Tag Archives: sharing diagnosis

My experience of the media

Over the last couple of weeks I’ve been fortunate enough to be given the opportunity to experience many meetings with the media.

I had the wonderful experience of Channel 4 invading my living room. It really was a joy, if slightly scary experience… I did comment that I was disappointed that the word ‘suffering’ was used in the heading to the clip on the web, however, the presenter Victoria Macdonald, has redeemed herself and I had a text from her last week apologising and saying she has now got it changed – I imagine that those that write the article are often not the ones to put together the words on the web.

Jim from the BBC came to pick up his video camera last Thursday. He was a joy to work with and is involved in so many different projects. He was interesting to talk to and interested in what I had to say. His interpretation of our story is due to be screen early April, but the date is still to be confirmed.

Tom from the Guardian also did a good job miraculously reducing all the words me, Keith and Hilary had provided to fit the 2 page article he wrote on Still Alice – find it here:

http://www.theguardian.com/film/2015/feb/10/still-alice-alzheimers-accurate-dementia-sufferers-verdict

I said yes to all these because I thought they would write as I would write and accurately interpret the thoughts I wished to reveal. I have to put so much work into preparing for an interview to try to make sure all the right words are in my head – or at least some of them. The woolliness of thoughts is such a nuisance but that’s how I experience life on a daily basis. The challenge of preparing for interviews has certainly worked my sluggish brain so I see that as a bonus.
However, I also said no to quite a few. I wanted to get my voice out to as many people as possible but not at the expense of devaluing what I had to say. So I said ‘no’ to those which just didn’t feel right. I made the fatal mistake of saying yes, and then no to one tabloid. I naively thought saying no would be the end of it. I didn’t expect to continue to receive calls and email asking me to change my mind. Lesson learnt.

What all these ventures have produced are dialogue and that is exactly what I wanted. The comments, as always, to any article were very mixed. What a sad world the place would be if we all agreed with one another. With regards to Still Alice, those that criticised the film for concentrating on Alzheimer’s have missed the point I believe. The movie makers could have made 1001 different films and for each there would have been some who dismissed it as unreal or sentimental. What I see in the film, is a watchable, realistic portrayal of one persons experience. It is there to raise awareness and start conversations. It couldn’t possibly portray everyone’s experience of dementia as each is as different as the individual themselves.

Simply go and watch the film for what it is – a Hollywood interpretation of a brilliant novel of one person’s journey through dementia – simple as that. It’s due for general release on March 6th.

I’m just one of the many voices of dementia of the moment. None of this is done for personal gain,  apart from giving me the personal satisfaction of having my views heard.  As I’ve said before, my shelf life is short so I’m trying to make the most of it and raise awareness at every opportunity. I’ve still got much to say, so until I lose the ability to articulate, I’ll continue to stand on my soap box.

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Channel 4 News Visit for Still Alice

Not sure what I was expecting when I was asked to allow a film crew into my house but I wasn’t quite prepared for the amount of equipment that came in with them…….. The cameraman, producer and presenter, Victoria Miller Macdonald, (personal joke) were all wonderful people and clearly very good at their job. The amount of furniture moving and  filming that is needed for such a small piece was staggering.

I must confess to thinking that the interview would appear melancholy because I wasn’t sure which bits they would leave on the cutting room floor. However, I think the piece was very well balanced and showed positivity as well as reality. The only negative, if there could be one, was the reference to me ‘suffering’ on the web site, but I think both myself (and Julianne Moore in her interview) reaffirmed the notion that we do not suffer, we ‘struggle’ with the disease. Victoria commented that I only paused to think of the right words briefly. What she wasn’t aware of was the two hours I’d spent prior to their arrival reading and re-reading my notes to ensure I had some words in my head. This is all part and parcel of the everyday adaptions you have to make to fit into normality.

My special moment in the piece on the news programme on Friday was when Julianne Moore actually remembered meeting me. I’m sure it was genuine and not stage-managed as her eyes lit up. I’d said to her that she had the advantage over me as she could choose to remember our meeting, whereas I would forget. Well the memory is still very clear in my mind and the photographs and signings provide an even clearer picture. She has, through making one film, raised more awareness for dementia than I could ever wish to do. She had done so much research before playing the role and it certainly showed when she spoke to us.

I have a very short shelf life in my ability to raise awareness and have told the Alzheimer’s society to make use of me while I’m able. I’m a very private person who has allowed anyone who cares to, read about me and my experience of living with dementia. It’s my way of speaking out for those who feel they have to remain silent through embarrassment.

Not everyone will agree with what I have to say or the way I say it, but it would be a sad world if we all had the same thoughts and feelings. All I want is for my words to evoke dialogue and discussion. I’m not embarrassed to have dementia. It is a brain disease that can affect anyone.

After the film crew had left, I couldn’t remember half of what we’d filmed and some came as a total surprise when it was shown on Friday!!
They always say experts make things look simple – next time I watch a 5 minute interview on telly, I’ll know the amount of effort and time it has taken to produce.
Thank you to all those who sent txts, emails and kind comments. Another wonderful experience thanks to the Alzheimer’s society.

p.s. The fact that I’m awake at ‘silly o’clock’ means that ‘normal o’clock’ isn’t an option. This means I missed the fabulous news that Julianne won the BAFTA last night. It also meant I missed her thanking me, Christopher and Gillian in her acceptance speach. and in her interview with the press afterwards. The fact that she remembered us and bothered to mention us was very very special.

https://m.youtube.com/watch?v=cKtw1sulAfY

http://www.independent.co.uk/arts-entertainment/films/news/baftas-2015-julianne-moore-wins-best-actress-award-for-still-alice-10031998.html

Julianne signing MY Still Alice book!
Julianne signing MY Still Alice book!

Reflecting on a Life Changing Year – Part 1

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What a year it’s been……..

2014 started off a dementia free zone. This time last year dementia wasn’t on my radar. It was gently simmering in the background. Little did I know that 7 months later, it would take over my life. I knew very little about it or the work of the Alzheimer’s society – it wasn’t in my website favourites as it is now! In fact, at that time, I’d never been on the Alzheimer’s site. My resolutions or plans for the year ahead did not involve living with dementia. I had 8 more working years ahead of me in the NHS – I loved working…I’d never even heard of a ‘blog’… It just goes to show how life can change in such a small window of time.
Here I am now making short term goals, planning to take early retirement, and doing all I can to promote living well with dementia – what a difference a year can make.

Although dementia had been mentioned as a possibility in the early part of the year, it wasn’t real – not until the day you have a confirmed diagnosis and not until the actual words are spoken does it becomes real. 31st July 2014 was that day for me. You never quite know how you will react to devastating news until something devastating happens. My brain went into survival mode, thank goodness. It would have been very easy to sink into depression, but I’m thankful that I didn’t. My journey had started.

It was a bumpy, frustrating start to begin with – little support available where I live post diagnosis – apart from my wonderful daughters and friends. That is now about to change as plans are now afoot to make support available for all those newly diagnosed and is due to come to fruition in the new year thanks to the work of Emily Abbott and the local dementia forum group. I’m looking forward to working with them to ensure those with dementia are included in this plan – watch this space

My local memory clinic services fell short in every way and offered no support in the first few months post diagnosis – one of the psychologists has now asked those with dementia at the dementia forum group to be involved in the redesign of the service – watch this space

No help was available at work – the very place I expected to be able to rely on – after all Leeds Teaching Hospital treats patients with dementia, why wasn’t it there for me as an employee? Helen Gilbert (Head of Patient Services) has made it her goal to personally deliver Dementia Friends session to all her 80+ managers – I’m helping her with these sessions.
Furthermore, NHS England have asked me to meet with them in the New Year to discuss a toolkit for employers to help support staff – one for those with dementia and one for carers – watch this space

To be continued tomorrow…………..:) out of bad comes some wonderful opportunities…I hope 2015 is kind to you all:)

 

Friends – different reactions to a diagnosis

We all have a lot of people in in our lives, some we consider life long friends, regular acquaintances, work colleagues and people who enter our lives for fleeting moments.

When I was diagnosed and started to tell people about my diagnosis I was surprised at the different reactions from different people.

Those close to me and who see me on a daily basis have been nothing short of angels. Those less close, but who still see me, have shown varying reactions from total support to total ignorance. I do most of the things I’ve always done yet they choose to detach themselves from me and use my condition to administer comments which I simply ignore.

There have been those who don’t understand the diagnosis – after all, how could I possibly have dementia and not fit the stereotypical picture some people have? A lack of awareness leads some people to suddenly feel embarrassed to talk to me. I’m trying to address that and make people feel more comfortable to talk about it and ask questions if they want to.

Those I felt most concern for were those friends and family who don’t see me and our only contact is by text or email. So then I decided to start this blog. I wanted to dispel the myths that may have entered their heads, after all, they couldn’t see me. I wanted to show them I was still me – maybe a slightly ‘different’ me sometimes but I could still communicate via the written word and show them I was OK. My intellect is still intact. I’m still able to articulate via the written word, so it must be difficult for some of them to fully grasp the situation.

I couldn’t say this eloquently in spoken word without a script as my thought processes are slow; I forget the simplest of words and  I simply wouldn’t remember all I had to say. – those are the symptoms they don’t see.

I’m living with dementia and deal with everything it throws at me. For those around me it must seem like a maze of confusion and ‘not knowing’.

All I can say to all of you sharing my journey is thank you for all your love, support and positive thinking

For  those few who have chosen, through ignorance,  or are too embarrassed to communicate or have made cruel remarks  –  all I have to say to you is that you’re missing out on a valuable lesson in positive survival with a condition that may one day affect your life or that of your love ones.

 

 

Acknowledging the diagnosis at work

I’m in my 20th year of working in the NHS and I’ve loved every minute – well almost! Whatever I do I have to do well and hopefully my work colleagues will endorse that  – although I won’t ask them just in case…………..

Confession time (to those that don’t know me) – I have been something of a workaholic. I’ll happily catch up with emails on a Sunday night ready for the week ahead. When workload exceeded the number of hours in a day, I’d simply log on in the evening when I got home and continue whatever needed doing. It was just part and parcel of the work I always enjoyed.

In September, once I’d come to terms with the diagnosis, I decided it was time to come clean with my team. They were use to me having  a bad memory but had always put it down to the stroke I’d had 18 months ago, so that was nothing new to them. I knew I was getting slower, could no longer multi task and struggled to follow conversations in meetings. I felt it wouldn’t be long before they recognised all these extra shortcomings too, so I decided to deliver a talk on ‘Dementia Awareness’ before telling them of my diagnosis.

They have been wonderfully supportive. It must have been a difficult and embarrassing talk to sit through but I did try and bring humour into the situation to reduce the seriousness. I can forget where I am sometimes so I described this by saying I sometimes need a sign to hang around my neck which says ‘Back in 5 minutes’. A sense of humour is something you must never loose………

Working in the NHS and having a wonderful team made me feel confident that I would receive the support I needed once I did ‘come clean’ about the dementia. It was a momentous decision to say it out loud. Obviously you always get those  who suddenly think you have 2 heads and use the diagnosis to accuse you of all sorts but, after my experience, I would always recommend honesty and openness to anyone at work so  you can get the support you’ll need.Those that know you well will treat you well. Today’s ‘me’ is a totally different person. A diagnosis of any illness will focus the mind. A diagnosis with no cure and an inevitable end will suddenly wake up every self preservation cell in your body.

It took me several months to accept that it’s ok just to work at work and make the most of the time at home to enjoy being at home.