My only trundle during a quiet week……..

I suppose I should have been grateful not to be travelling about with snow lying in some parts of the country and hazardous travelling conditions……..mmmmm maybe….but it’s a very quiet week this week. I’ve tried to keep myself busy ‘doing’ but it has been difficult….

But yesterday I did have a trundle. It was a meeting of a research project I’d been involved in, Journeying through Dementia. I’m part of the Steering group. Usually our meetings are held in Sheffield but this one was at the home of my lovely smiley research playmates at Humber.

Their administrator extraordinaire, Alison, had even offered to pick me up and even take me to a dental appointment afterwards. Every team knows the value of this vital link in the team. The person who is capable of organising everything and everybody – well Alison is the key person in the Willerby team.

Anyway, it was a beautiful, if not cold day outside my window…

Alison picked me up at the agreed time and we trundled to Willerby……having a chatty catch up on the way and putting the world to rights.

I went upstairs for Alison to make me a cuppa while we waited for everyone to arrive from Sheffield…….and I caught up with the rest of the smiley faces.

We eventually went downstairs and everyone from the Steering group was already there.

Journeying through Dementia is a large-scale research study that aims to find out whether attending a 12-week community programme has a positive impact on the quality of life for people who are living with the early stages of dementia.

Catherine from York Uni chaired the meeting. We went round the table and introduced ourselves as some people were on the phone. It seemed to be a trend for everyone to say their name followed by ‘part of this wonderful project’😊 just to give the research team a lift.

Jessica, the trial manager, spoke of a good idea I’d had at the last meeting apparently on retention….I took her word for it🤣 as I felt I was hearing it for the first time…..🙄

Many of the papers were way beyond me but Zoe had put a friendly post it on each one telling me what each paper was about – wonderful idea.Definitely worth a brownie point⭐️

I raised the question of the reality on relying on our answers in follow ups. And that raised a whole issue of current practices. I said that even if it shows how the current practices need to be revisited, that’s a good outcome. I said revisits 8 months after an event and asking us to recollect is a tad adventurous. We don’t like to feel embarrassed at not remembering so may make things up so we don’t look stupid……or we simply give an answer that comes to mind ‘today’. Especially when asked how has your mood been in the last 2 weeks……we could have had 13 bad days, but today is a good day so we’d say ‘fine’ as that’s how we’re feeling today and, of course, the reverse could happen if today was a bad day.

It made me think of our ‘Dementia Enquirers’ project and how we should think of different means of questioning.

All the groups have finished and they’re mainly doing follow ups, which seems amazing that it’s nearing the end of its life and now the evaluation starts…it will be interesting to see what they found.

Fascinating listening to the complexities of trials. Their heads must be in a spin coming up to the final leg of a project with data spilling out from their heads……..glad I’ve been able to contribute in my own little way.

I forgot to take any photos of the team🙈 but I managed to get this one just outside – not very good but better than nothing🙄

Alison then kindly took me to my dentist appointment venue……..a lovely day out and about thank goodness and just what I needed…..

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.

6 thoughts on “My only trundle during a quiet week……..

  1. Wendy you are so good at pushing onwards every day – at doing your bit to help the rest of us understand, and so helping others who are dealing with dementia. I know you must have some bad days and some down days. But what a difference you are making, all the time. Best wishes from this reader in London. Philippa

    Liked by 1 person

  2. Sorry Wendy – it’s me again! Just read your blog and your ability to make me ‘react’ and feel very positive has caused me to write and send you this…..

    Liked by 1 person

  3. Good you got a day out Wendy..with or without D we all need to get out and about🧚‍♀️I always always love reading your courageous posts and loved your pictures..her wher I live in Australia it’s hot hot hot and so dry atm…thousands of thoughts and blessings dear Wendy….Christyxx

    Liked by 1 person

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