Being part of the 12 hour Chatathon…….

On the 7th September 2020, Adam Smith hosted the Dementia Research Chatathon LIVE – to share information on the wide variety of research taking place across the world, and to raise money for Alzheimer’s Research UK.

He invited myself and my lovely playmate Chris Roberts and his equally lovely wife, Jayne Goodrick, to open the 12 hour session. You can hear what we said on the link at the bottom…..

I hate watching myself and made the mistake of watching it to remind myself  what we’d spoken about. But the continual twitching of my face and movement of my hands I find so sad. I always used to look so calm in my previous life. The aura of calmness was a trademark, people used to say, but not any more….the intense concentration can be seen on my face. Trying to keep up with the conversation, a sign of my dementia….I can be twitching away, these involuntary movements taking over, then I’ll realise and can stop….only for them to start again a few seconds later 🙈🤷‍♀️

Well, as you’ll see and hear, Adam was worried about filling the 30 minutes we had with him, but once you start us off, you can never shut us up….😂🤣

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.

8 thoughts on “Being part of the 12 hour Chatathon…….

  1. That was the best half hour – very edifying – and you are all so right – the medical profession needs to get better at how they talk to people about what is out there . And stop making assumptions – they need to give options so each person can decide for themselves. I’m am sending the link for this to all my colleagues / family as I think you, Chris and Jayne were incredibly eloquent. One point that I will certainly take away and act on is about people without dementia getting involved in research. Thank you.

    Liked by 1 person

  2. Thank you Wendy for flagging the chatathon – really enjoyed it. I am a carer for my mother ( mixed dementia) and would love to be involved in research but no idea if I’d be useful or how to find out about it locally. Will now look into it a bit more and see what I can find. You are doing so well, I didn’t think about the twitches just enjoyed hearing your views and seeing your smiley face. Xx

    Liked by 1 person

  3. Thanks for this, Wendy, I listened to all this clip, amazing it went on for 12 hours! It was fascinating and inspiring, so good to ‘meet’ Jayne, Chris and Adam. I don’t think you should worry about your involuntary movements, which disappear whenever you speak.

    What you were talking about rang bells for me. I am involved with Parkinson’s support groups as my sister has Parkinson’s. It’s known that that a dementia, known as Lewy Body dementia can also affect people with Parkinson’s, as well as all the movement difficulties and many other problems they have to deal with.

    Because of that, like Jayne, I am involved in research, and it’s a comfort to me to know that I might be helping. They’ve been looking for a cure for over 200 years, ever since James Parkinson first described it. I think every small achievement in research adds to the total that’s gone before. And through research you can also find out what doesn’t work, and that’s just as important.

    I was pleased to see that before this video ended you had been joined by two medical people, encouraging to see that they are willing to listen to the real experts – ie you and Chris.

    Thanks again, Wendy.

    Liked by 1 person

  4. Hi Wendy,
    I’m a 32 year old girl from Sweden. I wrote a comment before, a month ago, that i’ve read your book. I love your posts, please keep posting ❤

    First of all, let me start off by saying you look wonderful!! About the twitching in your face, I couldn't see it at first. When I watched the video and read your post once more, I hade to go back to the video and look after the twitching to see if you had made them up. After some digging I could see some small twitches you were talking about. I feel bad for you, but I also want to tell you that for me, never seen a video of you before; I didn't even see them at first.

    Okay, so the reason I actually wrote this was actually not to comment on your looks (but I felt I had to, because I don't want have you believing that they are something you even notice) – the reason was to ask ABOUT the twitching. (My grandmother – as I wrote you before – has alzeimers and I try to learn as much as possible about it), is it alzeimers-related? And do you know why they appear?

    Lots and lots of hugs to you. And thank you, for letting us be a part of your life and your journey, it's remarkable!
    Love,
    Alexandra

    Like

    1. Hello Alexandra. Lovely words, thank you! As for the Twitching, well know one can answer me that question but I didn’t have them before dementia so who knows really. Hugs to you 🤗x

      Like

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