The importance of research

As you may or may not know I’m passionate about research. Research has this false image of research =guinea pigs. If we replaced the word ‘research’ with ‘involvement’ I’m sure it would have lots more taking part.
Research is not just about clinical trials. I’m involved in many ways…………….

I’ve been testing an app for facial recognition – anyone can do that
I’ve helped a Phd student with her project on dementia design by answering questions – anyone can help students
I’m part of the Alzheimer’s society Research network – we give our opinion on the value of research studies from researchers requesting funding from the society – anyone can volunteer.
I’m a Research monitor for the Alzheimer’s society – we monitor studies which the society has funded by visiting the researchers and listening to the progress being made – anyone can volunteer
I’ve taken part in a social research study for the West of Scotland University on being in employment once diagnosed with dementia – anyone can take part in social studies
I’m a Join Dementia Research Champion – encouraging people to sign up to the new database that matches researchers with volunteers – I’ve also signed up on the database – you don’t have to have dementia to sign up to Join Dementia Research – anyone can sign up.
I’m taking part in a Clinical trial to see if an antibiotic drug currently being used to treat acne is effective for people with dementia – anyone can take part in clinical trials.
Have you noticed the theme yet………? 🙂 anyone can become involved in research in a variety of ways.

A very low % of the public currently take part in research of any form. I’d hate to see research progress at the expense of quality of life but the world can’t progress and move forward without research into all manner of things but the public has to play its part too. We all have a part we can play no matter how small………..

For those of you not aware, I’ve recently joined the realms of Twitter (still shocked by my leap into twitterland!) but I’ve ‘met’ some wonderful people via Twitter.
An initiative to take Twitterdom by storm is called #whydowedoresearch – it has now gone global and even has its own web site! http://whywedoresearch.weebly.com They exist to promote all types of research and patient involvement.

I’m pleased as punch to have become it’s first public ambassador. It’s founders were Claire Gibbs, Senior Clinical Research Nurse, and Abby Greaves, Research Administrator, at The James Paget University Hospitals NHS Foundation Trust. Michael Keeling , Stroke Research Nurse at York Teaching Hospital NHS Trust was appointed as their first National collaborator.

I’m so thrilled that , this week, they heard that they’d been shortlisted for the Nursing Times Award (Clinical Research Impact Category) I’m so proud of them! I’ve met them all and they are truly wonderful people and so dedicated to research. The initiative is going from strength to strength and I can’t wait for their next step forward.

image

Advertisements

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 “The importance of research

  1. I couldn’t agree more, Wendy. I was a student studying drug development at St. Andrews and getting people involved who suffer from dementia is absolutely vital to developing effective treatment in the future. Great news about your clinical trial too! If it’s the Minocycline trial you’re on, the previous results looked very promising! 🙂 Good Luck!

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s