Alzheimer’s Research Network conference – Day 1!

Monday and Tuesday was taken up by the Alzheimer Society Research Network conference. It was in Manchester – a place I’ve never been to! Remember, my blog is my memory, hence all the words on this one:)
The journey there went smoothly and Matt Murray (Research Engagement Manager) had enclosed a great map to take us from station to hotel. I would have printed something very similar out myself if he hadn’t sent it – brownie point Matt:)

The Alzheimer Society people were on the door in their blue sweatshirts to direct us to the right floor.

We had lunch when we got there and I was immediately met by Sandra from the same region and then finally met ‘Ola’ Colin who follows my blog. We’d wanted to meet for ages and now was our chance. It was so nice to meet familiar faces from the off. Mel and Pat from Sheffield also got a hug – they were delivering a seminar on their research which I wrote a blog on some time ago –

The conference itself went well. I started off in a refresher session for research monitoring run by Matt and Katherine.
The role we play has far reaching advantages for the researchers – we offer experience, enthusiasm, advice. We in turn have a wonderful experience being involved. We bring the human side of Alzheimer’s to their world. If this appeals to you, anyone with an interest can volunteer –

My next seminar was entitled – ‘Listening to the brain’. Dr John Gigg researcher from Manchester delivered the talk – he told us all about Electrophysiology – measures electrical signals from the brain….(?!)
It’s an increasing important tool in understanding Alzheimer related changes in both AD patients and animals bred to mimic AD.He spoke of the different types of memory – ‘ show and tell’ type e.g. you can remember how to ride a bike and show them how to ride a bike. – this then becomes embedded in long term memory; and the ‘Tell’ memory – e.g.what you had for breakfast today. It’s the loss of the ‘Tel’ memory in Alzheimers.
I thought that was a great way to explain that:)
He then started to lose me by describing that MRI can’t measure the activity in the hippocampus but that an EEG can but electrodes are fixed to outside of the brain so not measuring the actual activity inside the hippocampus. The analogy he used was lots of people in a room –he then had a brilliant slide with Winnie the pooh, Eeyore and Tiger – how do we measure the different outputs of each character – great analogy!

The reason they test on rats rather than mice is because we’re much more like rats!! (think I did a tweet at that point to say I knew quite a few rats……..) and the hippocampus is large and accessible in rats making it easier to investigate.

Then young researcher, Jack Rivers-Auty from New Zealand –who is being funded by the Alzheimer’s Society to do research at Manchester. He said: “I owe a huge thank you to them.”

“I love dementia research because there’s such a passion – I was in the lab on Saturday and Sunday and you can’t tell the difference between weekday and weekends because there’s just as many people in the lab.”

He started talking about carbon and lost me but he was lovely because he was so enthusiastic and animated –he just talked to fast for me to be able to keep up with him and type!!
I enjoyed his sentences but didn’t understand the sentences put together – ha!
He had a couple of great practical demonstrations – Michelle and Ian counting out loud – Ian counting twice as fast Michelle – that’s how fast the cells die in someone with Alzhiemers. Wish I’d been able to record his session as he used such good analogies but couldn’t keep up with him.His passion and enthusiasm were infectious
He posed the question – how can you decide if a mouse has developed Alzheimers? –he explained that you put them in a box with 2 identical objects – then take out and replaces one of the object with something different – a healthy mouse explores the new object – the mouse with poor memory will explore both objects.
Fascinating fact – we often hear of 20/20 vision…..a mouse has 20/2000 vision – he can see what a human sees at 2000 feet at 20 feet. And they can’t see red!
He likened mice to men……mmmmmm…… have a ‘quickscan’ round a room to find their car keys , if they don’t find them they might scan a bit more in each room– after this they ask their wife – haha! A mouse also does this – if mice are given a series of ‘rooms’ to scan, a healthy mouse will scan each one in order (Room ABCD) – in Alzheimer mice they scan rooms AAABAAC.
Totally fascinating talk – just wish I could have taken more in or recorded it…

Jacky with his 'Blue Peter' style model of a Kiwi
Jacky with his ‘Blue Peter’ style model of a Kiwi

After the final break of the day, all Research Network volunteers met in one room and all researchers had their own session.
This was a chance for Matt, Dr Doug Brown and Jeremy Hughes to talk about future plans.
They spoke of many things. Jeremy asked:

“How do we get people with dementia more involved – you shouldn’t be excluded from society because of your dementia so how can we embrace those people with dementia especially in late stages?”

10 out of 260 research network volunteers have dementia – we need to attract more people with dementia but ‘how’ is a challenging question.It’s good to feel involved – just wish I could get other people with dementia involved as I am – they’re missing out on so much.

I didn’t go to the dinner and award ceremony in the evening – the noise would have finished me off.Concentrating for a few hours is exhausting. The need for increasing amounts of quiet time never cease to amaze me. It’s one progression that’s quite isolating at events  at times but I’m a glass half full person so I went for a walk and then happily caught up on Wimbledon – nice end to a nice day.

Nice view of Manchester from my room
Nice view of Manchester from my room

About wendy7713

On the 31st July 2014 I was diagnosed with early onset Alzheimer’s. I may not have much of a short term memory anymore but that date is one I’ll never forget. I’m 58 years young, live happily alone in Yorkshire, have 2 daughters and I’m currently still in full time employment in the NHS. However, I’m now in the process of taking early retirement to give me a chance of enjoying life while I’m still me. I've started this blog to allow me, in the first instance, to write all my thoughts before they’re lost. If anyone chooses to follow my ramblings it will serve as a way of raising awareness on the lack of research into Alzheimer's. It will hopefully convey the helplessness of those diagnosed with dementia, as there is no cure – the end is inevitable. However, I’m also hoping I can convey that, although we've been diagnosed, people like me still have a substantial contribution to make; we still have a sense of humour; we sill have feelings. I’m hoping to show the reality of trying to cope on a day to day basis with the ever-changing environment that dementia throws at those diagnosed with the condition. What I want is not sympathy. What I want is simply to raise awareness.

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