I was diagnosed with Young Onset Alzheimers on the 31 st July 2014. I used to be a very private person before diagnosed but was so shocked at the lack of awareness and understanding that I now shout from the rooftops at every opportunity to raise awareness and make it ‘normal’
Before dementia I’d never ‘tweeted’, ‘blogged’ or ‘facebooked’ - social media was another world, however my blog came about as friends stopped contacting me. I decided that I needed a journal to replace my memory for all the things I was involved with so I used it also to show friends that my intellect was still in tact. There are bits of my brain that don’t function as they use to but when I type it’s as though Alzheimers has never entered my life – that part of my brain isn’t broken. This brought all those friends back into the fold again. It was fear and ignorance that stopped them communicating with me. When people hear of dementia they think of the late stages but it has to start somewhere and I’m at the start of my journey.
Twitter has been a great way of communicating with people that I would otherwise not had access to. It enables me to be in touch with healthcare professionals but more importantly, enables them to get in touch with me and hear my views and opinions. I may have dementia but I still have opinions and views that are of value to professionals.
There is currently no cure and without willing volunteers they will remain no cure. We have to have more than simply hoping or wishing we don’t get dementia and this can only be achieved through research. Research doesn’t just revolve around drugs trials as social and technical trials are equally important.
Taking part in research makes you feel valued which in turn improves your sense of well being. You’re contributing to improving the lives of people in the future – you could be helping your children. So when people ask me “Why should I be involved in research?” I say to them, ‘Why not? What have you got to lose,yet you’ve an awful lot to gain”
Feel free to follow me on my journey through my blog www.whichmeamitoday.wordpress.com