Preliminary visit for clinical trials

What have I got to lose?
What have I got to lose?

Well this week saw my first step into the world of clinical trials.

Two very friendly women arrived armed with forms galore and sharps bin…..

Think I scared them a tad to begin with as I wanted to make it clear that I was more than still capable of making my own judgement on the trials. They’d insisted on my daughter being present and all the forms she had to complete were on behalf of ‘the carer’……..didn’t go down well with me, as those that know me can imagine…………

All it would have taken was for the the form to be worded differently with a ‘delete as appropriate’ function for carer/relative/friend…… I can see the need to have someone involved to answer questions on any effects on me over the coming months, but it shouldn’t be assumed that this would be a carer.

Anyway, once I got my rant out of the way I think they relaxed more and I got on famously with them after that – I think it was recipricated!

It’s a 2 year trial  around taking minocycline which is currently used in the treatment of acne but they’ve found it has other possible affects on neurological diseases. They’re hoping it will slow the deterioration rate down in those with early onset Alzheimer’s. You have 3 possibilities – you either get a 400mg dose, 200mg dose or the placebo – I said I didn’t want the last choice, thank you……….:)

They took bloods – very painlessly and easily – I didn’t tell her before the start that it’s usually a problem parting me from my blood, but she was very good and very successful – although she was shaking and her hands were freezing but that may have been a result of me ‘making things clear’ at the beginning and asking them for a full history of what they did before we started….:)

Bloods are now analysed, GP records requested and interrogated before a final decision is made next week hopefully. Everything crossed please.

After we’d finished chatting at the end, I made sure they went away with Join Dementia Research leaflets (can’t resist an opportunity to promote) and they took them away wanting to share JDR with the rest of the team. I’m looking forward to them returning next week as that will mean I’ve got on the trial and they’ll be delivering the medication (hopefully leaving the placebo behind). I hope they left not feeling too shell shocked  – think they’d relaxed by the time they escaped  left, as they were really very nice:)


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.

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