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dementia by definition might be wrong
Posted: Thursday, January 25, 2018 6:10 AM
Joined: 9/12/2013
Posts: 3053

Alzheimer's & Dementia

"The word dementia means deprived of mind. It is a catchall term that covers memory loss, confusion, changes in personality, a decline in thinking skills, and dwindling ability to perform everyday activities."


I am having some health problems other than Alzheimer's and want to get out last messages.

Mind and brain are not one thing. Memory loss and the idea we are "deprived of mind" I think poisons the well.

If we actually lost our memories they could not suddenly be recalled when given CBD or at end of life. We lose the ability to speak our thoughts fast enough for people to listen and like any other terminal illness when we are so weakened we can not speak.

Naming this illness "the loss of mind" poisons the ability to find a treatment or cure. It makes people dismiss you, disregard your wishes and needs and ability to be helpful to others.

Reject the medical views of becoming a zero, a burden to the planet. Every living thing dies, death is essential to life. I wish people would come up with a new name for problems in thinking and collating information.

I love you all so much. Thank you for all the help over the years. I hope to be able to offer insight in my disease as it progresses but if I can not I know others will challenge the medical world and we will unravel the cause and find treatments that work.

this is not the worst disease ever, all terminal experiences have good and bad elements. we are going to help find the answers if we just keep questioning.

Iris L.
Posted: Thursday, January 25, 2018 6:29 PM
Joined: 12/15/2011
Posts: 14829

I agree totally.  We have to be Pioneers in figuring out what works for each of us.  We are not all the same, and there should be no competition.

Iris L.

Lane Simonian
Posted: Thursday, January 25, 2018 11:39 PM
Joined: 12/12/2011
Posts: 4136

You are a wise, brave soul alz+.  I know that you are prepared for wherever things may go, even if most of the rest of us are not. 

I firmly believe as well that memories are not lost, that the mind is not erased, that the person does not disappear in dementia.  No doubt some parts of the brain are damaged, but people can regain some of their memories with various treatments.  Alzheimer's organizations and scientists have created their own reality, their own narrative about this disease that is to put it mildly not beneficial to either caregivers or to people with dementia.  It is such an entrenched perspective that it seems nearly impossible to combat.

I hope that goodbye does not come for a long time to come, but thank you for the encouragement and love that you have so freely given here.  

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