- INTRODUCTION -

Welcome back to your monthly newsletter magazine, dedicated and produced for OOKP patients. Please consider this YOUR magazine, written for you, on topics you choose and directed by your feedback. We want to fill its pages, with all the information you wish to know regarding your OOKP journey.

This is only achievable with your input and feedback. So, please contact us giving suggestions for articles and content you wish to be included. Also, please give feedback of how we can make this newsletter better.

If you like our goals, why not become a volunteer and help us research, write and produce the magazine!

If interested, email us at

ourookpservice@gmail.com

This is our new, dedicated email address, so please enter “Newsletter” in the subject line.

Or visit our website below and click “CONTACT US”

www.ookpsupport.org

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- TABLE OF CONTENTS -

* Introduction

* Editors Update

* Pre-OOKP Surgery

* Managing Emotions & Doubts

* Post – OOKP Surgery

* Business Opportunity

* Support Group Mission

* Technology News

* Wellness Corner

* Community Corner – Your Stories

* Upcoming Events & Resources

* Closing Thoughts

* Contributors Praises

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EDITORS UPDATE

Hi Guys

Welcome to issue 6 of the OOKP newsletter, VISIONARY HORIZONS.

Let me take this chance to welcome you to 2026 and hope this year brings you everything you desire and all your wishes come true.

So, as an update, we’ve created our website, with a professional and easy to remember address, so it should be easy to access whenever you need to find information related to our OOKP condition, or need services and videos which help with your journey.

For all of you who’ve not seen the new website address, it’s:

www.ookpsupport.org

Please, pass this on to anyone you feel may need help, whether peers, new patients, friends, family or carers. The information on there is specifically designed to help us all and as it’s continually changin, please bookmark it and return on a regular basis.

We also have the computer I requested. It’s a rugged tablet, meaning I can take it anywhere and continue developing the service. Whether it’s expanding the website, creating newsletters and articles, or showing videos and documents to you all when we meet, it should make my job much easier, so thank you.

We've raised £270 on the funding front, used to purchase the web address and computer, but donations now seem to have stopped. Please, if you can, encourage people to give to our funding, as the more money we raise, the more we can provide, making more services available to you. Remember, it’s your support service, so the money raised all goes to help you.

With regards to this, two of our members have said they will try fund raising this month.

One member said she will try getting her church group to help fund raise and Rachal Keon said she will try getting her local to run a quiz and raffle to raise money.

I wish you both good luck in raising as much as possible, and please, can everyone else consider doing something along the same lines.

Well, I think thats enough of my ramblings for this month. Please take a look at this months newsletter and look to learn some new skills in this new year. I've tried making these newsletters interesting, so feedback would be gratefully appreciated.

Can you believe, only one person gave feedback when requested last month. Lets get back to chatting with each other. It's the only way we can improve our journey. If we don’t communicate between ourselves, then we can’t question the public when they don’t communicate.

Remember – What goes around, comes around, so lets get talking

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PRE-OOKP SURGERY – UNDERSTANDING THE HOSPITAL EXPERIENCE.

For many OOKP patients, one of the biggest sources of anxiety before surgery isn’t the operation itself, but dealing with the whole hospital experience. Hospitals can feel unfamiliar, noisy, and unpredictable, especially when navigating them without sight. Understanding what to expect can reduce fear and helps you feel more prepared and in control. This results in you being less stressed, which can help with the administration of drugs. It can also give you a better understanding of what information is being given and ensures your family or carers also remain relaxed, so they can provide maximum assistance.

Here’s a step-by-step overview of what the hospital experience often involves:

• Arrival and Check-In.  On arrival, you’ll usually be greeted by reception staff who  confirm your details. Although staff are highly trained and experienced, they may not be aware of your exact needs, therefore, don’t hesitate to ask for verbal guidance, arm support, clear directions or confirmation of any instructions. Hospitals are  required to provide assistance when requested and staff realise, by  making you feel comfortable, you respond more positively.
  
  

• Waiting Areas. Waiting rooms can be busy and noisy. Staff can guide you to a quieter space if needed. Use this time for creating a calming mental  wellbeing. For example, use the breathing exercises given in previous newsletters, or listen to music or an audio-book through headphones. This can help you filter out intrusive surroundings. The more relaxed you are, the more responsive you will be.
  
  

• Pre-Surgery Preparation. Nurses will explain what happens next, often while checking vital signs, taking necessary measurements (for example, blood pressure and heart rate) and asking questions. Ask them to describe and explain what they’re doing before they do it. This can make the process feel much calmer and less intrusive and allows you to become familiar with the procedure, resulting in a more relaxed you. Nurses, Doctors and Consultants understand, the more relaxed they can make patients, the more responsive they become, so ensure you work together as a team. Remember, the folder you brought contains the questions you need answering. Ask one of the team to look through and provide the answers. This will reduce any anxiety you may be experiencing.

• Day of Surgery. You may be asked to change into a gown and wait in a designated area. This is necessary, to ensure medical staff have access to the areas they wish to work on and you receive the correct treatment. Don’t let this cause stress, it’s simply a procedure, so you receive the best treatment possible. Staff will talk you through each stage before you enter the operating theatre. Remember, it’s okay; and often expected; you ask for reassurance or repetition of information. Only once you have a clear understanding of what will happen, will surgery progress.
  
  

Hospitals can feel intimidating, but you’re not expected to manage alone. By asking questions; understanding what the experience usually involves and asking for support when you need it, you turn an unfamiliar environment into a manageable one. Preparation brings confidence, and confidence reduces fear.

Remember, many of our members have already been through this process. They have experience of how it feels. Therefore, if you have any doubts regarding any aspect of OOKP surgery; especially emotional questions; we’re available to help. Ask us a question via any of our contact methods and we’ll ensure you’re provided with answers, whether by phone call, messaging or email. This is the mission of our support service, so all you need do is ask.

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MANAGING EMOTIONS & DOUBTS – HANDLING SETBACKS WITHOUT LOSING HOPE.

As in all aspects of life, we must be aware, not every part of the OOKP journey moves forward smoothly. Delays, unexpected test results, or changes in plans can feel deeply discouraging. When progress slows, it’s easy to feel as though hope is slipping away.

Setbacks don’t mean failure — they are part of many medical journeys. Here are ways to cope when things don’t go as expected:

• Allow Yourself to Feel Disappointed – It’s normal to feel upset, frustrated, or tired when plans change. Acknowledging these feelings is healthier than ignoring them. Once you understand the situation, it’s easier to accept and create an updated progress plan

• Separate Delay from Outcome – A delay does not mean surgery will not happen. Often, it simply means more preparation or caution is needed for your safety. See the delay as your team doing their ultimate to ensure surgery is as positive as possible.
  
  

• Focus on What You Can Control – You may not be able to control appointment dates, but you can control how you care for yourself each day — rest, routine, connection, and mindset. By controlling your events, it ensures you are of the strongest mind-set to undergo surgery, so attracting the best possible outcome.

• Talk It Through – Sharing disappointment with peers who understand can prevent emotions from becoming overwhelming. Others have faced similar pauses and come through them with success. Being able to justify your anxieties with peers, then obtaining alternatives and answers to these anxieties, often gives you a better understanding, which allows you to re-focus.

• Return to Small Anchors – When the future feels uncertain, return to simple anchors: breathing, listening to calming sounds, or grounding yourself physically by placing your feet firmly on the floor. Once you can anchor yourself, you can re-assess a situation and re-calculate your plans, to re-gain positivity.

Hope does not disappear because of a setback — it simply needs nurturing. Even when progress feels slow, you’re still moving forward, one step at a time, with a whole team beside you. We will always be alongside you, whilst ever you need us.

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POST-OOKP SURGERY- UNDERSTANDING FOLLOW-UP APPOINTMENTS.

After OOKP surgery, follow-up appointments become an essential part of protecting your vision and long-term outcome. These visits may feel frequent at first, but each one plays a specific role in monitoring healing and addressing issues early.

Here’s what follow-up care usually involves:

• Regular Check-Ups – Early appointments may be close together. Over time, they usually become less frequent. These visits allow specialists to examine healing and adjust care as needed.
  
  

• Eye and Oral Assessments – Because OOKP involves both the eye and oral tissue, doctors may check both areas. They may describe what they’re seeing, in terminology they’re familiar with. However, don’t hesitate to ask for explanations in plain language. This increases your knowledge, leading to a better understanding of the process..
  
  

• Medication Reviews – Eye drops or other medications may be adjusted. Ask what each medication is for and how long you’ll need it. By understanding what the medication provides, reduces your anxiety and allows you to gain a more detailed knowledge. Remember, you’re new to this process; you can’t be expected to know the process without it being explained in a format you understand.

• Opportunity to Ask Questions – Follow-ups are not just for doctors — they’re also for you. Keep a list of questions (spoken notes are fine) so nothing is forgotten. Never be afraid to ask your medical team, they expect it.

Think of follow-up appointments as protective checkpoints along your OOKP journey. They’re not signs of concern, but signs of careful, specialist care designed to safeguard the progress you’ve made and continue the improvement of your health.

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- BUSINESS OPPORTUNITY -

If you wish to learn a new vocation, I offer a course, teaching individuals how to become a “Blind Awareness Trainer,” where you train front-line staff, to correctly assist blind and visually impaired customers.

This is my vocation, where earnings are considerable, it provides fun and interesting social opportunities and I increase the number of people who can offer assistance to visually impaired individuals.

If you’re interested, send an email with “TRAINING” in the subject line, for more details

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- THE SUPPORT GROUP MISSION -

Our mission, is to empower people facing OOKP (“tooth‐in‐eye”) surgery and their families, by providing clear and accessible information, practical help and a caring community. We exist, to relieve the stress and isolation of this rare procedure, by advancing patients’ health and well‐being, through education and support. In practice, we aim to give everyone affected by OOKP, the knowledge, tools and emotional support they need to feel informed and confident about their care. This means offering up‑to‑date guidance on the emotions of surgery and follow‑up support, building peer networks to share experiences, involving families in the process, and partnering with eye clinics and charities, to deliver the best possible outcomes. This can only be achieved with YOUR help!

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TECHNOLOGY NEWS – UNDERSTANDING TXT & WHATSAPP ABBREVIATIONS.

As you’re aware from our contact methods, text messaging and WhatsApp are popular ways to stay connected, but the abbreviations people use can be confusing — especially for those new to digital communication. Below is a plain-language reference table of common abbreviations, designed to be easy to understand and revisit whenever needed. Now, when you receive a text message of any kind, you have a reference table to decipher exactly what is the real meaning of the message.

Common TXT & WhatsApp Abbreviations

LOL - Laughing out loud

BRB - Be right back

BTW - By the way

OMG - Oh my goodness

IDK - I don’t know

IMO - In  my opinion

IMHO - In my honest opinion

FYI - For your information

TTYL - Talk to you later

 ROFL - Rolling on the floor laughing

OK - Okay

TY - Thank you

THX - Thanks

NP - No problem

SMH - Shaking my head

LMAO - Laughing very hard

ASAP - As soon as possible

B4 - Before

CU - See you

CUL8R - See you later

GR8 - Great

U - You

UR - Your / You’re (context matters)

JK - Just kidding

DM - Direct message

PM - Private message

TBH - To be honest

RN - Right now

WYD - What are you doing

Tip: You don’t need to use abbreviations yourself. Writing full words is perfectly acceptable. Understanding them simply helps conversations make more sense and reduces confusion.

These are only a small collection of the common abbreviations. If you require more, please let us know and we’ll produce an additional list. If there’s an abbreviation you don’t understand, either ask the sender to explain, or simply type the abbreviation into Google and ask for the meaning. By doing this, it reduces miscommunication and allows you to correctly understand what is actually being said.

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WELLNESS CORNER – THE IMPORTANCE OF REST & QUALITY SLEEP.

Rest is one of the most overlooked parts of recovery and emotional well-being. Whether before or after surgery, quality sleep allows the body to repair itself and the mind to reset. When sleep is poor, anxiety, low mood, and physical discomfort often increase. This can affect your ability to obtain the maximum effect of your recovery, so it’s essential you avoid such conduct.

Here are practical ways to support better rest:

• Create a Wind-Down Routine – Going to bed at the same time each night helps train the body. Listening to calm music, guided relaxation, or audiobooks can signal it’s time to sleep. It also allows the mind to relax and the brain to induce sleep much quicker.

• Limit Stimulation Before Bed – Reduce screen use, large meals, caffenated drinks or intense conversations late in the evening. Choose gentle, familiar sounds instead. The less the brain is stimulated (forced to think) the more effective the sleep process.
  
  

• Comfort Matters – Ensure mattresses, pillows and bedding support your body well. Small changes, like an extra pillow under the knees or neck, can make a big difference to the effectiveness of the sleep.

• Rest Without Guilt – It’s essential to understand, rest is not laziness. It’s an active and necessary part of healing. Allow yourself permission to rest when your body asks for it. You’ll find, it dramatically reduces your recovery time.

• Daytime Balance – Gentle daytime activity helps improve nighttime sleep. Even short walks or light stretching can help regulate your sleep cycle. Ensure activities are conducted at least 2 to 3 hours before retiring to bed, to ensure you do not stimulate the body.

Good sleep supports healing, mood, memory, and resilience. By prioritising rest, you are actively supporting both your physical recovery and emotional strength.

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COMMUNITY CORNER: YOUR VOICE, YOUR STORIES

Well, I’m back! Hopefully you’re not getting bored with hearing about my ventures and it’s giving you a little confidence and inspiration to bite the bullet and get out into that wonderful world out there and achieve your goals.

So, if you remember, I’d moved into mummy bears and found my bearings. I’d obtained my counselling degree, but after testing my skills, needed something more appealing and testing. I’d found a new friend and we’d ventured into teaching community groups and this was giving me a real sense of achievement.

I now had to decide how I could progress with this, to allow me to fund my lifestyle. I don’t have a luxurious lifestyle, but the things I want to achieve do cost money.

My friend Jonathan was loving our partnership. He said it really opened his eyes (smile) to the needs of others, but also showed him, a disability doesn’t mean a person is unable to achieve goals, just that it takes thinking out of the box to reach the end goal. He said his manager was looking at offering the people they were training, some kind of NVQ qualification, so they could develop in their financial journey.

Those unfamiliar with NVQ, they are similar to A level and graduate degrees, but in practical skills, rather than academic skills. They prove to an employee, the person has the ability and skills needed for a specific career, like running a successful community group, but where such skills are not offered directly by colleges or schools.

They’re actually graded from novice through to management level and give opportunities to those who are more hands on, rather than scholars.

Jonathan’s manager was really excited about the idea, but said he couldn’t find a course designed to deliver the skills needed for credit union work. He said, this was so disappointing, as he believed he could train and recruit so many people if they had the specific skills needed.

I explained, I’d achieved a couple of NVQ’s myself after leaving school and they really gave an insight into a particular avenue of work. I said to the manager, “why can’t we submit the basis of a credit union qualification ourselves.” The manager said there are a number of strict rules to follow to achieve NVQ recognition, the first being courses must be created and delivered by those qualified as a teacher. Hmmm I thought. Maybe I could obtain such a qualification and it would help me in my love of teaching.

So, guess what? After some discussions and funding from the credit union, Jonathan and me enrolled to obtain our teacher training certificate, which if achieved, would mean we could teach over 16’s to obtain a recognised qualification.

It was difficult and involved a lot of work, for example, preparing teaching schedules, work plans, marking levels etc, and it was a 1 year course, but I tell you, it was one of the most interesting qualifications I’ve ever taken. It taught me so much about organisation, logical thinking, variations etc, and Jonathan and me were there to support each other.

I keep mentioning Jonathan, because he gave me one of the most exciting experiences of my life. With all the work involved, we had to complete homework. This we did at his house, as his wife, the vicar of our Parish church, was often out visiting her parishioners during the evening.

Jonathan’s wife was a wonderful Brazilian woman, who had travelled to Europe to master her religion, then moved to my local city of Sheffield, to take her position. She spoke fluent English, but when at home, her and Jonathan spoke Portuguese, so he could learn the language for when they visited her family in Sao Paulo.

I’d never been good at learning languages. All we learned at school was French and German. Unfortunately, the French teacher had a lisp, so when I sat at the front of the class, I was covered in spit and when I moved to the rear of the class, I was influenced by the class “bad boys.” I told you my school report said “very easily lead,” so technically, I was only following instructions. (smile)

However, now I was older and wiser (no, don't, I was a little wiser) I found speaking another language fascinating. I kept asking Jonathan’s wife, what she'd just said. Every time, she told me and helped me learn the word. This allowed me to begin learning a new language and very soon, I was understanding what conversations were occurring in the household, while learning my teaching qualification.

It was during one of these evenings, my life changed. We were approaching the summer holidays, meaning college was to shut for 6 weeks. We’d been given assignments to keep us occupied, but we’d already completed these, being enthusiastic to construct the credit union NVQ. As I sat in the lounge, Jonathan and his wife approached me and said – “we’re going to see the family in Brazil for the 6 weeks we’re away from college, would you like to come with us?”

What? Did I just hear them right? Did they just invite me to stop with the family? No, they can’t have. I said, you want to take a blind man with you, to meet and live with your family, who I’ve never met, for 6 weeks, in Brazil? They both said YES. They said they’d discussed the matter with their family, who were really excited with the idea. The only issue was, there was only 1 other person in the family of 7 who spoke English. They said, my understanding of Portuguese was excellent, but I would need to learn more, which they were willing to teach me in the 4 weeks we had to arrange all this.

Well? Can you guess what my answer was? Of course, it was YES, YES and Yes again. The opportunity to live with a genuine Brazilian family, in Sao Paulo, who spoke no English, who’d never met me before, and who were unsure of how to deal with the needs of a blind man, the opportunity was unmissable.

Over the 4 weeks I had to prepare, I had 1 hour language lessons every day. I learned basic conversational Portuguese, which would help me in everyday situations. Not the French rubbish I learned at school, like “my name is Martin and I am going to the town to visit the swimming pool and the market to buy a plant for my garden.”

I was learning phrases like, “can I help with the cooking,” “where are the plates,”have you seen the remote control,” etc. All the phrases which would help me conduct myself in a family environment. It was amazing. I found, because I had a purpose for learning the language, I began learning so much quicker.

As we said in last weeks section – if you have a problem, find a solution and create tasks to take you to your goals.

By the time I flew, I could hold a slow, simple conversation, in Portuguese, with a Brazilian who understood what I was saying. I was ready. I was on my way. No longer just going to Malta for a holiday, but flying to South America, a continent few holiday makers travel to, then living in a family environment,, where English was not the first language. WOW. Oh, and all this, while I had no sight.

Some say stupid. I say, what an education and a life time opportunity.

On arrival, it was more difficult than I thought, but I would not have missed it for a king’s ransom. It was so educational. First of all, the people of Sao Paulo are extremely fast speakers. Just walking through the airport to the taxi, everything I had learned in my conversational Brazilian was thrown right out of the window. I couldn’t understand a word they were saying. Jonathan said it takes a couple of days to become accustomed, but I was doubtful I would ever understand. I thought,, “how will I survive, the only person who speaks English are Jonathan and his wife. What happens if they’re not there?

I began to panic a little, but then thought, use this as a learning curve. You managed when you lost your sight, this is just a different page of the same book. As I sat in the taxi, on my way to meet the family, I recalled my introductions, so I could make a good impression with the people who’d invited me into their home.

And guess what? I’d no need to panic. Although the population of Sao Paulo are known for speaking fast, the family were aware of my situation and welcomed me as one of their own. The moral of this is, never over-think a situation, as it’s rarely as bad as what you imagine. Take a breath and use the skills you have, to achieve the results you desire. It the results are not quite in line with your overall goal, learn a few new skills, then use these to help achieve your goals. Continue this process and you’ll find, not only do you achieve your goals, but you collect knowledge and skills which help you in different situations, making your progress more enjoyable. And if you struggle, revert back to the most basic stage you’re comfortable with and progress from there. You’ll find, people are always willing to help, if they see you’re making an effort.

The family quickly realised I’d taken time to learn their language, so they were willing to assist, by speaking slowly, so we could both understand the situation and progress.

That’s it for this month. I’m finding it difficult to concentrate, with all the wonderful memories which are flooding my mind.

I’ll organise all these for you and continue my adventures next month. But, take the time to learn just a simple skill regularly, and the feeling and experiences you receive are what makes living worthwhile.

So, until next month, never waste a moment, there’s so much out there to enjoy.

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- UPCOMING EVENTS & RESOURCES -

As we develop the support service, website, newsletter magazine and WhatsApp group, we want to produce podcasts, webinars, workshops, fundraising events and other accessible materials members can access.

If you have news to share, please let us know by email, and we’ll advertise it here, for all to access and join. The more we can inform people, the more this service will grow. Lets make it a service to be respected, one which others aim to imitate for their group.

Keep communicating with us and others, it’s the only way we learn and progress, to make life easier.

So come on all you budding bakers, crafters and sales gurus, lets get some events planned to raise money. Maybe, we can raise enough money to have a Christmas trip to London, to see a show, after we ‘ve discussed our progress.

“Sound good? Only we can make it happen”

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CLOSING THOUGHTS: EMBRACE YOUR VISIONARY HORIZONS

Hopefully, you’ve found this months newsletter interesting? It's difficult thinking of topics to cover all by myself. Please, can you send me some suggestions of what you'd like to learn about or what interests you.

This is where the list of TXT abbreviations came from. A member asked if I could give a list of the common abbreviations used in messages, as when they receive a message from their friends or family, they get really confused with what the message actually means. So, I created the list.

As we're well aware, we all need support, and that also includes me. I need support with getting this service to be one which we can be proud of and which others turn to as a reference.

We've advanced so far from the meeting we had, where this was only an idea, so lets continue this by communicating more and helping when people ask for it. We all know how difficult it is getting others to listen, so lets not lose sight of why this support service was created.

So, I'll be back in touch next month with more useful articles, which can make your journey so much more enjoyable.

Until then, take care and keep achieving in life

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Website

www.ookpsupport.org

Phone

07483 880268

E-Mail

This is our new, dedicated email address.

ourookpservice@gmail.com

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CONTRIBUTORS PRAISES

A big thank you to the following, for helping to produce this monthly newsletter and assisting with the services.

Martin Jones, Rotherham, Editor

Caroline Williams, Newcastle, Communications Officer