Minds and Voices, then Radio York……

Yesterday I trundled off to York for my monthly meeting of my wonderful support group, Minds and Voices. It means getting an early morning taxi into Beverley and then the bus to York.

The taxi driver was nice and early and we were chatting about how the town cows had been let out to roam for the summer. I very stupidly spoke too soon and said how they were keeping themselves to themselves at the mo, when suddenly, we came across a group having an early morning wander across the Westwood and promptly stopped us in our tracks. You’re never quite sure how they’ll react early on in the season and neither the driver nor the cows knew what to do first – very funny…

Nothing to do but sit and wait for them to move……

Damian kindly offered to pick me up from the train station which meant I got a nice walk across Lendle Bridge. It was very cold and I didn’t envy the rowers today…

We got to the venue as Emily got there and just got inside as the heavens opened – not like me to be lucky!

Cuppa tea followed. ……obviously…..

Today we were going to pull together everything about the course we’re going to be delivering, which we hope to launch in September. It’s aimed at those newly diagnosed and will be delivered by people with dementia.

While we were waiting for the last couple to arrive, Damian went through the DEEP Newsletter and mentioned the abstract submission he and Emily had made for the UK Dementia Congress which is going to be in Doncaster this year so quite local for us. So fingers crossed.

Anyway, the last taxi arrived and the Fleetways taxi man came in and told us about the work they’re doing nationally to try to raise more awareness of dementia and the help they can give. They’re wanting to set up a national system whereby a taxi company picks you up, takes you to the station, hands you over to a train representative etc etc – door to door service to allow people with dementia to continue travelling. Magic….

We then settled down for the main task of the day – the Course for people newly diagnosed with dementia.

We asked, ‘What is the one message you’d want to give to someone who has just been diagnosed with dementia?’ The flood gates opened and Damian had trouble keeping up and there were ‘Can I speak?’ cards going up everywhere.

When we stopped for lunch we had 3 sheets of flip chart paper filled with suggestions

Lunch time to refuel the brain cells…..😊

The main message was not to be afraid and how it’s not the end, it’s simply the beginning of a different life. Generally most courses are for Carers which often state what they should watch out for in the person with dementia – the ‘challenging’ behaviours. What we are saying to the person with dementia is
‘Watch out as the people around you may be challenging.’ We so often have problems because of the treatment of others.

We had general themes emerging which we need to put into some sort of order. That’s the ‘royal we’ of course as Damian is the one with all the notes. The group has made many important local contacts recently and we hope local health care professionals will ‘refer’ those newly diagnosed to our course

I can’t wait for this to become a reality.

I had to leave at lunchtime as I was popping into Radio York for a chat with the lovely Jonathan Cowap. I’d promised him a catch up when he asked in March but we’d agreed to wait until April when ‘Mad March’ was out of the way…….I’m sure I’ll tweet the link when the conversation is broadcast on his morning programme. It was then time for home.

I love the yellow fields this time of year and we have an abundance of them on my bus journey…………….such a nice 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.

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