- 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 9 of the OOKP newsletter, VISIONARY HORIZONS.

I'm back from my major holiday and have finally beat the jet lag. So, I suppose it's back to entertaining you wonderful people with some more interesting articles and stories .

I found it really interesting reading Irenes story of her OOKP journey in last months newsletter. I'm asking everyone to put pen to paper and offer an account of their OOKP journey, or even a story about an interesting event in their life.

This is fore a few reasons. It allows me to concentrate on improving the website and newsletter, without having to spend time writing my own epic story. It shows other members different types of journey, whether good or bad, allowing them to have a sense of reality when choosing the OOKP surgery. It makes it more interesting hearing from different members and it shows authorities like the charity commission, we are all integrating with the service, making it more appealling when being considered for becoming a registered charity.

Please help me and the service by sending your stories and interacting, so we can transform it from a tiny hobbyist helpline, into a renound and respected, fully supportive service.

Come on guys, lets have your stories and suggestions

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PRE-OOKP SURGERY – UNDERSTANDING ASSESSMENTS & PRE-SURGERY TESTING.

Before any surgery, including OOKP surgery, patients often attend several assessments and tests. These appointments can feel repetitive or unclear if their purpose is not fully explained. Understanding why these assessments take place can help reduce anxiety and reinforce your confidence in the process.

It’s important to understand, pre-surgery assessments exist to ensure your OOKP surgery is safe, appropriate, and tailored to you as an individual. They’re not hurdles, but safeguards, ensuring your consultant is aware of every aspect of your health, so procedures and processes can be introduced, to give your OOKP the best chance possible of being successful..

Common elements of pre-surgery assessment include:

• General Health Review. Doctors may review your overall health, including medical history and medications. This helps identify anything that might affect surgery or recovery. It allows your consultant to be prepared for all eventualities, therefore, being truthful is essential. You’re not being quizzed for wrong doing, you’re being protected from errors.

• Eye-Specific Tests. These assess the condition of your eyes and surrounding tissue. If you can’t see the tests being conducted, or have anxieties, ask staff to describe each step clearly. Your medical team want you to be as relaxed as possible, so answering questions and describing procedures allows this to happen.

• Oral and Dental Assessment. Because OOKP involves oral tissue, your mouth and teeth must be examined to ensure suitability and long-term stability. Consider your OOKP surgery as two combined procedures; one for the tooth lens holder; and one for this to be inserted into the eye. By understanding the procedure, you become more relaxed and accepting of the process.

• Psychological Readiness. Some patients are asked about emotional wellbeing, expectations, and coping strategies. This is to support mental health; to determine if additional support is required; not to judge readiness. The more support a patient receives, the more relaxed they become, allowing the surgery to have maximum effect. Work with the team, when giving your answers, they only want the best for you.

• Baseline Measurements. These create a reference point so doctors can monitor changes after surgery. By knowing where you begin, allows your consultant to inform you of your progress. Remember, these measurements are your gateway to assessing your recovery.
  
  

Assessments may feel lengthy, but they’re signs of thorough, careful planning. Each test contributes to making your surgery and recovery as safe and effective as possible. The more detailed the information your consultant possesses, the more prepared they are to ensure your OOKP surgery has long term success.

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MANAGING EMOTIONS & DOUBTS – FEELING OVERWHELMED BY INFORMATION.

During the OOKP journey, patients often receive a large amount of information in a short time. Appointments, explanations, instructions, and decisions can quickly become overwhelming, especially when fatigue or anxiety is present.

It’s important to understand, feeling overwhelmed doesn’t mean you’re failing to cope — it means you’re human, who requires assistance to organise the information being given. Here’s some simple ways to manage information overload:

• Ask for Information in Stages.  You don’t need to understand everything at once. It’s okay to say, “That’s enough for today.” Only you know your limitations, therefore, only you can make the decision to tell others when you need time to process the information received.

• Request Verbal Summaries. Ask staff to summarise key points verbally at the end of appointments. This can help reinforce understanding. If you’re  conversant with accessing emails, members say, asking your medical team to send summaries by email, means you can access information at a time convenient to you. This is a great way to prevent information overload and acts as a quick reference facility.

• Use Audio Notes. Recording voice notes; either during or after appointments; can help you process information later, at your own pace. This can easily be achieved with apps on your phone. Take a look at our tutorial videos on our website, for such apps and how to use them.

• Repeat Back What You’ve Heard. Saying information aloud helps confirm understanding and allows staff to correct misunderstandings gently. If you have any misunderstandings, ask your medical team to explain the information again, in a more accessible format. Remember, your team are used to explaining the process, so never be afraid to ask.

• Lean on Trusted People. Having a family member, friend, or peer help you reflect on information can reduce mental load. It also allows you to discuss the situation, addressing any fears the information raises.

Information is meant to support you, not overwhelm you. Taking control of how and when you receive it helps restore a sense of calm and clarity. Small, bite-size chunks of information are retained much easier than reams of medical terminology. Ensure the information you receive is in a format you’re familiar with, in an amount you feel appropriate and your anxiety will be dramatically reduced.

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POST-OOKP SURGERY- REBUILDING DAILY ROUTINES.

After surgery, your daily routines may feel disrupted. Tasks that were once automatic may require new approaches, different timing, or additional support. They may even require specific equipment to perform the tasks involved. Rebuilding routines is a key step in regaining stability and confidence and bringing you back to some form of “normality.”

Here’s how to approach routine rebuilding gently and effectively:

• Start Small. Focus on one part of the day first, like morning or evening routines, before trying to structure the whole day. As discussed in previous articles, dissecting routines into easily achievable steps, means progress is made quicker, with stress and frustration being kept to a minimum.

• Consistency Over Complexity. Simple, repeatable routines are more sustainable than complicated schedules. Use the KISS principle – Keep It Super Simple. Ensuring routines are kept as simple as possible, means they’re easy to remember, easy to achieve and preserve energy, which is necessary, after surgery.

• Use Cues and Anchors. Pair activities with sounds, alarms, or familiar actions to help guide transitions through the day. This ensures you don’t forget an important routine, which may affect your recovery. This can easily be achieved using your phones reminder, or other available apps. Check the tutorial videos on our website for more help using such apps.

• Adjust Expectations. Your routines may look and feel different than before — that doesn’t make them less valid or successful. It simply means, using different methods to achieve the results required, so the tasks included in your new routine, achieve the results you desire. Remember, the end justifies the means.

• Review and Adapt. Be aware, what works one month may need adjustment the next. This may be due to a change in your recovery, or finding a more accessible adaptation to your routine. Be accepting of the fact, flexibility supports long-term success.

Routines provide structure when life feels uncertain. Rebuilding them gradually helps restore a sense of normality and control during recovery. By using the knowledge and experience of others, you can adapt routine so they become easier to achieve or produce more acceptable results. We’re all here to help our members, so if you have a routine, share it with others, it may be just what they’re searching for.

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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 – KEEPING YOUR PERSONAL INFORMATION SAFE ONLINE.

As more communication and services move online, protecting personal information becomes increasingly important. For visually impaired users, unclear prompts or unfamiliar websites and email messages can increase your vulnerability, leading to mistakes being made and scammers taking your money.

Here are some practical ways to stay safe online:

• Be Cautious with Unexpected Messages.  Treat all unsolicited texts, emails, or calls asking for personal information with suspicion, even if they sound official. If a caller asks you to download an app, or make a payment, or reveal your PIN, instantly hang up the phone. If anxious, call the company directly and ask your questions.

• Never Make Payments To Strangers. If you receive a call, saying it’s your bank and they ask for payment. HANG UP. Banks NEVER use this tactic. If in doubt, hang up the phone, then if possible, call your bank from another phone. Never call back immediately if using the same phone, as the scammers keep the line open, so your call is directed back to them. If you’re suspicious, call 159 (in the UK) and state your banks name. This number takes you direct to the fraud team of your bank and can’t be used by scammers. Report the incident and the fraud team will help

• Never Click An Email Link. If you receive an email, never click a link in the email. They’re often the scammers website, created to take your details. Close the email, find the link from a letter, invoice or document and contact the company that way. Remember the saying – IF IT’S A MESSAGE OUT OF THE BLUE, THEY’RE TRYING TO SCAM YOU.

• Never Reveal PIN Numbers Or Codes. Scammers will try their hardest to obtain your PIN, as this allows them to gain access to your account. PIN is Personal Identification Number and it is called PERSONAL for a reason. They’ll also ask for your OTP (one time password) companies now send, to check for legitimate payment. Remember, only scammers ask for this. No other company or bank request this. It’s yours, so guard it. Remember, these codes are like your house keys. Would you give your house keys to a stranger? No! So don’t do it with your PIN and access codes.

• Use Voice Feedback Carefully. Listen very closely; multiple times if necessary; to what your device reads aloud before confirming actions or sharing details. If you have the slightest doubt, STOP.  Hang up the phone or close the message and ask a trusted friend or family member for help. If still in doubt, report it to the police,  using 101 (in the UK) then contact the company involved, using the number found on a document of authority, to confirm if the details are correct. Always take your time. Check every detail. Remember, rushing can lose you thousands.

• Avoid Rushing. Scammers often create urgency. Taking time reduces risk. Emails may indicate you risk fines, bailiffs, court etc if you don’t pay immediately. This is not how such services work. ~They must contact you by official letter first. So, if you’ve not received a letter, it’s a scam, so don’t answer any further calls from the number and delete or block emails from the scammers. Again, IF IT’S OUT OF THE BLUE, THEY’RE TRYING TO SCAM YOU.

• Use Strong, Memorable Passwords. Consider using a password manager with voice accessibility, or create phrases rather than single words. Using your name, birthday or pets name in a password is not secure. Did you know, scammers can decipher such passwords in less than 4 minutes. Use a password manager; many phones and computers have them already added to your account. Also, use phrases you can remember, for passwords, as these are more difficult to guess. Check our website for more information on this growing concern.

• Ask Before Acting. If unsure, check with a trusted person or support worker before responding to unfamiliar requests. Simply close the email or hang up the phone and check. If they return the call, ignore it. If a company is legitimate, they’ll allow time to consider your options after sending a message or returning a call.

Online safety is about awareness, not fear. With careful habits and support, technology can remain a safe and empowering tool. Remember, never be rushed. Never reveal passwords or PIN numbers. If you feel rushed or the slightest bit uneasy, stop the call or close the email and get help. The more cautious you are, the safer you’ll be and the safer your money.

We’ll address this more on our website, as it’s important and becoming more difficult to detect and avoid.

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WELLNESS CORNER – MANAGING CHANGE WITHOUT LOSING YOUR SENSE OF SELF.

Medical journeys can sometimes feel as though they redefine who you are. Appointments, treatments, and recovery can dominate daily life, leaving you wondering where they fit into the picture.

Maintaining a sense of self is vital for emotional wellbeing. Here’s some tips on how to stay grounded in who you are:

• Separate Identity from Illness. You are not your condition or your surgery. These are experiences you are having, not definitions of who you are.

• Continue Meaningful Activities. Music, conversation, learning, humour, or creativity help maintain identity beyond medical roles. These are what define you, not your condition.

• Tell Your Story in Your Own Words. You decide how and when to talk about your journey. Ownership of your story restores your feeling of control.

• Notice What Hasn’t Changed. Values, personality, and relationships often remain intact even during major change. Hold on to these characteristics, as these are what make you, YOU.

• Give Yourself Credit. Adapting to change requires strength. Acknowledging this reinforces self-respect, allowing you to progress and develop further.

Change may shape your journey, but it will never erase who you are, providing you acknowledge the changes. Holding onto your identity supports resilience, dignity, and long-term well-being. Be proud of what you are and what you’ve achieved. Remember, you must earn respect from others, and this begins by respecting yourself.

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COMMUNITY CORNER: YOUR VOICE, YOUR STORIES

I hope you will allow me to take a month off from sharing my story with you. Having just returned from an epic holiday, which I will share with you at a later date, and having some personal issues many of you know about, I just need time to reset myself.

I will be back next month with my story. I promise. However in the mean time, lets have more members sending in their story, just like Irene, so we can learn from each other.

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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

While I was away, I noticed we had no communication, either by email or on our WhatsApp page.

It has taken time and effort creating these, and it was from your requestes for such communication channels, they have been included in our service.

Therefore, can I propose - if you become a member of our WhatsApp group, you promise to submit at least 1 message per month.

Firstly, it keeps us communicating with others. It helps new members gain the confidence to speak with other members, who may be able to help with any questions they have. Finally, it also allows me to monitor conversations to see what articles would be helpful in the newsletter or on the website. It also shows Charity commission we are interactive, and it would be worth them granting us charitable status, so we can apply for big sponsership and donations, to allow us to have meetings, away days, Christmas parties, give loans for equipment etc etc etc.

It may only seem like a small thing to you, like, Oh, I will post a message next week, but having no communication for 2 months (it was difficult for me having limited internet connection) is not a good sign to others, we are an interactive and thriving community, worthy of investment.

Please, visit the website weekly - to improve our Google ranking - and communicate as often as possible - at least 1 post per month, to show others we are the service we claim to be.

I hope you understand my plea and look forward to hearing from you more, beginning this month.

Take care and I will speak to you next month.

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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