Category Archives: Experiences

The Last Book Event of the Year…..

Well yesterday, this exhausting few weeks finally came to an end with my final Book Event. How fortunate I was and how wonderful that it was actually in my hometown of Beverley and to top it all, it was a sell out………

It was the opening event to their Festival of Words so I imagine nerves were jangling but I arrived at the venue and was immediately shown into the children’s library where the event would take place. They were still getting ready but people were already standing outside waiting to come in…..

Because it was local it was wonderful that Sarah was able to come along as it was her day off. Stuart, Gemmas partner, also planned his days so that he could come too. Sadly Gemma had to be at work.

The first thing they brought me was a pot of tea😊

I chatted happily with the organisers and a couple of men got the cameras ready as they were also filming the event. They wanted to film me afterwards too answering 3 short questions…….

Sarah and Stuart were allowed in ahead of the audience which gave us a chance for our own piccie

Anyway, as I was mid cuppa, the audience began to arrive and happily waved and chatted to me so I could finish my tea.

Because it was in the children’s library, it was a lovely setting as it was so bright and colourful! I could have spent ages scanning the book shelves.

And they had a wonderful elephant and baby…..

But the time came for me to speak. I was given a lovely introduction and then spent about 45 minutes talking about this that and everything. My analogy of the fairy lights seemed to go down particularly well. I said:

Image the brain as a string of fairy lights. Each fairy light representing a different function of the brain. Some lights flicker on and off – dementia affecting our ability to do something one day and then we’re able to the next. But when the light fail altogether that’s when dementia has won and has taken that ability away for good. But different fairy lights flicker and fail for each of us.”

I finished by reading the Billy extract from my book to end on something humerous…..they were warm in their applause and questions and many queued up to speak to me afterwards and have their book signed.

There were some people living with dementia along with their partners and each came to say hello. One man, whose wife was now in a care home, came over and said how, they’d never been ones to talk about it, but after hearing me, he was going to try and hoped it wasn’t too late……One chappie brought me 2 poems and I said I would put them on my blog soon as guest poems. People who read my blog and Twitter friends also appeared – so wonderful.

What a way to end a crazy few wonderful weeks. I can now have a few days chilling and writing in silence…..

As the audience disappeared amongst much chatter and reflection, they filmed me answering their 3 questions. The last question was:

“What’s your favourite word”……..I said I didn’t have one but four…….

There’s always a way’……..

An evening event in Tunbridge Wells…..

So here’s the continuation of my day in Tunbridge Wells. After meeting the 200 children and taking them through my dementia friends session, Anna took me back to her house to meet Derek and Clive…..her beloved ‘boys’.

Of course they were adorable and Derek came running up when he heard the car just like Billy!!

Clive then came downstairs to say hello once we were inside and was a real cutie who enjoyed lots of cuddles while Derek had had enough and replaced Clive on the bed and went to sleep. 🤣😂😻 But not before I took loads of piccies including this one ❤️

We sat and chatted over a cuppa, before heading into town to meet Amanda, who had organised the evening event. We went to the Pantiles District of Tunbridge which is a wonderful area of cafes and restaurants all with outside seating. It was such a glorious day we sat outside too. We all had such a wonderful conversation – shame I can’t remember the detail, but I know I came away feeling good.

As well as the local paper and radio not wanting to advertise the event, neither did the local Women’s Institute…….such a shame they didn’t allow their members the opportunity to know the event was happening. Such is the stigma around dementia that some feel it will be depressing and a taboo subject when in reality, it will be anything but……Yes of course they’ll be sad bits. But they’ll also be much laughter, many strategies to adapt and a story of how the decisions we make in life on how to deal with something bad, determines the experience…….

Anyway, after a cuppa tea, I decided I needed to hibernate for a couple of hours. So Anna dropped me off at my hotel and picked me up again after her parents meeting at school to have tea with her.

Anna had picked up all the cards the children had written after the Dementia Friends session in the morning so we spent a while reading them all – they were wonderful.

But the time soon came for us to make our way to the venue. We were met by Amanda and immediately had to have a piccie

The audience began to arrive, many delayed by train problems. Some people were travelling from London but there were major problem.

Once Amanda had introduced us, me and Anna chatted for what seemed like ages and way past my bedtime. The audience asked some really interesting questions at the end. One person questioned how could I be so articulate and so inciteful? Well I was intelligent and very inciteful before dementia, I don’t suddenly become stupid and less inciteful ……I also don’t have the type of dementia that removes the ability to understand what’s going on around you. I think and hope I answered more politely…..
Certain types leave the person totally unaware that anything is wrong. There’s a difference between those in denial and those whose dementia has stripped away that incitefulness……..certain types create speech difficulty. I’m lucky.

The evening is very sketchy even though I’m typing this in my room on my return. I felt, as the evening went on, that I was fast disappearing. My head was banging from having talked and concentrated so long. I remember talking about how exhausting dementia is and was really feeling it. I’m not really with it as I’m typing now but worry that nothing will be there if I left it until the morning…..

What’s the alternative to not putting myself through all this exhaustion? To sit at home and let dementia win? I don’t think so……..

I don’t often do evening events and this evening reminded me why. But I had a wonderful time with wonderful people who said such kind comments afterwards, which makes it all worthwhile. I remember lots of hugs, lots of laughter, Twitter friends saying hello and even Julia Wheeler, who interviewed me at Cheltenham took the trouble to be in the audience.

But best of all…. I got to spend the day with my buddy in writing, Anna Wharton – wonderful ❤️ I know I keep saying it but I really do feel very lucky…….

Why I prefer to stand on stage alone and read…….

This combination of dementia and success is a very strange concept. The last thing you expect after being handed a diagnosis of dementia is success is a different way……
But I was fortunate to meet Anna Wharton, my lovely writing buddy. Without her help, patience and understanding, my book would never have materialised.

So with the success of the book has come many new opportunities, many new ventures. Book Festivals have become another ‘suduko’ in my armoury against dementia.

I have always loved the written word and since this wretched diagnosis, the written word has taken on a whole new meaning and importance. I’m sure I’ve said many times, that I can type far quicker than I can think and speak the words – the words I WANT to say, not just ramblings. When I type dementia is locked away behind bars, trying desperately to hinder the process but can’t just reach out enough to stop me.

I’ve been very lucky to have been invited to many book festivals, but I’ve realised there are three types.
Firstly where I speak alone and read extracts from my book
Secondly where I’m interviewed badly and ramblings come out of my mouth instead of the words I want to say because they havn’t understood the challenges being interviewed for someone with dementia, brings to the table.
Thirdly, where I’m interviewed by very clever people who have done their homework and know what words to feed me in order to get the sentences I want to say. These are all sentences I’ve said before either in my blog or on TV or radio, so they seem to be hidden away in my subconscious waiting to be released.

So which do I prefer? Well the latter two are rather hit and miss unless I know the person and feel safe in their hands. I’m on stage with Anna Wharton next Tuesday evening in Tunbridge Wells and feel totally at ease. When they go well, they go really well as many have. But the one I prefer is being alone on stage with my own words.

Sometimes when I try and just speak my brain can momentarily block, turning it into a disconnected hole of emptiness…the reason for talking, for being there, disappearing into a haze. That’s when the ramblings appear. They’re often still ok, but not quite the words I want to say.

So when I’m alone on stage, I have my words in front of me, typed by my unhindered dementia mind and exactly the points I want to make. I could never speak those words in the order they appear if I didn’t have them to hand. Yes, I could show the reality of my rambling self but that would seem like a waste of the time when I have a captured audience in front of me.

I want them to hear the important bits, the serious bits but also the funny side to dementia and I can only do that well if I’m left to my own devices…..

A Patient Story Workshop……

I’m part of a group that meets every now and then for the East Riding Clinical commissioning Group. Nicki Sparling, Assistant Director of Quality and Improvement, asked me ages ago to be a member and yesterday picked me up to attend the latest meeting.

The aim is  to co-produce a patient story process that is consistent across all organisations and review how patient stories are used in each organisation and for what reason.

I think I became involved when I spoke to the CCG board around the appalling experience I had when I moved to this area……but I might be wrong. I know I spoke to them about something and can’t imagine it being positive!

We want them to hear the reality of the services they provide from the people who experience them.

We got there and 2 people were already in the room. Nicki showed them the tea machine and went and got me Yorkshire tea in a mug 🤣😂🤣😂……brownie point instantly given……

So, mug in hand, many people didn’t turn up. We were expecting people from all over Yorkshire…..Some had sent apologies but others hadn’t…..never good and so impolite.

Lots more from around the region were supposed to be attending but few actually appeared. I often wonder why? Is it workload, lack of interest?

We started this work a year or sp ago but had to be shelved until now. So many changes going on which took precedence. So today we’re picking up the agenda and hopefully it will be actioned.

The important aim is to support any patients who speak to the CCG, or whose story appears anywhere but the other key important point is for something to come out of the situation and it not become a tick box exercise.

I love the slide Nicki showed

And this applied to the Trust as well as CCG.Some areas use Patient Stories already but it would be good to have consistency and having an open mind as to how we give people the option to tell their stories, both good and bad. Videos, someone else reading out, an article or being their in person……lots of options.

We all gave examples of ideas to gain stories. I mentioned the Willerby Research Team and the stories they receive on the advantages of research. We need to have positives and negatives and the CCG can use them to promote ‘listening’. The ‘You said, we did’ attitude for both good and bad stories.

I said what it mustn’t be is, simply collecting stories – no point in that at all. There has to be a value and an outcome for people sharing their stories.
We got onto the subject of payment for people who take the trouble to attend meetings. The staff are all paid, but the lay person isn’t.
If payment is too complicated I suggested using local businesses to donate gift vouchers and have good publicity for them as well.

After another cuppa tea had arrived…(everyone else pointed in the direction of the tea machine…..😂😇, )we went on to talk about the next steps.

As a CCG, they don’t have direct contact with patients but other providers will already be doing this so we need to tap into others already doing this – no point in reinventing the wheel……we want to establish principles and a process that each area can use…..
It can all revolve around permissions and sharing those stories.

2.30pm arrived and I was flagging after such a busy few weeks…..and no more typing exists.

But one final thought came out on how to describe the CCG to people who know nothing – a bag of money…….at the top of a picture and being handed out to hospitals, GPS, and all other services until the bag is empty…..It’s whether the money has been spent in the right places that matter🤔

As Nicki said at the end:

“The Patient Story is the start of the process, not the end…..”

Devon Care Home Teams Annual Conference….

Together Towards Tomorrow……

I’m  glad I ventured into this unfamiliar world, not only because I was talking to new people but also because I learnt so much. A very long blog but as you’ll see an awful lot of stuff you may be unfamiliar with…….

So my busy week continued on World Alzheimers Day on Friday with a conference I’d never attended before – a Care Home Conference. However, I don’t make things easy for myself and this one was at the other end of the country in Barnstaple Devon.

Anyway I’d made my way down from the Birmingham conference to Barnstaple via WALES, which I wasn’t expecting 😳…….but the fact that every other passenger was looking worried was a comfort and, once again, I had my lovely Twitter friends reassuring me it was due to work on the tracks.

I finally arrived many hours later to a dark very wet Barnstaple but Becky was there to drive to my next hotel for the night. Someone showed me to my room and I was met by a lovely surprise…..Becky had already reccied my room and left me a box of `Yorkshire tea, Devon scones and post it notes!! Not only that but she’d covered my black TV screen with a red pillow case…….thoughtful beyond belief…..😍

After breakfast the next morning, Becky arrived to pick me up along with Sharon, who was also a speaker, along with a huge teddy donated for the raffle – I didn’t dare buy a ticket in case I won him and had to get him home too!

I was up first and spoke for 45 minutes including this:

I wonder how many of you always sleep on the same side of the bed? Most people do. But when you’re in hospital, or you’re moved into a Care Home people are often helped into bed at whichever side is convenient for the nurse – imagine how confusing that can be for someone with dementia.”

They were so warm in their applause, appreciation and comments afterwards. One couple where the husband lives with dementia, said that through my talk she’d found ways to overcome the frustrations for her husband. We chatted for ages over a cuppa which was wonderful. Always nice to meet new playmates.

After me was Sexual Intimacy in Care Home by Dawne Garret from the Royal College of nursing.

Sex is a subject healthcare professionals in care home have problem discussing. Dawne said, older people are sometimes just waiting for you to ask – for example, the side effects of some medication might affect the ability to have sex but is so often not highlighted.

A sexual experience doesn’t have to mean the physical act. When older people were asked for their meaning of sex, the answers given by older people were ‘Being close, cuddling, kissing, music and dancing. The courtship of older people, often the most unchaperoned relationship you had with a potential partner would be around dancing, so for many people, music and dancing are something sexual.
This will disappear with the next generation as that wasn’t part of their life. So interesting and rarely highlighted.

She asked the audience to raise a hand if their residents were able to share a bed with their partners and I couldn’t see any raised hands……..Dawne said this was very common…….☹️

She gave a case study of 2 residents who had begun a sexual relationship and they both consented to this. But the male says the staff must under no circumstances tell his wife who visits him every week.

She asked what questions they should be asking……

They asked about mental capacity and both residents had mental capacity to consent
Someone asked if he was a persistent philanderer But they don’t have the right to impose own morals but they do have to recognise its affect on care
Sexual health regarding sexual transmitted diseases should be addressed as the increase in the over 60s has shot up.
Sexual health clinics are often tucked away in inaccessible places to older people. The language is often very different from that used by older people. Sooo interesting…….

Older people often think they have no risk because they can’t get pregnant so so they must have support and advice about sexual diseases.

The legislation around sex is very ambiguous as no judge wants to touch it. The guidance the RCN has written was written with the help of a barrister with an interest in Human Rights. “Best Interest’ doesn’t work for sex – you can’t make a judgement on anyone about sex or marriage.
Discussion with the team needs to happen. This threw up an awful lot of concerns .The first duty of care is the resident.
It showed how prepared staff need to be around this and highlighted the fact that the next generation will be quite demeaning and know their rights.

Staffs cultural moral views must be supported yet the prime driver is the residents RIGHTs……but the exploration of the intricacies and issues raised was wonderful.
When you also take in same sex marriages, LGBT community who worry about entering a care home, those with a history of sexual abuse, those having committed crimes of a sexual nature, you can see what a minefield it is.

She was wonderfully open and a fascinating talk. Fascinating controversial subject that I imagine is often swept under the carpet or ignored in many situations. It’s so important for owners and managers in care homes to give staff support and guidance on coping with these sensitive situations. The family’s also need to be supported.

Google RCN Care Home journey and the guidance is there.

During the break I sold all the books I had and could have sold many more. It was so sad not to have some for all people who wanted them but my suitcase was only so big and I did have to make room for clothes and Yorkshire tea bags!

Sharon from the Queens Nursing Institute was up after the break. `They’re based at the Royal College of Nursing. They set Standards’s for Education and Practice.
She spoke about the Queen’s Nurse Title. She told community nurses in the room to think about becoming the Queens Nurse. They can applying free for a leadership programme.

Sharon has been immersed in Care Home work for the last 18 months.

She found how care staff in care home are paid less than those who look after our rubbish…..says it all really how undervalued care home staff are.
She has written a publication for nurses on Transition to Care Home Nursing. It was the most difficult piece she’s had to write. Do they have the skills to be a nurse in a Care Home?

Nurses feel isolated in care homes and have to make high level decisions alone. There are few leaders and national role models in Care Home nursing and poor integration with the NHS. As with many organisations she found communication was a nightmare.

Sharon gave a lovely quote for me for care homes nurses :

Appreciate the Artistry of your craft”.

The Deputy Director of Nursing then spoke about recruitment and retention. The Nursing associate role is a new role and they’ve been looking at what the role should look like to fill certain gaps. She’d brought along a Health Care assistant who was undertaking this role. It opens up conversations about looking at skill mixes slightly differently and how this role might be used in the Care Home setting.
Helena, a trainee Nurse associate then spoke about being involved in the pilot. Helena is nearly at the end of her training and says she feels, “so proud” to have shown how her skills have shown what a valuable member of the nurse family associates could be.

It made me think whether these people, who may have become nurses before the degree course was born, yet weren’t academic, but are wonderfully caring. are now able to climb the ladder of their choice.🤔

3 more speakers before lunch

Firstly, Pathfinders is a multidisciplinary team who work at the front door and backdoor of the trust. At the front door they try to ensure those who don’t need to be admitted to hospital aren’t admitted and at back door work with the most complex patients around discharge.

Then Peter Clifford through North Devon Hospital Libraries filled everyone in on the resources available at the library and the changes that have taken place.

Finally it was Ruth Morgan who spoke to them about distance learning and learning from home and what’s available.

Over lunch many people came over to chat but one professional from the local Memory Clinic arrived and people told him to talk to me. He asked me:

‘Considering our time limitation on delivering diagnosis, what should I concentrate on?”

He expected me to talk about the detail so was surprised when I simply said,

The language you use”…….

I went onto to say something I said in my talk about the psychological effect of language should never be underestimated and how that, along with body language, should be used to deliver a diagnosis positively……

The lightbulbs shone bright and clear. I just hope he takes it into practice……

After lunch I think the previous days chaos was catching up on me and I was just staring and sometimes listening but not typing. But I enjoyed tha Heads and Tail game to wake everyone up after lunch.. Everyone put in £1 and stood up and put their hands on their heads or tail. Someone tossed a coin and those that lost sat down. It went on until the final 2 and whoever was left standing, won. What a great simple quick fun money raiser – must use this at all our events to raise funds!

Today I learnt so much that I hadn’t heard before. Obviously I won’t remember much at all if anything, but I loved sitting and listening to different yet invaluable stuff, listening to different healthcare professionals, from different environments ……

Sooooo worth all the chaos and traumas of getting there – loved it because of its difference……..

My first sight of Still Alice……

I had the most amazing evening at my publishers, Bloomsbury on Wednesday evening. Me and my partner in writing, Anna Wharton, were there to do a short talk, along with 7 other authors, ours being about the launch of the paperback version next year. It has a wonderful new cover, but I’m not allowed to show that until someone says, ‘GO’😂.

So Thursday morning found me trundling through a sunny London to St Pancras as I was heading back north to Sheffield to meet up with the new cast of Still Alice and watch their performance for the first time. It had its premiere at Leeds Playhouse with a different set of actors, so it would be interesting to see how the new ‘family’ settled in.

Lisa Genova, author of Still Alice kindly wrote this for my book in America.

Nicky Taylor from Leeds Playhouse was meeting me at Sheffield station before heading for the theatre and barring a few delays on the train, we had plenty of time to trundle up to the theatre and have a cuppa tea.

Once we went over to the theatre we were met by Producer Michael Parke who was sooo happy as to how it gone so far and we became even more excited at the prospect of seeming it. When we were looking our seats, Director David Grindly gave us a hug and hello and agreed we’d meet everyone afterwards. The staff looked after us wonderfully and were very kind, even making sure I didn’t forget my suitcase⭐️

So now for my own review of the performance and those that know me know I will say if I don’t like anything or think something should have been done differently……..

Still Alice is the story of a Professor diagnosed in her 50’s and the play shows how it affected Alice and her family. Alongside Alice (Sharon Small) is ‘Herself’ played by Eva Pope. I describe Herself as the inner thoughts of Alice and compare her to what I call ‘my own self’ who also accompanies me daily.

Before we knew it, the lights went down, the music started and Alice and ‘herself’ appeared on screen ……..and immediately they looked as one and at ease with one another. Eva Pope, playing Herself, timed her thoughts perfectly and her movement about the stage never distracted or confused as she effortlessly accompanied Alice on stage.

It was weird to see different actors on a different set but within minutes it seemed normal.It was strange to see a smaller stage, but within minutes it was normal…..

You can’t compare one set of actors with another, but Nicky rightly said how it felt like we were experiencing two sets of families going through a diagnosis of dementia.

The music between scenes was wonderfully haunting and was a great filler while scenes changed and props moved about seamlessly . Don’t remember that from before but maybe it was there…and I’ve just forgotten….

It was good to see the bunny slippers hadn’t been lost and other pockets of humour remained . Still made me chuckle…an important ingredient of the play.

Herself looked like she was dressed in all black, which had a strange effect when the lights were dim. At one point her head was floating in the corner…..weird…but very funny. I learnt afterwards that it was in fact dark blue.

It seemed different, but then they were different actors putting their own stamp on the part they were playing, but they flowed and jelled remarkably well for day 2 of a tour. The lighting seemed softer and sometimes just shone gently on Alice’s face and her expression was perfect and mesmerising……catching the lovely twinkle in her eyes.

Once again, it was all in the eyes and Sharon has mastered the look perfectly.

The sound of the microphone as Alice spoke her speech was loud and clear. It felt just as it does at a conference and made the speech so powerful.

“I am not incompetent. I still have opinions……..I am not dying, I’m living with dementia’

Slowly and discretely, the set became emptier and more sparse as Alice’s decline deepened. Sharon portrayed Alice’s decline sensitively, quietly, movingly yet perfectly. Her facial expressions, her mannerisms honed to perfection.

The ending, with Alice and Jon sat in chairs on the beach ….beautiful. I remember watching the ending with Sarah and Gemma in Leeds. I remember us sitting waiting for everyone to leave the auditorium and then hugging each other in tears. I was glad they weren’t there to cry again.

Poignantly the ending is Alice holding a book she wrote….


The theatre kept a small corner open for us to meet the cast afterwards after the audience had left. They heard our thoughts on the performance. My garbled emotions of happiness taking over but luckily ‘Myself’ had been typing throughout the performance. ‘Myself’ is the one who can articulate through typing whereas the outward me can show the emotional excitement I felt at the most wonderful performance by ALL the cast.

And I finally got my hug with Sharon.

 

A Slightly different type of Adventure…….

 

Oooops, set this to publish on the wrong day! Wondered why it hadn’t appeared….better late than never……

I know many people, when they think of the seaside town of Blackpool, think of ‘run down’, ‘brash’, ‘cheapie’, but my image couldn’t be further from the that……..

Even when I’m there my eyes ignore the run down building and tired exteriors. Instead mine see the images of my childhood and the wonderful feelings and thoughts from my childhood come flooding back.

Watching You Tube videos from my era as a child make me feel happy, calm and totally relaxed. Transported back to a time that makes me smile….

Blackpool makes me smile. I can hear and see the ghosts of former times, of Blackpool in its heyday. When people would flock for a week or a fortnight during factory shut down. When the beaches would be overflowing and theatres full to capacity……..

Yes, I know Blackpool is a very different place now but for me the memories keep me coming back. The nostalgic Blackpool still exists. I feel safe there because I know it so well.

So yesterday saw me and Gemma trundling to Blackpool with the main purpose being to go on ‘The Big One’….😱

I’d always wanted to give it a go, but never had anyone to go on with me……until now ………….. It was the tallest roller coaster in the worlds until Japan built one taller. It’s still the tallest in this country though.


From their web site….

Well we arrived in Blackpool to find winter had arrived – cold, wet and windy, but that wasn’t going to stop us………We made our way down to the pleasure beach and the rain obligingly  stopped and we started queuing for the Big One. I was so excited I was beside myself. Since dementia I have no fear. I would never have done anything like this in a previous life. I faced my biggest fear with dementia so nothing can be feared after that…

As we approached the front, Gemma said, “What have you got me into?’ And amongst much chuckling our turn arrived…..as we climbed into our seats I asked the man where I could put my stick 😂🤣😂 and we were strapped in and off we went, starting the steep slow climb to the summit..

“look at the view” I said to Gemma – “I’m not looking anywhere” was her response. I’d had to promise Sarah, Stuart and Gemma, that I wouldn’t get my phone out mid ride and that was such a shame as the view was truly spectacular!

We slowly crawled the 15 seconds to the summit before we were tipped over the edge to start the speedy steep descent and then thrown this way and that and in a flash it was over. We both immediately said how brilliant it had been, even Gemma.


A photo I took afterwards with the Big ~One in the background….the cars on the summit

And if proof were needed that we did actually do it…..here it is…and Gemma showed why it’s called a ‘white knuckle ride’😂

We went on many other rides, including another roller coaster and the Avalanche …..we had a wonderful day and it gave me another tick against something I’ve always wanted to do…..and what better way to end the day than sitting in my hotel room in silence looking out at the sea…..

A Trundle to Salford…….

After a bad few down days with dementia. On Wednesday I found myself on an afternoon trundle ready to speak at an event on Thursday morning in Salford. Sometimes it’s the ‘doing’ that pulls you out of the fog……

Researcher, Tracey Williamson, asked me back in February if I’d like to attend the end of study conference. The research had been going on for the last 3 years and they had been researching people with young onset dementia and their families/family carer’s experiences of health and social care services which are sometimes aimed at people in later life.

They’d already been to my house and recorded my talk, just in case I was having a bad day, so I felt like I knew them. They’d recorded me reading my talk, answering their questions and reading an extract from my book.

The conference was due to start earlier than I could comfortably get to Salford, so they’d kindly agreed to put me up in a hotel the night before…..hence the trundling starting on Wednesday afternoon!

Anyway, it was a gloriously sunny afternoon and I was able to catch the village bus and pop into Sarah’s for a cuppa before going for my train.

Tracey has agreed to meet me at Manchester station and take me to my hotel and amazingly my train left on time! It was sad to see the blackened sight of Saddleworth Moor as we sped past but even more clear was the acrid smoke that filled the train as the doors opened and stuck to the back of your throat……what it must be like for the firefighters in the thick of it, goodness knows…

Tracey was there as promised and we got a taxi to the hotel on Salford Quays – I had a lovely view of the water from my window

An even bigger surprise was the news that Joy Watson, who also lives with dementia and from Salford, was joining us for supper – Joy only came out of hospital a few days ago but was adamant she was going to join us and no sooner had I arrived, we were having supper and time for a selfie…….I rarely go out in the evening but couldn’t resist seeing Joy.

Chris Seward picked me up from the hotel in the morning and drove me the short way to the venue at Salford Uni where I was met by Tracey, John and a cuppa tea. I was soon joined by lots of new playmates with Young Onset from the Salford area, including Joy!!

Tracey started off the day with the normal housekeeping and then it was me to open up the day……..I said:

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.”

And I finished off by reading an extract from my book about my glider flight.

There were many lovely questions, one of which was:

if you had to choose one type of support from the moment of diagnosis what would it be?’

My immediate response was peer support – the opportunity to talk to people going through what I was.

People were very kind in their support.

Tracey then spoke of the study itself and gave a history of it from the beginning. They had an Advisory Group from the start, some of whom were my new playmates in the room.

“Research is messy” it never goes to plan, said Tracey. It’s always about adapting and being creative. Just like living with dementia really!

It was then the turn of Luisa Rabanal to talk about the experiences they found in the study from people with Young Onset.

The participants were solely from the Salford area.

The findings were 4 main themes – the process of diagnosis, the impact of living with YOD, the needs and living well. Luisa gave quotes from the participants for each theme.

People got a lot of leaflets, a lot of information but it was face to face they needed at this time.
Most of the participants felt peer support was the key to help them feel safe with dementia. To see others who are further down the line and still ‘doing’ was inspiring for those at the beginning. One great quote from someone was:

“If I keep moving the dementia can’t catch me”

Not everyone has a positive attitude so we need to find ways to help them through practical coping strategies….

She showed a great summary slide

Luisa then moved onto family carers – as the research included them as well. I always say that our needs are equally important but our needs often run in parallel and never meet.

There are close to 700,000 people in the UK acting as primary carers and save £11 billion in care.

unsurprisingly, carers also said how leaflets were pointless and face to face support was also needed for them too. They have the same needs but for different reasons and again, a supporter of someone with Young Onset has different needs to those diagnosed later. Another great summary slide…

Now time for a cuppa tea👍

Followed by the turn of my new playmates to be on stage talking about their part in the Advisory Group from the beginning.

It was then time for lunch and for me to get to know some of my new playmates better, including comparing bruises where we wobble, lack of sleep and lots of laughter!

After lunch it was the turn of John Chatwin to talk about the experience of service staff and the final interviews.
They interviewed 25 staff in a range of services…..think I got lost in my little world at this point, as me thinks brain shut down must have started as I seem to have stopped typing….I’m sure it wasn’t anything to do with John!

I’m sure there was lots more but……🙄

Salford appears to be a good area for services, although they need to be more focussed when addressing the needs of those with Young Onset.

I was well looked after and everything taken care of in a timely manner with no uneccesary stress – thank you Tracey – and I shared a taxi back to the station with Luisa, which was lovely.

On the journey home it was sad to see the helicopters above Saddleworth Moor still trying to put out the fire……….and our train was delayed……..a train decided to break down in front of us…..🙈😴🤯
I might have got home with a banging headache in tow and later than I should….but dementia hadn’t won today……..

Today my book is published in United States and Canada…….

Who would have thought, 4 years ago, when diagnosed with dementia, that those words would have been typed from my fingertips….?

It’s amazing what opportunities can come your way even after the most darkest moment.

It’s a land so vast that the ripple effect may not happen as it happened here in our tiny country, Penguin random house has given me that opportunity to find out. Lisa Genova, author of Still Alice kindly reviewed my book there….

The cover maybe different, but the words inside are still the same apart from a handful of word changes for the good people who choose to read it will understand what I’m talking about…

The audiobook is my voice – another wonderful opportunity that came my way and for those over the Atlantic can be found here:

http://www.penguinrandomhouseaudio.com/book/563464/somebody-i-used-to-know/

The name of stores selling my book, totally unfamiliar to me but apparently very well known over there – Barnes and Noble store, Books a Million as well as on line – all waiting for a new audience to read my book….

Today, I hope will be the beginning of making new playmates in these far off lands across the Atlantic. Let’s see if this vast nation embraces my book as many have so far, or whether it will disappear into its vastness…like a grain of sand found on a beach…

If it switches on a light for a few around the reality of dementia, just enabling the light to flicker for a few people will have made it all worth while.

So all you people over there, let me know through Twitter, my blog or a simple email, what you think of the world I reveal in my book.

Amazon US have already included it in their Best Books of the Month section under memoirs…..very humbling ……

I wonder if they’re ready for someone like me and my book, Somebody I Used to Know….?

Another WOW opportunity comes my way……

The Hay Literary Festival has always been high up on my wish list of events to visit. To be surrounded by literary genius and like minded people was always going to be a wonderful experience.

Little did I know that my visit there would be, not as a spectator, but as an author on stage…..I could never have imagined this in my wildest dreams, let alone 4 years ago when I was diagnosed with dementia.

I’d mentioned to my publicist some months back how Hay had been on my wish list and within minutes I was on the programme in conversation with Guardian Journalist, Decca Aitkenhead…….😳 how lucky am I?

Anyway, yesterday was the day. The travel arrangement and all the detail had been sorted by Jasmin at Bloomsbury. The first thought was for me to travel via Birmingham 🤢 so I looked at alternatives and found a route via Manchester; a little longer but hopefully less stressful as I don’t mind Manchester, with its platforms all in a row😊……
But since all the timetables changed, I now have a new piece of paper in my pink file, detailing all the stops as some unfamiliar ones have now crept in, which might really confuse me on a cafuddled day………..🙄

My pink file was stuffed with everything I needed to know to make the journey possible.

Me and Decca had email conversations about the content and she’d sent me her proposed questions as an idea to get some words in my head but also typed out….just in case……….

So the morning arrived, as did the taxi and we trundled off to the station on a gloomy chilly day………even the cows hadn’t got up as we whizzed past the Westwood

Due to weather the vast expanse of the Humber wasn’t photographically appealing today, so I simply sat and stared out of the window…

The first and second train was on time…..after that it would be new territory as I was heading for Hereford where a car was due to meet me.

But my arrival at Hereford 10 minutes late was the start of the trauma…….my car had left without me🤢. I’d followed the agreed plan and emailed instead of phoned but a lady who was waiting for someone else said a Hay car had just departed……..with one missing🤯

I won’t write much about the next 2 hours as I don’t want to remember them. But Jasmine, on the end of email at Bloomsbury, was amazing and helped me by keeping in contact and phoning Hay for me. Eventually I got to my B&B at 5pm, having left home at 08.30😴😵

The B&B people were lovely and hospitable – just ordinary folk allowing authors into their home during the Hay Festival……by the by – in the morning the husband made me breakfast and it was just the two of us. He suddenly realised I was ‘the lady with dementia’…..turns out he’d been diagnosed 2 years ago and his wife wouldn’t talk about it. I was the first person he’d spoken about it to as he was ashamed ☹️. So for the next half hour we laughed and joked and plotted against dementia…….so sad…

Staying in someone elses house was very disconcerting too sadly. In a hotel you can lock yourself in your own little pod but not in a house. So I had to leave notes galore to warn me where I was but the people coming and going was very strange……..

Anyway, gone off piste……The car came to pick me up at 5.30 so it was all a bit rushed, but once I got there…….well, all I can say is WOW…….I was shown to the Green Room tent where I had photos taken and made a short film but the person earned their brownie point by immediately getting me a cuppa tea. I had some photos taken and then went to the small studio. Each author had been asked one question to be answered in 2 minutes and mine was:

Will we ever find a cure for dementia?”

I ended that by saying:

However, having engrossed myself in the world of research, I’ve realised, the answer may lay at the other end of the scale – the beginning……preventing, delaying long before the signs are visible.
To stop it in its tracks and give someone a few extra years of normality or the ability to eradicate it its first tiny beginnings would be my wish for future generations….”

It was then back to the Green Room to be met by Rachel Niblock, from Dementia Diaries who lives close by and brought her adorable grandchildren, Faith and Evie, to meet me. We tried to spot famous people while we had another cuppa and chatted before Guardian journalist, Decca, came along and a lovely person took us across to the ‘Good Energy Stage’ ………

I really don’t remember much about the hour that sped by but I remember liking Decca immensely and we chatted happily before it was time to go on stage……….all I remember about the event is the warmth of the audience, the kindness of their applause and much much laughter. I read from my book as well as chatting to Decca and we seemed to answer loads of questions from the audience.

At the end, we apparently got a standing ovation……..a humbling experience and then whisked off for a book signing where many kind people queued up simply for me to sign their book….who would have thought…..😳

At the start of the day I couldn’t have envisaged the extremes of emotions from despair to elation, but well worth the trauma for such a wonderful unique experience…..

I came away with a beautiful paper rose which all authors were given after their session on stage and I seem to have acquired a Hay mug!


Think I must have walked out with the mug as it still had tea in the bottom😳🙄

and a beautiful sunset to look at from the window of my B&B…

An interesting tweet by someone in the audience that night……:

“Your response to the point about Calais was worthy of a stand up comedian”
My response to that was……”Crikey, the mind boggles as to what that was all about and what on earth I said….”😳😳😂

Never stop dreaming as dreams do sometimes come true………