Sleep update highlights post code lottery

Last week I wrote about my terrible sleep pattern which was accompanied by weird dreams all night long. I was amazed at how many people tried to help me. My research Twitter friends retweeted and it was spotted by the research team at UCL who are starting a new study, so we’ll wait and see if I’m eligible.

Many people would say – ask your community nurse, memory service or Gp for help………..well when I moved to my new region it became apparent that people under 65 ‘don’t get dementia’ …….as there are no services……… Here they have a service for under 65 (excluding dementia) and a service for over 65 (including dementia). I was referred to the over 65 because I have dementia but then promptly discharged back to my Gp as I’m only 60………all this happened without my knowledge and it wasn’t until I emailed to find out what was happening that I found all this out! How many people would simply sit and wait for contact and never receive any – slipped through the net and then promptly forgotten…..

My Gp, on my first visit, told me how little faith he had in the effect of Donezepil, so he was going to be no help either.

So this meant my only means of getting any help was through my blog and social media – how ridiculous! But as it turns out everyone was brilliant and so helpful.

The most helpful suggestion was via my blog. It was from someone with dementia who also experienced vivid nightmares. Her response was:

“The Dementia clinic suggested I take my dementia meds in the morning” 😳

You’re clearly told to take the medication at night yet such a simple solution worked miracles. The first night of taking it in the morning, I knew that my head felt clearer and that night was the first night in 2 years that I hadn’t had disturbing dreams. I woke up the next morning totally relieved and thankful. I just hope it remains like this now,
I havn’t had weird dreams since I started taking  the medication in the morning. There must be a reason why they say take it at night, but I havn’t had any adverse effects from reversing it to the morning. Now all I have to do is work out a way of increasing the amount of sleep I get as that hasn’t changed yet, but maybe with time that will improve.

This clearly goes to highlight the post code lottery of accessing services. For some regions to have young onset services and others have nothing at all is clearly outrageous.  For me to have to resort to social media to find a solution to a distressing problem is nothing short of ridiculous………….

How many other people are out there in the East Riding and other areas with poor or no services, with no one knowledgeable to turn to for help? Not everyone is like me and has a network of online support………..how very sad for them…………..

Thank you so much to the kind stranger who took the trouble to comment on my blog😊

 

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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.

One thought on “Sleep update highlights post code lottery

  1. Wendy , so glad you,ve had so much response, we have met many people who have reaction to Aricept, I find that turning on the world service, same as radio 4, helps in the night and you find you fall asleep before the farming ! We also slipped through the net until things changed down here but that is why the Alzheimer Appeal is so important to raise money so that everyone is helped. Keep going you are marvellous and keep me informed about what’s going on !! Veronica and Christopher x

    Liked by 1 person

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