Trying to make the best out of life

Trying to get the best out of living with Lewy Body Dementia/ Parkinsons, along with comorbidities which make life so much harder, is becoming more and more difficult to get through

These days I struggle to write with a pen, so I need to write using a keyboard and sometimes voice-to-text software, in the hope of making myself understood while fighting to remain active  

I used to write a blog, which is now used by various universities as a teaching tool, l looking at life with  Dementia, but although I gave this up years ago,  it is still doing well, so it seems a lot of people are using it regularly 

I understand that the brain is a very complex thing, and when things go wrong it's hard for us living with the illness, to work out exactly what is going on, and whether it's an isolated problem or something connected to the brain.

This may be simple, but when people like opticians and audiologists don't understand the brain let alone a neurological illness life as we know it becomes more difficult.

Although I have struggled on and off over the last 20/30 years or so with Double vision and hearing loss, in all honesty, I never ever considered this to be a brain problem until I spoke to someone about it, then it all started to make sense. 

it now appears that the double vision may be caused by my right eye doing its own thing, and these days I tend to go totally deaf in my right ear, and as someone said this could be linked to the opposite side of the brain. 

This may also explain the weakness in my right arm and leg I guess.

I have done exercises on my legs and arms to get some of the strength back but I still have problems, which may last for the rest of my life.

However, since being referred to a new ophthalolgist recently, I have found life a little easier, because this gentleman knew about neurological illness, managed to sort out my double vision, and also helped with my problems with glare from shop spotlights along with bicycle, bus and car headlights which seem to be very bright these days.

In my new glasses, he fitted a slight tint which cut out most of this problem, and the lenses return to normal in daylight. 

This was something other ophthomologists refused to do due to my Lewy Body Dementia/Parkinsons'.

However, when I was under investigation for my hearing loss and balance at a local hospital, a lady in a very flowery dress could not understand why I was struggling to cope with looking at her, because the patterns were causing havoc with my brain and eyesight. 

So this proves a lot of work still needs to be done in training NHS staff to understand neurological illnesses because a normal marble floor pattern can cause havoc to many of us.