Brilliant event in Milton Keynes……..

On Wednesday I was in Milton Keynes. This in itself was very strange as I lived there for 30 years before moving to York, so it holds lots of memories, good and not so good……..people often describe it as a concrete jungle, but I loved the concrete jungle, with its’ concrete cows, and it served me well for the time I was there…….

I travelled up from London after my day on the Care Grant Board (tomorrow’s blog!), so arrived around tea time. Amazingly it looked the same and I felt very at home……I walked round in circles for a while trying to find the hotel as I knew the area but the hotel was new so didn’t come up on my usually walking map 😳. However, I found a nice young man who directed me and agreed himself that it was tucked out of sight if you didn’t know where to look………

The hotel was fine but when I’m away I don’t have access to my supply of diet tonic🙄 – why do I need diet tonic, you may ask?…….well not to go with gin……..I drink it instead of water as it contains quinine and quinine is known to stave off attacks of cramps in the legs. I did try the tablets but they made me hallucinate, so maybe the small quantity in tonic is just enough. However, when I’m away from home I don’t have access to the bottles of tonic so last night I was awake in agony with cramp in my legs and feet and it’s soooo painful.

Ok, you can put your violins away now and I’ll get back to the blog…….🤓

I’d been asked some time ago to talk at an event at MacIntyre Care in Milton Keynes by Beth Britton who I know from Twitter! Beth has long been involved with them in terms of their dementia project and wanted me to give an insight into what it’s like living with dementia. Their web describes this non profit organisation as:
a national charity providing support to people with learning disabilities for 50 years”

Dementia is often forgotten in the learning disability community, but it is a very real problem. People with learning disabilities, particularly those with Down’s syndrome, are at increased risk of developing dementia and will face different and additional challenges to people who do not have a learning disability – hence the creation of this special interest group.

The event was part of their Dementia Special Interest Group meeting, Hilda Hayo, CEO of Dementia UK, was also speaking.

Emma Killick, Director of Adult services at MacIntyre, had kindly agreed to pick me up from the hotel and drive me to the venue.

Although Milton Keynes is known as the concrete city I also think of it as the autumn city as there are millions of trees and in the autumn it looks amazing, however time didn’t allow for me to go to my favourite places..

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In the car, Emma warned us of a film company that have set up camp in the building this week – ACC TV – Adult Care TV based in Milton Keynes.. They make TV programmes on a theme and get the theme from people who subscribe to the service,. Those with learning disability more and more are moving into old peoples care homes with dementia and care staff are flummoxed how to look after them, so this is their theme of the moment. At the end of the programme they do a live q&a sessions with experts and this time those with learning disabilities are the stars of the show and the experts answering questions – just as it should be😊. It’s then archived and members are able to download to watch.
They’re going to have a champagne reception for a premier showing of the programme for everyone when it’s complete which is wonderful

Anyway, me thinks I got distracted yet again…..

I arrived in time for my cuppa tea and at the start we went round the room – about 50 people – and did quick introductions.
MacIntyre Staff were here from all over the country.

I was sat next to Rachel Mortimer from ‘Engage and Create’ – she uses pictures to engage – not reminisce, but engage- which is perfect. We exchanged lots of ideas.😊 Beth Britton brought her gorgeous baby girl, who I can’t believe is nearly a year!!

We then wrote down what people are proud of. – large or small……some great comments…..one said:

Dementia in Macintyre is not a taboo subject”

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They have a internet page for the dementia project where my blog suddenly appeared, so very flattered about that.

They spoke about the learning disability register – there’s a stigma attached to being registered and they believe 1 million people are missing. Stuart, who has a learning disability spoke of his experience at a conference in Birmingham that was magic. “Inclusion” comes second nature to this organisation. Others with a learning disability were due to talk at the event but were too busy becoming film stars in another part of the building, so mere professionals had to suffice😂

We were running late already and Emma suggested cancelling the tea break ………😱 ….we had tea break….👍

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Someone then gave an update from the Young Onset Dementia Conference in Birmingham that I was at recently – I wish I’d know they were there as I’d have said hello!
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Beth then gave her update before my turn. I tried to show how little things can make a big difference and how small adaptions can make life easier and calmer. The talk was filmed by the company in residence with them at the mo and they asked loads of questions at the end, which is always nice.

I was so glad I was invited here today as they’re doing soooooo much brilliant stuff supporting people with dementia who also have a learning disability.I’d like the world to know what amazing work they’re doing here.
The film company took a photo of the whole group at the end, but I must have got distracted and forgot to ask for one on my ipad, but I managed to get this one of me, Hilda, Emma, Rachel and Beth…..

Hilda, Rache, Emma, Beth and me
Hilda, Rache, Emma, Beth and me

I had to leave after lunch in order to get back before it was dark……Emma’s right hand PA, Beverly, kindly gave me a lift back to the station.
This is where normal service resumed……all trains to London delayed…..😳….luckily I’d left lots of time …..and when I got to Kings Cross, guess what…..the Hull train was delayed🙄……ah, well, I had plenty of entertainment to watch in the form of this beautiful bird below who was on duty to scare off the pigeons in the station and spent its time swooping across the concourse which was an amazing site…..’every cloud…….’

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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 “Brilliant event in Milton Keynes……..

  1. What a lovely blog post! Smile! I think you must have had a really lovely time to have made such a long post. Fantastic to read. I’m so glad you had such an interesting time, and what a gift to see hawk in action on your way home. Best wishes from Liverpool, Maggie

    Liked by 1 person

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