Wednesday, 19 November 2014

Am I ashamed of having Lewy Body Dementia?



I was asked yesterday via an email, to think about writing a blog about  the following," Feeling of being ashamed of having Lewy Body Dementia".

When I read this I was close to deleting it, because it made me feel very sad.

There may well be some communities where this illness is classed as something to be ashamed of, but this has no effect on me personally. 

As with everyone else who has this illness, we simply have no option but to accept it and get on with life.

I lost my job as an University College, Electrical Engineer, and do not remember much about it, it's all gone.

I no longer remember how to do my job. My electrical exam papers, which I still have in a folder, mean nothing at all to me, it's like trying to read in a foreign language

I once rewired the College Chapel, yet now I struggle to fit a 13 amp plug, but that's life.

I also used to run two budgets, but ended up counting in my fingers, which was distressing at the time.

I sometimes feel embarrassed when I need to rely on other people, but never ashamed. I just have to admit it and move on.

Do people with an illness like Cancer feel ashamed these days?

 I know in the 1950-60s people were sometimes ashamed of speaking about it, but things have moved on these days. 

There has been a lot in the press about people being ashamed of having dementia, but I do wonder when thinking about it now, whether the press are using this as head line grabbing, rather than putting out the true picture, of life with dementia.

I do feel that while the press can be helpful, some of them just use an illness like dementia to sell papers and scare us all etc, rather than be helpful to us. 

There may be a lot of elderly people who are ashamed of having dementia, but perhaps these people remember the old stories, and I feel very sad for them.
Some of these stories make me cringe with horror, but we are all so very different, with different symptoms and problems, and no two people go the same way.

I know that I was totally shocked to get the diagnosis, at the age of 56, simply because I had only ever heard of Senile Dementia, and confess that Lewy Body Dementia sounded weird to say the least.

At this time I had never heard of anyone like myself getting this illness, where these days people are being diagnosed earlier than I was, some in their thirties and perhaps younger.

Then my consultant explained that there was various types of the illness, some of which had causes like strokes etc., where others were unknown

I was worried at the diagnosis, as I had no real idea what was going to happen to me, but part of me was determined to carry on, as if the diagnosis had never happened.

I had a brilliant consultant who encouraged me to carry on, and enjoy each day as it comes, and never try to do the things which have become impossible to do anymore, as that would be stressful.

But she said I should try new things, if I was up to it.

From this point I never really looked back, because I went on to give talks about living well with the illness, and that was something that would have been impossible while I was working.

 The mere thought of standing up in committees in the University shook me with fear, now I take it in my stride, perhaps because I am determined to fight this illness and the stigma, we hear so much of these days. 

As I said I am certainly not ashamed of having the illness, as I have done nothing at all to get it, or as some people think "catch it", because it's not contagious. 

So why should I be ashamed.

Its comments like "shame" where we lose friends, because they feel ashamed to be around us, and in that case I feel shocked and ashamed of these people, because they have no idea, of the stress they have caused. 

Many of these were academics of one sort or another, and that made me very angry, and ashamed to have anything to do with them, because in my view they should have known better. 

But I guess that's how many of the modern day University Academics think these days, when they work in the large well know Universities.

However some families have experienced the same thing, from other family members, and that to me is disgusting, and proves that they know nothing at all about the illness.

It's not that we have done anything to catch this illness, but I personally feel that people who use words like shame, when talking about any form of dementia, are treating it like a dirty disease picked up on the back streets, something we know is totally wrong.

Other people may feel that, but this is all part of the stigma we see and hear of every day.

I know that there are some people who may well be ashamed of the illness, and refuse to talk about it, or admit that they have it, when it comes to friends and family.

 But I have always been quite open about it, because as my consultant said at the start, it's nothing to be ashamed of, it's just a disease of the brain

Like it or not many others have diseases of the brain, which are accepted like Parkinson's etc., so why not any form of dementia. 

Never be ashamed of this illness, which ever form it may be.

If you are diagnosed early enough, go out and try to enjoy your life while you can, take each day as it comes, and never get upset at not being able to do the things you have done for years, as that will only make things much worse.

I am no angel, because I know when things go wrong, I sometimes get upset, annoyed and occasionally curse the illness, but I am certainly not ashamed to say that I have Lewy Body Dementia


Through this illness I have been able to speak to thousands of people all over the UK, and these days I spend time talking to graduate nurses in Universities about the illness. 

So does that sound like someone who is ashamed of having dementia, far from it?








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