Rant Wednesday

So the challenges of my Dementia continues to increase.

The foggy head since before Christmas is now compounded by increased tiredness and fatigue.

Hours into days, days into weeks

A side effect of this has been the increasing challenge to write these articles.

Normally ideas would come along and gradually over days form into an article but there may be nothing there but silence.

I peer into my thoughts and find nothing but the whiteness of the fog all around a bit like being in a soundproof room and shutting the door.

There was a time when thoughts and music would be running round in my head incessantly but for now there is silence.

Information goes in but disappears through the fog quickly forgotten.

If I don’t write it down, it is soon forgotten.

People say “I’ve already told you that” or *you don’t look like you have Dementia”

I try not to look and act like I have Dementia.

To ward off the stigma and maintain my self esteem.

To reassure family and delay the time when my Dementia will severely impact on them.

Yet there is still a lack of understanding of a diagnosis of Dementia at an earlier stage.

Still there is the stigma.

Still there is the ignorance.

Still there is the questioning.

Still the comments on social media (again this morning)

People receiving a diagnosis of Cancer do not all get diagnosed at stage 4.

People with Heart Failure do not continually have Heart Attacks.

Many people, following a Stroke, continue to live their lives within reduced limits.

How can someone from Old Age Psychiatry question the diagnosis of people under 65.

There is a big difference between the early stage and Palliative stage.

The younger Doctors understand the difference, older ones are stuck with 40 year old attitudes.

How can I travel alone, they ask

I am not hunched over, drooling and chemically restrained yet.

To travel takes a lot of planning with technology as my aid.

Assistance from the organisation I am travelling to.

It is my right to do so.

I have the right to make mistakes, even if they have negative consequences.

I have the right to take part in public and political life.

I refuse to sit by and watch the rights of people with Dementia and other disabilities being eroded.

I’m damned if I am going to sit at home, sat in the corner, hunched over and drooling, deteriorating and becoming a burden to my loved ones and society.

I’m damned if ignorance is going to stop me having some sort of life, to take part in my community and family life

I’m damned if the discrimination, defamation, libel and slander of others is going to submit me to a life of rightsless abuse.

I am not a burden.

I do not choose to have Dementia

I am a human being, diagnosed not by guess work or Munchausen, but by a Neurologist and Neuropsychologist, evidenced by an MRI and  SPECT Scan which clearly shows my Dementia.



 

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