Friday, 18 November 2016

Change of Diagnosis

I have changed the title of this blog as I will explain in this post 


Back in 2004 I was diagnosed as having early onset Lewy Body Dementia  and then lost my job as an Electrical  engineer, because I forgot how to do it
I then moved home to the North East, to live in the family home which was now empty.
Within three months of moving, the original hospital in the South of England had lost all of my notes, and after waiting 9 months for them to turn up, my new consultant decided that there was no other option but to do the whole diagnosis process all over again

This took another 9 months to sort out, but I think the new consultant just wanted to make sure that she got the correct diagnosis

I had been given letters from my original family doctor and neurology  consultants explaining my diagnosis

After the second diagnosis had been completed in late 2005,  and the diagnosis of early onset Lewy Body Dementia had been confirmed, I managed to get a grip on my life and managed to move on with enjoying what was left of my life.

However the new hospital I was at started to change consultants, and in the end, I  ended up with a very young consultant,  who decided that I had not deteriorated fast enough, and therefore did not have lewy Body Dementia

She refused to listen to anything that was said, and even rubbished the two previous sets of diagnosis which had been done by top consultants

In the end I left in tears after she thought it was funny or lies, that  I could not remember how to do  my job as an Electrical engineer. 

She said that it was nothing more than Mild Cognitive Impairment and I should accept it.

But how do you accept that two sets of Diagnosis were wrong, and I was living what felt like a nightmare or  it was  a lie.

I personally do not think anyone would be so stupid as to try to say they had an illness like dementia if they did not have it

We then asked for a second opinion at a different hospital, and after a while we got an appointment

After seeing a different consultant it was stated that it could have been a slow burning form of lewy Body Dementia, and things were getting worse slower than normal

But we were told to use the term of "Mild Cognitive Impairment" until things got sorted out properly

As it was pointed out, this meant that I did not have to disclose it for travel insurance, because it was not as bad as dementia

As we all know those with any illness like dementia are hit hard when it comes to travel insurance so this was good to hear

While I can accept that, I still find it hard to accept that two consultants got a diagnosis wrong.

However I am still living with the same symptoms and problems as I had in the first place, so nothing has changed

These days I am struggling to use my camera properly which is upsetting, but I am gradually accepting that my diagnosis has changed and life must go on

However as many people have said, there is nothing mild about Mild Cognitive Impairment, because it can be very distressing when you forget how to do the things you have done for years

But this has all taken a back seat at present as my recurring chest infections got to the stage where I was sent to see a chest consultant, after  being ill quite a lot

What I was told was COPD after years of chest problems since early childhood is now Bronchiectasis.

Graduate nurses and dementia

This week we have another three morning sessions talking to graduate nurses at Northumbria University, about coping with dementia. I say &q...