Well, My UnseenDisappearing World, my personal story of living with younger onset dementia has and is being presented all over the place. The title for it is still applicable, but it seems my world is expanding at a rate that will mean I have to write a new story, as they do with movies, a version 2, an update of the dementia train ride! Yesterday I was asked to consider being the guest speaker at a Dementia Network forum, called The Younger Person with Dementia and their Carers in Canberra in June 2012. Then at 6am today, an email was sent requesting I consider speaking at the Alzheimer’s New Zealand biennial International Conference in May 2012, called Future Faces of Dementia. They said, we are looking for a very special person to join our key note speakers, who will represent some of the most respected members of the global dementia community, and we would very much like you to be this person. Your story would add so much to our conference, both to those entrusted with the care of people with dementia as well as those who have this disease. I would also think that the sharing of your experiences would have an impact on the policy makers and political and sector figureheads who will be attending this conference.

I don’t feel overly special, but I do feel honoured and privileged to have been asked to fill these shoes, and suspect it is going to be a mountain I will have to work very hard to climb, but with support and love, I am sure I can do it. It seems the universe is pushing me to speak out, as I had planned to be in England and Europe for most of May and June next year, then we changed plans in order to attend the Alzheimer’s Disease International Conference in London in March. This of course, leaves me free to go to New Zealand and Canberra to speak at their events. My newly acquired role as advocate and activist for dementia is widening, and the global dementia community is opening up to me. My husband is being dragged along for the ride, and although often very reticent to be in the spotlight, and also very protective of me and not wanting me to overdo it, he suppports me and believes this is my Purpose, and that I must speak out, while I still can. I’m making changes in my life that are profound. For example, I have stopped some volunteering and resigned from some committees, that do not fit the bigger picture of my goals, those that either sap my energy or time too much, or, do not serve my Purpose.

My life has always been about helping others, but some of the time, to my personal detriment. I do wonder, has it taken the diagnosis of dementia to make me look within, so that I am fulfilled too? It is an interesting question to think about! My request to my readers is that you  send me questions you would like answered about living with or caring for someone with dementia, and send any relevant information you feel appropriate to my speaking out. I want to represent us all, in a way that speaks with honesty and integrity, and in a way that can and will bring about change. Change in policy, service provision, the health care sector, public awareness, perceptions and reduced stigma. It is a huge goal, but one I will work on until I cannot. As my world disappears, it is also expanding and the dementia train is moving at a speed I have no control over. It is scary and exciting, all in the same breath, and, breath-taking in its power. It is with love and honesty that I will attempt to run this race, and the next version of my story is already on its way.