Filming with the two Liz’s…..

Yesterday I had a home visit from 2 Liz’s from Hull University……Liz Walker from from Hull York Medical School had asked if I was free to deliver a session to clinicians in February but I wasn’t so they asked if they could video me instead!

The medical school is introducing a new module looking at implementing treatments and care with evidence of direct benefit, for people living with advanced and chronic conditions. Liz believes It’s really important, in this context, to hear the voices of people living with health conditions and to understand the role they can play in research – perfect ….

I usually meet people in my village office, aka the local coffee shop 😂 but because they wanted to video, I agreed to them coming to my house. They’d both attended my graduation at Hull so I did know them…

Anyway, we decided on yesterday at 10am. A dull grey day greeted me as I opened my curtains….but the back of the house offered glimpses of a hopeful day

So I joked that I would need to change rooms in order to see the hopeful side..😂🤣😂

Any way Liz and Liz arrived as planned and then began much hilarity setting up. Liz Price had come as ‘technical support ‘ and we all chuckled finding the right way to set up a iPhone so it would be stable. Liz then came up with the genius idea of resting it on her open iPad and hey presto, we had a recording studio. All that was missing was the clapper board 🤣😂

It worked really well. Liz W had sent me the questions ahead of time so I’d been able to type my answers. Leaving it to chance means I miss out so much of what I want to say and I end up stuttering and faltering my way through…..but this way everything was in front of me.

They were there to ask about the value of involving people like me in research, about the challenges, payment options, and my experience of working with health care professionals and academics…etc

Part of my response about the challenges I’ve found was:

The challenges often don’t lie with us but with the researchers, to think carefully about our possible needs and react in a sensitive way.”

We did it in one take and all went wonderfully. They are such nice people and their values and beliefs on inclusion are perfect…..and they kindly agreed to a piccie

My video will be played to students in February……..

I then asked them a big favour….whether they were going via Beverley on the way to the Uni as I’d also promised to go to York if we finished early enough. Our able enabler, Anna Harrison, was running the stall on York market today and I said I would join her for a little while if I could get there. Well they did give me a lift and I did get there on what turned out to be a miserable cold blowy day, especially as we crossed the Wolds with the rain heaving down…but the bus trundle was still lovely, and the rain didn’t start until I’d taken this piccie as we passed the Westwood…..

……. I had nothing better to do and it was nice to get a New Years hug from Anna……..

I arrived and after hugs and a catch up Anna went off to get warm and a cuppa. It was a cold breezy day but nice watching the world go by. As Anna returned then playmates Eddy and Charlie each passed by on their way to the shops which was lovely. Our stall was promoting Minds and Voices, DEEP, Dementia Diaries, Healthwatch and all dementia related services in York, so leaflets galore, which did have to keep being saved from gusts of wind…🙄

Me and Anna both did the Skydive last year and are looking for our next challenge and she was delving into Google for inspiration. I did see my local hospice are doing abseiling down the tallest building in Hull but the vista around didn’t look that inspiring…….we’ll keep looking….

We didn’t have many visitors to our stall on this cold January day but the ones we did were well worth getting cold for……..and it gave me something to do……..😊

 

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.

4 thoughts on “Filming with the two Liz’s…..

  1. Looks like you are easing your way back into the swing of things, and enjoying it all. Good on you, Wendy! You are an important voice for folks to hear.

    Liked by 1 person

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