I was convinced I still had to record this interview. I was even about to ask when it was going to happen. But then, all of a sudden it appeared on Twitter……..
I’ve listened to it amazed at the lovely conversation I had with the presenter, Piya. She was so kind.
It was also interesting to hear the sentences and words I used. People listening to it might think me eloquent and fully coherent, but I know I’ve said those sentences and words a thousand times. They appear to be stored, waiting to be released when the interviewer feeds me key swords, as Piya did so beautifully.
At one point I say, “The one person that never let’s me down is me”……I’m very lucky and have been for many years, that I’m happy in myself and it’s been a godsend with dementia.
The programme isn’t just about dementia, it’s about memory in general and how much we can rely on it. A fascinating programme.
Anyway, hopefully this link will work for you from CBC radio. Not sure how long its available. The programme was called Out in the Open. If you scroll under the first picture, it says, ‘Listen to the full episode’ and I’m on at the beginning. And Piya gives a lovely comment right at the end, bringing the listener up to date with the blog I wrote about the interview afterwards.
Last week I was asked if I would be interested in chatting on Canadian Radio about Memory.
It was a request from the CBC Radio One program, ‘Out in the Open’. who are interested in speaking to me as part of an upcoming episode on the fallibility of memory, and more acutely, on dementia and Alzheimer’s. They’d asked if I would do a pre interview via Skype video with producer, Debbie Pacheo.
I really don’t like Skype. It’s not very friendly and never works straight away but it was all they could offer as they usually do the interview by phone, which I can’t do. True to form, as the Skype call started, a blank screen appeared; I could hear them but they couldn’t hear me. Then I could see them but they couldn’t see me. Anyway after much faffing, we found each other.
Debbie, the Producer, was lovely and the pre interview seemed to go well and the real thing was arranged for yesterday.
They’d decided to send over someone to my house, to record the sound from this end so freelancer, Lucy Ryan arrived nice and early and then the internet connection decided to play up……..😳🤯….cuppa tea time…….when in doubt, switch off, switch back on again……
While I ignored the red light and flickerings from the little internet box, me and Lucy chatted away. She’d come on the train from Sheffield and, as well as being a freelance audio buff, taught Chinese students how to speak English at the University …..because she was Irish, I asked if they spoke with an Irish accent, but apparently she has a teachers voice as well as her everyday voice……..☺️
I was due to speak to the host of the programme, Piya Chattopadhyay and was glad to see red become orange and the internet connection come back to life again. Right on queue, the Skype sprung into action and Piya’s face appeared on screen. No technical hitches this time!
She asked if I remembered the detail of the pre interview I did the other day ……..😳………..nope……..🙄……as usually they relied on the person talking about the same thing😶………was never gonna happen. But I knew if she fed me words, that would bring out sentences I’ve said a thousand times before, we’d be ok. If I’m not reading my own words, the interviewer has to know the magic words which will ignite a sentence to appear out of my mouth. That’s why it’s so important for them to have chatted to me or read my book. Otherwise, I’ll ramble about anything. I’ve got a good excuse if it all goes wrong, but they just look incompetent……..🙄
We must have spoken for well over half an hour about this that and everything ……I so wish I could remember most of it but I can’t. I did remember one thing…..Piya asked me whether I trusted my memory. My response was no, and that I have to place a lot of trust in others…….and we also spoke about the advantages of living alone, as I remember her laughing at my responses……..🙄
Even though I’m typing this straight away after the interview, the detail has gone, vanished……..but hopefully I did a good job. What I do remember is that Piya had a nice smiley face and was lovely to chat to……..apparently, for anyone in Canada, this will air on January 6th and be up online the Friday before.
Once again, I forgot to take any piccies🤯…..so instead, I’ll show you the Korean version of my book that arrived in the post yesterday just before the interview….…stunning cover design…😍
Looks so weird but beautiful written in their language❤️
Yesterday I trundled down to London to film some videos in preparation for the release of the paperback version of my book……The lovely folk at Bloomsbury had suggested we make 4 – 2 of me reading extracts and 2 of me and Anna chatting away.
So it was then that I set off on a very misty morning. I’d found my planned train had been cancelled – surprise surprise………but luckily Jasmin had booked me an Anytime ticket so I could go on the earlier train as the next one would have made me late…..
As it turned out it was a good job I caught the earlier one………as we became later and later as one issue after another caused delay – the level crossing not working, signals the wrong colour, slow train in front🙄
I was sat on my own until Doncaster but then a business man came and sat beside me. Turns out he was an Insurance Consultant so not the sort of person I usually chat to! But he made phone calls and did some work and then suddenly struck up conversation about Glass Half Full versus Glass Half Empty people – goodness knows why😳 but after half an hour of chatting happily I mentioned my book🙄 and how I felt very lucky to be a Glass Half Full person as this meant I looked for positives to help me cope. Turns out a friend of his had recently been diagnosed with dementia so we had plenty to talk about…….😊
By the end of the journey he’d ordered my book on Amazon……amazing what you can achieve through a simple random conversation☺️
Anyway, me and Anna arranged to meet for a cuppa beforehand for a lurgy hug and catch up.
We went through what we might chat about and had a catch up before making our way across Bedford Square to the offices where we were met by Hannah.
Hanna from Bloomsbury has obviously been stalking me as she told me exactly which top to wear😳😂. It will be shown come spring so we had to be ‘springlike’, which is very hard when Christmas is a coming🤣
We walked upstairs to the office to be met by a lovely cameraman who would be doing the filming. I also remember having lots of cuppa teas and look what they’d made sure they had…..
I recorded 3 readings with the auto queue, which was weird but went well I think before filming me and Anna chatting randomly. We chatted about all manner of things about our writing process, how my book is about so much more than dementia and had lots of laughter and giggles.
Emma and Alexis joined us towards the end but had to leave at 3.30.
On hearing that time I suddenly realised I was booked on the 16.03 train😱, so we had to make a swift exit and Anna walked with me to Kings Cross, both of us huffing and puffing our way through the street. We made it with 5 minutes to spare🤯😰. So quick hug, quick goodbye and I was on my way home
What a wonderful day……..🥰. The only sad thing…..and I didn’t realise until I was on my way home……..was I didn’t take any piccies of people😱 sooooo disappointing☹️
The lurgy is still clinging onto me and has dragged my mood down, but put me in a room full of smiley happy people and I spring back to life that the moments I’m with them. Anna had the lurgy too but hopefully the chemistry between us shone through on the videos
Finally most of you might of already seen this on Twitter or Facebook……. The film I made with Nicola Leddy has been put forward for the Charity Film Awards. So if you have a few minutes to watch it and then vote if you like it, I’d very much appreciate it.
I was contacted back in June by local ITV Calendar news to see if I would be available early September for an interview at home. This is sooooo unusual for TV people to book so far ahead as often it’s a last minute booking as topics appear in the news.
However they were aware of it being World Alzheimers awareness month and obviously had plans, which was nice good to hear.
Anyway , yesterday was agreed and the bonus was that Sarah had agreed to do the piece with me. Their aim was to ask about the general stuff – about my dementia and how it affects my life and family, what I do to raise awareness, why I wrote your book, what I do to help my symptoms – all good.
It was a very dull and drizzly day so not very good for filming. We needed the sun to shine really but it wasn’t playing ball…..🙄
Sarah arrived early and the reporter Michael, from ITV Calendar news, arrived soon after and right on time……
As usual, Michael came armed with all the paraphernalia that accompanies a reporter but he was very respectful, setting up and moving things, making a note of where they were.
He was also very smiley and such a friendly person.
Once set up he asked me questioned around my coping mechanisms, the effect on family, my book and all the wonderful opportunities dementia has brought my way. He spent a long time asking questions and made me feel very relaxed. He asked what I would say to others and I’m sure I must have said this many times before but….
“It’s a bummer of a diagnosis, but if you look at it as the start of a different life, a life of adapting, it can make the diagnosis easier to handle”
If I say ‘bummer’ the rest of the sentence appears from nowhere. It was strange as I felt the old me next to me yesterday. It was a good day. We often talk to one another but I remember her presence yesterday. The reporter had watched many of the films I’ve already made and fed me key words that generated automatic answers from the automatic filing system in my head. I felt the old me being impressed and saying, ‘Wow, go girl’. As I said, it was a good day.
He then asked Sarah some questions around how we cope as a family and Sarah spoke about the importance we’d placed on talking. She was of course very good, but then I am biased 😊
He finished off by filming various bits of the downstairs – we’d already agreed that upstairs was out of bounds….and 2 hours later he left.
I’m not sure when it’s being aired but they plan to show three reports through the month, one of a couple where the husband is living with dementia, me and Sarah and finally a piece from the Hospital setting. It’s good that they’re doing something as there’s been little on the telly so far for Alzheimers month…..
As I’m typing this I’ve realised something devastating…..I forgot to take any piccies😳 – what happened there Sarah?!!! Instead I’ll put a piccie of Billy who had my company afterwards as I was on Billy duty…😻 hopefully I only fed him once……🙄
So that was in the morning, in the afternoon I had another go with Skype as I had a call with Young Dementia Research Network. Earlier in the year we held our first conference and today we were discussing the next steps and future conference.
Once again I couldn’t get skype to behave. It worked perfectly for all of 30 seconds but then I could no longer see people even though I could hear them and they could see me🙄
We spent over an hour talking, me to a blank screen 😶. We know it didn’t all go perfectly but it was the first and we learnt so much from it. The young researchers who attended had so many wonderful ideas that we want to build on them and include them in the next stage.
We have some very good plans in the pipeline for the future…….the Network is a wonderful resource for anyone that wants to learn more about Young Onset Dementia.
More details of how to join the Young Dementia Network here:
I hadn’t been anywhere to do either of these but I was exhausted by the end of the day. Maybe it was the Skype that finished me off – the frozen screen meaning I had to concentrate hard on voices for over an hour instead of having the company of animated faces……..
Nearly four years ago, at the time of the release of the film Still Alice, the BBC asked me, Keith Oliver and Christopher & Veronica Devas to film our lives for a month using a camcorder. From the footage we recorded, the wonderful reporter, Jim Reed, produced this short film….how different I was then compared to now…
This was just after my diagnosis and I was still working full time. From making that film, I made 3 wonderful new friends. We’d been brought together through a diagnosis of dementia. Our paths would never have crossed if it hadn’t have been for the diagnosis and I’ve made so many more wonderful new friends since. Every cloud…….
Then recently this year, we were asked to make an updated version to go alongside this one.
I’m sure I’ve must have put them both on together before, but I couldn’t find it, so apologies if you’ve seen them both.
I wanted to make sure I had a link to both on the same blog as the BBC in their wisdom, have decided not to put many things on YouTube anymore, otherwise the 2 could have been side by side….but hey ho…..the wonders of the blog!
So here’s the update we made 3 years later…..shown earlier this year on BBC 2’s Victoria Derbyshire programme….maybe we’ll all be around to do it all again in a year or two…
I was on home turf Monday. I was being filmed at home by researchers from Salford University Who are coming to the end of a 3 year study on Young Onset Dementia…….
I was contacted ages ago by Tracey Williamson to ask if I would speak at their end of study conference in June. They also asked if they could come and film my talk along with a 60 second spiel, at my home and Monday was the day sorted for this bit.
It had been a 3 year study ending this summer on the experience of those with Young Onset dementia experiences of health and social care services, which are sometimes aimed at people in later life.
They want the film to be positive and so my spiel was entitled:
“You CAN live with Young Onset”
It was a lovely sunny day on Monday outside by back window. Just the right weather for a visit to the village.
Tracey was coming along with researcher John Chatwin…….and had kindly sent me a photo of them both….They duly arrived at the planned time and, first things first, I asked if they wanted a cuppa……..I knew I was in safe hands when they both said yes……😊
John set up all the paraphernalia in the conservatory while me and Tracey chatted.
Once all set up, we first recorded the ‘60 second read’ about my views, including one question on how what my book may teach people…my answer to this being:
“By the very nature of my diagnosis, my book is about the loss of the old BUT MORE IMPORTANTLY, the birth of the new me. But what I hope it shows more is how relationships change in a crisis, how new friends are made and how adapting to this new world is the key to surviving.’
Before we moved onto the next bit, I took a photo of them filming and taking a photo of me for twitter🤣
And then recording the talk I’ll be giving at the end of study Conference on 28th June in Salford on Young Onset Dementia…….including:
“I’m not saying that it’s plain sailing because it quite clearly isn’t but if you look at a diagnosis as a new way of living, a life of adapting, it can make life much calmer and a little less stressful.”
I ended by reading an extract from my book about the glider flight – just to end on a high🤣😂🤣
Before I knew it we were finished but not before we just had time to take a selfie….although I’m not very good at them…..
Really looking forward to their end of study celebration conference in Salford on June 28th on Young Onset Dementia😊
Yesterday the news was announced that Babs Windsor had been diagnosed with Alzheimers 4 years ago by her hubby Scott.
It’s always sad when anyone gets diagnosed but someone in the media eye always brings it to the forefront in the publics eye too. It immediately shows how dementia discriminates against no-one.
Well, suddenly the media grabbed hold of the story and by midday all cogs were in overdrive and I had an email from my publicist first, as BBC Breakfast had contacted them asking if I’d go on Fridays programme to take part in a discussion. The amount of emails that then flew backwards and forwards appeared to be going at the speed of light……..
I’d already said ‘yes’ to 2 extracts from my book going in one newspaper and then another article or letter…..can’t remember now!, going in another….
…….. but then it became so overwhelming that I told them to get on with it and let me know if I needed to go anywhere🙄
I had a visit to my village Primary school in the afternoon which I didn’t want to cancel and thank goodness I didn’t. The Headmaster had contacting me asking if I’d go and talk to the pupils there and by the time I left I’m hoping to talk to all 272 of them in three batches soon……..can’t wait for that fun
Ooooooo I digress again……..anyway, the emails back and forth continued but I just watched and waited………The Producer then asked to Facetime me……that usually means they want to check I can still coherently speak.
I duly had a chat with the lovely Katie and we got on like a house on fire……We did the usual ‘research chat’ and I must have passed………Katherine Smith from the Alzheimers Society was also going to be on the programme along with a supporter. There was talk of a car picking me up before they picked Katherine up in the morning but the stress of that didn’t appeal as I know the M62 traffic jams too well from my old life…….so Katie agreed to book my tickets and a room in the Media City hotel.
I’d had my suitcase packed since the seed was sown as I know how last minute these things get, so once we’d finished our Facetime call, I rang my taxi company who whizzed a taxi there in double quick time and I was at the station before the code arrived for my ticket🤣
Katie would keep in touch en route and let me have the details of the car that was picking me up in Manchester and told me where I was staying for the night.
Before all this I’d txt Sarah and Gemma to say…..”Just to let you know……I’m on my way to Media City ……..” Laughing emojis came back my way………….😂🤣😂🤣
By the time I was on the Manchester train it was gone 6 and I felt suddenly verrrrry tired…..the frenzy of the day suddenly catching up with my brain……and I needed a cuppa tea……I’m sure, due to all the activity that I’d missed out on some cuppas today…….and Transpennine don’t have cuppas………😳😱😫
So I had to make do with the view out of the window……
The plan was for a driver to meet me outside Sainsbury’s at Manchester Piccadilly – perfect – and he was there waiting and drove me to the Hotel at media city, where the receptionist promptly told me there was no room in my name😳…..I showed her the email that said I had😳……and she got me a cuppa tea while they sorted it…….and sort they immediately did……AND someone came up to my room with the and showed me how to use everything⭐⭐⭐⭐.
By this time it was way past my snuggle time and I was verrrrry tired 😴😴😴😴, sooooo glad to climb into a bed with a cuppa…….
A lovely morning dawned and I sat playing solitaire and wake up with a cuppa before heading downstairs to meet Kathryn Smith who had also been invited on behalf of the Alzheimers Society. We were to walk over together. I was simply there as me today. We were immediately met by a lovely lady who said she looked after me last time! And so to make up……the conversation went like this……
‘Lipstick’……no thanks just powder……’blusher?’…..no thanks, just powder……..’Just Powder?’……….yeeeh!
It was a lovely surprise when Simon, son of SongaMinute Man walked into the Green room….and we had a lovely conversation about Coronation Street!
We then went through towards the studio to have the mics sorted and before we knew it we were being taken on set and Naga welcomed me like an old friend as did Charlie, which made my day…..They were soooo nice, as always.
We spoke of the need to talk about dementia and with Dementia Action week coming up, it put dementia, once again, into the spotlight……..The interview with us all was off the back of yesterdays revelation that Barbara Windsor had been diagnosed 4 years ago.
Obviously I could type while on set so don’t know what I said but it seemed to go down very well……..but it was all over far too quickly again………just time for a piccie…..
The cars were waiting for us all and mine took me back to Manchester Piccadilly……..a case of ‘The calm after the storm’……….looking forward to chilling over the weekend now.
I know I probably sound quite blasé about it all but if I thought about it in too much detail, I’d just say no and then miss out on another adventure……so as long as other people have the stress of sorting out the logistics, I let them get on with it and enjoy the ride………
As I said to Katie, from the BBC, during her questioning on Facetime…….:
“Once you’ve got your head around the diagnosis, don’t dwell on the losses or the future as you have no control over each. Instead enjoy this moment as there are still many adventures and laughter to be had”
By the by…….I was sat next to a lovely girl on the train……..who must have seen me…..found pictures of me on the internet and kindly asked if I was me…….🤣…….”today I’m sure I am”……….and then proceeded to ask lots of good questions…..a wonderful end to a hectic 24 hours………
I had traumatic weekend of decision making on something else and was always going to end up hurting soemone and was sad when the decision was made, but yesterday I found myself having to put that behind me and heading down to London for another surreal WOW moment since writing my book with Anna. The book has created many happy moments but incredibly sad and hard decisions to make as well……..
A couple of weeks ago my American publisher, Penguin Random House, asked if I would consider recording the American audio version😳……..I immediately said yes, as I knew if I thought about it I might decline……🙄
As the details began to unfold the butterflies began to build in my tummy…..excitement more than nerves.
The scary bit is that I would be in London for 4 days😱. I’ve never been away for more than 2 days🙈 and the thought of 4 days away is very scary. First note I made for myself was ‘Don’t go home after 2 days’🙄
The Producer, Richard has sent a lovely email answering the questions I asked. I also thought it wise to warn him not to panic when he met me. My voice when having to think is far different from the voice when I have words in front of me.
When speaking, it’s as though there’s a disconnect between brain and the words that come out of my mouth, whereas words come first when reading so it’s a simpler process and my voice is normal – another strange anomaly of dementia……..
But on the plus side, I received confirmation of my hotel and it is close to the Abbey Road Studios and the famous Zebra crossing😳
…….the Beatles were my heroes as a young child. I had every album and I’m sure I remember watching the film ‘Hard Days Night’ in Blackpool when I was 8 years old and being enthralled by it.
Anyway, back to yesterday……the taxi man arrived in plenty of time for a trundle to the station and we passed the lovely town cows grazing in the cold sunshine..
I was travelling on the direct Hull Trains service. They used to be my favourite rail company but they’ve had so many problems lately and have had 1 train in service 😳 and been very unreliable so they need to win back their brownie points……..Their first one was earned back as they still serve Yorkshire tea⭐ but they lost it again as none of the power points were working😱……….but at least we were on time…..and we trundled past glorious fields of gold trying to make up for the lack of sunshine…….
We arrived in London a few minutes late but I had loads of time as the light evenings are with us now. I bought my sandwich and a drink for supper before finding a taxi to take me to the hotel in Maida Vale. I imagine I could have got the tube, but I’ve never been to this part of London before so taxi it had to be.
I had a lovely chatty taxi man who’d been crawling round London in his cab for 37 years😱. He even helped me into the hotel, so a lovely start to my stay. The staff were also really helpful and took me to my room.
I asked Google maps to show me how to get to Abbey Road and after a cuppa I set off for the mile or so walk. I did wonder how I would know which zebra crossing it would be🤔 but as I turned into Abbey Road and looked along, I guessed it was where the crowds of people were.😂🤣😂🤣The Abbey Road studios were also a crowd puller with graffiti and messages written all along the walls
I stood for ages watching people stop the traffic to have their photo taken Beatles style. It must be a far busier road than it was back in the 60’s and many vehicles just ignored the crossing so pedestrians had to sneak their moment……..wonderful and so glad I went.
Back to the hotel with a reccie for somewhere to buy my evening sandwiches en route and then snuggled in my room ready for Monday’s recording………
I discovered online tips too late to make any difference, so the marks to highlight when I should breathe will have to rely on me breathing when I need to!🙄
For those in America and Canada, here’s the link to the audio….and will hopefully still say I’m the narrator by the end of the week!
I’ve always wanted to go to the Hays Annual Festival – Hay on Wye, is not only beautiful but the festival itself is world-renowned and described as a ‘marvellous literary experience’……
So imagine my amazement …….the first chance I have to go and I’ve been asked to go on stage and talk about my book, Somebody I Used to Know, for an hour with the wonderful Guardian journalist, Decca Aitkenhead……who would have thought…..
I’ll be there on Tuesday 29th at 7pm on the ‘Good Energy Stage’…….wonderful to be on the programme on the same line as the author Margaret Atwood and Poet Wendy Cope….. ☺😍
Amazing………maybe I’ll even see some of you there……..
I hope the following link works…….not really sure how long they last for and whether it’s available everywhere…….
But first of all I feel I must clarify again. My book isn’t the first ever written by someone with dementia. There are many out there and apologies to all these people. All the books are equally important. The uniqueness of mine lies in the way it’s written.
But below is a link to the short film I made for Australian TV to promote my book and which was shown on ABC 7.30 yesterday evening in Australia. This is the full length version.