I repeat: “Please don’t call us sufferers”

During the recent ADI2014 conference, it was apparent the language being used by researchers and other presenters to refer to people with dementia is still very derogatory, stigmatising and discriminatory. Now really, do any of these people look like they are suffering, or like they are  victims?! It looks more to me like we are…

Changing the world

“Never doubt that a small group of thoughtful committed citizens can change the world – indeed it is the only thing that ever does” Margaret Meade The Alzheimer’s Disease International (ADI) conference in London in 2012 is where I met with this group of truly amazing people with dementia, all advocating in their own countries. It…

A metaphorical punch in the face…

This morning my husband and I discussed a few incidents or D-moments that have taken place the last few weeks, which have really knocked him out of his denial bubble. He has subsequently been a little down in the dumps, as he is forced to face what is ahead. Thankfully last night he went out with three mates for their monthly…

Finding a voice for PWD

I’m often challenged by the fact that conferences, seminars, forums or educational programs about dementia, often marketed to people with dementia (PWD), and as events which are inclusive of them, are organised exclusively by people without dementia, and for the most part, without people with dementia as plenary speakers. Many of you know I have regularly railed against…

Dementia and self esteem

Unfortunately, I had low self esteem right into my thirties, like a dark cloud hanging out in the background of my subconscious. I was quite shy as a child, and always wanting approval as we rarely received positive feedback, no matter how well we did at something. My self esteem developed after many years of reading and attending…

Dementia and the downhill slide

The last two weeks we have faced the deaths of two friends, both with younger onset dementia although my dear friend Michael had so many other serious illnesses, thankfully it was right down at the bottom of the ladder of his life. However, for the last few days we have been waiting on the phone call to…

Sunday humour…

I love this picture, and the name of the food stall… these boys are hardly fat!! We’re in Adelaide airport waiting for our flight to Kuala Lumpur where we have two whole days to enjoy the sights. Mostly though, I’m really looking forward to the food!! In fact I’ve been drooling ever since we booked…

Wishing Richard Taylor well for his surgery

As I type, Richard is probably under the influence of anaesthetic drugs and the robotic arm at the Methodist Hospital in Houston, Texas USA. He will spend 6-10 hours on the operating room table with a six armed robot surgery machine named Da Vinci. As most of you already know he just completed a month of chemotherapy,…

Dementia, madness and neuroscience

In many of my presentations, I say; “The changes brought on by dementia are relentless, yet most people don’t see them as disabilities just as external symptoms. Many also think it is a mental illness, which it is not. The word Dementia is taken from Latin, originally meaning “madness”; no wonder we struggle against the…

The power of Richard Taylor

This morning, I was sure I posted a blog titled; Melatonin and Exercise Help in Alzheimer’s Disease. However, it has ‘disappeared’; I’ve just tuned in to do some work on one of my drafts, and simply cannot find it. Of course, it must be ‘user error’ that has caused its disappearance, but if anyone who gets my blogs…

Stand up and speak out…

Recently I posted Jennifer Bute’s story of being diagnosed with dementia. A couple of her quotes really stood out to me. The first quote is about compensating for the symptoms of dementia: ‘To compensate, I became ruthlessly efficient,  writing everything down as soon as I had spoken to the patient and   following up referrals immediately. However, I…

Jennifer’s story

Jennifer Bute from the UK has become a wonderful friend of mine; we met at ADI London last year, and like me and Richard Taylor, she is fighting the symptoms of dementia as if it is the Olympics race of her life. Dementia from the inside is her story; Jennifer Bute. She is using her…

Living outside the stigmas and expectations of others

Recently Richard Taylor  wrote to the following message to a person with younger onset dementia living in Queensland who had connected with him via his website; “Thank you for taking the time to write. Have you met Kate Swaffer? She is a kindred spirit, who also lives in Australia, of ours who hears the same…

The train wreck of dementia

The story I posted earlier this week DEMENTIA: The Long 24 Hours by Norman McNamara tells of Norms dementia journey with great clarity, and ripped our heart-strings right out of our chest. Reading it was devastating; it was like viewing our own dementia train crashing. Norms courage in sharing it is inspiring, and he and Richard Taylor will help keep me motivated…