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.
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.
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……
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.
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
At number 3 – Meeting Julianne Moore at the premier of Still Alice and remarkably mentioning me in his Bafta acceptance speech.
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:
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
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……..
Hope you all have a wonderful August – See you all in September – don’t forget me!