Using Social media

Billy has finally given me back my Ipad – he’s so sad to lose my attention he’s so glad to have me distracted again so he can get me out of his garden ……I might not have been writing blogs but I’ve still been busy…….

Twitter #oktoaskhour

I was asked to be on a panel on Twitter to answer questions on dementia research last Wednesday evening. Each week at 8pm the session had been on a different topic. The week before it was on Strokes so I made sure I watched the process happening as I didn’t really have a clue what to expect. Last week I started to panic as I found it hard to follow what was going on and the speed of everything was very confusing…………
So when I found Anne Hatton was doing a similar thing about patient participation in dementia an hour before my slot I thought this would be a good opportunity to practice. How glad was I that I did that!! It got me use to always adding the # to each response (don’t ask me for the technicalities as I don’t do ‘technical’.) It also made me concentrate on one conversation at a time. Imagine you were in a room full of people, all having different conversations and you’re trying to follow them all………very confusing…….well it’s like that on the Twitter session without the voices, just words.
I spent half an hour with them and learnt so much ready for 8pm. The questions started coming in dead on 8 and they never stopped until the 9pm finish. Lots of topics were raised and Gemma popped up asking a question about consent and ethics – was nice to see a name I recognised:)
Questions were asked around the task of getting public to take part in research. I voiced (or worded) the opinion that there was a misconception that research = guinea pigs and if they used the word ‘involvement’ they would get more buy in. I also said that to include patients from the start would make them feel valued. We have to make taking part in research, both social and medical, the norm and accepted.
If the session had gone on more than an hour I think my head would have exploded – it was very intense, very fastpaced and brilliant. I’m not sure how often these sort of things happen on Twitter but they are certainly a brilliant way of using social media of getting across a point. Next week the session is on mental illness – Weds 13th 8pm #oktoaskhour


Billy 'helping' in the garden
Billy ‘helping’ in the garden


About wendy7713

On the 31st July 2014 I was diagnosed with Young Onset Dementia. 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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