Issue 7

- 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 7 of the OOKP newsletter, VISIONARY HORIZONS.

I need to offer my apologies for this short editors update, but I unfortunately lost my mother a couple of weeks ago and my time has been spent preparing the funeral.

Just one thing I must tell you all, is the fantastic fundraising our member, Irene Worgan managed to achieve. She held a coffee morning with her church group and raised £130 to help our support service.

I’m sure you’ll want to thank Irene and her efforts, like I’ve done in a personal thank you email to her.

So, let’s all take inspiration from Irene and hold our own fundraising events. Just something as simple as a coffee morning, can produce amazing results.

Thanks Irene, your efforts are much appreciated.

So, hopefully I’ll be back on track for next month and able to bring you more up to date with everything, once I’ve dealt with my recent loss

Take care and I’ll be back next month.

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PRE-OOKP SURGERY – UNDERSTANDING CONSENT & PATIENT RIGHTS.

Before OOKP surgery, you’ll be asked to give informed consent. For many patients, especially those who cannot access written documents easily, the consent process can feel confusing or rushed. Understanding your rights is essential, for you to feel confident and respected throughout your care.

Informed consent means more than just signing a form — it means truly understanding what you’re agreeing to. To help with your understanding, here’s what this involves:

• Clear Verbal Explanation. You have the right to have the procedure explained verbally, in plain language, without medical jargon. This includes what will happen, why it’s being done, and what alternatives exist. To obtain this service, simply ask your consultant or medical team for a more appropriate explanation, in plain English terminology. Remember, your medical team may not be aware of your level of understanding, so need informing of this.

• Opportunity to Ask Questions. You’re entitled to ask as many questions as you need, and to receive answers in a way that makes sense to you. This may include asking the same question more than once. Never be afraid to inform your medical team you don’t understand. They’ll find an alternative way to give you the information you require. If there are any problems, please contact us and we’ll assist with you obtaining understanding.

• Understanding Risks and Benefits. Doctors should explain both the potential benefits and the possible risks, including rare complications, so you can make an informed decision. Only when you have the complete picture, can you make a decision which is appropriate to you. Remember, it‘s always your choice whether you choose to accept or decline the offer of surgery.

• Time to Decide. Consent should never feel rushed. Take time to think, discuss the situation with family or peers, and return with further questions. If you have doubts, our members are here to assist. They’ve already made this decision, so can give real life insight as to what may or may not occur, but the final decision will always be yours.

• Right to Withdraw. You can withdraw consent at any point before surgery if you change your mind. This doesn’t affect your right to future care. Talk with others, take your time and make the decision based on your circumstances. Remember, there’s no right and wrong answers, just a decision you feel comfortable with.

Consent is about partnership, not pressure. When you understand your rights and feel heard, you enter surgery feeling empowered rather than overwhelmed. This reduces anxiety and improves wellbeing, producing a more positive effect on your recovery from surgery.

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MANAGING EMOTIONS & DOUBTS – FEAR OF THE UNKNOWN – WHEN YOU DON’T KNOW WHAT COMES NEXT.

One of the most emotionally challenging aspects of the OOKP journey is not knowing what lies ahead. Even with explanations, there are moments when the future feels unclear, and this uncertainty can trigger anxiety. We’ve all been there. It’s a totally natural reaction, so never be afraid to obtain the experience of others.

Here’s some simple ways to cope when the unknown feels unsettling:

• Focus on the Next Step Only. Instead of trying to understand the entire journey at once, focus only on the next appointment or decision. Reducing the timeline reduces emotional pressure. By breaking procedures into super simple and manageable steps, once you achieve a task,you feel almost compelled to progress, as you now believe the tasks are easy to achieve..

• Accept Uncertainty as Normal. Uncertainty doesn’t mean danger. It simply means the outcome has not yet revealed itself. Many patients find peace, when they stop fighting the unknown and instead learn to coexist with it. There’s many avenues involved with OOKP surgery and it often takes a little time choosing the most appropriate path for you, but be assured, your medical team are highly skilled and experienced in this process and only interested in producing the best results for you.

• Create Predictability Elsewhere. When the medical future feels uncertain, create predictability in daily life through routines, familiar sounds, and regular check-ins with trusted people. Read our other newsletters, to learn more routines our members have used to deal with their uncertainties. You’ll hopefully find one which helps you.

• Use Peer Perspective. Speaking with someone further along the journey, often reveals that what feels frightening now, becomes manageable later. We understand, which is why we offer so many services on our website.Please use our experience to help you. You don’t have to invent the wheel, we already have a vast array of wheels available, which fit every type of situation. Use us, to help you.

• Grounding Techniques. Physical grounding, such as focusing on holding a warm mug, or placing your feet firmly on the floor, can pull attention away from future worries and back into the present moment. We often only need a familiar routine, to pull us out of a spiraling situation. Check our website to see what helped others. It may just help you.

Not knowing what comes next is uncomfortable, but it doesn’t mean you’re unprepared. Strength often grows in uncertainty, even when you don’t realise it at the time. Knowledge creates experience; and experience eliminates fear. Begin gaining the knowledge by asking our members for help. This is why our support service was created, to let others be more confident with the OOKP journey, by knowing which tasks to embrace and which to avoid.

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POST-OOKP SURGERY- UNDERSTANDING EMOTIONAL CHANGES AFTER SURGERY.

After OOKP surgery, many patients expect their physical recovery to be the main challenge. What often surprises them are the emotional changes that follow. Relief, hope, frustration, sadness, or even emotional numbness can all appear — sometimes in quick succession.

These emotional shifts are common and understandable. Here’s why they happen and how to manage them

:

• Emotional Release. Surgery represents the end of a long period of anticipation. Once it’s over, emotions that were held back may surface. Don’t ignore these emotions, address them and use our members to give suggestions on how to embrace them, so they can be transformed from negative to positive experiences.

• Adjustment Period. Be aware, your mind and body are adapting to change. Emotional fluctuations are part of that adjustment, not a sign of something wrong. Your body will determine the amount of emotion it can deal with. While finding this level, use our website and newsletters to discover techniques to help with this process. By adopting such techniques, it means you reach your bodies coping level much faster. Really, what do you have to lose. Our suggestions have helped others, why should they not help you, if given the opportunity!

• Expectation vs Reality. Recovery is rarely linear. Good days and difficult days may alternate, which can be emotionally confusing. When experiencing good days, try something different, to see if it helps. When experiencing difficult days, revert to your tried and tested routines. Not only does it build your coping tool box, it creates a stronger and more knowledgable you, who better understands how your body works.

• Talk It Out. Sharing how you feel with peers or counsellors can normalise these experiences and prevent isolation. Remember, you don’t have to struggle alone. Our support service was created, to allow us all to help each other and make the OOKP journey as comfortable as possible.

• Give Yourself Time. Emotional recovery often takes longer than physical healing. Patience with yourself is essential. Keep a journal and each week or month, look back at your progress. It’ll indicate what is working and what needs more attention. If you need assistance with this, contact us and we’ll be only too willing to help.

Emotional changes after surgery shouldn’t be seen as weakness — they’re part of the healing process. Acknowledging them allows you to process, adapt, and move forward with resilience. It creates a stronger you, able to deal with similar situations in the future, much easier.

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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 – ACCESSIBILITY SETTINGS YOU MAY NOT KNOW EXIST.

Many smartphones, tablets, and computers already include powerful accessibility features — but many users are unaware they exist. Learning just a few hidden settings can dramatically improve usability without downloading new apps. This allows you to achieve more, with the tech you have, without being lured into buying new phones or computers.

Here’s some lesser-known but highly useful features you may wish to try:

• Screen Reader Speed Control. Adjusting the speech speed on Apples Voiceover, Androids Talkback or Windows NVDA can make listening more comfortable and less tiring. Remember, faster is not always better — clarity matters. To find out how to do this, check out the tutorial video section of our website. It gives you a complete beginners master class for each of these apps

• Custom Gestures. Many devices allow you to assign specific actions to simple gestures, reducing the number of steps needed to complete tasks. For example, you can set the volume up key to end calls, making it easier than locating the end call icon, or place the phone face down to reject a call. Again, many of these can be found on our beginners tutorial videos on our website, or email us if you need a gesture to perform a specific function. Why not take a look at the gestures section in your phones settings, it may just give you the solution you need.
  
  

• Audio Focus Mode. This reduces background sounds so speech is clearer, especially useful in busy environments. You can also set your phone to use noise cancelling when listening to the phone, so the call is much easier to understand. Often, these adjustments can be found in the settings gestures or sound and vibration section of your phone.

• Spoken Notifications. Your phone can read incoming messages or caller names aloud, reducing the need to check the screen. There’s many gestures which can be adapted to speech. One of the main adaptions members use is speech typing. Just tap this button and you can dictate your message, rather than type it. The amount of time it saves is amazing. We have tutorial videos on our website. Why not take a look.

• Sound Feedback for Touch. Subtle sounds or vibrations can confirm actions, helping you navigate confidently. This can be adjusted for the type and volume of sound; while the vibration can be adjusted to different types and intensity. Once you become familiar with your set up, you can easily distinguish between a text message and WhatsApp message; an hourly chime or a key press. There’s a small learning curve, but the feedback is amazing.

If you’re unsure how to find these settings, ask a support worker, family member, or peer to explore them with you. Often, a few small adjustments can transform how technology feels to use. We also have beginner friendly video tutorials on our website, produced by visually imp[aired people, so they know the importance of describing the procedures, so you can easily access these features yourself. Why not take a look.

If you still have problems, use the contact us section of the website and ask a question and we’ll send a set of instructions which will allow you to use these features.

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WELLNESS CORNER – MANAGING STRESS WITHOUT AVOIDING LIFE.

Stress is a natural response to medical journeys, but many people cope by withdrawing — avoiding activities, conversations, or situations that feel overwhelming. While understandable, avoidance can quietly increase your stress and shrink your world. This leads to a spiraling life of negativity.

By addressing the stress and finding coping strategies, you can climb out of the black hole and realise there’s help out there and a whole world of activities to explore. Here’s some healthier ways to manage stress while staying engaged with life:

• Stress Is a Signal, Not an Enemy. Stress often signals that something needs attention. Listening to it helps you respond wisely rather than retreat. By finding techniques to deal with the stress, it can be quickly eliminated in the future, so avoiding further damage to your health.

• Gradual Exposure. Instead of avoiding stressful situations entirely, approach them in small, manageable steps. As discussed in previous newsletter articles, find the cause, decide the desired outcome, then create the simplest steps to take you from cause to outcome. It may need some small adjustments along the way, but by using this method, you become stronger when dealing with stress in the future, so reducing the damage it may cause.

• Use Recovery Time Intentionally. Stress requires recovery. Build calming activities into your day before stress accumulates. Take a look at this section of previous and future editions of the newsletter, to discover helpful methods and techniques. Also, if you need more bespoke assistance, contact us and one of our members will help. Remember, they’ve been on this journey and have experience which can help.

• Stay Connected. Human connection reduces stress more effectively than isolation. Even short conversations help regulate emotions. This was the thinking behind our WhatsApp group. A place where you can ask a question, or express a feeling; and our members will reply with assistance and encouragement, to show, someone is there beside you. Remember, you don’t have to travel this journey alone.

• Self-Compassion Matters. Speak to yourself as you would to a friend. Kind inner dialogue reduces stress far more than self-criticism. By encouraging yourself, using the techniques we offer and connecting with others, you invite positive progress and reject negative consequence. It takes a little effort, but once you discover the joy it brings, you’ll want to embrace these actions more and more.

Managing stress doesn’t mean avoiding life — it means learning how to stay present while caring for yourself. This balance supports long-term emotional strength. It leads to a more fruitful outcome and attracts positive energy, all aspects of life we strive for. If you require further assistance, contact us and we’ll be only too happy to help.

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COMMUNITY CORNER: YOUR VOICE, YOUR STORIES

Did you enjoy my Brazilian adventures in last months newsletter? Yes! Then let’s continue. So, I’d landed in Sao Paulo and my senses were working overtime. Why? Because it seemed there was only me and my friend speaking English.

I thought I’d understand something, having practised intensely for weeks, but they talked so fast. Obviously, they didn’t know I was English, just by looking at me, so they had no idea I couldn’t understand them. I just hoped it would get better when I was with the family.

It was around 10.30pm when we finally arrived at the family house. All the sisters and brothers were there, including the mother of the family. I introduced myself in Portuguese and felt a sigh of relief, when the mother hugged me and praised me for speaking in her language. She still spoke fast, but not as fast as the others. What a relief I thought. I will be able to be understood. I gave her a little gift I’d brought, as a thank you for inviting me into her family and that was the start of an exceptional friendship.

It proved to me, very few situations are as scary as first thought. By embracing the situation, with the skills you have, you make better progress than expected. I teach people not to let their emotions over-rule their life, and this was an ideal example of how true this process is.

The house was a little small for so many people, but it was warm and welcoming. As we settled down, I helped with daily chores and all the family were amazingly generous. As Jonathan and his wife were vegan, there were many rice and vegetable dishes, but there was also a large selection of meat dishes prepared during my stay. One of my favourites was a mixture of usually discarded pork items, like cheeks, neck, shins etc, but once left to simmer for 6 hours, while we did the tourist bit, they fell off the bone and mixed with rice, tasted amazing, on our return.

The middle sister, who was around my age, had a stall in the local market. She wanted to introduce me to her market friends. She spoke a little English, but that was it. So, this was my test. Could I hold conversations with Brazilians who spoke no English. I think you know me by now, I jumped at the opportunity. I held my own, and with a little help from the sister, managed to converse for a full day, almost entirely in Portuguese.

We were about 3 weeks into the trip and one of the brothers had a pet Chameleon which needed its scheduled vet visit. The brother asked if I wanted to join him, then he would take me to the Sao Paulo F1 motor racing track. How could I resist. I’ve always loved lizards and snakes; and my favourite sport is Formula 1.

The brother asked if the lizard could sit on my head while in the car. Strange! Not really! As heat rises, the hottest part of our body is the head, and as lizards are cold blooded animals, they need the warmth. That’s right. Just ask Professor Jones (smile)

So, I was being driven around the streets of Sao Paulo, with a lizard on my head, unable to understand any conversations, oh, and unable to see a thing. What a holiday experience.

We had the lizard treated, then it was my turn. No, not to get treated, but to get my treat, if you know what I mean. We pulled up in the motor racing stadium and the smells and sounds were unbelievable. I’ve visited a number of the European race circuits, but never thought I’d have the chance to visit the South American circuits. Yes, you’re right, I’m getting giddy.

For some reason, they wouldn’t let me drive a racing kart around the circuit. I don’t know why,! As long as my cane hits the kerbs, I’m sure I can keep the car on the road (smile) but they just have no trust. It was then, the brother asked if I’d like to be taken around the circuit by a test driver.

Now, again, let me think about this very carefully. YES, yes, yes, a lifetime ambition, ready to be achieved. I’ll not bore you with the details, but I was flying and the smile on my face, was the biggest it had ever been in my whole life. As we returned home, Jonathan and his wife were sat on the garden wall and said, “I take it you’ve been on a fantastic journey.” Those of you who know me, know I’m never lost for words, but this day I was.

My conversations were becoming more complex and to be honest, me and the sister I told you about, were becoming very close. OK, okay, you know what I mean.

We decided to take a few of the family to the coast, as a thank you for our accommodation. We visited Port Seguru in the north, I’m told it translates to “the first port,” where the first discoverers of Brazil landed. It was amazing. Really peaceful and wide open sandy beaches, with coconut and palm trees on the beach, each with a hammock strung between them. I spent many hours, just laying in a hammock, discussing things with the sister and dreaming of how good life could be.

It was while having breakfast, I realised how much my Portuguese had developed. While having a strong cup of coffee, known as a Cafe Zinio, I listened to the sounds of the breakfast room. It was then, I realised I was listening to the conversation of the people on the next table. I could understand every word. Because the people were speaking slow, in comparison to those in Sao Paulo, I understood every word.

I whispered to the sister, who was also listening to the conversation, “I need to tell you something outside.” We went in to the garden for a cigarette and she saw the smile on my face. I said, “I understood every word of the conversation.” I began repeating all the words and the sister was amazed with how I’d followed the conversation, and how I could also recall it back to her in extreme detail. She and I were so pleased with my progress, we kissed. That was also an amazing experience, but that’s another story! (Smile)

We returned to the family house and remained there for the last week. It had been an adventure which was out of this world. Unexpected, scary, things I’d never been close to experiencing before, but a trip I would never forget for the rest of my life. It was over 20 years ago and I can still remember every memory in minute detail.

It was now time to return home. I had some serious decisions to make. I said me and the sister had grown close, she actually asked if I would like to return and create a life with me and her together. (Yes, it was a shock to me as well)

I was still under the hospital and was in line for further surgery, to implant stem cells in my eye, to see if sight could be returned. Was this more important than travelling to another continent, who as far as I was aware, did not have the technology to deal with my condition. But, I had grown very close to the sister. What decision was I to make?

After returning home, it played on my mind for quite a while. However, I had my qualification to finish, I had life changing surgery to face, I had to find employment. Life is such a tangled web. However, I took my time, followed my usual process of discovering the problem, creating a goal and devising a list to reach that goal.

So, what was my decision?

You’ll have to wait until next month to find out. Just like all the best psychological best sellers, always leave them on a knife edge and wanting more.

So, until next month, take care and hopefully learn from the story of my life. There are many techniques you can learn, to deal with life and the ups and downs it throws our way, but never dismiss an opportunity to gain an unforgettable experience from life.

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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

Once again, due to my recent loss, I’ll keep this short and sweet. I’d like to thank everyone who sent their messages of support in this difficult time.

Hopefully, I’ll be back on track next month and back to my usual chatty self. Please follow the guidance of Irene and consider a fundraising event. Even the simple ones produce amazing results. Always remember, the money raised is to give the services you have asked for. We can only help others, if we help ourselves.

So, until next month, take care, use what life throws at us to become stronger and always support your fellow human beings, you never know when you will need a little support from them yourself.

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

Irene Worgan, Wales, Top fundraiser