A Year on – What a Difference a Year Makes!

It’s a year ago today since I was given the devastating news of a diagnosis of Alzheimer’s – Happy Birthday AL! What a lot has happened in a year! I think I can safely say that my life has changed – obviously some parts for the worse yet other, strangely for the better. To ‘look back’, I’ve had to read through my blogs – I suppose that is one of the major changes – the fact that my blog has become my memory. I’m amazed at some of the things I’ve read….

Let’s get all the negative out of the way first……
I remember feeling abandoned post diagnosis as local services were sadly lacking. Sadly, nothing much has improved in that arena. However, the group I attend, Minds and Voices, are now working with Healthwatch York for 2 years to highlight the needs of those with dementia in order to bring about change. So at least there’s a light at the end of the tunnel for change to take place.

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I suppose I couldn’t talk about the last year without talking about the changes in me. I’m still taking Donezepil and am still on the MADE trial. My memory is worse but with all the aids I have around me I can function fully – without them I’d be lost. The biggest thing I’ve noticed is regards to other sensory changes. Noise, sight and movement have all been affected in some way. No-one warns you of these possible changes so each makes its appearance out of the blue.
I’ve always been highly organised – now there’s a ‘need’ to be meticulous with planning when travelling – I now travel with printed map, instructions and a picture of the building I need to find – all coping strategies which make travelling alone still possible.

So glad I found these!
So glad I found these!

I feel lucky to have been diagnosed early, while I can still speak out – many others I know aren’t that fortunate. However, I can’t stress enough how exhausting ‘raising awareness’ is. I was so shocked by the lack of awareness and lack of understanding and lack of services, that this once so private person is now willing to do everything I can to talk publicly about what it means to have dementia to try to bring about change. Luckily there are many of us around the country doing the same – we all find it intrusive and exhausting but feel we have no option if change is to happen. I’ll continue to challenge public perception and shout from the rooftops for as long as I’m able.
Which brings me to the next change – TIME. Due to the very nature of the disease none of us know how much time we will have or how quickly the disease will progress. Some days there’s a desperate panic to get everything said or written before I forget – time is more important and I’m now obsessed with cramming in everything while there’s time. That’s why bureaucracy is now even more frustrating as it takes so long to bring about change.So many unnecessary hoops to clamber through……

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I’m sure there could be a lot more negatives if I thought about it but luckily I’ve probably forgotten them – bonus!
One thing I’ve learnt from this year – don’t worry about the niggles in life – in the grand scheme of things – what do they matter…….

But enough of all the issues – what good things have happened in the last year? I could have done the Top 50 and still not included everything………

Well again, I’ve trawled through my blogs and come up with my Top 5 opportunities’ that wouldn’t have come my way if I hadn’t been diagnosed with Alzheimers……’The advantages of having Alzheimers’!! Hope you’re all playing the countdown music in your head of the Top 40 from years ago………

At number 5 – Being able to speak publicly at events all over the country to raise awareness and to highlight that dementia not only has an end stage but a beginning and a middle.

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At number 4 – Meeting Charlie and Louise on the BBC Breakfast sofa last week and speaking to Jenni Murray on Woman’s Hour yesterday – sure you’ll find a link on their web site if you’re interested

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At number 3 – Meeting Julianne Moore at the premier of Still Alice and remarkably mentioning me in his Bafta acceptance speech.

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At number 2 – Meeting and making so many wonderful new friends – from professors and researchers to students and professionals, all passionate about dementia, to all those new friends and family affected by dementia – they’ve all made a difference and brought new light into my life during this last year. Thank you. Not enough room to include photos of everyone so this instead:

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At number 1 – Has to go to my 2 daughters, Sarah and Gemma, who have stepped up to the mark and provided wonderful support to me during the last year 😍xx

The best of all......
The best of all……

It’s been a bit of whirlwind of a month and I’m all talked out so I now intend to have a month off from publishing my blog to recharge. II’l still be writing as it’s the only way of remembering what I’ve done but I’ll be writing them as and when I feel like it. My intention was to have a blank August with regards to talks but a few opportunities have been too good to turn down so I find myself off to Glasgow, Manchester and several other events during the month which I’ll tell you all about them as and when they happen or in September. I’ll still be tweeting though!
Let’s hope summer returns – I saw a great image on Twitter which sums up the weather lately……..

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Hope you all have a wonderful August – See you all in September – don’t forget me!

 

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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.

24 thoughts on “A Year on – What a Difference a Year Makes!

  1. Hi Wendy. I met you yesterday at the Alzheimer’s event at the King’s Manor in York. It was so interesting to talk to you. I hope you enjoy your month ‘off’ though it doesn’t sound like it will be that quiet after all! You are an inspiration. With all best wishes Gill

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  2. Wendy – It’s really heartening to hear positive stories from inspirational campaigners like you. Our story with mum is very different and just goes to illustrate how varied the progression of Alzheimer’s is. Mum appears to have no insight at all into what is happening to her so reading your blog helps me gain some understanding of what she might be thinking. My aim with my blog http://www.mumhasdementia.com is to look at the carers’ side of things but I really enjoy reading about people who are actively living with the disease and not letting it run their life.

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  3. Ola Wendy.So glad you are at last taking a step or 2 awaay. I will continue to to read every blog and look forward to our next breakfast together!!! COLx

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  4. Wendy
    It’s been fascinating and humbling reading your blogs over the last year. Thank you so much for sharing your experiences and educating your readers. Your insights have been invaluable.
    I know you’ll achieve even more in the year to come. Have a good rest in August.
    all the best
    Nicky

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  5. Hi Wendy,
    You are doing so much to raise awareness and keep dementia in the spotlight and you are looking FABULOUS too! Your coping strategies must be a great help to others. Long may you continue your excellent work. Sorry I haven’t been able to get to some events recently but life has got in the way. Hope to meet up again soon.
    Much love and hugs,
    Susie
    xxx

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  6. Found you somewhere a couple days ago and now am trying to read back through some of your posts. I know I will not be able to catch up but just wanted to say, even just reading these few and knowing your story…. You certainly have not and will not be forgotten 🙂

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