The Fight Dementia National Campaign which had a focus on younger onset dementia, awareness and funding has also continued for me. I recently spoke at the ‘March on Dementia’ campaign in Canberra, have spoken at several service provider group forums and training sessions, and just recently as a guest speaker at the WordCamp Gold Coast 2011 conference. There I shared my personal story of living with dementia and how I use it as motivation to live a fuller life. I talked about how blogging helps me to capture memories, and how it is becoming a personal history file, by way of words and stories embodying feelings and emotions. Using WordPress to blog and to capture my memories has now become a significant tool in managing this disease. My blog has become the journal of my life, my thoughts and my activities, ensuring my memories are retained, not only for my children later on, but for me right now. Other social media like Facebook and twitter has become important too, as they offer other social connections and ways to record my world. All of them also have photographs, of people and events and activities, offering me yet another way to recall my life.
Interestingly, the word Dementia is taken from Latin, originally meaning “madness”; no wonder we struggle against the myths! And so, we are regularly defined by the symptoms of our disease – forgetful, confused, aggressive, odd behaviour, absconders or refusing to communicate, rather than the people we still are… mothers, fathers, lovers, daughters, wives, husbands, employees, bloggers… it is a tragedy that so many just see our
deficits. I read then I forget… I read then I forget… I read, I take notes, and then I forget… I blog, and it is always there. Computers and blogging have become my best friends as they constantly command my attention, edit for me, and perhaps more importantly push my brain to work hard every time I connect with them.
I wrote in 2008 that Dementia represented the end of dreaming, a long and unforgiving one way odyssey into obscurity, clouded in a thick and unforgiving fog. For me, blogging has brought back the dreaming. It inspires me to write more, creating a repertoire of my memories and personal history files, ensuring I leave some sort of record or legacy for my children and husband to recall who I was and what I thought about. The excitement I felt with my first subscriber… and every time I get a new one, or some other feedback about something you have read… that I have written… something that also had meaning for others, or helped change their world in some small way, encourages me to keep going. It empowers me to rise above dementia and stay inspired and alive and I am certain it helps with neuroplasticity and creates new pathways for my brain to continue functioning.
I have always used the analogy of the dementors from the Harry Potter series to represent
how it feels having dementia, as if someone is sucking out my soul. Whilst working on my presentation to WordCamp Gold Coast 2011, a conference I attended recently, I decided to look up what the Harry Potter site says of the dementors… A Dementor is a Dark creature, considered one of the foulest to inhabit the world. Dementors feed off human happiness, and thus cause depression and despair to anyone near them. They can also consume a person’s soul, leaving their victims in a permanent vegetative, and thus are often
referred to as “soul-sucking fiends” and are known to leave a person as an “empty-shell”. For me, this says it all. WordPress and blogging is helping to restore that empty shell, as my written words are not only a record, but a window into my soul for me and
for my loved ones, and a way of refilling the empty shell. It has helped put the happiness back into my soul, and remove some of the despair.
Blogging on WordPress has also opened up a vibrant channel of dialogue and communication between my close family and friends as they can read what is I’m thinking or have been up to, whereas if they wait to ask me the next time we meet, I will have forgotten. It has given me a global audience, and therefore a global voice in my goal to bring about change. Twitter, Facebook and other social media sites help with this too, even though the challenge of using them is increasing. With WordPress, the usual start to
my blog is to watch a tutorial… often the same one every day. I love the tutorials, although forgetting the basic stuff frustrates the hell out of me. The researchers are saying that learning and memory are very dependent on brain plasticity, and learning and exercise increase the production of new neurons, which is why I choose to focus on my own brain plasticity.
I manage my health with a regime of Transcendental Meditation, prayer, self-hypnosis, exercise and stretching, high level learning, positive thinking, massage, acupuncture,
reflexology and a healthy diet. The other keys for me are to have as much fun as possible, and try to live in denial. And then I started blogging. This was as initially from wanting to share my world with friends, inspired by the movie Julia and Julie, and as a way to try to discipline myself to write about my life and this journey. Blogging pushed me beyond reaching out to health care service providers, motivated me to speak at the recent WordCamp Gold Coast conference, which in turn has shown me a new way to share my story with an even wider audience, thereby changing perceptions and destroying some of the stigma and myths about dementia. I am working as a consultant with a number of service provider groups helping them to improve aged and dementia care; I am collaborating with a theatre group to write a play about younger onset dementia. I am working on an education pack for children, and blogging is something I want to bring into
this. My performance at the 2012 Adelaide Fringe is in progress. Without the diagnosis of dementia, I would never have become involved in some of these exciting and innovative things, and in all seriousness, blogging has become a significant tool in sustaining my life. One brilliant ripple effect to evolve from this conference is meeting with a number of IT friends, who are now interested in collaborating with me to develop WordPress further to
help those of us with dementia to better manage our lives. Troy Dean from Video User Manuals (see http://www.videousermanuals.com/ and http://tontodigital.com.au/) is
working on this as I write. It is rewarding and exciting to think about what is evolving.