View from inside dementia

Since I was diagnosed as having early onset Lewy Body Dementia, life changed in many ways, so I was perhaps prepared for and many I was not.

I expected life to get much slower, which it did for a while, and then I started doing something unexpected, and that was campaigning, raising awareness and public speaking about my illness.

I say unexpected, simply because I used to be terrified of standing up and speaking in College Meetings, but after the diagnosis it became a natural thing to do, yet I can't explain it.

These days I rarely speak at events, which is odd as I quite enjoyed doing it, but there are many more younger people coming through these days with dementia, so its good to let someone else take the strain.

I never expected things like my coordination and eyesight to go the way they have, but I suppose that's life. I had over a year of eye tests, for my blurred and double vision, and it got distressing as I was fitted with glasses which ended up making things worse.

However I have since learnt that it may not be the eyes but the brain causing the problem, and this is something that many ophthalmologists, don't understand.

Its called, Neurological  Visual Impairment, and has been studied by the Alzheimer's Society, and Alzheimer's Europe along with the Thomas Pocklington Trust.

So through this many things have changed, and my guess is that things will get worse over the next year or so. But I have had a few extra years to get to know my Grandchildren, and also help my wife to get things in order, so she is not left to deal with it all when things get worse.

I know that I have been extremely lucky with my blog which is well read and now used as a teaching tool in Universities.
I will carry on doing this as long as my eyesight holds

I also enjoyed  going to conferences etc, and would have loved to carry on for one more year, but I am now ready to enjoy seeing my family more and doing other things like trying to do water colour painting, and if possible get to grips with my camera.

So my advise to anyone who has just been diagnosed it to get involved with groups, and enjoy life as it comes.

Never give in or sit back thinking of what may be coming, but try to be very positive

Life is for living go for it and enjoy it


  1. So exciting to hear that your blog is being used as a teaching tool. Congratulations! That is wonderful :D


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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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