Filming with the Alzheimer’s Society

I split my work hours last Wednesday to enable another lot of filming, this time for the Alzheimer’s Society themselves. I’m lucky that I can work from home so did 6-12 and then finished my hours after they’d left.

It was so funny when the lovely Rebecca (producer), Hannah (sound recordist) and Joe (Alzheimer’s volunteer and chief helper)  arrived. I don’t know why but I hadn’t expected so much equipment. Bit silly of me really as they need just as much as everyone else! In they trundled with suitcases, bags and tripods……..chaos ensued while they set everything up.

They wanted to make 3 films, one to be used for the Dementia Awareness Week in May. For both of them we had to film minus glasses – I’ve forgotten already why! But it made sense at the time. So apologies to family and friends who know me only in glasses – it might look a tad strange when you see it (who said ‘you always look strange’….!) My thinking was ‘does it matter’ – my new phrase of the moment.

For one of the films, I had to learn a script and talk straight to camera………there was a plan B in case I couldn’t get it all in one go. We were going to break it down into sections and then intersperse footage of me to cover the breaks. Luckily I wrote most of it – they’d just tweaked it to fit the circumstance better – so constant repetition over the previous 2 days was hopefully going to see me OK. We went for the first take and it felt like everyone was holding their breath as they waited to see if I got to the end. Doh! Stumbled over a couple of sentences……we did 5 takes in the end I think and I got there eventually – huge sighs of relief all round. You can see it on the Alzheimer’s Society Facebook page as it was released on Monday to celebrate Julianne Moore winning the Oscar – another magic moment for awareness.

We then took some shots of me pottering around, as you do. Finally we did a short interview for the Dementia Awareness Week. As always, it was all good fun with really delightful people.

All the media interest is coming to an end now. Today is the last planned interview, for Woman and Home magazine. It’s been interesting to see that side of things, but will be nice just to get back to normal. I much prefer just writing my blog and articles.

Remember each and every person diagnosed with dementia is unique. My story is just exactly that, my experience. I represent those living with dementia in the press and on film simply to raise awareness.

 

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.

 

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!

The most surreal week yet…

This week I’ve got the most surreal week so far……
Monday: Channel 4 coming to the house to film for Channel 4 News (to be shown Friday evening)
Tuesday: meeting with NHS employers to discuss their plans for two Employer Toolkits. One is for employers to support employees with symptoms of dementia and the other to support those juggling work with caring for someone with dementia
Wednesday: working day but also deadline for an article for The Guardian newspaper
Thursday: London at the premier for Still Alice – meeting Julianne Moore for a chat and various reporters
Friday: just working – I think…

Saturday: filming me, Sarah and Gemma chatting round the kitchen table (obviously the one I’m looking forward to most:)))

If anyone had told me my diary was going to look like this a year ago I would have laughed very loudly. I suppose all the above have to come under the heading of ‘advantage of living with Alzheimer’s’. I’ll just try to take the opportunity to raise as much awareness of dementia as humanly possible in one week.

Any week is Dementia Awareness week in my book!

New experiences

Jim came to see me last week from the BBC. He is making a short documentary following on from the forthcoming release of Still Alice. Three of us with Alzheimer’s at different stages are being asked to make a video diary of snippets of our life living with dementia.

Sarah, my daughter was there too so that at least someone else would know how to use the camera once Jim left.
He was very patient, bless him. He went through the sorts of filming he wanted me to do. Sarah kept asking the Spielberg questions around types of shots and I kept asking where the on off button was………..:))) I did a bit of filming at the weekend and then had to do it again as I obviously hadn’t pressed ‘record’…..and then again as I hadn’t the mike the right way round……..ha!

Jim has kindly offered to let us have a copy of all that we tape, so me, Sarah and Gemma are going to take this opportunity to record our own conversation at the kitchen table. This will  give them something to look back on in the future as a record of a time spent together simply chatting as a family does.

It all seems a bit surreal but I feel so lucky to have been offered such an opportunity to do something different. I know lots of people have done this sort of thing but I haven’t.  Every time an email appears in my inbox asking ‘Would you be able to or ‘would you like to’ I now just say yes, without even thinking, just to grasp every opportunity while I can. I’m so grateful to the Alzheimer’s society for sending all these opportunities my way – thank you to all those who have asked me to be involved:)

Take 346…….

 

 

 

‘Text Santa’ fundraising on ITV tonight!

http://www.itv.com/textsanta

Please remember that the Alzheimer’s Society is one of six charities benefiting from tonight’s Text Santa live on ITV.

‘Text Santa is ITV’s annual charity fundraising appeal, raising money and awareness for six UK-based charities each year. Text Santa helps to improve the quality of life for vulnerable people in the UK by inspiring, engaging and empowering the nation to make a difference at Christmas time. The main appeal will involve a range of fundraising and awareness raising activities in the lead up to the main live entertainment show tonight, Friday 19 December.’

I’ll be txting Santa – will you?

http://www.alzheimers.org.uk