To all Healthcare Professionals…..#handouthope

To all healthcare professionals…..

Imagine yourselves in my shoes – being given a diagnosis of Young onset dementia. Your life falls apart, you feel worthless and of no use to anyone any more……Services are non existent so you feel abandoned.

That’s what happened to me when I was diagnosed.

Now, Imagine, if someone came along and asked for your opinions, asked you to be involved in gathering information. Someone who was genuinely interested in what you had to say.. Imagine how that would make you feel………
Imagine the impact on your well being – finally hearing someone acknowledging that you still had something to give; that you still had a valuable opinion and views that mattered.

That’s what happened to me when I started to be involved in research.

As soon as I was diagnosed I wanted to take part in research – however, my clinicians decided for me that I wouldn’t want the hassle, so never offered me the possibility.
That should have been my decision to make, not theirs.
All it would take is for clinicians, any healthcare professional, to hand out hope – by simply handing over a Join dementia Research leaflet and allowing me to make that choice.

We need to have an alternative to just hoping and wishing you don’t get dementia but this can only be achieved through research. Being involved makes you feel valued as you’re contributing to possible future developments – you could be helping your children, which is a great driver to being involved in research.
We all know there is no cure and without willing volunteers to test new theories, new technology, and new ways of living, we’ll never find the best ways to live with dementia whilst we’re waiting for that elusive cure.

Please hand out hope as hope is all we currently have……

Thank you

Our web site can be found here:

http://handouthope.today/about-us/

Myself, Chris Roberts and wife Jayne, Hilary Doxford and partner Peter, set up the web site with the help of Piers Kotting and Andrea from Join dementia research.

You can download or order Join Dementia Research materials free of charge.
http://news.joindementiaresearch.nihr.ac.uk/join-dementia-research-materials/

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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.

7 thoughts on “To all Healthcare Professionals…..#handouthope

  1. Regarding the research though, when my wife was diagnosed with early onset Alzheimers in early 2013 (shes 59 )we did get onto a trial drug which Jan enjoyed being made a fuss of taking her blood, urine testing heart and everything else, a full MOT, but she didnt like the drawing or some of the questions as she could not answer or have the ability to draw now.
    To get onto a drug trial they test your MINI MENTAL SCORE. I think Jans was 18 at the time of joining the Particular trial she was on, code TRx-237-005 and just got on.

    We got back from holiday after Christmasthis year to get a phone call telling me the trial has been with draw! No letter explaining why!

    I have tried to get Jan on another trial but because her MMS is only 11 now forget it, shes washed up now on the pile! Yes thats how I feel.
    I have e/mailed one of the London hospitals as there was a article in the Mail to be told they are looking for people with MMS of 20 and above! I told them with the time people get diagnosed in this country thats going to be hard to achieve! I went private to get a brain scan to find out what was going on with my wife’s brain as we thought she may have had a stroke! We both wish she had now, that would have been far better.

    Surely these people need as many as possible to be on a trial, any flicker of hope surly is better than just sitting there with are heads in the sand, or in my wife’s case just waiting for the dreaded day she dosent know me any more!
    I suppose its all about money in the end, she wants to end her life but I dont think she would have the ability to do that now if we went to Switzerland.

    Liked by 1 person

    1. Thank you for taking the time to write😊your wifes experience is very common and why I now try and sit in research groups to help them understand how to make the experience better. Best wishes to you both😊

      Like

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