- 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 10 of the OOKP newsletter, VISIONARY HORIZONS.

Can you believe it’s almost 1 year since we began this service. Where does the time go (and no, it’s not due to my age) (smile). We’ve come a long way and achieved a lot, but there’s still much to do.

So, there’s a couple of things we need to concentrate on. I’ve asked Mr Perez if we can have another meeting. It lets us all meet up and discuss what more we want and allows those who didn’t attend the first meeting, to join in. Mr Perez said this is a good idea and we are trying to arrange it. I’ll keep you informed.

We’re looking to become a registered charity, but we need to keep communicating. I asked everyone involved with the WhatsApp group, to post at least one message a month. We’ve still had little communication. Come on guys. Please start using this service. It’s essential, to show those in charge, we are communicating, like our website states. I can’t do everything, so I’m relying on you to make this happen.

Next, I’ve had a request from our member in Switzerland, Chloe, who asked if we could produce the website and newsletters in French. Well Chloe, I have a very simple trick to achieve this. I’ll include it in the closing section of this newsletter. This is a great question, now we have international readers, so, I think I’ll put the instructions on the websites home-page, so everyone can read our information in their native language. What do people think? Is it a good idea? Please let me know.

Finally, I’ve had a great response from my request for members stories of their OOKP journey. There’s also a story from a members sister, giving an account of how it affects them. I’ll publish these in upcoming issues, as I think they will be helpful to old and new members. Excellent work, but again, can those considering this, please email their stories. We’re here to help and this really is a major way we can answer members questions of what the OOKP journey involves.

Let’s get communicating in May. Those of you who communicate to friends on Facebook and the like, just add a post in our WhatsApp group and you never know, your comment may provide the answer one of our members has been searching for.

So, I hope you enjoy the topics in this months issue and remember, like Chloe, if you have a problem or a suggestion, just drop me a message and I’ll do my best to find an answer.

Let’s carry on reading.

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PRE-OOKP SURGERY – UNDERSTANDING SECOND OPINIONS & SHARED DECISIONS.

Before OOKP surgery, patients may hear different viewpoints from different professionals, or may wonder whether it’s acceptable to seek reassurance through a second opinion. This article explains what second opinions are, why they can be helpful, and how shared decision-making ensures your voice remains central in your care.

Seeking a second opinion isn’t about distrusting your consultant — it’s about providing you with confidence and clarity. In complex procedures such as OOKP, it’s entirely appropriate to want reassurance that all options have been carefully considered. Your medical team are aware of this and have no problems with you requesting a second opinion. In fact, they often respect your choice to protect your health.

Here’s some key points to help you understand the second opinion procedure:

• Second Opinions Are a Patients Right. You’re entitled to request another professional perspective without fear of judgment or negative consequences. Simply express your request to your consultant and they’ll arrange for this to be given.

• They Offer Clarity, Not Conflict. In most cases, second opinions confirm existing plans and help patients feel more secure in their decisions. They give reassurance, the procedure you’re about to undertake, is appropriate for you.

• Shared Decision-Making Matters. Your values, priorities, and concerns should actively shape the treatment plan, alongside clinical expertise. By working as a team, your surgery and recovery have a much better chance of success, as you enter the procedure more relaxed and confident.

• Questions Are Encouraged. Asking “Why this option?” or “What are the alternatives?” strengthens your understanding and trust. Your consultant appreciates this and will strive to answer every question you ask.

• Confidence Supports Recovery. Feeling informed and involved before surgery often leads to greater emotional readiness afterwards. Your medical team wish to eliminate any negativity, which is why they understand the need for second opinions.

Understanding your role in decision-making, helps you move forward feeling respected, informed, and empowered rather than uncertain or passive. This leads to a more responsive you, meaning recovery is generally cut to a minimum. If you have any doubts regarding your OOKP surgery, ask questions. You’ll find, your medical team are only too willing to provide you with answers.

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MANAGING EMOTIONS & DOUBTS – WHEN MOTIVATION COMES & GOES.

At different stages of the OOKP journey, motivation naturally rises and falls. Some days you may feel proactive and hopeful, while other days even small tasks feel heavy and impossible. We understand your situation, which is why this section explores why fluctuating motivation is normal and offers ways to work with it rather than against it.

You must understand, loss of motivation isn’t a sign of weakness or giving up — it’s often a sign of emotional fatigue. Recognising this can reduce self-criticism and restore balance, allowing you to continue your development and recovery.

Helpful ways to manage motivation changes include:

• Normalising Low-Energy Days. Motivation isn’t constant. Allowing low days prevents burnout. By accepting you can’t run on full power constantly, you allow yourself to take a short break, revive your emotions, then continue your progress.

• Separate Motivation from Discipline. Remember, gentle routines can continue even when motivation is low.  By continuing simple routines, it encourages discipline, allowing you to return to your motivation routines as soon as possible.

• Use Short-Term Goals. Focusing on what’s manageable today, reduces pressure and overwhelming thoughts. If you find motivation difficult, use the techniques described earlier, splitting goals into more achievable tasks. For example, if your goal has 3 steps, divide each task into two easier tasks. This reduces stress, increases motivation and improves progress.

• Reconnect with Purpose. Reminding yourself why you’re doing something can reignite gentle momentum. This is why we suggest writing your goals and tasks in a journal, then revisiting them regularly. This increases motivation and concentrates focus.

• Rest Without Guilt. Rest is a necessary and productive part of recovery, as it restores emotional and mental energy. Without rest, your body has no time to recover and regenerate. Ensure you factor rest into your goals and tasks.

Motivation doesn’t need to be forced. When treated with compassion and respect, it often returns naturally in its own time. By using the suggestions provided, you’ll find your motivation returns stronger, allowing you to achieve more. Remember, motivate, then rest, motivate, then rest. Once you apply this method, you should encounter fewer issues in the future.

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POST-OOKP SURGERY- NAVIGATING SOCIAL SITUATIONS AFTER SURGERY.

After your OOKP surgery, returning to social situations can feel unfamiliar and difficult. Friends, family, or acquaintances may not know what to say, and you may feel unsure how much to share. It takes time and preperation returning to interaction with others. Here, we explore some common social challenges and offer guidance on navigating interactions with confidence and comfort.

You must recognise, social adjustment is an individual and gradual process. There’s no “right” way to handle conversations and situations — only what feels right for you. Take your time and ensure you’re prepared for possible topics which may arise during interactions.

Some common experiences and helpful approaches include:

• Managing Questions. Remember, you’re not obligated to explain details unless you want to. Simple responses are enough. It’s your choice what you wish to divulge. Informing people you’re not ready to discuss a matter, can quickly prevent a situation becoming too emotional.

• Setting Boundaries. It’s okay to say when you’re tired orneed to step away. Only interact to a point where you feel comfortable. If you feel anxious, emotional or upset in any way, stop. There’s always another day. In time you’ll become comfortable with how much you wish to divulge.

• Rebuilding Confidence.  Social confidence often returns gradually through repeated, manageable interactions. Remember, you’ve encountered major trauma and it takes time to return to the social level you previously attained. Slow and steady wins respect; and the confidence to progress.

• Choosing Safe People First. Always begin your social interaction journey with trusted individuals before moving to wider social settings. This establishes what issues you’re comfortable discussing and which to avoid. Using this social circle as your “test group” you’ll advance at a pace suitable for your emotions.

• Allowing Awkwardness. Awkward moments are normal and usually pass quicker than you expect. They also test whether you’re ready to deal with the issue concerned, or whether you wish to take more time. Again, it’s okay saying you’re not ready to discuss this aspect of the conversation. It’s your story, you choose the pace.

It’s true, social connection supports emotional recovery. However, by moving at your own pace, you can rebuild relationships without pressure or expectation. Generally, people respect your situation. If they’re not willing to travel your journey at your pace, it may be worth reassessing interaction with these people until you feel stronger.

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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 – USING AUDIO-BASED INFORMATION TO REDUCE SCREEN STRAIN.

As recovery continues, many patients rely heavily on audio rather than visual information. This section explains how using audio-based tools intentionally can reduce fatigue, support independence, and make daily tasks feel more manageable.

Audio tools are not a compromise — they’re often the most efficient and comfortable option.

Examples of helpful audio-based use include:

• Audio News and Books. Allows you to stay informed or entertained without visual effort. Smartphones have the ability to access news, which can be read allowed using Apples voiceover or Androids talkback services. Audio books can be obtained from various sources (Kindle, Guttenberg, RNIB etc) and can be heard using the Audify app. Visit the tutorial videos section of our website, for an in-depth look at how to use such accessible apps.

• Spoken Navigation and Directions. This reduces mental load when travelling or planning routes. Google maps can be set to speak directions when travelling, making it ideal to use. Also, What Three Words can provide verbal directions once activated in the settings. Again, we have video tutorials showing how to achieve this on our website.

• Voice Notes and Dictation. These allow you to capture thoughts, reminders, or messages quickly and efficiently. There’s a number of dictation apps available for Apple and Android. Search the Google or Apple store for one which suits your needs. If you require a simple note-taker, Google Gemini can be used. This gives reminders, takes notes and answers your questions. Try searching YouTube for a note-taker which suits your needs, or visit our websites tutorial videos for some suggested apps and how to use them.

• Audio Instructions and Guides. Following instructions without needing to look at a screen allows you to learn how to use equipment correctly. To do this, enter the make and model of the equipment into a Google search, followed by “instruction manual download.” It will offer various sites where the instruction manual can be saved to your smartphone or computer, then simply use voiceover or Talkback to listen on your phone, or NVDA to listen on your computer. If you have problems with this, contact us and we’ll try finding the instruction manual for you.

• Customising Audio Speed and Tone. Adjusting settings to reduce listening fatigue is essential. Begin slowly, then increase the speed as you become familiar with the screen reader. These adjustments can easily be made in the settings section of each app. Again, watch the tutorial videos on our website, which give clear instructions on how to do this for various screen readers on different platforms..

Choosing audio assistance options protects your energy and supports focus, especially during periods of healing and adjustment. It also allows you to complete tasks in everyday life, which generally need sight. For example, our website and these newsletters have all been produced using an audio screen reader.

As previously mentioned, being visually impaired doesn’t mean you can’t complete tasks, it just means you have to use a different method to sighted people. If you’ve any questions, contact us and one of our members will be only too willing to give suggestions of how a task can be completed.

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WELLNESS CORNER – LEARNING TO BE PATIENT WITH YOURSELF.

Patience with oneself can be one of the hardest skills to develop during a long medical journey. This section focuses on why self-patience matters, how impatience often arises, and practical ways to cultivate a kinder internal dialogue.

Impatience is often rooted in wanting life to move forward — not in failure or weakness. You must understand, to move forward, you require knowledge and experience. You may not currently possess these skills, therefore, learning must occur. Once you learn the necessary skills, you’ll find you begin eliminating impatience and progress becomes the norm.

Some tips to practise self-patience include:

• Recognising Unrealistic Expectations. Healing and adaptation rarely follow strict timelines. Therefore, dissect your goals into more manageable tasks. By making tasks achievable, you increase your knowledge, confidence and abilities, allowing progress to occur more rapidly, so reducing impatience.

• Replacing Harsh Self-Talk. Noticing and softening critical inner language is essential. If you criticise, you limit development; if you praise, you increase encouragement and productivity. Talk to yourself as you would speak to others. Be positive and encouraging, so your mind becomes powerful and productive.

• Marking Progress Gently. Progress can exist even when change feels slow. Keep an audio journal of your achievements, regardless of how small these are. Review your journal on a regular basis and you’ll discover how much progress you’ve made. By recognising your achievements, you begin eliminating impatience.

• Allowing Rest Days. It’s essential to understand, recovery must include pauses, not just effort. By pausing, we can reassess our position on the OOKP journey. This allows adjustments to be made, reducing impatience and encouraging progress. Remember the phrase – “More haste, less speed.” By trying to continually move forward, we actually become blind to the problems. Take a break and address the problems.

• Remembering the Bigger Picture. Remember, the point you’re at now, is part of a longer journey, not the whole story. Allow yourself to assess, learn and adapt. Once you achieve this, moving forward becomes much easier, so reducing impatience.

Self-patience creates emotional space for healing. When you treat yourself with understanding, respect and praise, resilience grows quietly and sustainably. You provide encouragement to your mind, allowing it to learn and develop, resulting in progress. When you realise you’re moving forward, patience increases, creating a powerful feeling of achievement. Never be too harsh with yourself, it only produces negative actions.

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COMMUNITY CORNER: YOUR VOICE, YOUR STORIES

Have you missed me? Have you been waiting for the next episode of my story. If you remember, I’d returned home from my trip to Brazil and was torn between completing my qualifications or returning to Brazil to live an unbelievable life.

As I’m sure you can guess, as I’m here writing this newsletter, I decided to stay in the UK. Why? Well, I’ll tell you. You’re all just so impatient! (smile).

When I returned to the UK, I completed my qualification, meaning I could now teach adults in a subject I was competent with. With my connections to the blind community, having been Chairperson of the local blind society, I was approached to deliver blind awareness training to front line staff of the local council. They were on a training campaign and many front line staff said they felt lost when confronted by visually impaired people and needed training.

I carefully considered the prospects and knew, this could be massive. Not only could it include training in my local town, it could make me famous. Delivering my training to other towns and cities. I could become international. I could travel the world, delivering my training. OK, OK, you’re right, I’m getting giddy again. So, lets see how the story really plays out.

In those days, there was a great deal of money to be made, delivering training to local councils. For example, I secured my first training and was earning almost £400 for each training day,. It did help me make the decision to stay here, earn some savings, then I could return to Brazil a few years later and continue my adventures, but with a pocket full of cash. Wouldn’t you?

So, I began arranging training days, offering help to everyone from librarians to receptionists, traffic wardens to social workers. The opportunities were amazing and I was loving it.

I used my recently obtained teaching skills and created an interactive and what I thought was an enjoyable training day, something I would loved to have attended if I was in the front line jobs. I created a quiz, which answered all the questions people had asked me since I became blind. I created a little exercise which gave participants a sense of what it was like to be visually impaired. I used specially prepared glasses to give attendees a feeling of what different eye conditions felt like. Then, the finale, I made every student, guide me through a number of obstacles, including stairs.

Maybe not a good idea. I had to manage 2 flights of stairs, often 30 times during a training session. Believe me, I soon put a stop to this and limited student numbers to 12 per session. It certainly helped reduce my heart rate at the end of training, but there was a method to my madness. It meant I had to deliver more sessions, which meant more money. Yes, I can be hired for your book keeping needs. Well, maybe not. It may get us both in trouble (smile).

It was during one of these sessions, my whole life changed?

Should I stop here and leave you hanging until next month, to find out what it was. Shall I? Shall I? No, I’m not that cruel, I think I’ve left you in the dark for long enough.

So, on one particular day, I was waiting outside for my students to arrive, having a cigarette and going through my days schedule. Remember, I was completely blind, wearing dark glasses and holding a white cane. (Don’t worry, I knew my way around the building(.

It was not the building, it was a particular student who made the day.

I was approached by a woman, who asked “Is this the right place for the blind awareness training?” Now as many of you know, I love laughing at people who ask obvious questions. So I turned to the woman and said, “Maybe a guy, wearing dark glasses and carrying a white cane answers your question.” She simply asked, “Are you the trainer.” I again answered, “A guy with dark glasses and a white cane usually gives the answer you’re looking for.” I could have really gone to town with my sarcasm, but she just made me laugh so much, I actually felt sorry for her, but in a good way. And yes, I do have a heart and not a swinging brick, as I can hear some of you saying (smile).

She also saw the funny side and began laughing with me. It almost made me late for my own training session, we were laughing that much.

Throughout the day, whenever on a break, me and Gill (yes I was a gentleman and asked her name) were chatting and laughing together. Gill had the same sense of humour as me (poor woman) and the day passed so quickly.

As it was a Friday and the day before my birthday, I usually ended the day with a pint (yes, only one. Well, one at a time,) so I thought it only polite to ask Gill if she wanted to join me, to celebrate and continue the joy we were having.

Gill actually declined my offer. I know, how could she? But she said, she was in an unhappy relationship, but wouldn’t go out with another man, until she resolved this relationship, but it wouldn’t be long before this happened, then if we met again, she’d love to. I respected her moral standards and knew, I’d see her again, as the local council say staff should update their training every 6 months, so I felt I had a chance of meeting her again.

I asked Gill, as I was blind, how would I know it was her if I met her again. How would I recognize her. She said “You’ll always be able to recognise me, as I am a 6ft blonde, with a great personality and a winning smile.”

This really made me smile. A woman who is great fun, has my sense of humour, has admirable moral standards and who almost guaranteed a chance of a date when we met again.

So, can you guess what happened? Well, this is where I leave you hanging. You’ll have to wait until next month for the next installment. I know, I’m such a tease.

So, make sure you tune in to the next thrilling adventur of a blind guys story.

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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

It seems my request for more use of our WA group has been noted, as you’re beginning to communicate more. Please, keep your conversations going, this aspect of our service is vital, so we can gain more funding.

Also, as mentioned in the Editors notes at the top of this newsletter, we’ve had a request from a Swiss member, can we produce the website in French. As we’re now gathering international interest in our service, I think this request is important and we present the information in a format accessible to all nationalities.

After research, I found a simple method you can use to achieve this, converting the information into your chosen language. So, here are the steps to use.

Open the website you want to translate in Google, for example, www.ookpsupport.org

1.  Right-click anywhere on the page (not on an image or link).

2.  In the drop down box, click “Translate to English” (or this may appear as your default language).

3.  The page will instantly refresh in the translated version.

4.  Repeat for each webpage you access.

That’s it. You can now read the website in your default language, or in any language you wish to choose and this can be used on almost every webpage, not just our site.

I hope this is helpful for you and I hope this helps you Chloe, to better understand the information our web site provides.

If anyone has any further suggestions on how we can improve our website, please do not just discuss these between yourselves, please contact me and I will do my best to make it happen. I can only improve and create the site you want, by being given feedback and suggestions.

Well, that’s it for this month. I hope the newsletter was of interest. So, please keep communicating on our WA group and please keep your suggestions flooding in.

Take care and speak soon.

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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

Chloe Kolly, member feedback

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