Saturday, January 24, 2009

Diagnosed with Dementia in Indonesia: What LIFE is Like

Hello to my fellow sufferers and care givers of Alzheimer’s / Dementia around the world.

Please let me first introduce myself, my name is Barry, I am a British subject and have now been living in Indonesia with my Indonesian wife for the past 16 years, prior to moving to Indonesia I had been working, living, and traveling around all the countries within the Middle East and Asia which helped me gain a greater understanding of the different Customs, Cultures, and Traditions of the people within the region, in fact I have not lived in my home country for over 26 years.

Four years ago I was diagnosed as having Mixed Dementia with Alzheimer’s which completely turned my world up side down as all of a sudden not only did I have to fight against the illness I also had to fight against the fears, misconceptions, and stigma from people around me as I live in a small traditional farming village and apart from my doctor neurologist there is no understanding of dementia here at all, at first even my wife, stepdaughter, and her family had many problems trying to understand and come to terms with my illness.

Although I have lived here for many years, the differences in cultures, customs, and traditions started to become more difficult and confusing for me as I was continuously being told my illness is a curse or black magic put upon me and at one point my wife even had spiritual men come to our house to have the so called devil cast out of me! Such are the superstitions in this part of the world.

There is an Alzheimer’s society in Indonesia but its focus seems to be on 2 major Cities and doesn’t reach to where I live in the provinces so it became necessary for me to do things and motivate myself of my own back as I don’t have the benefit of any support groups or day centers for either myself or my wife I’m in a completely go it alone situation, so I made contact with the Alzheimer’s Forum in the UK via there website which was a turning point for me as I had people I could correspond with that had a positive understanding of Alzheimer’s / dementia.

Since then I haven’t looked back and have become a regular contributor of articles to the Alzheimer’s Forum website, the website is somewhat unique as its “Produced by and for sufferers of dementia” and a place where sufferers can freely express there own feelings, thoughts, and apprehensions of our illness to share with people around the world who are in a similar situation, I myself use the website as a means of trying to set aside peoples misconceptions of the condition and in broadening awareness of the illness particularly in the Far East countries.

At this time I am trying to make people here aware of Alzheimer’s / dementia and the fact that it’s an illness of body and mind and not a mythical curse or a deadly infectious disease whereby friends and other people run away from us in fright.

My own approach here in Indonesia is what I call a ‘Bottom up approach’ by talking to young medical and other university students and to young parents as they have access and know how to use computers either at home or via a internet café and thus gain a better understanding of the illness and thereby educate others and broaden the awareness of dementia for future generations.

Such is my story at this time


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