Seeing the obvious and sometimes things which may not be there

November 2018

Over the years I have struggled with seeing things, some of which may or may not be real.

This can be upsetting to those people living with Lewy Body Dementia, but it can also be upsetting for those caring for these people, or anyone nearby who does not understand what is happening.

We had a change our carpets at home, because I could often see very large spiders walking across the floor, or sometimes on the wall nearby.

I was never frightened of spiders before, but these days  I really struggle, because in my mind they are real, and they scare me to death. 

I used to throw my slipper at them, but these days, my aim is so bad I am liable to hit the television or worse, my wife. 

The other day I went for a walk round our local park, and saw some boys on the skate boarding ramps, or so I thought. 

When I got round the corner they were not there. I looked all around thinking that they had run off, but there was no sign of them anywhere, and there was no where for them to hide.
There simply is no way three people can simply disappear into thin air like that, although I have had this experience before,  but never understood what was going on

I found this to be upsetting as I was on my own, and could not work out what was happening.

This also left me feeling a little frightened, so I went home again. 

This was at the time I was taking codeine for my back, and I wondered after Christmas, whether it was the codeine which caused this extra problem, because it not recommended. 

I sometimes have to stare at things long enough to work out whether they are real or not,  which is not really good, but sometimes it's my only option.

A dear friend of mine, who also had Lewy Body Dementia, used to see a large green frog, but although his wife said it was not real, he would sit and talk to it on a regular basis. He called it his pet frog. 

Trying to understand whether something is real, or whether it's my brain playing trucks on me is very difficult to cope with.

This can also cause major problems when I am crossing a road, deciding whether I am seeing a car, and if so how far away is it. 

I have been so close to getting run over by a car in the past, and it gets frightening, but I keep going in the hope that it all  changes

I guess the brain is very sensitive, but we take it for granted, until the day it stops working properly.  

Does the Medical Profession really understand Lewy Body Dementa

Thanks to the Speech Notes APP for allowing me to start writing again, as I can talk to my tablet computer, then this sends it all direct to the blog, without the stress of thinking about what I am writing

Thinking about what I want to write, and putting on paper, is difficult these days, but this app has now made life so much easier

Medical Profession, and the lack of knowledge about Lewy Body Dementia

We found this out the hard way, after one young dementia consultant put me on medication to help with my graphic nightmares during the night. 

This was started just before we went on holiday one year. But on the second night, I tried to climb out of the hotel window in the hope of breaking free from this horror. Luckily for me, the window was locked so it did not open, and we were on the third floor of the hotel.

My wife woke up just in time to stop me trying to escape from the window.

As I am living with Lewy Body Dementia, I have always been limited as to what medications I can take and what dose that is limited to.

My wife rang the hospital the next morning and the medication was reduced and then stopped. This was because, this young hospital doctor had put me on something without checking the correct dose I could take with this illness.

However, I have been amazed at how many Doctors and Consultants etc, claim to know all about Lewy Body Dementia, then do something totally stupid.

They think that because they understand one type of dementia, that they know it all, but just how wrong can this be

I was recently seeing a Consultant for lower back pain because we were not sure if it was connected to my osteoarthritis in my hip.

 After another hip injection, I was told that there was nothing that they could do, so I was referred to the pain management clinic, where I saw another specialist, and yes he knew all about Lewy Body dementia, so much so, that he tried to make my wife look silly.

He told me that he was putting me on codeine, to help with the pain. This was supposed to be a low dose but said that the family doctors could raise the level when needed. As this did not help a family doctor told us to raise the level at certain times of the day.

We did not know that this medication was bad for those living with this illness, and neither did he

Eventually, as I was in a lot of pain, my wife got me an appointment to see a chiropractor. After one visit he said that these pain-killers were very bad, and he wanted me off them. However, he soon found the cause of my problems as the pain was coming from trapped nerves in two parts of my back and also realised, that I had a major problem with my jaw which was out of line.

Since seeing him in November, I am off all pain-killers and feel much better. 

I also had a problem with foot drop, which was ignored by the hospital, by this has now nearly gone, apart from when I get very tired.

When I went back to see my Lewy Body Dementia consultant, he was horrified that I had been on Codeine, because it’s not good for people with this illness, because it causes complications, but was pleased that I am now off them.

We then got an appointment at our doctors, where my wife asked if the Codeine could be removed from my repeat prescription, and told them why. 

My wife said they looked puzzled because they knew nothing about this. but after explaining what the consultant had said, they agreed to remove it.

Just after this, I saw an occupational therapist who was attached to the pain management consult, and this started all over again because she refused to believe that these tablets were bad for me, and yes she fully understood Lewy Body Dementia?

All she wanted to do was put me back on them again.

Needless to say that we always check before changing a prescription.

It seems to be a running battle between my wife and those in the medical profession who claim to fully understand this illness, always check with your consultant before taking anything new.

While doctors can not understand everything about Dementia when they leave University, I do feel Lewy Body dementia needs to be more widely taught to medical students in the future

Thank goodness for the Dementia consultants who really know about this illness and its complications

I like many people are extremely lucky to have a brilliant Lewy Body Consultant looking after me, as well a lovely support staff, but many people are not so lucky.
Let us all hope that this changes for the best  in the future