Living well with Lewy Body Dementia

When I was originally diagnosed with early onset Lewy Body Dementia, I confess that it came as quite a shock as I had only ever heard of Senile Dementia.

However after losing my job, we moved back to the family home in the North East, where I had to be diagnosed all over again because the first hospital had lost all my notes. But in many ways, this second diagnosis was done in a more caring and sensitive way, so much so that I was given the advice needed to start all over again living a new life with dementia

This new consultant told us to go to the local Alzheimer’s Society office where we would get all of the support and advice needed to get us through the minefield of dementia services. From here I became a volunteer with the Society, and spent a long time travelling around the UK doing talks about living well with Lewy body dementia, and this was something that was unexpected.

This led to my proudest moment with the Alzheimer’s Society , the day when I was asked to speak in Westminster at the launch of the Governments Cross Party Group on Dementia, something I look back with immense pride.

Speaking about this illness has also I feel helped my try to remove the stigma we come across with dementia, each day. The more we speak about it the quicker we remove the stigma  

However looking back to when I was working I found it difficult to speak in large committees let alone rooms with a large audience, and yet for some reason I was now enjoying doing something alien and was getting started on a totally new life helping others. How this can happen I simply don’t understand. 

I was also given a lot of support and help by my wife and daughter, both of whom would not let me sit and worry about what may or may not be coming in the future

My Consultant also gave me some advice to help me get started on my own. One was to write my own life story, as a way of keeping active, because by this stage I was starting to struggle to write and had problems using my computer.

This also helped others including my family and grandchildren to understand who I was and where I came from as much of my early life was unknown even to my wife. At first I found this very hard, especially when trying to remember things from the past, but eventually it became easier, and started to take over my life.

Another thing I was told to do was to write a diary, as I was having problems with very graphic nightmares during the night. The idea was that I could keep this diary explaining what was happening, in the hope that something would come out of this in the way of an explanation.

 I must have been slightly naive at first because I chose an online blog, not thinking that anyone would be looking let alone read it, but I got a shock after many months, when I found a button which said audience, and when I looked it was being read around the world. On one particularly bad day, I pressed the wrong button and deleted the whole blog, something which was devastating.

But I was lucky because all of the pages had been written in WORD, before being posted on the blog. So I had two choices either forget it or start again

I chose the second as I had got so much out of doing this blog, and not just that but other people had thanked me because they had learnt so much about this illness through me writing my own problems down

Since then I have never looked back, and today it has been read by over 38,000 people in 104 countries, something which is quite humbling, but if  am helping others I have achieved more that I set out to do.

I am also very proud to help out at local Universities, where I speak to graduate nurses etc, about my illness, in the hope that they will be able to have a better understanding of dementia, and learn to treat us with the same dignity and respect that they would expect from others   

I have heard many people say that they suffer from this illness, but I don’t think that is the right words to use. Yes I struggle with this, but that’s because I am losing control over everything I have learnt throughout my life, but to me that’s totally different from suffering from dementia, as I am not in pain.

Through working with charities like the Alzheimer’s society and writing my blog, I have learnt to adjust and live well with this illness, but perhaps I had the right support and help in the first place, and this has stayed with me throughout my illness, and meeting likeminded people on my travels has made a vast difference  

I still hang on to my favourite hobby of photography which works well on good days,  but it’s a learning curve and it’s amazing how many people with this illness live that hobby as they really feel as if they can achieve something

My advice to anyone getting a diagnosis of dementia, no matter which type, is to go out and enjoy life while you can, and remember that no two people are the same or go through the illness with the same problems or symptoms.

If you are diagnosed early enough, take each day as it comes and like me try to do something new, you may fail, but you may get a nice surprise



This is the next in a series of articles about living with dementia. Please follow: @Memory_Moments to keep posted as they appear. Also previous articles are available on the website in the news section.

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