Welcome to our Glaucomarize Blog

Here I will be posting articles, advice and information to help Glaucoma sufferers and their families throughout the world, to gain...

Wednesday, 12 January 2022

FLOW - Music with Therapeutic Benefit

 

In 2021, an extraordinary piece of music was released by Jayl - “FLOW (Decaural)”. This unique composition is designed to provide therapeutic benefit for those suffering with migraines, insomnia and anxiety; as well as helping people to relax and to meditate. The song has been trialled with a select group of discerning individuals who we felt might benefit from it, and their responses and feedback have been highly encouraging and very positive. This makes me very happy, as I know the years of application, knowledge and dedicated work that went in to creating it. Moreover, it’s wonderful to hear of others feeling better because of it. It’s certainly helped my head by tuning in to it; so I’m now encouraging other to give it a try. And it’s only 10 minutes long!

 And I'm sure I'm not the only one who can say they have difficulty in meditating and ‘switching off in the mind’. Well "FLOW" assists me in doing this and has actually helped me in so many ways. I've listened with headphones at the onset of a migraine. The migraine did not evolve any further, which was ‘a first’ for me. Afterwards I felt sleepy and had a rest. I felt calm afterwards. I felt so much better. The way this track is designed is like it gets right into a part of your brain and works wonders. A myriad of sounds, waves and beats and all feel very therapeutic and healing. And I hear something different on every listen!

It helps me with anxiety and to be able to really relax and I can personally describe it as a "brain clean". Amazing actually! I feel totally different mentally after I have listened to the whole track with my eyes closed. 

So it's very beneficial for my glaucoma, because I get anxiety and bad migraines with this disease. Now I've discovered "FLOW" I can say how much this is helping me and what an important piece of healing music this actually is. Thank you .

 Niki – January 2022  😎 ❤

"At the centre of it all - your eyes"

https://youtu.be/7BM9JzVtxh4


GLAUCOMA AWARENESS MONTH

 

GLAUCOMA AWARENESS, INFORMATION & SUPPORT

“To glaucomarize”- Transitive Verb

RAISING AWARENESS OF THE SERIOUS EYE DISEASE KNOWN AS GLAUCOMA: -

A CONDITION THAT AFFECTS OVER 80 MILLION ADULTS AND CHILDREN - WORLDWIDE

"At the centre of it all - your eyes"

GLAUCOMARIZE SUPPORT GROUP

Our Facebook Support Group has now grown to over 1,500 members. This is a free online resource for patients, families and health professionals to interact and support each other.

JOIN TODAY -  https://www.facebook.com/groups/312890088821178/

                               "At the centre of it all - your eyes"

THE BIG SKY

Glaucomarize are now challenging and raising awareness of what Niki calls “The Big Sky”- panorama and perspective; as lately, there has been a notable disregard from planners and developers with regard to glaucoma and sight impairments, loss of light and vista, and the difficulties and trauma these issues can cause. 

In our own vicinity, we live in a predominantly elderly and disabled community, many of whom are suffering from serious eye conditions – yet council planners have approved a major development that will profoundly affect so many lives, without conducting either a health impact assessment (HIA) or an equality impact assessment (EIA). In this case, councillors and planning officers have been making arbitrary decisions, without any knowledge or expertise regarding disabilities and visual impairments – which is why these assessments are vital and necessary and consultation should be mandatory, as the health impacts are often deeply challenging and profound.

We understand that these kind of decisions (which often flagrantly disregard both disability and equality enshrined in law, and thus become discriminatory), are going on all over the country and often lack foresight, kindness and consideration. Especially at a time when so many have and are suffering due to the unprecedented global pandemic.

Glaucomarize calls upon politicians and councillors to review the current planning laws; especially the cruel and antiquated premise that people do not have the right to a view. This might be the case if people have moved to a place without a specific view. But to take away people’s views and panoramas that are already established by constructing huge buildings that obstruct these often-beautiful vistas and block out the sunlight, is just pure meanness and thus a disgrace in a so-called civilized nation.

And for partially-sighted people who have often moved to a place especially for the views, special light and the sunsets, this is particularly crushing for their physical and mental well-being. It’s just adding to their problems and vision issues by essentially ‘stealing the sky,’ and reducing their light and visual perspectives. Moreover, many eye conditions (particularly glaucoma) are exacerbated by stress and anxiety, which can be serious when threatened with such inappropriate construction projects. 

The picture above is taken at Dungeness on the Romney Marsh in Kent, and demonstrates what Niki means by ‘The Big Sky’ and how she (and others like her) can see much clearer in such an environment.

 Jayl De Lara - January 2022

"At the centre of it all - your eyes"

 

SUNFLOWER LANYARDS

Niki has recently been at the forefront of raising awareness and encouraging staff training with local organisations, regarding the Sunflower Lanyard scheme for hidden disabilities.

Many disabilities (like Glaucoma), are neither obvious nor visible. 

Niki has often fallen victim to impatience, frustration and sometimes outright rudeness; simply because of people’s unawareness and often complete ignorance. Her visual impairment is not visible to others. And in speaking with other people with hidden disabilities, she realized she was not alone, and that many had suffered similar distressing and even dangerous experiences. And this is what this excellent scheme was set-up to do – to protect vulnerable and disabled individuals and create awareness and tolerance.

Not all people with hidden disabilities necessarily require assistance. But if they do, wearing the Hidden Disabilities Sunflower Lanyard discreetly indicates that they may need additional support; or simply just a little patience, understanding, or just a little more time. Making the invisible visible. 

The scheme was launched in 2016 at Gatwick Airport by designers, Tabbers Ltd in liaison with the OCS Group UK, who provide support services to UK airports. Since then (and especially through the global pandemic) this visionary initiative has grown enormously.

Today the lanyard is being distributed in more places than ever; and is recognised at international airports, cinemas, shopping centres, supermarkets, NHS Trusts, student campuses, railway stations and sports venues. Recently, in a new partnership with National Highways, the iconic Sunflower can now be displayed on vehicles.

Nevertheless, more education and recognition are still required to make sure the scheme is known to all. Glaucomarize will continue to support and engage with this mission.

Jayl De Lara - January 2022

                                   "At the centre of it all - your eyes"



Wednesday, 11 July 2018

DON'T FEEL SO IN THE DARK


We now have a Glaucoma discussion group on Facebook, with new members from all around the world joining daily. This is an online community and resource for patients, relatives, doctors and health professionals to share information and raise awareness about the complicated group of eye diseases known as glaucoma. Don't feel so in the dark or alone ... JOIN TODAY ... 

Thursday, 15 March 2018

POSTER CAMPAIGN @ LONDON STATIONS

WORLD GLAUCOMA WEEK

In celebration of this, we’re proud to announce our poster campaign at major London stations. We are looking for volunteers, fundraisers, supporters and patrons to help us grow and help more people and families affected by this complicated disease. Our poster campaign has been organized and implemented by the amazing Shem Booth-Spain and Admedia; getting right behind us with their help and support. Much gratitude to them. Our posters have been placed at King’s Cross, London Bridge, Euston, Cannon Street, Charing Cross, Liverpool Street, Paddington and Victoria. 

Tuesday, 14 November 2017

AT THE CENTRE OF IT ALL - YOUR EYES

A post by Niki's husband and partner - Singer/Songwriter/Poet & Designer Jayl - explaining how the logo for Glaucomarize was designed with Niki's eye at the centre. This is the eye that Niki lost her sight in. This also links with Jayl's famous song of love - "The Wedding Song (Today is the Day)" where once again, Niki's eye is at the centre of the CD design. The lyric - "At the centre of it all - your eyes" is taken from David Bowie's final mystical and seminal masterpiece - "Black Star". The eye photo is taken from a classic Mike Walter shot, as Niki has done many professional modelling shoots in connection with Jayl's music and art and the Harmony Label. Click on the picture below to see and read more ...

 Click on picture to go to WeddingSong.Today and see more.

Monday, 17 July 2017

DECEPTION OF PERCEPTION

Dimension is low – no 3D glow,
Illusions of vision – perception is different.
That stranger is too close; I need to feel some space,
My brain feels too busy, longing for my own pace.

Seeing the world through strange vision and colour,
For some there is black, for some there is blue.
How special we are, never doubt yourself now,
Always be true to you.

Something maybe closer than it looks,
These facts are not written in the books.
Find out for ourselves with frustration and pain,
But be kind to yourself and your dignity will remain.

Shades of light are too dark then too bright,
The mirror is too close and the heat burns my eyes.
But don’t be fooled though; I am still cool,
And I am still smart and wise.
You know my faith is as strong as the vast blue skies.

Niki De Lara – July 2017 💗                                               

Friday, 7 July 2017

FEELING GOOD (Beauty & Cosmetics)

For those who love their make up (like myself), it’s been a long journey since my diagnosis and operations to finding a product that I can wear on my eyes for even just 2 hours. Firstly, I found this strange as I’m one of these ladies who just loves beauty products. I didn’t wear any make up on my eyes for 2 years after my first eye operation. Not leading up to the op either, as I was using 4 different eye drops all day. I struggle with applying eye make-up now as I’m blind in my right eye so I can’t see to apply it properly to my left eye! 😨 This was a miserable realisation! 😒Add that to not knowing what to apply or how to take it off ended up in nothing at all.
So I just concentrated on lipsticks and nails and blushers. I always wear dark prescription sunglasses everywhere so it didn’t seem to matter anymore. All the eye make-up went in the bin and I avoided even looking at it in shops. Many people have told me my eyes are beautiful without make-up and I began to tell myself that too.
Time went on and I started to research which brands there could be a possibility of using. I’d given my eyes a rest, so I thought maybe time to experiment using my patience. With some help from a few good friends and a few support group conversations over the topic, I discovered that pure coconut oil was the best eye make-up remover and it really IS.
I researched into vegan eye make-up, chemical free, organic eye make-up, sensitive eyes and was pleased to discover that I could now wear for a couple of hours “Almay” mascara and eye shadow by “Pacifica” which I discovered on an excellent website called “Love Lula”.❤ This eye shadow is made from natural minerals and is formulated without talc, parabens, petroleum, etc. 😐 😱 It was a delight when I had the “me” time to apply these. I could keep them on for about 2 hours. Very pleased with the results. It’s only saved for special occasions and my day to day is my dark glasses and one of my many lipsticks. But it felt great finding that freedom after having to make such drastic changes.
Never doubt yourself by sudden limitations placed before you. Always try try try with all your strength and faith to make the best of everything you have in the most positive way you can. We are all individuals but sometimes we need a little help and guidance and I hope I’ve given you some inspiration here.

Niki De Lara – July 2017 💗