Tuesday, May 20, 2014

The Alzheimer's Show

On 16-17 May it was the 2nd Alzheimer's Show. The inaugural event was held last year in the Horticultural Halls in London but this year it had moved to a much larger space within Olympia.

We had a nightmare of a journey with cancelled trains & tube lines not running/stopping where we needed to get off! Thankfully Mike and I always allow lots of time for our journey as we can't bear to be late for anything so when we ended up a 30 minute walk away from where we wanted to be we just jumped in a cab for the final section.

My first stop was to the Join Dementia Research stand to meet up with Zara and the team. Anyone who's been following my blog for a while will know that I have been banging on about the need for a way of linking researchers with people suffering from dementia - how else can we learn more about the condition and find ways to prevent/cure it?

Back in 2009 I attended a Ministerial Summit on Dementia Research at the Royal Society in London and this need was expressed. Since then I've been involved with the Dementia, Neurodegenerative Disease Research Network (aka DeNDRoN) to develop a new on-line service to link people with dementia and their carers/families with researchers and  so you can imagine how excited I was that the project is nearing the launch date. For the last few months I have been part of a conclave, in conjunction with the system developers, testing how the system works.

The website isn't live just yet but it will be here soon.

I put some leaflets on the chairs in the lecture theatre where I was going to speak.

After a look round at the stands and chatting with a few people I know we headed off to find Louise from ARUK and check out the venue. It was the same size as last year but this time they'd sorted out the sound system (last year I was the first speaker and the microphone wasn't working properly and the speakers weren't set up in the right position!).

Chatting with Louise
A quick sound check before people started to arrive
We set up the slides, people settled into their seats and I went into my serious mode. As I've been supporting ARUK for 9 years I like to start my talks by telling people why I chose them originally so on my first slide I had:

* Devastating effects of dementia (on my mum and on us)
* Stigma of mental illness (especially heightened when referring to the elderly - I've heard people say that the elderly have had their lives so it doesn't matter!!!)
* Social isolation (I could talk about this for an hour rather than the 20 minute slot I was allowed)
* Research into dementia is vastly under-funded (still, after all these years)

Sadly, all those reasons still apply.

The photo I chose to show whilst I was speaking was of my mum, aged 79, digging in our garden, hair all over the place and a big smile on her face. That's how I choose to remember her; as an intelligent, active and very capable person who was never afraid to get stuck in. As always, she was with me both in my heart and I was wearing her ring (which I also wear whenever I run a marathon so she's clocked up 35 marathons so far).

Me and mum take the stage together 
I should mention now that I don't like addressing a small audience because it's so up-close-and-personal and I can see every tear that falls, every blot of the eyes with a hanky, every gulp. Inevitably I spot these little things and I can lose my focus. Give me a few hundred people and I'm much more at home as I can't distinguish individual details.

There are many elements of mum's story that I never talk about because they are just too dreadful but I do have to mention some things so that people understand the horrors of dementia. So I told them about the psychotic episodes, the realities of double incontinence, how my sister died and mum didn't know that Judy was her daughter (the audience was dabbing away the tears by this stage) and then I switched to this slide of me and mum when I was little. 

This was the first time I've spoken about this episode in public although I mentioned it on my blog here. I thought I could do it, I really did, but when I started to speak my chest tightened and I felt the tears pricking behind my eyes. I had to take a moment to compose myself. 

Here's what I wrote about the photo in my earlier post:

You see one of the things we did to help keep mum's mind active was to look at old photos and talk about them - who they were, what was happening, where they were taken etc. One day when I was tidying her bedroom I found a whole pile of photos ripped up and stuffed into the wastepaper bin. Photos of mum and dad together (their courtship and wedding), my sister & me as children - all the usual family photos.

When I asked her why she'd ripped them up she said that she didn't know anyone in the photos so there was no point keeping them. She'd also scribbled over some of them in pen. It's brought tears to my eyes just typing that. 

If you look closely you can see a pen mark on mum's nose.

By that time I was getting near to the end of my allotted slot and so I had to quickly talk about my fund-raising antics. I thought I was safe talking about that but when I mentioned the crochet chain and its significance I saw 2 people wiping away tears and I was mighty glad to finish!

Why do I keep doing it? 

It's simple; I was so horrified by what happened to my mum that I can't bear to think that anyone else will suffer that way. 

Is it to keep my memories of my mum alive?

I would prefer not to have to relive my memories of mum during the time she was gripped by dementia but it's the only way I can get the message across.

We need to raise awareness about this devastating disease and invest more money into research.

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