Happy Easter holiday everyone……

Well today is the last blog for a while as I hope everyone will be too busy enjoying the Bank holiday ………

Anna, the writer came to see me for the day last week and has left me with a mountain of homework😂 for the book we’re writing so I need to get on with that and do as I’m told for a change🤓

Happy holiday everyone.xx

 

 

 

A WOW experience up in a glider……..Part 2!

Well yesterdays blog was all about getting airborne so today I’d thought I’d finish off the experience ………

So there me and Steve were up high in this amazing wonderful world of the sky, looking down at the familiar yet unfamiliar looking world below. He spent the whole time chatting and telling me what we could see.

We managed to get above a bubble of air which allowed us to go round and round in circles gaining height by 300 feet per minute. He’d warned me on the ground that many people felt immediately sick when circling but as long as you kept your head still following the glider, it was fine, but he did keep asking …..just in case😂

I managed to get one of an aeroplane flying way below us

And I spotted the road that I usually trundle along on a bus on my way to York!

But the views of the golden-yellow rape fields were my favourite

The views below were just mesmerising….there was an amazing house hidden in the wood below and they wouldn’t have a clue that we were silently flying over them….

It was a shame it was so hazy as usually you can see as far as the Pennines on one side and the Humber on the other but it didn’t matter, it was still amazing……

Finally it was time to head back, and soon the runway was back in site with everyone waiting for me by the control bus…..

The landing was amazingly smooth and the whole experience surpassed my expectation. Steve even got them to pull the glider back by tractor so I wouldn’t have to walk back across the airfield …..and what better way to celebrate than with a cuppa…..a wonderful ending to a wonderful day…..😊

On the way out what did I spy but a poster for ……wing walking…😂😂🤔

A WOW experience up in a glider……..Part 1!

I’d been waiting for last Saturday to arrive for ages as it was the day we’d booked for me to use up the voucher bought for my birthday by Sarah, Gemma and Stuart.

I’d been scanning the weather forecast all week and didn’t dare believe what I was reading…………’dry and sunny’………..I’d asked everyone on twitter to keep their fingers and toes crossed🙄

The day dawned and I was so excited, it was like Christmas. I could see the early morning sun peeping through the cracks in the curtain. I was up at silly o’clock so decided to wobble into town for something to do as the flight wasn’t until noon.

By the time I got back it was time to go🤓.Sarah was meeting us at the airfield so me, Gemma and Stuart drove to meet her. Everyone’s efforts had come to fruition and the day was glorious.

Sarah was there waiting for us and we all had to start by watching a safety video …..telling me how to operate the parachute in an emergency😳 – well I was really going to remember all that but I didn’t mention the slight flaw in proceedings….😂 I did try girls, promise……🙄

We had to drive round the airfield to get to the control bus and where lots of gliders were busy taking off and landing. Managed to get a shot of this one going over us

Once we got there we stood for a while watching others take off. It was going well until they took Sarah to one side to check I was capable of doing this……luckily both girls piped up saying ‘why don’t you ask mum’ as I was all of 2 yards away……but once we settled their mind that I wasn’t going to freak out and grab hold of the controls and fling myself out, we all got on famously and they couldn’t have been nicer – probably utterly relieved actually 🤓 as you could visibly see the relax.

My turn arrived…….I as beside myself with excitement……they strapped me in to within an inch of my life😂

And before we knew it the aircraft we were attached to was taking us up and away.

I first got a selfie of me, very happy

And then me and the pilot Steve, who thought he’d better not look too happy…….😊

Once he saw how much I was enjoying it, he relaxed and wa absolutely amazing. He asked if I wanted to do the circling round and round on the spot if we found a bubble of air and I was up for anything, which meant we could stay airborne for longer………but more of that tomorrow…….😊

New book of poetry out soon…..

Last year I was lucky enough to meet and strike up a friendship with mother and daughter Jo Allmond and Jess Hiles. I met them at an event I was speaking at in Milton Keynes for McIntyre Care, which is leading the way for highlighting the issue of those with a learning disability that also has dementia.

Jess is an amazing person whose Nan had dementia. Sadly she died very recently, but during the process of trying to understand dementia we became friends.

Jo kindly asked me to contribute one of my poems to a book of poems described as:

“A selection of poems by those not always heard”

Well the book is out around the 1st May and Jo and Jess will be appearing at the Hawksbury Upton Literary Festival on the 22nd April – you can see them in a list of speakers on the web site:

Welcome

Here’s Jess’ wonderful web site – well worth a click.

http://www.jessthegothfairy.com/

Dying well is equally important as Living well….

I recently wrote about my involvement with the judging of the Northern Lights awards.
One of the categories up for an award, as well as ‘Living well’ was ‘Dying well’.

The presentations on Dying well were some of the best I’d seen. They weren’t depressing, they weren’t morbid as many would think. They were practical, sensitive and also full of information on how best to start the talking..

Dying well starts at diagnosis. Talking about it doesn’t mean death is necessarily imminent – it could be years away. Talking about death while your still able helps you to share with loved ones all the things that mean so much to you.
Do you want to take part in research when you lose capacity?
Have you written your will?
Lasting Power of Attorney?
Do you want to be buried or cremated?
Is there anyone you don’t want at your funeral? – hadn’t thought of that one!🙄
Do you have any favourite music?
Favourite clothes?

It’s definitely the elephant in the room

But talking now you can reduce those fears and more importantly reduce the hassle for those left behind…

You can’t tell people when you’re dead so talk about it now and then you can relax and carry on enjoying each day and each moment……..

Why I feel safe in my childhood seaside town….

So yesterdays blog was my weekend away in pictures but many people have been asking where they were taken. So today is all about why I feel so safe going on my own.

As a child we always went to Blackpool for many many years – factory shut down fortnight was when the world seemed to descend on the place, including little me.

Even as a child I was allowed to wander safely along the prom and the beach. I would love walking by the sea edge away from the crowds.There were always the familiar landmarks to guide you back. It was a very different world we lived in then.

Well now that’s taken on a different importance. People have said how there must be nicer places to go than Blackpool, but I disagree. It’s a wonderfully safe place, remembering I rarely go out in the dark. The miles of deserted sandy beaches are beautiful….

I stay in a nice hotel on the North Shore, the quiet end. The hotel manager has even read my blog and so I’m well looked after on each visit. But what I like most is the familiarity of it all.

I step outside and can walk safely in either direction along the prom for as long as my legs will carry me. When I get tired I simply go to the tram stop – all clearly named – and catch a tram. There’s no worry about ‘which tram’ to ‘which place’ as they all go the same route all day long – Star Gate to Fleetwood. So even if I went in the wrong direction, it would eventually get to the end and turn round. From Fleetwood you can even see the Lake District – my other favourite place.

The trams are very people friendly with no steps to climb and clear big windows to see the view. The conductors are lovely and one demonstrated this perfectly at the weekend. One chappie got on by himself, who to me clearly had dementia. He shuffled on but then didn’t know what to do. The conductor took his arm and started joking – ‘let’s get you sat down, after all if you fell over it would give me loads of paperwork to fill in and I’m no good at that’. The chap sat happily, grateful for the helpful arm, staring out of the window, just like I do.

The automated announcement lets you know which stop is next and to ring the bell if you want to get off – so many towns could learn so much from this often maligned seaside town.

The old trams also trundle up and down and shorter route which bring back lots of nice memories.

The landmarks loom large and clear, North Pier, Central and South and the Pepsi Max roller coaster can be seen for miles.

And not forgetting the wonderful Tower, which can be seen for miles and is always lit up at night and where I spend an hour with a cuppa watching people of all standards dancing happily around the amazing Ballroom.

I can hop on and off the trams all day long quite happily and stop back at my hotel to have a cuppa in my room and sit watching the sea from my window.

And there’s never a dull sunset in Blackpool as yesterdays picture clearly showed…….

Calm after the chaos…….

Well thank goodness Mad March is done and dusted…….someone suggested I now have Astonishing April 😳 But me thinks that might finish me off!

Anyway, I went away for a lovely weekend at the seaside and couldn’t have chosen a better weekend as the weather was perfect. Here it is in pictures…..

What a beautiful end to a perfect weekend….

Northern Lights Dementia Awards – Manchester…

So yesterday saw the last event of Mad March……I’d been asked some time last year if I’d be involved in the event again as one of the judges, this time for the ‘Living Well’ and Dying Well categories.

Nicola Phillis, (Quality Improvement Lead, Clinical Networks – Dementia and Older People’s Mental Health, NHS England North (Yorkshire and the Humber)) Amazingly long name badge needed😂had been in regular contact as we shortlisted the entries down to the last 3 in each category a while ago.

There was to be 5 judges in each category and the final three in each were to give a 10 minute presentation for us to decide the runner up and winners.

Oh and I was to give a talk after Alistair Burns around Involvement and what it means to me
The event was being held in Manchester at the Mercure hotel (which rings huge bells so maybe I’ve been there before!)

Anyway the journey started off quite early doors as the event started at 10.

Nicola had offered to meet me at Piccadilly station but I often find that very stressful in case I wait in the wrong place or one of us is late so we’d also been sent a walking map😊and if I happen to see her, then that would be a bonus.

The sky over the Humber was only just waking up – it’s always a shame when the train windows have marks spoiling the piccies. Don’t they realise the necessity for clean windows😂 There were the most cutest lambs in the field but my fingers weren’t quick enough or the windows clean enough, but I managed to get a piccie where the black marks mingled in with the trees😊

My walking app got me from the station fine and I was met by someone who immediately got me a cuppa……..so after I’d got my second I settled into my seat and watched the room fill

I must have been here as it looked so familiar especially the lights in the main room.

Dr Richard Preece started off the day.

He also added that after all these years he’d only just realised the flower on his dementia friends badge was a forget me knot……🤓 he added he was no botanist so how was he suppose to know🤔

Alistair Burns was next – Professor of Psychiatry in Manchester and National Director for Dementia and Mental Health in older people……never sure why ‘older people’ needs to be at the end…..

The big push is to look at Prevention of dementia. If we were to prevent stroke, we’d have 10% less people with dementia apparently.

He’s a very good speaker as he always bring in humour to the serious topic. The only disappointment was how many of the slides spoke of ‘older people’ and ‘over 65s’

And ended with a good slide showing all the famous people who had/have dementia..

It was my turn next and I spoke about why involvement was so important to me. It seemed to go down well and there was much activity on Twitter.

Then it was the time of the carers – Vicky from the Alzheimers society introduced Liz, the wife of Mike, a person who is living with dementia and Guy, his side by side volunteer from Rochdale.

Liz spoke of being given the diagnosis and then nothing and the trauma that was involved. They wanted to be involved but not sat around in a dementia café as it wasn’t for them.”Trying to get services to listen”was the hardest things. Liz also knew the system as a former nurse but said it was still so hard. “I’ve been dismayed at the lack of understanding in hospitals”
“The side by side opportunity from the Alzheimers society has transformed Mike” It’s made him feel normal again.

The Mike spoke – he was a pilot in the airforce and there was much camaraderie.” After the diagnosis I was desperately bored””The memory clinic wasn’t supportive at all””Until I was introduced to Guy from the Alzheimers society – it’s something normal and it really raises my spirits”

Then Guy, the side by side man – “I’m just a person”. He watched his dad care for his mum. They matched him up with Mike 3 years ago and they are good friends. “It’s like 2 mates catching up’
Mike said to him – “I now feel I’m not afraid to tell people I have dementia’

Dr Choudary – the joint winner last year was next – I voted for him last year so pleased to hear an update.

He is a Consultant Radiologist from Leeds Uni and Leeds Teaching hospital – how bizarre that’s where I use to work……

Last year they won for their high end diagnostic imaging to people suspected of dementia, especially those who are younger – hence my interest. Normal MRI scans would show up normal (as mine did) yet their specialist PET scan clearly showed dementia.

During the Q&A session, we went onto post code lottery and I piped up about how we need to avoid the wonderful work in Manchester becoming an elite area for people with dementia. We need it to exist everywhere, not just in Manchester.

Cuppa tea or 2 time as they were only small cups………

Time to judge the presentations…….there’s some wonderful work going on in the North and here we saw the best over the categories Living well, Dying Well, Preventing well, Diagnosing well,Supporting well and Delirium

I was really impressed with the Dying well projects finalists, one ending with a lovely Snoopy cartoon

We put our scores on the doors on the score sheets and then time to relax.

I had a lovely surprise when Joyce Dunne, Tommy’s wife came up and said hello – I hadn’t seen them so lovely to say hello. And a couple of people came up to me and said how they now used my Woman and Home film as part of their training.. I can’t remember the detail of who they both were but I remember one mentioning they covered Cumbria, so that’s really nice seeing as it’s my favouritist place

After a nice lunch, Steve Poole Chair of the DAA started the afternoon and then me and Dr Amanda Thornton, Dementia Clinical Lead in Lancashire presented the awards – it was a big surprise to me when Amanda asked me to do a double act with her but very nice to say well done to all the winners from this morning. Amanda took charge of the envelopes and reading out and I gave out the award. We only had one ‘Oscar’ moment but I joked my way through it.🤓

I can’t tell you the winners as I was too busy handing out prizes to type🙄

I had to leave before the end to catch my train but that was such a nice ending to such a lovely day and I was looked after wonderfully by Sarah who always made sure I had a cuppa😊

And best of all…..it now means the end of Mad March………and relax………😴

Talking to local radio…….

Two more events to go before the end of Mad March………

Yesterday, was the penultimate and I was at my local radio station being interviewed about local research opportunities.

Cathryn Hart, Assistant Director Research & Development at Humber NHS Foundation Trust, had asked if I would do a double act with her, promoting the research in our area. I’m their Patient research ambassador so was happy to go along.

We were there to showcase the regions conference on May 17th – “Developing a City of Research 2017”. A play on words as Hull is the City of Culture and the venue will be Hull.

Cathryn picked me up from the village and drove us the short journey into Beverley. Sooooo nice to have a 10 minute journey for a change!


We being interviewed live so we arrived in plenty of time and parked up and decided what we needed to say and what would be a bonus. They’d said we would have 3-7 minutes, which, if it had been 3 we needed to make sure we got all the important bits said – a bit like politicians saying what they want regardless of the question……😊

Anyway we needn’t have worried. We went in to be met by a very nice man who asked if we wanted a cuppa……….👍so I knew things were going to go well. Cathryn doesn’t drink tea 😱 but I don’t hold that against her….🙃

As the time approached we were taken upstairs to the studio and met  Les Smith, who was in the middle of his programme. We went through what he wanted to talk about and thankfully the list matched ours. I had everything I might say written on my iPad.

Cathryn waiting for the start of the chat…….

Cathryn spoke about the valuable research being done in our area. They research many different conditions, dementia, stroke, mental health, to name just 3, and then it was my turn to talk about allaying the fears that often surround research and why I get involved so much.How when services are in such short supply, research can actually plug a gap.
Cathryn ended by talking about the line up for the conference and how anyone local was welcome to attend but places are very limited as its been very popular since details were released.
We reckon the 3-7 minutes turned into at least 10 minutes so we left happy chappie as we’d said everything and more.

A nice local plug for work being done in my area for a change.

And a lovely venue so couldn’t resist an outdoor piccie….

Typing takes over from Talking…….

This last few weeks, as well as being Mad March, it’s also been dotted with every opportunity I can find to work with Anna on my book.

I suddenly felt sad after days of productive writing and then very suddenly I realised why……it came out of nowhere….

Anna lives 200 miles away so all our conversations are via whatsapp or email for larger chunks. In that world of silent conversation, I can type my thoughts, speedily and eloquently. There’s no problem. It just needs Anna to jolt my memory into action and I’m off. Sentences flow as if in normal conversation, no fragmented sentences.In this silent world of the keyboard, I can speak the thoughts in my head and at the same time convert them to the written word via the keyboard.

However, open my mouth to speak and the speed is gone. There’s a short circuit where the wiring in my brain has become disconnected. I type a whole sentence, but speaking the same words, without those words in front of me, often leads to the ending fading away as the words become lost.

That’s why there’s so much preparation for the talks I give. That’s why all the words have to be written down. I often start a talk by saying:
“Excuse me for reading my words, but if I don’t I’ll get distracted and start talking about something totally irrelevant’
I now realise the truth is, the words I’d speak would be disjointed and sentences will end halfway as the words are lost. I won’t be able to think of words.

I’ve revisited the short films I’ve made and listened and re listened to them and realise how my words and even my voice are now very different. In the short film I made for the BBC, I had no script, I spoke as I always spoke.

So when did that voice I had leave me? When did the sound of my voice change? When did the confidence to speak without words desert me? When did I become this smiley, hesitant, juddering self?

The sudden realisation that I’m now locked in this silent world where words are only spoken clearly on a keyboard was quite disturbing. I suppose I must be grateful for still be able to type, as many of my friends have lost that ability but can still talk. Others are left with neither.

That’s also why people who only read and havnt seen me often find it hard to comprehend i have dementia as my writing hides the dementia.

As long as I’m still competent in this silent world with my key board and can read the words I have in front of me, then that’s a bonus. For now, I’ll make the most of this silent world that has become my comfort zone.

Only to have the spoken word that frequently lets me down would be too sad for words…..

Just goes to show how little is still known about dementia and this complex brain of ours…