MADE TRIAL – 18 month visit

Last Friday saw my 18 month visit for the MADE trial. This is the drugs trial where I’m taking Minocycline – an antibiotic drug currently being used to treat acne. They believe it may reduce inflammation of the brain in those with Alzheimer’s.
The 18 month stage involved me doing the basic memory test and then me and Sarah answering questions re activities and daily tasks as well as having bloods taken.
I’m still with the York team for this study so Jenny, the research assistant, met us at Sarah’s house which is half way for both of us.
Clinical trials are all based around quantitative data as opposed to qualitative data, proving whether the drugs work or not and I’m sad to say this is reflected in the questions we had to give.. There is no half way house answer – it’s either ‘you can do something’ or ‘you can’t’. For so many of the responses, my actual situation didn’t fit any of the answers so we had to choose the nearest, which were inaccurate. I can still do some things to some extent as I’ve adapted and use strategies to enable me to continue, e.g. Cooking. I certainly can’t cook as I use to as I can only use 1 pan. Yet the nearest answer was that I could still cook as before….

The answers we gave made a mockery of the information collected as the response weren’t a true reflection of my ability. I can’t see what valid information they can collect if the answers we’re giving aren’t precise so I don’t understand the value placed on the data and how they can use it to analyse the drug….

Don’t get me wrong – I understand the need for evidence, I just question the narrowness of the choice of answers that we can select, which in turn leads me to question the validity of the results.

The research assistants have fed this back to the powers that be, but it won’t change things for this trial….It’s makes me appreciate social research so much more as answers are much more open and able to reflect reality.

Last 6 months now, so looking forward to be able to make a better informed decision for my next trial as I was very naive when I chose this one😊

For the first time ever, trying to get the blood out of me, worked first time – so not a pin cushion for once!

The size of the medication box still makes me chuckle.....
The size of the medication box still makes me chuckle…..

 

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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.

2 thoughts on “MADE TRIAL – 18 month visit

  1. Hello Wendy

    I found this blog especially interesting as I found exactly what you have found when

    Eric was involved in a study as a person with motor neurone disease.

    He was regularly sent questionnaires about the progression of the condition but the answers

    from which to choose did not allow for deviation, explanation, elaboration, etc..

    As he found writing impossible I wrote his comments about the questions and the inability

    to be able to answer the question truthfully as there were no comment boxes.

    Not once did his observations get acknowledged and in the end they stopped

    sending questionnaires, with out explanation! I guess we were an irritant.

    I have often thought about that experience when I have been reviewing. The results had to be deeply flawed

    as there was no way to capture the lived experience of MND.

    You seem to be prevented by the design of the questions to be unable to show your experience of your

    condition.

    Best wishes as always

    Barbara

    ________________________________

    Like

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