Tag Archives: Stargardts

New sunnies!

12 Apr

Aw wow my Dad bought me a pair of Oakley Polaroid Sun glasses today.
We’re in Austria Skiing and the first two day’s I was very hesitant on the slopes.
Bless my Dad he’s bought a really bright orange outfit so I can follow him down…. he says he feels a bit conscious as it’s very “out there” but it’s great for me!
I was really struggling with my eyes so we decided to try some new glasses.
They were expensive but I swear to god they make everything so much sharper.
We’ve found an area in Austria thats super quiet for skiing so we always take our time when other skiers are knocking about and then go for it when it’s clear!I love it!!
Have a look at my Instagram kayleyrose88 for a few clips.!
Here’s a few pics of the holiday and my blue Sun glasses!!!
Hahah defo getting in the swing of the

visually impared changes we have to make!
Have a top week people ‚ô°

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I love skiing!!!!

13 Nov

Skiing makes me feel free as a bird, in control of my speed and I can travel to wherever i want ( within reason!!)…

From being a kid my dad shared his passion with the rest of the Johnson’s and created a couple of speed demons on the slopes!!!

I started skiing when I was about 8 and we have been lucky enough as a family to travel “all over the shop” (Father quote) and spend loads of brill holidays together.. our little ‘Brian the Snail’ (Mum) comes too and tries her best, and deep down, she likes it ūüėõ haha.

In the last couple of years my Dad became a qualified ski instructor and has traveled to Italy teaching British school kids!  A life time ambition complete! Nice one daddd Xxx

We’re going to Austria again soon! It’s Gaz’s 4th ski holiday n he’s really good too!

Excited!

Here’s a couple of videos of us skiing. ¬†Hope you like..

(I am wearing lime green pants with a purple coat)

Here is a video of Gaz of his second time skiing.  He is wearing red trousers and a yellowy green coat.

I’m considering wearing bells on the slope this year ¬†to make people move out-of-the-way!! ¬†Like my own beeper on a car haha..

I always wait for a clear slope so no one will get hurt!! And follow or get directions off family members on which direction to head. ¬†We usually ski the mountain in sections so it’s easy for my eyes!

I think because I could ski before Stargardts it’s made it easy as I literally just take the rough with the smooth on the slopes and seem to be able to absorb any bumps in the terrain..

Simple!
….always wear a helmet!!

aw wow! thankyou

26 Mar

Im not sure if this will work as im not so computer savvy but lets see!!

http://essceejulies.blogspot.co.uk/2013/03/Living-with-Stargardts-Disease-low-vision-singer-artist-Kayley-Rose-X-factor-music-The-Beatles-macular-degeneration.html

Kind words https://twitter.com/eSsCeeJulies hope you are doing well xxx

Christine’s ongoing painting!!

26 Mar

Christine’s on going piece that I am painting!

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Never wearing my heart on my sleeve – only on here.

26 Mar

ola! Bonjour! hello!!
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It’s been so long I haven’t blogged I do apologise if you were a regular viewer probably my Mum, Auntie¬†and Sue and of course Gaz :D….

I haven’t been up to¬†much really I don’t suppose! Christmas came and went.¬† Me and Gaz made some cool Jamie Oliver ice sculptures, and¬†we went to Austria at the end of Jan skiing… I’ll have to put a video up of us skiing… It does make me laugh I’m a bit of a nutcase on the old wooden planks visually impaired or not.

We had an app on Gaz’s¬†iPhone to monitor our speed, and I am probably wrong in saying this but I’m sure I hit around 52 mph….(we went to a really quiet resort to cater for my special needs Loli!).¬† I was considering wearing a high vis jacket with a spray paint eye on it, but maybe next year.¬† It was great, I wasn’t so good if the slopes got busy –¬†I would just stop and wait for people to go and semi hope for the best……joking.. I was fine… My dad or gaz would normally lead the way and I would go down the slopes in parts…..

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Also, Happy Birthday to my lovely “man in my life” haha, 30 years¬†old¬† on March 10th.¬† I¬†love you loud and proud! Everyone needs a¬†Gaz¬†in their lives<3 Xxx

The last few weeks I’ve been job hunting.. I just want a normal working life, going to the work place and coming home etccccc… Making my singing and¬†the Band¬†more of a hobby than a job.

I do feel a bit like I have some talents… I’d love to do interior design and be the next Linda Barker, but I feel the opportunities aren’t there for me as employers may not understand when they here the word blind….

I made a list of part time things I could do:

  • Cleaner
  • Sales assistant
  • Bla
  • Bla¬†bla

I have found it hard finding links and opportunities to suit my needs…

Being positve and proactive I am though starting a florist course in a couple of weeks.¬† I hope I love it, and hope it makes my hands shake (something I do when I’m excited) and hope to start an apprenticeship and then get into work that way.

I really think there should be some kind of service, I know there are things like advice, but there are no job ideas or anything and when searching the internet on massive font it’s not easy…..Arghhh!

I know there are gadgets to help when you get into a work place, but anything computer based is a nightmare for me!. I’ve never been interested in computing before this disease started, so I need something arty fatty to get by.

I do hope these blogs are not too long but¬†I¬†do find it therapeutic putting what in thinking down on this wee page…

There have been tears recently but once there out, there out….¬†¬†It just gets to the point where I try to block the problem as much as possible, and then when something happens it just tips me over the edge so to speak!!..¬† I ordered a taxi to take me home from a primary school¬†I¬†do some singing work at and ended being stranded¬†at in the middle of nowhere!¬† After the taxi at first being over half an hour late while¬†I was stood outside in the cold,¬†I¬†rang the company and they said, like ususal, “it’ll just be a couple more minutes”.¬† After two more hours in the freezing cold just wearing a thin coat and a dress (with tights Loli), the school had locked up and¬†I was outside, alone, in the dark.¬† ¬†I thought whyyyyyyyyyyyy?!¬† Why¬†do I need to stand here waiting for a generally horrible,smelly taxi, in the middle of nowhere, when everyone else just get in their car with the heaters and drive away. Argggh!¬† Annoying that my dad actually taught me to drive, and I am more than competent, just my eyes let me down…. If only things could be different…

I have also been experiencing lots of dizziness lately, especially when I’m in a car.¬† I think as the blind spots have gone bigger, I find myself in a trance, and the motion of speed and the colours flashing by just makes me wanna puke…. Have a nice day on that note! ūüôā

Oh yeah I joined the gym too!..¬† It’s been great focusing energy on something else.¬† I have been doing¬†Zumba,¬†I stand right at the front, just behind the instructor so¬†I¬†can see the best¬†I¬†can… I’m sure the instructor thinks I’m her stalker Loli!
Enjoy!Xx

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I could never see my eye liners in my makeup box, so I’ve painted blue nail varnish on them so they stand out rather than feeling around for them there just there now! #goodthinkingbatman

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Show time!

13 Nov

Hi y’all!
I’m quite excited about Friday, I have quite a big show coming up.. It’s related to the Olympics so I am learning the Shirley Bassey song GOLDfingerr.. Convenient¬†aye? ¬†woop ha

I’m¬†gonna¬†try and¬†post a vid of my practise at my mums house later.

I just purchased my first Xmas presents today!!!! Also for my mum ahhhh nicey nicey woop.

Got a new phone too.¬† My other one landed in a cup of tea a few days ago, so I went for the Samsung Galaxy Note… I hadn’t used my old mobile for so long as the text was far too small¬† and I¬†could only pick out certain words from it, such as¬†‘Hi’¬†etc…¬†So I have been having¬†my friends to message¬†me on my iPad.. But wahho feel like a new women with this phone ha! all technical etc…. The text is pretty large .. It could be larger but my friend is looking for an approach enlarge it¬†even more.

The only difficulty is the home page. The clock is big, but icons such as settings, camera, gallery bla bla are tiny! I know where the basics are, but I may need to whack my magnifier out to have a good look and play around.

Anyway I’ll do a blog on my phone once I’ve finished learning this song!

Kayley rose

The past few months!

6 Nov

ūüôā it’s been a while!

I’m still riding my bike (in the cold) but wrapping up warm and getting some what tangled at times haha! I need some gloves actually as I set off the other day and my fingers felt a gust of wing brrr!
The seasons are changing I love autumn well we are I suppose close to winter now as the trees are looking very bare but the frost on the grass and the leaves off the tree on the floor are beautiful and crunchy (ooo such an author) haha.

I did notice a slight vision change though.. It kinda scares me when I look into my blind spit it does make everything waves strange and odd.

I went running with my friend a few weeks back we got caught in the dark! I heard some leaves shuffling, and out of nowhere I was faced with a man … My friend saved the situation and dragged me over to her side of the path!! I didn’t put two and two together it would be do¬†Ron coming towards us. Was just thinking what’s that noise!!!! It’s funny. Remember last summer I was my dogs Alfie and Lola and had them off the lead and heard clip clip clip clip, and I thought to myself, “what on earth is that?”, before I knew it, a huge horse was upon us¬†and I was like¬†“mind the dogs!”.¬† The person riding the horse must have thought what an idiot!!! But cba¬†telling them my life story?. Maybe just give her the blog details ha ūüėõ nootttttt.

I’ve been singing at weddings, and had a lot of band¬†stuff on… It makes me think when I perform. What a lonely little world we stargardts folk see through! It’s like singing to black hole, it does annoy me though I’m all for being positive but it’s so boring looking at nothing!

We did a cool gig though last week a Halloween/Bonfire party.  We dressed up, it was cool.  I wish we could dress like this every day ha random and colourful!

I’m still working on my paintings.. One of my paintings was selected to go into the¬†Menier¬†Gallery in London in September to celebrate 25 years of the Macular Disease Society… I’ll put some pics up in a min!

My in-built coat is on….my extra six or seven pounds for winter..I ‚̧ filling¬†my belly with anything I can get my hands on Loli… Not that I live in a bin or anything!!

My little dog¬†Yoko is¬†growing fast.. She’s nine months old and is adorable, fun and cute as ever.¬† Yoko and my mum were out walking a month ago and a horrible vicious dog attacked them both… Thank god they’re both ok though, and antibiotics sorted them both out. Pheww

Firework night was just last night, very enjoyable to the ears and the eyes.. Sparkle and screams!

I’ll add some pics n then it’s time to eat maybe a bit of chocolate. A cup of tea!

Hope all is well and happy Xxxxxx
Miss Johnson.

P:S – I didn’t want to smile stood next to the yellow stand below as it peed me off!!!! And I didn’t think smiling was appropriate. The painting of the man isn’t by me…. That’s a lady who’s husband has this problem so she painted her son how she sees him one half and how her husband sees him the other half, a great concept.

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