Young Onset Conference…..Part 1

Monday was a particularly exhausting day as I was in York all day at Minds and Voices, the subject of yesterday’s blog and then I caught the train to Birmingham at tea time ready for the Young Onset Dementia conference on Tuesday. The conference came about as a result from the Young Onset Steering Group that I’m a part of which is chaired by Tessa Gutteridge from Young Dementia UK. It’s aim was also to launch the new Young Dementia Network…

image

I had a bit of a scare as the taxi Emily had ordered for me at the end of Minds and Voices was delayed and caught up in traffic😱 – to begin with it seemed fine as we had well over an hour before my train…..however, as time ticked by and still no taxi, I decided to go to the bus stop and chance that a bus would arrive……..😨 Lady Luck was on my side as a bus turned up just as I got there……..got the train with minutes to spare😳

Rachel Niblock had agreed to meet me at Birmingham New Street which was fortuitous as I hate that station. It always seems so complicated and now it’s been revamped, I didn’t know what to expect.
Rachel kindly met me on the station platform, which was wonderful. I’m so glad she did as I would have been wandering around for ages to try and find the taxi rank – that kind thought saves me so much stress at the end of such a busy day and so many organisers forget how such small acts of kindness can mean so much……..it then took forever to get to the hotel as there’d been an accident which made the roads gridlocked.
Sadly I didn’t make the evening meal with all my friends as by the time we got there my brain was banging after the busy day and had decided to retire before the rest of me for the evening….

However, brain and body had matched up again in the morning and I was looking forward to the day, especially as I’d be seeing my two most favourite researchers, Professor Pat  and Dr Mel from Sheffield………they arrived just in time for a hug before the start of the event…… many people came up and said hello who read my blog, which was a lovely way to start – one woman was even over from Australia and is a regular reader, but I wish I’d caught her name!🙄
Before we started I managed to look round the amazing gardens……and of course take some photos……
image

Tessa Gutteridge and Hilda Hayo were the chairs for the day.
As usual there were the usual technical difficulties with the microphones……can never understand why technology isn’t tested …….….however, Hilda decided she had a loud enough voice to start while they were mending it🙄

It was funny, but soon after this I had a message on my phone from a person with dementia and his wife saying they wished the conference was streamed live so more people could log on in the comfort and peace of their own homes ………….took a while for the sound to be working so this might have stretched them a tad too far, but event organisers please note this wonderful suggestion!

Alistair Burns was the first to open – with loud voice……….😊 He started by saying how dementia was finally hitting the headlines:
“Now you can fill rooms with people interested in dementia”

“Post diagnostic support is key” – shame there’s nothing in my region for Young Onset…….

Key areas of differences are needed for YOD especially around imaging.

image

He also asked if we need Young Onset Dementia hubs – well me thinks an acknowledgement that it exists would be good in my area……

We need a life time pathway, not a short term with the aim to discharge……those already diagnosed as well as newly diagnosed.

Keith Oliver was up next – still soundless……….but, being a former headmaster, was used to projecting his voice….he spoke wonderfully as always of the impact of his diagnosis.

image

“The Swan from Christine Bryden’s book is a great metaphor for what it’s like to live with YOD”

was a beautiful description – we can look so well but very few people know and understand the challenges we face each day.

And a good point to end for today – Part 2 tomorrow otherwise there’s too much reading…….…….

Advertisements

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.

2 thoughts on “Young Onset Conference…..Part 1

  1. Hi Wendy, I am the lady from Tasmania in Australia . I really enjoyed the conference and meeting up with so many inspirational people.
    I used to work in Doncaster with the PROP Group – Trevor Jarvis was a member .
    Keep up the good work!
    Kind regards Denise Chaston

    Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s