Still Looking! Lost on my own…



I have been diagnosed with dementia. I’m very aware that I have these growing symptoms that together are called dementia. At the moment I live alone and independently. The diagnosis, means that there is no care in terms of treatment, so how I accept this, how I cope with it, or the choices I make in regarding my future… is up to me! It would be easy to go along the lines of the Dementia Clinic and accept the negative outcome as inevitable, but that is just not me! I have one shot, as far as I know, at this life and I’m not going to waste it by letting something take it from me. It’s mine and I intend to live it. So, in difference to the so called norm, I am Living with Dementia. As I’ve said many times, by how I live my life, I intend to slow, stop and hopefully reverse this monster. No one has told me that it cannot be done! Although the look of no hope seems prevalent when talking to these so called experts, that does nothing for me. They may not have hope, but I do… what else is there?


Now, I’m still looking for others that are like me and I can’t believe that, World wide, I’m the only person living like this. I want to produce a questionnaire, a simple form that with a few questions I can start to build a group of like minded and demented souls, that intend to live with their dementia and would like to share that knowledge, for the benefit of all, those with and those that are surely going to be seeing the signs.


You hear this figure about dementia, so many million now and so many more in the next few years, but what does that really mean? Since being told I have dementia, I have come to realise that there seems to be two sides to dementia. Firstly, there are those that have the signs and symptoms of so called dementia, but are living relatively normal lives, in their world. I would say I’m in that group. Secondly, there are those that have signs and symptoms that are so severe that they don’t really know how to cope and need care all the time to survive.


The first group still have a functioning brain, in that they still have enough brain cells, to function relatively normally. The second group, are at a point where there are not enough brain cells to function. It is this tipping point, when the number of brain cells drop below what is required to function independently, that I am focusing my interest. Research is strongly suggesting that what we do has a major impact on our brains health, regeneration, functioning ability and ability to make new connections. If this is possible, then I hope never to reach that tipping point.


I want to start the question simply:

  • Do you have signs and symptoms that are attributed to Dementia?
  • Have you been diagnosed with some form of Dementia?… Type to be stated.
  • Are you aware of having these signs and symptoms?
  • Do you live independently… not necessarily alone, but functioning daily without continual care. I suppose I would say that most individuals living as couples, families etc, still live independently.
  • Do you think you will die because of this?
  • Are you doing anything different in your life to address the signs and symptoms of your dementia?

As you can see, this can be come quite complicated, so I need help with question ideas, suggestion in regard to trying to build this group of individuals living with dementia.


I’ve grown up with the internet age and quite happy with technology. I think most people of my age are too. This seems to be one of those dilemmas, to help, share and be involved in this project, you have to be happy being online and all that goes with it. I suppose, this then could be a good indicator of your stage of dementia, but obviously not the only factor!


I hope there are others out there that want to be involved? I’ve set a year of my life to this project and it is already April. I have found only three people that are like me in terms of living with their particular dementia.


How do I get my message out there?

I need help?

Please comment on anything I have said, or if you have any suggestions, ideas or something that you do and would like to share, then please fill in the form below and Click Send. It will come straight to me. Thank You!

#dementia #memory #alzheimers #senior #elderly #toolate

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