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ADI 2001 New Zealand - Presentation by Christine Bryden - Slides 9 to 12

Slide 9

We need any resources you can give us at that critical turning point of diagnosis, to help us retain cogntive skills to work through our issues, as a springboard to greater spiritual and emotional strength.

The most important thing to do at the moment of diagnosis is to give us anti-dementia drugs to slow further decline. Do not delay!

Remember, treatment delayed is treatment denied.

These drugs - cholinesterase inhibitors - act to inhibit the breakdown of a chemical messenger in our brain so helping what remains to work better. They seem to keep us where we are, not recapture what we have lost, so it is important to start them as early as possible. Not only do they help our cognitive function, they also help with our behaviour and general function.

Complementary medicines are also important. Indeed in double blind placebo controlled studies the efficacy of Ginkgo biloba is comparable to cholinesterase inhibitors. Such controlled studies have also shown Vitamin E or selegiline delay decline.

I have been taking an anti-dementia drug since 1995, and Vitamin E and Gingko since 1997. They work for me.

Slide 9

Slide 10

Without the drugs it’s like thinking in fog and walking through treacle. The tablets give our life back and give us the key to a new future.

We can think more clearly, feel less tired, and be more in control of our lives and our behaviour.

But we still ebb and flow like a parallel universe of untreated and treated dementia. We have our good days and our bad days. As my friend Morris has said, there are “windows of clarity” which we must take advantage of.

Unpredictably we can feel exhausted, confused, muddle-headed. Life seems too difficult and we retreat. We may even experience what you call a catastrophic reaction when life becomes too much to deal with. But remember, dementia is an abnormal situation, and as Viktor Frankl has said “An abnormal reaction to an abnormal situation is normal behaviour.”

But without anti-dementia drugs or complementary medicines, this abnormal behavior is how it would be all the time.

Slide 10

Slide 11

After diagnosis and drugs comes determination. We who have experienced the trauma of a diagnosis of dementia, and are relatively stable on drugs, now must try to move from being a victim to becoming a survivor.

The challenge is to draw on our psychic resources to step across that yawning chasm of fear that opened up at that moment of diagnosis. How can we live in a world of hope, alternatives, growth and possibility, when dementia threatens our sense of self?

We need to create a new image of who we are and who we are becoming. How we do this depends very much on our personality, our life story, our health, our spirituality, and our social environment. We can choose the attitude we have, and, like Frankl, look for meaning in our lives through the attitude we take toward unavoidable suffering.

We need to make sure we do not retreat into helplessness and let you take over our functioning, nor try to act as normal and become stressed at how difficult this is.

Slide 11

Slide 12

Like Itzhak Perlman, the violinist who needs crutches to get on stage, we PWiDs have a vital task on our journey with dementia. “It is the artist’s task to find out how much music you can still make with what you have left.” Like him we must often struggle to cope, to create, to dazzle, despite our limitations.

We can discover new talents, focusing on relationships, emotions, spirituality, rather than on cognition. By assigning cognition a secondary place, being content with our new life in the slow lane, we can enhance these other aspects of our personality.

Many of us have learned how to communicate over the Net, finding great joy in encouraging each other, and deep support in sharing with others. We have made new friends in our support groups, and have become much more attuned to our emotions than ever before.

Many of us can identify with Basil Hume, when he was diagnosed with cancer: “I have received two wonderful graces. First the time to prepare for a new future. Secondly, I find myself - uncharacteristically - at peace.”

Slide 12

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