As someone who was diagnosed twice with having Lewy Body Dementia, and then having it changed to Mild Cognitive Impairment, before being reversed again, I find life can be very challenging at times.
As one family doctor told us, it’s all about terms or names, and different doctors or consultants, use different names or terms, for the same illness, and this can lead to the patient becoming very distressed and confused.
But does it matter.
I am the same person with exactly the same symptoms and problems I had before, although these days I struggle more than I did.
I know that my memory can be totally rubbish, and I don’t always see the correct things at times, and I misunderstand what is being said quite a lot.
Other times I say the wrong things which is upsetting when I realise what happened, but I know that there is nothing I can do about it. As everyone keeps telling me, my brain and mouth or eyes are not always working together, so at times, I open my mouth and then cause havoc by saying something I really shouldn’t have said. Most people understand and make allowances, but it’s still very frightenening when it happens.
Yes I get a lot more agitated and annoyed these days, but it’s because things are more difficult to work out, and after being an engineer for 28 years I find this hard to accept.
I have got into trouble on more than one occasion by my wife and family, because I may have a fixed facial expression, or mask. It’s not intended, because I may be struggling to understand what is happening, or trying to work out why I can’t do a simple job. I am not depressed or stressed, it just seems to be something which happens.
This can lead to things becoming distressing, but I have to live with it.
Due to the feeling of exhaustion every day after a slight walk or doing simple tasks, I decided to cut back and now I take things very easy, and think about myself and my family.
Although I used to love going for walks, I don’t enjoy it as much these days, because of the tiredness, and constant dragging of my feet which sometimes causes me to trip up.
But I do feel that we must take each day as it comes, and try to get the best we can out of a bad situation, and even though it’s not easy we have to try, for our families sake as well as our own.
I know that each day can be different, and in some cases things change in one day, and that can be alarming. But it’s a case of trying to keep going, no matter what life throws at me.
I am extremely lucky that my family do so much to help with the jobs I can’t do anymore, and for that I am very grateful
Thank goodness for voice activated software which allowed me to carry on doing this
