Alive and still active

A recent advert from the Alzheimers Society telling us that people with dementia supposedly keep dying

over and over again, is in many peoples views insulting and so negative

This is because it is well known that if you remain active, you live well with the illness.

In the words of my Consultant, if you cannot do something one day, leave it till the next day, if you cannot do it then, try again on the third day. If that fails forget it and move on, otherwise I would get depressed and that would only make things worse

Yes we may lose the ability to do certain things that were easy in the past, but thats not the end of it. I lost many hobbys because they became dangerous, and although that was upsetting, i did not die?

I often wonder who writes these adverts especially this one, because its done more harm than enough and has upset quite a lot of people because its so negative

I guess if you dont have the support of family and good friends, you may feel upset and isolated, but that again is not dying

Many years ago as one of the Alzheimers Societies Ambassadors, along with another Ambassador Peter Ashley were asked to help write a booklet on Lewy Body Dementia, which then got printed.

The next we heard of it, was that it had been scrapped because in the view of one of their proof editors,

it was too graphic, because we had mentioned the graphic nightmares which are quite common in this illness.

But the person who objected had no idea about the illness, but rather than discussing it, they had it scrapped

Yet they have the nerve to say people with dementia keep dying again and again

pneumonia and dementia

When I was working as a university college engineer, as i had electrical experience, but then i became ill,

and was taken to hospital with Pneumonia, something which was hard to cope with

It was at the time thought that i had a form of bacterial pneumonia but the tests were never completed, as the hospital was under a Government revue as doctors had complained about the state of the hospital then it was then closed down as the hospital was unfit for respiratory illness,

However this was the start of things going away from me, as I forgot how to do my electrical training and this hit hard and had me in tears, but that was only the start 

Then one day my daughter rang me and i did not know who she was, which was terrifying afterwards, as it was for her as we were very close, and still are

I had previously completed a new examination on the Electrical regulations, but nothing made sense any more.

I used to do estimates for all of the maintenance work in the college, yet I was having to count on my fingers as the calculator didn't make sense anymore

After a few more things went wrong I went to see the university medical department who sent me to see a neurologist for tests

I was sent to see a clinical psychologist who after 5 hours of tests said i was just lazy and not trying, after which my wife hit the roof and we went home where she rang the university medical department doctor who was livid, because she had told me to record all meetings and medical appointments, as my memory was getting worse, but after listening to the recordings she left the room and rang the clinical psychologist for an apology

No one seemed to understand what had happened to my brain or memory and it was very hard, especially when i left for work and forgot where i was going

Eventually I was told i had Alzheimer's, which was then changed to Lewy Body Dementia

Now it seems that researchers have found a link between pneumonia and neurological problems, which may have been the answer because this in turn causes or can cause Dementia as well as other things

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Dementia Friends

Years ago many people went on Dementia Friends training days, which were in some cases helpful to the people with no experience of the illness

 Yet some of us living with the illness were insulted by the trainers from the Alzhiemers Sociéty,  mainly because they themselves were not trained properly in the first place. 

It's all well, and good having training days but if the staff involved don't understand that dementia is a vast field and not all, dementias are the same, with the same symptoms and problems 

Like others when I tried to point this out,  I was told to sit down and shut up because I didn't know what I was talking about, something which not only annoyed me but many others in the room who knew me.  

At the end of the course someone tried to explain this to the so called trainers, but they like me were ignored. 

This proves the point that if the staff ignore those living with the illness,  they themselves will be made look silly 

In this case it made the Alzheimers Society look extremely silly,  be cause there or reported to be over 100 variations of dementia, all with different symptoms and problems. No one size fits all