aware of that as we go about our business could help those suffering as they go about their’s.

Fashion news – for ladies – but it might interested men as well

Not many people know this but a size eight skirt can, in special circumstances, fit a person who is a size 14 (for those of you who are not British size 10/12 is as not too skinny not too fat size).  I know this because two years ago I lost a lot of weight due to depression – I went from a size 12 to a size 8.  For those wanting to lose this much weight the trick to this weight loss programme is simple – put less in your mouth, miss a meal or two here and there and don’t nosh. For me the best aspect of the programme was that I didn’t even realise that I was eating less.   However – now for the sad news.  I have now put on a lot of weight.  This is a side effect of my new medication.  I am basically on a see-food diet.  I see food and it must, no matter what, put it in my mouth. I am now a size 14 (it’s a secret – don’t tell anyone). However, and here’s the good news – some of my size eight clothes still fit me. They have to be the right type – an elasticated waist is a must, floaty is also good; the sort that you can cover up with a baggy jumper can enhance the look.  The skirts are quite comfortable and I have started to wonder what the point of clothes sizes are anyway.  So my top tip is if you are feeling a bit down about your weight – when looking for new clothes try on a skirt with an elasticated waist in a lower clothes size.  No harm in trying and if you buy a lower skirt size it will make you feel good about yourself!!!!!

Medical News

The doctor said that I should try the new medication for two months, and as I mentioned, I haven’t seen any improvement. As suggested by the Very Important Doctor I will now enter the bizarre world of going to therapy to improve my cognitive function.  I am not convinced that it is going to work but that’s the only thing that is being offered to me right now so I might as well try it out.

I have now analysed other routes available to me to find a cure to my problem. Option A – ketogenic diet (a specialised low-carb diet) which is proven to help people with epilepsy.  However, given my issues I think that I will find any dietary changes simply too confusing and therefore I wouldn’t be able to keep to it.  Option B – a neuro gym – this is one-to-one sessions with a non-medical specialist to discuss methods into improving my cognitive skills plus online training.  This is untried with people with the severe cognitive issues – it might be worth a go if I get desperate.  Option C – Investigating dementia.  Dementia and epilepsy are related because they are both cognitive disorders and people with dementia are particularly susceptible to epilepsy.  There is research that says that anti-epileptics can increase cognitive function in people with dementia – so why can’t dementia drugs improve cognition for people with epilepsy?  I did see some research which investigated that line of thinking but I can’t find it now (if anyone knows someone who knows someone who knows something about dementia please let me know). And so this story continues – even the author doesn’t know how it is going to turn out. But I will give you another chapter next week and after that we shall see.  Only the true Author, the Author of All Things knows how this story will end.