WELCOME to my blog. I’m writing it because I want others to know that although a diagnosis of Dementia is probably the last thing that you’ll want to hear, sometimes it’s a relief to have a name for what is happening to you. More than that, it’s a time to have a look at what you’ve already been doing, and decide if there may be other things that you still want to have a go at. Set goals; learn something new; socialise; and do things that are positive to your health. You probably won’t always achieve it all. (I don’t, and I take each moment and each day and do the best that I can) But make little changes that work for you. Ask for and accept the help that you’ll need at different times. You still are a person, not just a statistic. I hope that reading my blog gives you the incentive to make a few changes that may make a difference to how you manage your Dementia. Or, if you are a Carer or family member of someone living with Dementia, then maybe you will also find some of my comments of interest. You are not alone.
If you need someone to talk to or information or advice about Dementia, ring Alzheimer’s Australia’s Hotline number: 1800 100 500, or go to: https://fightdementia.org.au
thank you for reading my story 🙂
I didn’t always feel this positive about how my life was unfolding.
I’d seen my mum and two of her sisters deteriorate dramatically with Alzheimer’s Disease and I was fearful of how I might become, and also of what others may think and their reactions to my diagnosis.
I have Younger Onset Dementia (YOD), named simply because I was under the age of 65 years of age at the time of my diagnosis. It’s familial Alzheimer’s Disease (AD), a rare genetic form. Some put the figure to be only about 100 people of the Australian population. For further information, see link:
I had to finish work in 2008 because I couldn’t plan; couldn’t organise myself let alone the workplace; couldn’t solve complex problems, or make difficult decisions. I was diagnosed with YOD in June 2010 at the age of 59. The road to diagnosis was long and at times tough, and I chose for a number of reasons not to share this diagnosis with many people….. only a few close family and friends knew and they were very supportive.
I spent the next 4 years feeling somewhat alone, with little hope. My life was defined in a negative way by my medical condition!!!
However, in June 2014 I went to a fundraising event for Alzheimer’s Australia (Qld) and was surrounded throughout the evening, with positive comments by everyone present. I met Ita Buttrose who was the then National President, and a great advocate for the support and acknowledgement of, the needs of people with Alzheimer’s Disease. She is so inspiring.
I also met Mary Smith from Aurora Adventures for the first time. I was planning to do a cycle charity ride through Vietnam/Cambodia in November 2014, to raise awareness about, and funds for Alzheimer’s Disease. That night, Aurora Adventures announced that they would fully sponsor me in the Cycle Challenge. I was stunned. People who I’d only just met, had a belief in me.
It had been a long time since I’d felt more than ….. “just Dementia.”
For the next 4 days I said to my partner Glenys, “I can do this. I can live well with Dementia.”
And my life has turned around……..