In the midst of a busy week…..

On Monday I made the long journey to Bristol. I hate Cross Country Trains so much that I went via London for the journey there.

I’d been asked a long time ago if I would speak at the BRACE annual conference and be interviewed by ex newsreader, Sir Martyn Lewis.

Each year they hold a national dementia conference featuring some of the UK’s leading thinkers on dementia (scientists, campaigners, politicians, care providers) and hosted by former newsreader Sir Martyn Lewis. So it was lovely to be asked to be part of this event.

The journey didn’t start off well as there was much confusion at the first station due to a delayed train, me misreading the information board and being on the wrong platform with a heavy suitcase….🙄. I ended up getting so confused that I got on the wrong train, but all trains go to Hull so I thought I’d work it all out and start again once we got there.

At least the sun was shining……

Once I got to London I went over to Paddington to catch the GWR Bristol train. I don’t travel with them very often, which is such a shame as the staff were very friendly and the seat reservations are much easier to understand than the new LNER east coast for taken, green for vacant – simple……..and in words as well…….simple is often forgotten……

And so I ended up changing in Hull when I didn’t need to but hey ho……each of my connections were on time after that and kind smiley people helped me on and off with my laden suitcase.

But, hey, many hours later I arrived in Bristol and the taxi took me the short ride to the hotel. The Team, including Martin Broach were setting up the room in preparation so I went and said hello to find where I was going.

The next morning I trundled up to the top of the lift and found people arriving. Someone from the Alzheimers Society Research Network came over and said hello and then a Twitter pal came and made herself know – it was the only reason she’d come! Awww, I love Twitter pals……and then even more followed……so nice to see so many….

The conference was called #Together 4 Dementia

I met a woman at the tea stand who said her partner, who was now in a nursing home had spoken out lots about having dementia and still took part in research even though she was now in a nursing home – wonderful. Me thinks that where you are is irrelevant. It’s important that people of every stage take part in research.

It was still quiet as I’d purposely arrived early so lots of time for cups of tea and typing my blog, looking round the stands, before Mark introduced me to Martyn Lewis. We chatted about hotel showers and had to have a piccie

And then it was time to start. The day was being filmed as well, which is always nice.

Mark started off the day welcoming everyone to the Brace Conference. The James Tudor foundation funded the conference ….he then introduced Sir Martyn Lewis. Martyn has supported the Brace Charity for the last 5 years.

He said we were here for the ‘news of tomorrow’………and ‘All research needs to be put into context’ as many headlines offer hope but reading the article offers little evidence. He then showed a very simple video which you can watch here……

Professor Clive Ballard from Exeter Uni, was the first speaker talking about Psychological Symptoms in people with or a risk of Dementia……..he spoke of there not having been any licensed treatment for dementia for over 20 years. He said we’d been very one-dimensional when looking at dementia – looking at memory issues – but maybe we should look further at depression and mild behavioural impairment as markers. He spoke of the research they’re doing with this in mind…… Precision medicine exists in cancer, why not in dementia?

….good that a different angle is being investigated even though they’re at the very very early stages.

Up next was Chloe Meineck talking about her Music Memory Box. She has worked with people with dementia to design the boxes. Each piece from the box is linked to a piece of music. A sensor is stuck on each piece so when they’re lifted out, they play the chosen music. Unlike some things, it can translate to any culture as it’s personalised to that person.

More can be found here:

After Chloe came researchers from Bristol Uni talking about their research on Connections between dementia and Oral Bacteria. Sadly I think the presenter was quite nervous or something and I didn’t understand this one as it was very confusing. The theory sounded very interesting re the connection with dementia but I couldn’t understand the detail…shame…

The last session before lunch was me being interviewed by Martyn….
It seemed to go down very well and I finished with my story of Billy……..obviously couldn’t type so can’t remember the detail.

Over lunch I signed copies of my book…….we seemed to sell a bucketful so that was so kind of people to buy it and to say such nice things…..

After lunch it was Tony Hall from Bristol Dementia Action Alliance about the state of play in Bristol.

“Dementia has no barriers and we’re not going to create any”

They seem to do an awful lot in this area and Tony was full of funny tales…….wasn’t quick enough to write them down as brain was starting to shut down…….

Nothing else typed as I was getting very tired and brain must have closed up shop…..

There were people from all walks of life at the conference – local NHS Trust, Community Health, Universities, Researchers, Health Care Service providers and many many more which was so nice to see. I had a wonderful day and met so many wonderful new people…….one person handed me a card during the book signing. I didn’t have time to read it until I was on the train. It was from an Occupational Therapist called Diana and the card thanked me for writing my book. Part of her message said……

”I work in a Memory Clinic ……and have students with me for several weeks. I always give them a copy of your book……….”

Amazing end to an exhausting day………..

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.

3 thoughts on “In the midst of a busy week…..

  1. You are one amazing lady really enjoying your blogs,I send them on to my daughter as her inlaws are still coming to terms with their mother having to live with early on set Alzheimer’s…

    Liked by 1 person

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