Saturday, December 15, 2012

Alzheimer's and Me

Lately I’ve been thinking a lot about Alzheimer’s. It began with a letter I wrote for the Mental Health Research Institute’s annual appeal. This is the photograph of my parents that is at the top of that letter:

Mum was in the very early stages of dementia then, but still very beautiful and vivacious, and my parents were still head over heels in love with each other. The full letter is here. Here are a few extracts from it:

About 300,000 of my mother's fellow Australians are living with dementia right now. Every six minutes a new sufferer is diagnosed. But we felt alone.


With Alzheimer's there's no kidney you can donate, no body part that can be amputated, no chemo to try. No drug cure. Nothing. Just patience and anguish. And then more the next day. And then again. And again. For years. With only death at the end.


It's predicted that without any significant medical breakthrough there'll be one million sufferers by 2050

If you'd like to donate to the Institute here's the link for that.

Then at the beginning of December I participated in a Dementia in Hospitals forum, a joint project of Alzheimer's Australia Victoria, and the Victoria and Tasmania Dementia Training Study Centre.

It was an interesting forum. The bad news is that nobody talked of a cure or even of a known cause. If there is a cure, it's at least five years away, and inside the brains of many of us baby boomers those pesky amyloid plaques and tau tangles are forming already. Tick, tick, tick...The statistics are terrifying and getting worse. It's strange how complacent people are about this. Denial, I guess. Ignore it and it'll go away...

The good news is that many dedicated and talented researchers are investing a lot of time working out how best to look after sufferers in acute care hospitals, which must be the worst, most frightening, places for them.

My speech was about my family's experience with Alzheimer's and in particular about how confusing and frightening hospitals were for my mother, and how hard we had to work to make the situation tolerable for her.

After all this I turned to a book called, The Alzheimer's Prevention Program, by Gary Small and Gigi Morgan

I didn't really expect a miracle. I suppose I was seeking a glimmer of hope.

The book is easy to read and well set out. It contains results from lots of studies and provides a recipe for healthy living. Remember that line, maybe from Laugh-In, 'Healthy mind, healthy body - take your pick'? Well, this book provides a template for both.

There are sections on nutrition, physical and mental exercise and reducing stress.

No miracles though, and no guarantees either. What the authors suggest is that by following these recommendations you can possibly postpone Alzheimer's by years. And if you can delay the disease long enough then maybe there'll be a cure, or you'll die of something else before it even manifests at all, or to any great extent.

Better than nothing.

For me the most encouraging thing I've read recently is that if the members of your family who have developed dementia have done so after age 65 then you are at no more risk than the general population. I felt a weight lift off me when I read that. I had assumed because my mother developed Alzheimer's in her 70s, then the disease was sitting at the end of my bed waiting for me. It still may be, I guess. I'll just have to get up earlier than it does and follow as many of the book's prescriptions as I can: eat a healthy diet, exercise my body and exercise my brain.

And then time will tell.

People who knew my mother always said I looked just like her. I was so proud of that. Now it makes me nervous that our similarity will be my downfall. Whereas before I used to seek ways in which we were alike, now I find myself looking for the differences between us.

1 comment:

  1. I think your mother would be very proud of you Vivienne.
    I wish you a peaceful holiday season and a wonderful new year.
    love Judith x