Interview for new research study….

Yesterday me and Gemma took part in a new research study for those of us with Young Onset Alzheimer’s called “Alzheimer’s Disease Genetics”.

The aim of the study is to try and understand more about how certain genes affect the likelihood of developing AD. The info sheets states:

“This will help us to search for environmental, biological and genetic factors that influence progression of Alzheimer’s disease and other neuro degenerative disorders”

The research is being carried out by Cardiff University school of medicine but it was my local research team that came to the house. I’d met Saba and Lauren before as they came to visit me for another piece of research I’m involved with – can’t for the life of me remember what that one was though!!

For me it involved an informal interview including the ubiquitous memory test along with donating a blood sample. For Gemma it was simply an interview.

It’s been running since 2001 and they’ve found genes previously unknown to dementia. Now they’ve decided to invite people with Young Onset to take part.
This will hopefully lead to better diagnosis methods.

It’s a one off interview and a nurse will come back at a later date to take my blood.

They asked basic screening questions before we started, signed the consent forms and then we split off into different rooms.
Me and Lauren went through the memory test first – it was the more in depth one which was better. I always have problems remembering the 3 words and the address and I knew the clock I drew was wrong but couldn’t work out why.
The most bizarre was when Lauren went back through and brought in the answers Gemma had given to some of her questions. They were all about what I’d been doing during the last week and last month……I couldn’t remember what I’d done in the last week🙄. Lauren was able to give me a clue……”Have you been away?” – I didn’t think I had…….”Have you been on holiday?”……..😱😱😱 Of course, I’d been to Keswick! I’d been to Keswick and I’d forgotten😥……..Needless to say I couldn’t remember what I’d done or where I’d been during the last month……Thank goodness I write my blog – I always say, my blog is my memory and this proves what a valuable resource it is…

We’d been warned that Gemma’s interview with Saba would take a couple of hours; mine took about an hour, so me and Lauren sat chatting and organised a date for the nurses to come. Usually the research assistants from York take my blood (with difficulty) but the team from this area insist on nurses taking blood as they’re more use to it. I like that idea because they take blood so infrequently that it often takes 3 or 4 attempts and must be stressful for them as well as the participant.

In no time at all Gemma had also finished. Saba came in and asked me questions Gemma could answer. The funniest was around medical history……Saba asked me if I had any heart conditions……I said ‘nope’……..Gemma piped up, “did I imagine the hole in the heart’….’Oooo yes, forgot about that’😳 Which is why I always say that medics should not take the word of someone with dementia……….😊

A lovely 2 hours or so spent with 2 nice smiley research assistants……….

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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.

3 thoughts on “Interview for new research study….

  1. Yesterday, after reading the gait information I sent you, I practiced walking down the hall while counting backward from 100 by 2’s. The heels weren’t good, but barefooted was better.
    This morning at the gym I was better, and shared the study with friends who were amazed by how difficult it was!
    Thank you for sharing with us.
    Priscilla

    Liked by 1 person

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