On the 31st July 2014 I was diagnosed with early onset Alzheimer’s. I may not have much of a short term memory anymore but that date is one I’ll never forget.
I’m 58 years young, live happily alone in Yorkshire, have 2 daughters and I’m currently still in full time employment in the NHS. However, I’m now in the process of taking early retirement to give me a chance of enjoying life while I’m still me. I've started this blog to allow me, in the first instance, to write all my thoughts before they’re lost. If anyone chooses to follow my ramblings it will serve as a way of raising awareness on the lack of research into Alzheimer's. It will hopefully convey the helplessness of those diagnosed with dementia, as there is no cure – the end is inevitable. However, I’m also hoping I can convey that, although we've been diagnosed, people like me still have a substantial contribution to make; we still have a sense of humour; we sill have feelings. I’m hoping to show the reality of trying to cope on a day to day basis with the ever-changing environment that dementia throws at those diagnosed with the condition.
What I want is not sympathy. What I want is simply to raise awareness.
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After the disaster of the train journey to the coast the other week, I decided to try again, but this time on the bus to Hornsea, a seaside town just a 30 minute bus ride from town. I have to get the hang of the outside world as my trip to my paradise of Keswick is now only a few weeks away..
I’ve been very good with my hearing aids and have taken her advice of taking a deep breathe when anything noisy approaches and having a relaxed posture and muscle tone as that also convinces the brain that the loud noises aren’t such a big threat.
So camera round my neck, which also serves to relax me, I decided to trundle into town instead of taking the early morning bus, as then I might see the town cows who were having their first day of freedom on the Westwood and would be there for the summer.
Checking on the ducklings first and the Moorhen was having her morning shower..
The ducklings were awake, bright eyed and bushy feathers
All was well as I went passed the traffic lights and out of the village onto the main road. The spring blossom is now coming into full bloom and looking glorious against the blue sky of the morning
As I neared the Westwood I could see the town cows around the Black Mill
Everyone is warned when the cows are first set free as they’re frisky and new to their surroundings. They have no concept of cars and horns but they have right of way. It is their land and it happens to have a road running through it so drivers have to be patient
The meadow comes alive when they appear and I adore their sight
Especially against the horizon on a lovely sunny day as this was
I love to see Wisteria hanging against a wall, cascades of perfumed mauve flowers now visible as I head through the houses
Now at the bus station, the bus soon arrived. Always a quiet bus and a lovely ride is it’s a double decker; the views from upstairs revealing gems hidden over the hedges
We soon reached the coast. I was uncertain what to expect here; would there be the crowds of the previous week the overwhelming noise? Thankfully not.
There was calm and the expanse of the tide reaching for the shore. I climbed downthe steps and walked along the beach and stood on the sea edge listening to the sound of the waves crashing against the breakers
I had an hour before the bus would take me back again, so I ambled along the sand and pebbles, so many different shapes and colours.. A seagull perched high up on a beacon out at sea, having a morning nap
And a child in the distance feeling the sea wash over her toes maybe for the first time watching in fascination – wonder what’s she thinking…?
Almost time to retrace my steps so I climbed onto the prom this time. I hadn’t noticed the people from below, but it wasn’t overwhelming, people were ambling like me or sat on a bench with a cuppa tea watching the sea.
Thankfully this was a different experience to the week before, a better one, one I could cope with. One last look at the sea before heading home and a ghost ship on the horizon catches my eye going who knows where…
The outside world is becoming easier to manage, easier to re-enter, slowly but surely…..
Ok, so we’re almost at the stage where we can meet face to face again after a very long year. We can’t tell you how excited we all are at Minds and Voices to actually have a hug from each other, so important for people with dementia. However, each year it takes a massive £10,000 to keep Minds and Voices up and running. We provide taxis for those that need them, a lunch and room hire to name just 3 things. I can’t stress enough the importance of peer support and I consider all my playmates my second family, such is the instant connection that dementia has created…I realise it’s an ambitious target, so may have to do something else later in the year 😳
But I’d also like to use the money to take everyone on a day trip to remember and this all takes dosh!
Sooooo for my next fundraising adventure I’ll be doing a Tandem Paraglide over my beloved paradise of Keswick.
It’s all booked for the end of June initially but obviously we’re in the hands of the weather for it to go ahead, but if not June, it’ll be July…..or August or whenever, but it WILL happen. The man I’ve been emailing has been so helpful and will even pick me up and drive me there as I would have trouble climbing to the top of the fells to throw myself off 🤣
I’m hoping that the weather will be kind of the end of June when I’m there with David, Sylvia’s husband as that’s when we also plan to scatter my best friends ashes. So it will be a melancholy but happy weekend. Sylvia would have approved of me flying like a bird over Derwentwater so I’m also doing it in her memory….
We’ve sadly also lost 5 playmates from Minds and Voices in the last year too, so it will be in memory of them too – Alison, Maria Helena, Norma, Peter and Rita❤️, all deeply loved and dearly missed..
So this is afraid where I need your help and support to raise the much needed funds. I don’t expect to raise anywhere near the full amount and will probably have to do something else later in the year 🤪….shame but someone’s got to do it 😂
I realise it’s not a good time to be asking for money, but every single pound counts. I havn’t created my own page, but am using the one we’ve already set up for Minds and Voices as when I do talks etc, people often ask me where would I like a donation to go, hence the reason for setting up our Just Giving Page…..so you’ll see donations are already there from kind people already…..so here it is….
My walking friend, Pip, had txt me the day before to ask if I wanted to go on a mystery tour…..of course I thought for a nano second and said yes as the company of Pip and Scooby the dog and always fun and the thought of a mystery tour sounded exciting……
The weathermen had promised wall to wall sunshine so obviously it was dull and grey when I woke 😂, but I could sense it was going to brighten up by the afternoon of our adventure.
I had my normal trundle in the morning, just to check on the ducklings and whether the Heron had taken notice of my warning and he had. It was duckling heaven
I’d promised Pip I wouldn’t do a long long walk to save myself for the afternoon and because it was dull I did as I was told 😂
Pip came to pick me up as agreed and me and Scooby sat snug in the front seat
His close proximity would have spread fear through my body pre dementia, but now, it simply creates utter calmness….strange how dementia has taken away previous fears…..but delightfully nice….
We drove off heading across the Wolds, surrounded by the fields of gold I could see in the distance from my trundles. Pip told me we were heading for Londesborough; somewhere close by yet again but undiscovered to me.
We parked in this quiet picturesque village and began walking through a wooded area
Scooby was off exploring immediately, familiar ground for him. As we came out of the trees, a beautifully expanse of the estate opened out before us and the clouds lifted and we were in full sunshine..relics of the old mansion house still remained
As we walked along the path, Scooby leading the way, we came across a young girl and her 2 dogs. Pip had met her on her last visit so they sat on the grass chatting. I remained standing, because if I’d tried to sit, I would have fallen down and then I simply wouldn’t have been able to get up 🙄….scooby is more of a people person than dog person and wasn’t too sure of all the attention he was getting
And the little puppy collie took a fancy to Scooby’s stick
It turned out she was the girlfriend of the owner of all this estate…..to have all this beauty around her daily must be heaven I imagine…..how the other half live but what a responsibility too…
After lots of cuddles with the dogs and farewells we went off further along the valley.
We came across the end of the lake where Scooby immediately knew he would get a paddle and he got straight in..
A lone swan landed and looked so elegant, so serene, hiding the furious paddling going on beneath the surface
The sound of the small waterfall was so relaxing, a rush of sound yet water has such a relaxing effect
A splash of yellow in the undergrowth at the side caught my eye
Through the small gate at the other end of the bridge, we climbed the mound and I could see sheep with their lambs in the distance but too far away to get a clear shot. Instead I turned and saw the view from whence we came – how magical it looked
Heading back down, we were going towards the cows in the distance.
A young calf asleep next to its mum was the first to appear
Then 2 squaring up to one another 😳…in the photo they look like they were giving each other a gentle cuddle, but in reality they were having a barny 😂
As more cows came into view, so did lots more calves
We’d seen a few Red Kites soaring the skies above us but I only managed to get a shot of one; the action of looking up and trying to follow them making me wobble out of control 🙄
So back to the calves, which we stood watching for ages. The morning of duckling heaven replaced by calf heaven this afternoon
We sensed it must be feeding time, as they all started to head in one direction with a purpose and we stood and watched as they crossed our path ahead, one calf was getting the idea of posing for a piccie
As the cows disappeared, so did we as we made our way out of the estate and back up towards the car, our faithful Scooby leading the way. We paused by a wall, one final look before leaving and at our feet was a host of bright blue forget me nots
Hopefully my piccies will mean I won’t forget this beautiful place……thank you Pip and Scooby for a lovely afternoon…..
Duckling time is such a glorious time – it feels like it’s heralding the start of something new, of giving hope and boy do we need hope at the moment!. However, it also means the annual visit by the Heron will start again 🙈….as the sun gets warmer, the fish in the village pond start to come to the surface, providing it with its lunch 🙄…..what I do take umbridge to it’s its liking for ducklings when the fish don’t surface 😳…..
Anyway, after my marathon trundle the day before which I told you about last week, I decided it would be a one trundle day and I’d remain in the village.
I decided to go out at lunchtime as another resident had posted on Facebook how the Heron was there and me and him needed to have a chat……😂
As the pond came into view, so did the Heron
Such beautiful elegant creatures, yet with murder in mind…..
As he saw me approaching he flew off to the other end trying to avoid our conversation…
I was pleased to see a new brood of ducklings and was aghast to count 11 this time 😳….
The heron opened its wings as if to fly again
But then changed its mind and paddled it’s long legs elegantly across to the rear of the pond
I gave him a hard stare, then told him to keep to the fish stocks and leave the ducklings alone otherwise I’d take his bad side next time I saw him
I’ve lost count of the number of families we have now….🤔….think its 3, maybe 4 with the Moorhens….
I told the Heron, I’d be back at the end of my trundle to do a duckling count and went off towards the back lane.
As I glanced up at the sky, I could see Red Kites hovering high. It was difficult to get a clear shot but this was my best offering – such majestic creatures
Along the long lane and the birds were singing happily and a Robin, bade me good afternoon
The village is so colourful with spring wonders round every corner
Back through the churchyard and a squirrel froze thinking I wouldn’t see it against the tree trunk
Back to the pond and the heron had flown, hopefully having taken head of my warning. I counted the ducklings as best I could……
Yes, all present and correct as I trundled back home, the sound of children leaving school and excited voices relaying the tales of the day……..
**Breaking News**..next week I’ll be announcing my next exciting adventure to raise funds for my lovely playmates at York Minds and Voices. I’m sooooooo excited….last year I walked the 10 miles round Derwentwater in Keswick, the year before it was a tandem parachute jump, the year before that I was walking on fire…..what will I be doing this year…🤔
WATCH THIS SPACE!!!!!!
The only clue I’ll give is this….
P.s. No 4 Amigos for a while as we’re finding it sooo difficult to find a slot when we’re all free!! But we will be back….
With the street becoming busier, the world becoming noisier and my experiences entering back into the world around me, it was so important that I saw my audiologist, especially after the experience of the last few blogs this week…..
Becky kindly allows me to contact her via email to avoid having to use the phone or someone else having to ring for me. I was due to see her the week before, but she was poorly on the day but she rebooked me straight away for the following Monday.
It was lovely sunny day and my appointment was at 1.30pm, so I decided I would make the 6 mile journey on foot with my camera (although I hadn’t twigged it was 6 mile 🙄) as the buses didn’t fit in with the time.
So off I wobbled, the pond my first stop and Terence and Teresa were both basking in the midday sunshine
And the ducklings were giving their parents the runaround
Along the road now and a blue tit sat perched on the road sign, with a comical quiff being blown into place by the breeze
I was hoping to see the town cows, now released onto the Westwood for the summer, but no sign of them; they must have been on the racecourse side….
Passed the gatehouse, whose garden is filled with all manner of musical instruments
And the blossom on the cherry trees now coming into its own..
Through town and out the other side, I eventually got to the hospital with 15 minutes to spare
Becky then came to get me and there began a wonderful 90 minutes of informative discussion – she’s such a great listener and adapts the outcome to suit the person.
I did confess to not having worn my hearing aids during lockdown. The hyperacusis absent in the silent bubble I was in, so I felt there was no need. However, when you do start to wear them, obviously the world will be much louder, as the amplification to accommodate my hearing loss will make everything seem loud. The brain doesn’t like change from one to the other so I know it’s important to wear them all the time, but it just takes some getting used to when they’ve been absent. It’s like when your ears have been blocked and you have them syringed, the world suddenly seems so loud. I totally understand why some people don’t want to wear their hearing aids as the silent world is sometimes more comforting than the real one….
So I wanted her to turn down the sound while still blocking out the sounds that physically hurt my ears; the sirens, the noisy traffic, metal on metal etc, just while I got used to the world again.
She tried various adjustments, but because we were in a quiet office, I couldn’t tell the difference, so eventually we walked outside and she said she could immediately see the distress in my eyes as lorries rumbled by. I couldn’t process anything . We went back inside and she made her last adjustment.
TIP for audiologists – take your patient outside to see the effect of a true situation….
She then gave me some tips to try…..
Sometimes for hyperacusis it works better for some people not to wear hearing aids at all but for me, the amplification being turned down, should work better. Maybe when the world gets too chaotic, in a room full of chatter where no single conversation can be deciphered anyway, it might be best to remove them, simply to turn the volume down on the chaos.
I could try wearing one hearing aid, depending which side of the road I was and which ear was facing the traffic…..but the loveliest suggestion, was the simplest – spray something on a handkerchief that reminds you of home, for me it would be my perfume; then when the noise becomes overwhelming, breathe in the perfume deeply and it would immediately relax you. She liked the fact I use my camera as a calming method, but this sounded good too.
She told me how someone with autism, loves horses, so rubs the handkerchief on the horse and when the world gets too noise, they smell the horse and instantly becomes calm. She has horses herself and says that if you approach a horse sideways on, then take a deep breathe, the horse will know you’re not a danger. She said it works with other animals too…..all makes perfect sense..
Finally, having a relaxed posture and muscle tone also convinces the brain that the loud noises aren’t such a big threat.
We had such a lovely chat, Becky explaining everything as she went along and wrote things down for me to take away….I felt very fortunate as I left that this healthcare professional listens and doesn’t expect me to slot into her world, but adapts her knowledge to fit my experiences……
I emailed her afterwards for advice re playmates who have perfect hearing, but have been diagnosed with hyperacusis…..her response was:
“Generally when someone has normal hearing and complains of hyperacusis then they have had a bad trigger and then started to avoid noise, often wearing ear plugs in an attempt to protect their ears. This reinforces the brains concern around the hearing system and so the volume appears increased, making the hyperacusis worse. So its all about continuing to experience the noise but with gradual exposure and keeping the ear stable. Also its important for the ears to receive noise information so that the negative association isn’t reinforced. Obviously having a relaxed posture and muscle tone also convinces the brain that the loud noises aren’t such a big threat. “
So the handkerchief tip may work at relaxing the body, but everyone has to find their own coping method..
I felt I understand hyperacusis better now than when I walked in, simply because she explained, she drew diagrams, she listened and took her time explaining and re-explaining. Time is knowledge for people with dementia and a very underrated commodity.
All done and hearing aids in situ, I was hoping to catch a bus back into town, but wasn’t sure where the bus stops were and just missed one without realising it as it sailed by. I walked along further but stopped at the next bus stop as I saw another bus hoping it would get me into town for the village bus. As we turned into the bus station, the village bus was just pulling out 🙈 so I had no choice but to walk back home again 🤐…..
Camera round my neck, the sun beating down, it was a very warm tiring trundle but lovely at the same time. Back through the Westwood and even the golfers were finishing for the day
It took me 2 hours altogether. My legs were protesting and when I looked at my Fitbit I couldn’t believe my eyes
Think I might stay in the village tomorrow ……😂
P.S….a week after writing this I lost one of my hearing aids 🙈…the dreaded masks we have to wear flips them off easily and I didn’t realise. Turns out its happened to lots of others too 🙄…..
So following on from the end of yesterdays blog….after a beautiful morning with Sarah on the coast and on the way back to Beverley we’d stopped off to see the lambs in the field on the way. I’d seen them first with Gemma, but didn’t have my camera with me 🙈. They were in the far corners today instead of posing directly in front of me, which was inconsiderate of them, but at least my zoom captured this little family group.
It was time for my long overdue Covid haircut. I was beginning to look more and more like Ginger Biscuit as the months rolled by
So I was looking forward to feeling lighter AND for it being a quiz whizz of the hair drier in the morning for me to get out of the house 🙄……
We timed it just right and as the traffic lights went red, I hopped out of the car and Sarah went on her way.
Now my hairdressers isn’t usually a noisy place. It’s never been full when I’d been before…..think you can guess what’s coming….🙈….as soon as I opened the door I knew instantly it was going to be another stressful first post Covid …😳. The sound of hairdryers, of people talking excitedly above the noise and the overwhelming number of people almost had me head back outside again.
Shannon must have seen me and hadn’t quite finished with her previous client. She came over and sat me by the window in the middle of the salon. I tried hard to switch off but the noise was just too much again; conversations blurring into one, hairdryers, music in the corner. I closed my eyes and tried to slow my breathing, after all this was suppose to be a joyous occasion and everyone else seemed sooo happy to be there.
Eventually Shannon came over and took me for my hair to be washed, something I usually like and makes me feel calm, but not today. I wanted the process to speed up. Shannon tried to engage in conversation asking if I was ok but I couldn’t quite decipher the words to string the sentence together, then I found it difficult to form my own sentence to reply, everything merging with the noise of everyone else.
As she sat me down to cut my hair, I think she sensed the distress I was under. Again she asked what I’d been doing, but I had to stop her and managed to ask if this time, we could not talk and I’d simply close my eyes and let her get on with cutting my hair.
I could tell she understood, she knows me well and I was relieved not to have to try explain above the noise.
I was thankful when she finished and tried to smile my appreciation but I simply wanted to get out.
As she opened the door for me, the fresh air felt so good on my face. I thanked her and said:
“Hopefully we’ll be able to talk next time, sorry about the silence this time”
She smiled a kind smile and said it didn’t matter, she understood …….
Another first post Covid action out of the way…..hopefully things will get better and easier…..
After yesterdays traumatic first venture into the outer world, Sarah had txted me asking if I wanted to go with her to Fraisethorpe that I spoke of yesterday. It’s known as a Dogs Paradise and dog walkers and happy dogs spend many an hour there. Within a stones throw of Bridlington yet a totally different world. Wide expanses of beach and sea and I’d have the comfort of Sarah next to me so I happily agreed…
Sarah wasn’t due until 10.30 so I had time for my early morning. It was another cold and frosty morning as I set off through the field
Yet the sun was shining brightly. It was still early so the pond was still and quiet, the ducks just getting ready for the day ahead.
I was back to see how the ducklings had survived the night but couldn’t see them anywhere to begin with. A beautiful haze hung over the water. The coldness of the night meeting the warmth of the morning sun
Then I spotted them at the far end of the pond on the little island with mum
Trying to count them all as they scurried here and there
Still ten, thank goodness, all had survived the night. I love this time of year when the first appear. It’s as though nature is giving you a reason to be hopeful
Satisfied that all was well in duck land, I wended my way round my usual circular route.
A pheasant brightening up the early morning field, where the harvest was starting to appear
The beauty of a gold finch high up on the top most branch of the tree on look out duty
The humble sparrow in full song calling out to its mates
And a bullfinch to round off my early morning trundle
What a start to a promising day…..
Sarah arrived as planned and we made the shortish journey to Fraisethorpe on the East coast. We parked up first by the enormous windmills that line the single track road
The car park looked chocca to me but Sarah said she’d seen it busier and it wouldn’t seem busy on the beach due to its size. Because I was with Sarah, there was no panic, no anxiety, I just went along with what she said and I wobbled down the soft sand to the glorious beach. It was as she said
Sarah had put her wellies on to paddle in the cold North Sea so we ambled up to the waters edge
It was so peaceful here, just the sound of the sea for company
Sooo many dogs played happily and chased around the beach
Sea birds foraging along the shoreline….
We found a gap looking out at sea between the rocks. I tried to get low enough but I knew if I bent down I wouldn’t get up again 😂…..Sarah had to look away as I wobbled and slid across the rocks 😂 but finally I handed my camera over for Sarah to get the shot I wanted
Sarah had timed it so we walked so many minutes then had the same minutes to walk back again as she had to get me back to town for a very important appointment …..
So we turned and retraced our steps only nearer the shore this time and were treated to the special appearance of the Sand Martins who dig holes in the dunes
They were so quick but I managed to get one in flight too – more by luck than judgement
Time to head back…..as for my special appointment…..well….I no longer look like Ginger Biscuit the pony in the village field as I had my Covid haircut but more of that tomorrow….
The day ended with a beautiful rock-a-by-baby moon…..
By pure chance I had my first full free day of zoom a couple of weeks ago. I cherish these days and they feel such a relief after so long of zooming during lockdown. I decided, as it was forecast to be a cold but beautifully calm and sunny, that I’d take the plunge and go on my first train trundle along to the east coast. I needed to do a few practice runs before my first solo trip to Keswick in June.
The day dawned as promise, frosty but blue sky and sun. I had a morning off my early walk and instead planned to catch the first bus into town at 09.50. I was ready early so decided to amble to the pond bus stop to see how the ducks were doing.
Teresa terrapin had just surfaced to bask on her log
And then my heart stopped as did my body. Ducklings had been hatched overnight and there was proud mum parading them along the pond
I counted them in disbelief as there were 10, yes 10 adorable chicks. I was captivated and in danger of missing the bus as I watched these balls of fluff following their mum
But they’d be there later, so I continued to the bus stop where a mum and her little girl were waiting patiently. The little girl must have been about 2 or 3 and was having her first bus ride ever and she was beside herself with excitement. Mum told me she’d been singing the bus song all morning. As the bus came I told her to put her arm out like me so the driver knew to stop. She shouted as loud as she could ‘STOP BUS STOP’….and her excitement had begun. I remember my girls enjoying a ride on the bus……nice memories..
It was when I reached the train station that the day took a turn for the worse, but not before handing over a box of choccie biscuits to my taxi office as they’d been so good to me during lockdown. I then turned and went over to the ticket office where a gloomy man sat behind the desk. I was anxious enough and really needed a smiley face but wasn’t going to get it. I couldn’t remember what to ask for, I needed his help not a grumpy face. I hesitantly said, with a smile on my face:
“ I need a ticket to get me to Bridlington and back again please’
‘You mean a day return’, he said rolling his eyes and making me feel very stupid. It hadn’t started well…..🙄
I was the only person waiting for the train so was hopeful of a silent journey. It was at this point I wished my audiology appointment hadn’t been cancelled the week before, as it would have been nice to have the safety of my hearing aids to help cope with the noise, but sadly Becky was ill so we’d rearranged for the following week; I’d have to cope without them.
I could see the train coming and put my hands over my ears as it pulled into the station.
I climbed into the front carriage and took my seat away from the only two other people. As soon as the train pulled away, I heard music playing and turned round to see the two people had removed their masks and opened a couple of cans of beer. I suddenly felt uneasy and as the music for louder and their voices competing to be heard, I could feel my body tense and realised I was gripping my bag hard. Thankfully the ride would only be 30 minutes so assumed the guard would appear and ask them to quieten down, but no such luck, he never appeared. By the time the train pulled into the station I felt so anxious, so nervous, so overwhelmed. Maybe the sea front would be quieter…..
The signs from the station are really good and once I got started I went from sign to sign following the sound of the seagulls. The first piccie I took was of a quiet beach, looking towards Fraisethorpe, Sarahs and mine favourite spot but only to be reached by car.
A lone seagull perched on the wall looking out to sea
As I headed towards the boats I could sense the tension returning as voices and people started to appear, I kept snapping…
It was lovely to see the lobster and crab pots again and the boats in the harbour waiting for the tide
Little Turnstones were rummaging in the mud for food
There were people sat on the harbour benches chatting away, people walking past me and suddenly I felt overwhelmed by the amount of noise and people, children shouting excitedly and parents shouting even louder. It wasn’t the image I’d had in mind for my day. I tried to focus on my camera, a speedboat catching my eye as it sped out to sea
I knew this would be the final snap
I needed to get out of this apparent chaos. My brain couldn’t take these surroundings any longer. So used was I to the quietness of my village that this was too much. Beautiful as it was I needed to be back in the safety of my village, so after just 30 minutes I headed back to the station for the train home.
I know everyone will find the return after lockdown difficult. Many like me, have forgotten how to be with crowds. It’s just that the experience seems exaggerated with dementia, a crowd can dozens or be just half a dozen people. Sensory overload had whittled its way inside my head.
Utter relief washed over me as I waited for the bus back to the village and I ended the day as I started ….by checking on the ducks..all 10 ducklings present and correct…..