I usually automatically remember this anniversary but this year it was going to pass me by unnoticed until I got a txt from my daughter…..
It’s also my other best friends birthday – happy birthday Julie! And thankfully I didn’t forget that thanks to reminders.
You see, today July 31st 7 years ago I received that devastating diagnosis of dementia. If I’d have believed the medics, my life was over. But unbeknown to me then, that devastating diagnosis opened up a new world, obviously not one I would have chosen, but still a wonderful world with lots of new wonderful friends I call my playmates; with people like Innovations in Dementia who enable and encourage us. To all of them I say, thank you 🙏
But what fun I’ve had in 7years…..yes, every day is a struggle, every day dementia reminds me of its presence, yes it’s a bummer of a diagnosis BUT if all you see are the negatives what a waste of the life there is still waiting to be lived!
Here’s just some of my highlights I found as I flicked through my photographs this morning….the detail has long vanished from my mind, but the emotions the images stir are still there…
Meeting Hollywood star Julianne Moore at the premier of Still Alice in 2015
In 2016 I moved to my wonderful village with all its beauty, all its characters and all its love – I couldn’t believe the date when I saw that as I thought I’d only been here a couple of years 😂
In 2017 I went up in a glider – a birthday present from my lovely daughters and Stuart
AND later that year walked on fire for charity
2018 was another special year as that was the year my book was published in hardback, meaning I’d already had a year of the lovely friendship of my partner in writing, Anna Wharton….
2019 the paperback version of my book was released
AND I became Dr Dr thanks to Hull and Bradford Universities
AND I did my tandem parachute jump for charity..
2020 will become known as the year we all hibernated due to Covid, BUT that enforced hibernation allowed me to write my second book with Anna and is due out next January….more on that in the autumn…..
Which bring us to this year, 2021…..when my latest adventure was my tandem paraglide
So you see, good can come out of bad, but it won’t happen automatically, you have to go out and search for adventures, search for life. There are so many things I can’t do now that I can no longer list them, but I never dwell on them. I have no control over what I can’t do. Instead I focus on having adventures today and if today is a bad day…..tomorrow may be better….
Moral of the tale – never give up on yourself, no matter what people say to you, let them do that if they so wish. Believe in yourself and you can do anything you want……..
I think I wrote about ‘not feeling hunger’ quite some time back. I’ve got used to that and it doesn’t bother me. I have my routine that means I eat, unless that routine is broken and then I might be running on empty until the routine kicks in the following day. But I’ve always been on the edge of whether I feel thirsty…..but again routine has kept me drinking my flasks of tea….I have two big flasks, one in the morning and one in the afternoon and I drink it because I love holding a cuppa tea, even on a hot summers day…..well, I think I do 😳 ….but shouldn’t the brain be telling me I’m thirsty ?
It wasn’t really until my paraglide day that I realised dementia had taken away my ability to feel thirsty….that day I did the 10 mile walk around Derwentwater to scatter Sylvias ashes…and then had somehow climbed up Cat Bells before doing my paraglide and walking home 😳….
Yes I was exhausted when I got back but then realised I’d done all that on one cuppa tea in the morning and another when I had a 30 minute break in my room before heading back to Cat Bells. I’d had my breakfast, so did have food inside me, but simply hadn’t noticed I hadn’t drunk much all day from 9am to 7pm when I got back 🤷♀️…..
It wasn’t actually until last week that I clicked with what was going on.
I went to Gemmas in the morning and Sarahs straight after to do her garden in her new house. This meant I missed my routine of having a flask of tea during the morning. By pure chance me and Sarah tried one of the Chinese Tea balls that Suki Chan had sent me. I’d bought Sarah a see through tea pot just for the occasion and we christened it at her new house
It was several hours of hard work outside in the sun and I think Sarah said I’m going to have a drink, do you want one? I automatically said no and waited until I got home many hours later. Sarah didn’t question it because neither of us realised what was going on.
It’s so strange, the weird things dementia can do to you but it was then, when I got home and thought back, it all fell into place and I realised I simply don’t feel thirsty any more.
I can’t even conjure up that sense of being hungry or feeling thirsty – it’s gone, vanished…😔 when was the last time I felt thirsty ? 🤷♀️
So now it’s coming up with something that reminds me to drink even though I don’t feel like drinking, 🙄 but to be aware of it, is the first stage…now I just have to remember…🤪
I’m slowly building up my travels ready for Keswick…from my village, to towns and now it was time for a small city, York.
I’d almost forgotten York was a bus ride away, it had never occurred to me to travel there. I suppose the reason being, its in the next county and we’ve been restricted to our own county for so long 🤔 But then a friend on the village bus said she’d been to York and that put the possibility back in my head – if she can do it, I can do it….
I was convinced it was going to be busy, overwhelming, so I decided to take an early morning walk in the village beforehand to calm my nerves….it was my first 6am trundle for a while due to the weather and it was gloriously peaceful
The birds were out in force all making the most of the peace
The squirrel caught red headed with breakfast in his mouth as he climbed the tree to munch away quietly
The ponies in the paddock still half asleep and still huddled together in the early morning sunlight
And just before I reached home, a Robin stopped and posed for the camera – the perfect start to what might be a stressful day
I caught the village bus into town and waited the few minutes for the York bus to arrive. I’d never been on a quiet York bus before, always full of happy shoppers or tourists ready to see the ancient sights of the city of York, but not today. Today there was no queue for the bu. I was relieved but it felt strange. Just a handful of passengers and me with the pick of the seats on the upper deck, all the better to see the views of the journey…
I didn’t expect to have the chance to see the fields of gold over the Wolds this year; my annual treat for a couple of months each year. So it took my breathe away as we climbed into the Wolds with the familiar sight of the windmills and glorious golden fields side by side
From the top of the Wolds and being on the upper deck I could see for miles
This once constant familiar journey, revealing itself mile by mile once more. Through Market Weighton and Pocklington, familiarising myself once more with the landscape. There seemed to be lots of changes, or was that just me forgetting 🤔 or were houses now sitting where fields once were…..probably.
I’d forgotten how long the journey was. The most I’d done before now was 40 minutes; this was double and I found it very tiring; my eyelids closing with the constant travel as few passengers got on and off. I also hadn’t built into my plan, the need for the loo 😳…..my tired brain desperately trying to conjure up an image of where I would find a toilet in York 🙈
As we approached the city I became aware of announcements and suddenly realised the bus was talking – it was announcing each stop and as I looked above me there was also a scrolling sign stating the destination. For some reason I’d been oblivious to its voice until now
That’s a real change and one for the better. Nothing worse on a bus than not knowing where you are or where to get off – well done East Rider…
I also saw Scooters for hire at the side of the street, another happy addition and looked fun to have a go on
As I got off I could see Marks and Spencer ahead of me and headed there hoping their public loos would be open. Thankfully they were, otherwise I’m not sure where I would have headed for! Note to self – remember to think of loos on long journeys….
The escalator took me by surprise. Not been on one for ages and suddenly had to grip harder than I remember. Not used to large shops with several floors. Finding the escalator that went the right way took me round in circles.
Heading out onto once so familiar streets, it felt odd.Over a year since I’ve been to this city that was once my home and today the hustle and bustle was missing; people were missing. I was glad in one way, but sad in another. The atmosphere of this happy tourist place seemed to be lying dormant.
I could see the Minster peaking through these ancient cobbled streets and decided to head there, surely there’ll be tourists there
But no, just me and my camera and a handful of people milling the streets. The Minsters imposing entrance looming large and proud saying “look I’m still here” as I snapped once more
Usually its hard to find a spot where the crowds aren’t but today I could wander where I wanted and made my way away from the Minster
And down to the Museum gardens, the place usually full of people having picnics on the lawns and simply admiring the ancient past
But today just a couple of people in the distance, the crowds yet to return. It felt like I had the beautiful spring flower displays to myself
The time now ticking away and just time for me to see the river. I wonder how many times I ran down one side and up the opposite when I lived here…?
The pleasure boats desperately needing tourists back to fill their seats
A final trundle back through town towards my final destination. So many empty boarded up shops made for a sorry sight; the damage done by Covid clear to see for businesses.
The final bridge over the river, a little busier here.
I wanted to see if the whirlpool was still stirring at the foot of the bridge, the constant in my visits to York and it was. As so much in our lives has changed over the last year, that one constant of nature still swirls by this bridge and that put a comforting smile on my face….
The tourists will be back, life will go on, we just need to build ourselves up slowly….and I made my way back home from one lovely small but perfectly formed city, back to the safety of my village
Me and a few playmates, George, Dory and Agnes, have been working with some brilliant audiologists to create a guide for people who are sensitive to noise to help come out of lockdown.
If you’ve read some of my previous blogs you’ve seen how difficult it’s me for me, so I jumped at the chance to be involved in this. George, Dory and Agnes also have hyperacusis.
It all began when the 4 of us spoke to an audiology conference, indicating how they have the expertise to help those of us with dementia with noise sensitivity – hyperacusis.
I’m very lucky that I have my own supportive and wonderful audiologist and her advice contributed to what I had to say. Some Audiologists are without doubt experts in hyperacusis but few understand the part it plays in dementia, so to have them listen was a true bonus and has led to this poster being created
If you read it, although it’s aimed at people with dementia, it can apply to anyone fearing the noise of coming out of lockdown. Many people have been in silent bubbles so many people will find it helpful advice. Also children with autism, those with learning disabilities – the possibilities are endless……
So it’s the start of Dementia Awareness Week. I’ve never been particularly keen on this as for those of us affected by dementia it’s with us every day of the year and never goes away. So to spotlight it one week a year seems a tad patronising to me, but hey ho, it gets people talking again I suppose.
Innovations in Dementia were given funds from The National Lottery Community fund to set up Dementia Enquirers, a new approach to research that is led and controlled by people living with dementia.The lovely cartoonist Tony Husband came up with our image
The reason for the image, is that ‘leading’ the research doesn’t necessarily mean being behind the wheel. Every component of a car helps you get from A to B. Someone maybe the headlights, coming up with the direction, the ideas we take, others the wheels making sure it happens, down to the nuts and bolts holding it all together – every component vital. Even the professional lead researchers delegate work to be done by others and we were no different.
The difference in our research was that WE chose the subjects that WE thought were important. WE decided how to go about it. WE invited others through our door to support and help.
“We believed we could…and we did!”
The projects are:
Thred, Liverpool: How can urban and rural transport systems help people diagnosed with dementia live independently for longer?
Minds and Voices, York: The pros and cons and particular needs of those living alone with dementia and those living with a care partner
Beth Johnson Foundation, Stoke on Trent: Does class, ethnicity or intellect affect the dementia pathway?
Riversiders in Shrewsbury (with Minds and Voices, York): an enquiry into the what DEEP and Admiral Nurses know about each other
Our Voice Matters, Hartlepool: An enquiry into the benefits of groups for people with dementia
DEEPNess, Isle of Lewis: The necessary components of a dementia-responsive teaching video
EDUCATE, Stockport: The EDUCATE Echo project
We came together last week via zoom to celebrate the launch of our reports – the findings from all our hard work over the last couple of years. We had the challenges of Covid, but we overcame them and continued adapting as we always do.
Now obviously I’m biased because our group in York, Minds and Voices was one of these groups and you can read our interesting findings and advice for professionals as a result on the link below
But obviously ALL the groups looked into some really interesting subjects and the rest can be found here:
I lost my glasses at the beginning of lockdown, or should I say, I couldn’t find them…..🙄 Well after a year of being glassesless I eventually managed to get an appointment at the opticians. I booked it in March but couldn’t get in until May! So a long wait. In the meantime I found them 🙈…..they weren’t lost; they weren’t even hiding; I just couldn’t see their dark blue colour against a dark mat they were sat upon 😳……no contrast so they became invisible to me 🙈…..
So I decided to treat myself to some brighter coloured ones. The other weekend was appointment day. The appointment was at 10.10 am and since it was a sunny morning I decided to set off early and trundle into town with my camera round my neck. I wore the glasses for the first time in over a year and it was amazing how much I could now see 🤣
But I soon began to realise a problem….taking photos and wearing varivocals is very tricky. The clearness I have without them, now blurred when I try and look through the lens 😳….maybe the optician would be able to advise…so I persevered and imagined they must be in focus when I snapped 🤪 Wasn’t until I got home and loaded them that I saw most were…😇
The ducklings were my treat as I headed through the village. The Moorhen chicks always do well, losing only one or two
But the Mallard ducklings have diminished in numbers big time 😔….the 20 or 30 we had, now down to 8-10…😢 natures very cruel at times….but at least the few we have are better than none..and are adorable. For once they were sleepy and still instead of whizzing round the pond, still tired…
And the Moorhen chick always looking comical but cute.
On through the village, blossom everywhere now and looking a picture and as the wind blows, the delicate candy floss pink petals fall like snow..
Out towards the Westwood now and the trundle is becoming harder. Some days I can walk for miles but today I was struggling, my breathing hard, my legs heavy – no rhyme nor reason why, just happens. I’m hearing aidless at the moment too so the Saturday morning traffic was uncomfortable to my ears. However, they’re sending me a replacement for the one I lost, in the post 🙌, so all should be well soon.
Passed the farm and the twin lambs were in the field, one laying out of sight, the other in camera view
The Black Mill appeared ahead in the distance, a few cows lazing on the grass just in sight
As I turned the corner and wobbled over the cattle grid, I could see the more cows were down on the opposite side to the Mill, so walked alongside the road. Some cows making the drivers nervous and slow down as they munched the grass at the roadside, the drivers not sure whether they wanted the grass on the other side
Others just lazed
I love this view of the Minster, looking large. I have an image of this view from my early morning taxi from way back, the sun rising and the Minster lit up highlighting its magnificence
The trees through the middle of the Westwood now beginning to get their summer outfits of leaves
Time to put my camera away, my mask on as I approached the town, now crowded and noisy. I didn’t have to wait too long for the optician to appear. We went through the normal tests, what could I see, better with this lens or that. Apparently I’ve got the start of cataracts in both eyes, but he said it could be years before they become a problem and it’s the most common operation in the world, taking minutes instead of hours. No point in worrying about that then until it happens.
I then asked him about my camera…..
“Ah yes, you can’t wear varifocal glasses when using a camera, the lens positioning of the glasses won’t be right’
😳😳😳……he finished by saying I do need a new prescription and someone would help me choose brighter coloured glasses. The choice was overwhelming though, the girl handing me so many different ones to try, none of them quite right. I just wanted to get out so I said I’d have to bring my daughter to help me. Nothing is ever simple is it?
When I got back home and after a cuppa tea, I went out to take more piccies as dark clouds were looming. I didn’t put my glasses on, after all what was the point if I had to keep taking them off and putting them on again…..as I snapped away, I began to think….well I’ve done without them for the past year, do I really need them because my camera walks are more important to me than seeing perfectly…..mmmm, I’ll have a think 🤔 and the church yard looked lovely with its cherry blossom in full flower….
As the vaccine gets rolled out to more and hints of lockdown rules being eased begin to be hinted at, the niggling thoughts of the future come into my head. How will I cope coming out of lockdown? What will I want to do? Do I really want to go back to how things were before?
On quiet rainy days, when I’m stuck inside, these thought flit around in my head, creeping up without warning. Some of them deliver joy, others fear and confusion, but most deliver the unknown, the undecided.
The only thing I definitely 100% know I want to do, is to go back to my paradise of Keswick. If I had to choose just one journey to undertake, that would be it. I’d sacrifice all the rest just to be sat in my room with a view
And my bench with the Robins as company…
If anything would get me travelling again, that would be the journey. Will Appletrees have survived? I do hope so. Catherine, the lovely proprietor has befriended me on Facebook and posts her daily swim in the Lake in all weathers. Her and her friend did ‘Wet January’ where they swam every day no matter what; breaking through ice, in the rain, the snow, the wind and on balmy beautiful days. Each day I could watch her in the place I love the most and that has kept me connected, kept me in touch with this wonderful part of the country I’d gladly call my second home.
But what of the rest? What of all the other travelling? Do I want to go back to that? Will there be a need? Will everything have gone on line now via Zoom?
The simple answer is, I’m really not sure. I’d hate it all to stay on zoom, although many playmates would, especially those who find it hard to travel; they wish this world would stay as it’s brought the world to them. However, I find zoom more tiring, more wearing and rather sad. Instant farewells instead of long goodbyes; the staring at images instead of feeling peoples presence. No, zoom is not my chosen future. It’s all we’ve got at the moment but I’ve opted out of many because of it. Then how will people look, standing on legs instead of just seeing their head and shoulders? The whole person instead of their head 🤔…
It’s the travelling that would inspire me to keep going. I love travelling, seeing landscapes change as I whizz through the countryside on a train, towns and cities appearing and disappearing and then arriving at the destination and having to find my way. That stimulation all that provides might be the reason I do start again.
But maybe travelling for its own sake would be rather nice. I’d love a visit to the Western Isles again, if Philly would have me.
I’d love to go to Blackpool and meet up with Gail and us both take piccies together. All without the stress of events and speaking. But then…..would that be enough to keep my brain going for longer?
Who knows how will all pan out. We’ve all got a lot of thinking to do. Let’s hope the world has learnt something from this pandemic. That we all need each other. That green space is important. That our countryside is important. Speaking of which, would I trundle as much if I were travelling each day?
My trundles are the very essence of this lockdown that have kept me going, my trundles with my camera. Would I have met as many villagers if we hadn’t been locked down – nope…..would I have seen nature in all its glory….nope…..would I have taken as many photographs …..certainly not. And I think I’ll miss that if the world goes back to how it was…..if only we could pick and choose what bits to allow back into our lives…or maybe we can….🤔
I’ve been lucky enough to speak all over the country, all over the world during this last lockdown year. North, South, East, West of this country, from London to the Western Isles of Scotland, Cornwall to Edinburgh and everywhere in between, to folk in India and Canada. I suppose an advantage of lockdown when everything has been via zoom from the comfort of my bed on most occasions or my living room at most. No air miles, no carbon footprint used.
Well we finally heard from Boris about his plan for easing restrictions and the first thing I did was sent an email to Catherine from my lovely Appletrees in Keswick asking if she was taking provisional bookings. She immediately replied telling me to send my dates and if all went to plan with Covid, they’d go ahead….
We all live in hope that we’ll be able to visit places we love and none more so than me. The first place I intend to go when allowed is Keswick and have my lovely room with a view
That’s really why I emailed Catherine, to make sure I got my room! I suddenly panicked at the thought of everyone else booking their stays away and then Appletrees not having my room available.
Me and many of my playmates, have talked about whether we want to go back to travelling, how much will we have forgotten, how much support we might need, but more importantly, do we want to go back to that old world. The world where we’re invited to speak to professionals, to an audience we think we can influence and nothing changes? We’ve all enjoyed finding new things to do, the pressure less world of ‘doing’ what we want to do. For me, my camera has become my soulmate along with my trundles and nature…
However, I know I like travelling. I love just sitting on the train watching the scenery change. I also know that once I’m asked to speak, which involves travelling, the likelihood is, I’ll say yes.
Who knows….
But the first and ideal place to try out venturing into the world again is Keswick. A place I feel safe, a place I know well, a place I love just being. Catherine has been posting videos everyday of her daily swim with her friend Sue in the lake, has shown videos of the inside and out of Appletrees all empty and deserted apart from herself and Polly the dog. She showed the decorating being done all ready for visitors. So I feel I havn’t been away in some respects. Catherine has kept me connected. Whereas when I think of London, a place of so many meetings, I feel no connection whatsoever or desire to travel there…
The first visit will be with Sarah, so I don’t have the newness of train travel and staying over, I’ll just have the peace of Appletrees.
But the next, the following month, will be on my own…and the following month…..and the month after………
I used to enjoy wrapping Christmas presents, each carefully wrapped, bows galore, lavishing time and love on the simplest of presents sometimes. The choosing of paper always carefully thought out, it had to be right. But now I get all fingers and thumbs and buy coloured tissue paper and a large roll of brown parcel paper as it’s easier for me to fold and manage.
Then my playmate Gail, who showed me how to do my poppy pebbles made a video about Christmas wrapping. She has always been a craft person extraordinaire and even now, with dementia in tow she finds ways to create the most wonderful things. She made this bear, complete with ‘I want to speak’ badge which I bought from her recently
But after watching her Christmas wrapping video, it all looked so possible that I gave it a go using several of her ideas. I was so pleased with the results that I’ve warned Sarah, Gemma and Stuart that they must admire the wrapping first 😂🤣……I’m sure Billy will give me his opinion in his own inimitable way 😻…….
Anyway here’s a few of the results….not perfect, but much better than they would have been without Gail’s suggestions….
An extra blog this morning…..Last week I told you about the release of our new website around Tips from and for people living with dementia. If you missed it you can see it here:
Well we’re on a roll because at 10am today there’s the release of another around Dementia Craftivism. People with dementia showing what we CAN do, all ages, from all over the country! You can listen to me talking about my love of photography and many more playmates about their love of other crafts. Here’s the Press Release:
Dementia Creatives is supported and hosted by Innovations in Dementia. It is funded by The National Lottery Community Fund.
These pages celebrate the many ways in which people with dementia tell a story about who they are, where they have been, and where they are going. Dementia doesn’t necessarily curb the desire to be creative. On the contrary, many people begin to explore new forms of expression after their diagnosis. Many others maintain or rekindle old skills. It feels good. It brings us together. And we learn from it and from each other.
The Dementia Craftivists Galleries showcase the creations of people who are living with dementia who are using these to make supportive and enjoyable links across communities (including care homes). Our project is all about the pride in creating something yourself from scratch (whether it’s knitting, painting, song or play-writing, poetry, woodwork, or much more)… while sending, if you so choose, your own message to others.
Everyone who has dementia can join in with the Craftivism project – and we are also looking for further collaborations (and funding!). For further information contact philly@myid.org.uk
