Saturday, 2 April 2016

Remaining positive

When you have something like Lewy Body Dementia, or Parkinson's, you need to try to remain positive even when things are seemingly dropping apart.

Things like trying to find the right word can be very frustrating at times, and there have been many occasions when I have had to rewrite something, simply because  I could not find the right word, or even spell it. 

On my bad days I use Dragon 10 voice activated software I my computer, and that is helpful, although it was stressful setting it up.

However these days I try to break a  word down in an attempt to write it, and hope that spell check can correct it. 

But there are many other problems which can caused untold stress, usually at times we can do well without it. 

When I was working as an engineer, I used to be good at drawing and sketching, which was handy if I needed to rebuild something. Now that's all gone, and no matter what I do I just cannot copy something like I used to do. 

I can start drawing something, but then I need to go back again, and again to correct it or change parts just to get there. 
I find this upsetting because I loved drawing and sketching as a hobby.

My coordination has also gone these days, and I get upset with things like simple shopping bags. 
Just trying to get hold of the correct parts while hanging onto my walking stick, can be stressful 

 I gave up DIY projects because my coordination problems caused accidents at home, so it was decided that it was better to let things go completely,  rather than end up in hospital. 

This first started a few years ago,  when I was working, and being on call 24 hours a day, I would retire to my shed and use my wood turning lathe, something I really loved doing, until one day when things started to go wrong.
As an engineer I was responsible for ensuring that all machines had emergency switches fitted so that a machine could be stopped in a hurry, as and when needed. 

This wood turning lathe had three extra switches on it for emergencies. But this day I tried to stop the machine be grabbing the high speed revolving wood block. 

This ended up with some very badly bruised fingers and hands. Luckily for me nothing was broken or taken off, but it was a warning that something was wrong. 

After one more attempt at using the lathe it was decided by my family, that it had to be dismantled in an attempt to stop me using it.

But as the Consultant in the North East said one day. If something you have done for years fails, leave it and try another day. 
If it fails on the second day leave it and try on a better day.
If it fails on the third attempt, leave well alone, otherwise it will cause untold stress. 

Try to do something new, instead. 

This always stuck in my memory and has helped me to move on when hobbies fail.

However we all know that moving on is not always easy or stress free. 

While I was working I also gave up driving, after ending up driving off the road one day. 
Nothing was damaged, but I had no idea what had happened, but I realised that my brain was no longer in control.

A few years later when I was on rivastigmine,  I went back to driving, because I felt safer and more in control  than many of the drivers on the roads. But this has not stopped completely because of eyesight problems which are terrible on some days

I know that I have had eye tests where nothing was found, so it's all down to the brain not getting the right signals from the eyes. But I could not live with the thought of killing someone because I was unsafe to drive, so to me this time it's far better to stop altogether until my eyes are sorted out.

But if it comes to it, then my driving days are gone and that's it. 

I can always get the bus, yes it's slower, but at least someone else is driving. 

If like my you struggle typing on your computer at times, try to use voice activated software, it's amazing. 







Information pack for diagnosis of dementia

The other day I found this old 2006 blog about the information pack we were given, after my diagnosis of Lewy Body Dementia in County Durham...