Sunday, 23 March 2014

Diagnosis of Dementia

When you go through the diagnosis procedure for dementia,  it can be the most distressing thing you may ever experience,  depending on the consultant.


I was diagnosed twice, but the first was the worst thing I could ever imagine, as the consultant did not want to be there at all.


I was using a Dictaphone at the time so that I could remember what was being said, but he kept forgetting to arrange scans and tests, and would get, annoyed when I returned because the results were not there.


This had been set up by my employers the University, and my wife was only allowed in at certain times as it was classed as confidential, and this made matters much worse for me, as I did not have much support.


As I was working at the University at the time, and the doctors got so annoyed that they demanded I had a new consultant, after which things got slightly better.

Eventually this lead to my diagnosis of Lewy Body Dementia, although we got no support and I was not offered medication.

I was told to come back in 9 months, and as my dear wife has said on many occasions, a lady could go away and return with  a baby?.  "Not for me"


However this process was also made worse by a clinical psychologist, who said that I was just lazy and did not even try to do the tests properly, and I left at the end of a long 6 hour session in tears.

 I had gone from being an engineer doing electrical work along with two large budgets, to someone who was counting on my fingers, and to this day my mental arithmetic is rubbish and embarrassing,  yet he could not see that I was struggling.


I think my wife was close to thumping this man, but she did not.


After this I lost my job as an engineer,

A few days later my mother died, and it was decided by the family that we should move back to the family home in the North East of England.


We brought hospital and doctors letters with us explaining the whole process I had gone through, hoping that would be the end of the diagnosis experience, but we then heard that the original hospital had lost my notes.


After waiting 6 months I was told to my horror, that I would have to go through the diagnosis procedure all over again. 


However the new consultant was a lady, and that changed things completely, as the diagnosis was totally different and dementia friendly experience. A better experience all round if I dare call it that.

Sadly this consultant retired to go and climb the Himalayan mountains, so I never saw her again. 

So this whole process can be distressing for those going through it.



Many people still go through life having their diagnosis questioned by other professionals, who may know something about dementia, but do they in all reality know all there is to know about each type.


As well as this we all find that we lose friends, many of whom think that the illness is contagious, or they simply don't want anyone with that illness in their company.

Yes I can be unpredictable, simply because I struggle to express myself at times and panic

Either the wrong words come out, or I get agitated trying to explain myself  on occasion s,  but that's this horrible illness.


When I am asked to speak at functions, I spend so much time in planning what I am going to say, so  that I feel more in control


Yet many so called experts in dementia charities, think we can turn up and give a talk on the spur of the moment, so do they really understand this illness themselves.


However I enjoy my life and have enjoyed giving presentations around the UK, something which has given me a good reason to fight the illness, and long may it last.

Because others need to know what life is like when we have dementia, and if giving these talks helps them to understand dementia, then we must carry on doing it as long as we can.

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