Alzheimers Society Annual Conference Part 1……

After the wonderful day at Minds and Voices in the morning yesterday, I sadly had to leave them all at lunchtime to carry on having fun without me🙄. I had to head down to London for the Alzheimers Society 2 day Annual Conference. Travelling from York meant the train was direct and no stops…….☺ and I was being met at the station by research playmates, Barbara and Sandra. We were arriving the evening before ready for an early start on Tuesday.

The 3 Nations Dementia Working Group were opening the Conference with 45 minutes to set the scene, so I was excited about seeing everyone.

Anyway, the train was on time in York and we trundled down at full pelt. As I was getting up to get ready to get off the train, the woman who’d been sat opposite me asked if I needed any help. I said I was fine thank you and she shocked me by saying.
“I’m halfway through your book, you’re Wendy Mitchell aren’t you?”……😳 ………crikey, how lovely……..

I could see Barbara waiting at the gates as agreed and it turned out we’d been on the same train😮……Sandra joined us soon after. Me and Barbara couldn’t have set off on our own as we were relying on Sandra to know where she was going🤣

We found the hotel and immediately decided to have a cuppa, only to be joined by 2 other people followed by Prof Murna Downs from Bradford Uni……..but the day had taken its toll and all I wanted to do was chill in my room so I left them all to it……..

And so to the first day of the conference…..apparently 500 delegates were due there 😳

After the last hotel in London, which created a new tube stop on the map 😶 – this one was lovely and peaceful, just need to teach my eyeballs how to sleep again🤣.

I met everyone else down in reception to walk through the busy, crazy London streets to our venue for the 2 days – The Oval Cricket Ground. Some kind person walked with me as the volume of people and noise was overwhelming….

But we made it to the Oval

And then the chaos started, but people came up and said such lovely things and some simply to say hello which was wonderful. I finally saw the 3Nations stand in the corner and made my way to have hugs from all my playmates.

Broadcaster, Fiona Phillips introduced the day and went through the normal housekeeping stuff, and Kathryn Smith, Chief Operating Officer welcomed everyone to the conference before Fiona introduced us – we went on stage in 3 batches to do our bit so we could sit down with the mic.

Keith and Chris gave us a recap of the The Dementia Statements stating how 2 words were previously missing, ‘Rights’ and ‘We’…..
Chris went through the review process and started by saying ‘How everything is changing but nothing has changed”

It was next the turn of Joy, Tommy and Nigel and Nigel started off by talking to the audience about Human Rights.

Tommy ended by saying ‘I got a DNA test today and I was shocked to discover that death is hereditary in our family” Cracking Tommy🤣

It was then me Hilary and Keith (who was representing John who is ill) and we finished off by stating what people can now DO. Part of mine was:

“There comes a time in any campaign for change, when enough is enough. When words and good intentions become meaningless promises.”

And Keith and Hilary finished off our session perfectly …….

Before a much needed break it was the turn of Sir Simon Lovestone talking about BIG DATA…..using data we already have to accelerate drug discovery…..

Data from electronic records, especially as GPs move from paper to electronic storage. So much data that could help reach dementia. The data given to studies can be used again and again and again – why collect this all over again when it’s already there……..

Well, personally, I never imagine in a million years that data wouldn’t be re used………if patients have given consent, or opted out should they wish.

The good news he gave was the indications found in some research of finding drugs to protect against Alzheimers…..similar make up to drugs that already exist and adapting them……..that’s where I’ve always thought research should focus…….

So then it was a much needed cuppa tea time but first time for a photo with Fiona

I was due on our stall to sign books. So many kind people came up and said lovely things and many books were sold, for which I’m very grateful………..there were so many people that when I next looked up everyone else had gone to the break out sessions and I was due to be watching Young Dementia UK…….I did wander round for a while, but just couldn’t find the room…..☹️ so missed it. Instead I went to the quiet room and took piccies

Joy joined me eventually and then lunch arrived, so we were able to get in before the crowds arrived – perfect! Dr Jennifer Bute joined us along with Hilary, Tommy and Joyce. A lovely lunch of chatting before heading back to the hoards.

I then joined in the session introduced by Dawn Booker. PhD Students from the Doctoral training centres around the country, had 7 minutes each to take us through their study……wonderful to see enthusiasm as well as nerves in these amazing future leaders of research……..one showed a slide that said:

When you stop taking risks, you stop living life” – wonderful😊

At the end all the students came on stage and I Was allowed to ask one question….

“If you were advising students starting out with their phd, what would you advise them to do or not do”

All of the wonderful students gave an answer and one that stuck in my mind was:

Talk to as many people with dementia as possible”……..now you know why students are my favourite people, our hope for the future…..

Brain apathy had now set in as it’s been an overwhelming day………I’m sure the rest was wonderful…..but one thing that made me sit up and wake up was when Minister of State for Health and Care Caroline Dineage MP spoke…….and sadly they seemed just ‘words’ and promises…….she said all the right words in all the right order…….but I’ve heard the words before. Brownie point will only be gained when the words are turned into real ACTIONS………

No more typed words, so I guess my brain went on automatic and disengaged from my fingers…….Day 2 tomorrow……

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.

4 thoughts on “Alzheimers Society Annual Conference Part 1……

  1. Wendy,

    I truly hope others are letting you rest more when traveling to conferences, book signing, and all the visiting and meeting new people, It is something you are so passionate about anyone can see how important this is to you to get to the finish line in a triumph you may not recognize when it happens.

    Yes, many have said it, you are strong, brave, special and all of this is true. But you are a human being as well and maybe should get a brain rest break a few times in a day. You are sacrificing the limited time of choices you have for this project.

    It bothers me that maybe as you rush from one activity to another is there any ‘Wendy time’? You are admired by so many who will remember you forever, some of us,( I know there are others), do wonder if you are getting good rest.and not too much pressure on the mind all day.

    You are my hero. Take care please and congratulations for forcing open a door too long closed and forgotten. Acceptance of this fate for the elderly has now moved closer to scientific research for prevention and a cure. You are a big part of all that and discoveries to come. You have grabbed the attention of everyone, especially older people reaching into their 50’s and up. As more public learns about how the mind such as yours can continue in usefulness for many years more, older folks are going to refuse to go to “homes” before they ever need to.

    There is no real way to let you know how much it means to everyday people like me to accept your gift of awareness and knowledge. Thank you is not enough but it is all there in those 2 words.

    Wendy

    Liked by 1 person

  2. Hi Wendy, I was so thrilled to meet you yesterday at the conference. (I’m the lady from the Fire Service). I am working on a project to make our service more accessible to people with Dementia, and also as a Dementia Champion I am also involved in raising awareness of the condition to as many of our staff as possible. It was such a priveiledge to hear from you and others about what it is really like to live with Dementia, and you are truly an inspiration, (and a very cool lady)!

    Liked by 1 person

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