Diagnosis and remaining active

After moving back to the North East of England, and then finding my notes had been lost by the previous hospital, I had to be re diagnosed, but this was done in a more patient friendly manner, and I got the same diagnosis results as I had been given earlier of Early Onset Lewy Body Dementia.

I was then told to keep myself busy, remain active and never look back at things I can not longer cope with or do

After a while I found  book in a second hand shop, about Terry Waits captivity in the Middle East.

I had not read anything for some time, as I found it very hard to remember what I had read, and also had problems with words.

But I found this to be a hard and tear jerking book to read

However it made me realise, that while I was not chained up like Terry,  I felt that there were similarities at the time, because I was being help to ransom by an illness that I did not want.

I had lost control over many of my favourite hobbies, and had lost my job because I was classed as unsafe to do it.

My Electrical training was disappearing and even my recent examination papers looked like Chinese and were impossible to understand.

After years of going to church and 10 years in a church choir, I found that I could not recite the Lords Prayer, this was very difficult to cope with, and I thought that I was in an impossible position

When I read a book it was done slowly, so that I could try to understand what it was saying.

But after reading Terry's book I realised that anything was possible, if you have faith in yourself and that little word with a, big meaning "HOPE".

If a man like him could overcome such a traumatic time and fight it by using his brain, then I should at least try it

I struggle trying to do the impossible some days, things like trying to do the jobs I have done for years with out any bother, occasionally I win and manage the the job, other days I simply give up before I get annoyed and frustrated.

I know that I was not chained up in a small cell, without any one to talk to and no books to read, but at times I confess that I felt isolated and alone.

I do feel that Terry proves that it is possible to keep your brain active, even when you are at your lowest point

So with this in mind it proves that if you fight, you can sometimes achieve the impossible and beat the odds.

He also kept his sense of humour through this time, something that I find staggering, and I do wonder just how he did it

I have always tried to see the funny side of life, but sometimes these days it gets me into trouble, because I sometimes misinterpret things at times.

I have also been accused of belittling people with the illness, simply by laughing at my own mistakes

But my answer to this is this, If I did not laugh at my mistakes, I would cry at the total frustration of living with this illness

Never give in, but fight this in any way you can.


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I always say that we may have this illness, but we are all so different.

This is my own daily problems, but I would gladly share anyone elses, if they send them in,

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