OOKP 13 2

- 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

* Contributors Praises

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EDITORS UPDATE

Hi Guys.

Welcome to issue 13 of the OOKP newsletter, VISIONARY HORIZONS.

I hope everyone is enjoying the hot weather and remaining hydrated and safe. It appears there are many wild fires at the moment, so please make sure there are no combustable items left in your gardens, as these can easily catch fire from hot ashes drifting in the air from nearby fires. Let’s all be mindful and remain safe.

There is not much activity at the moment. I have had no suggestions to help me complete my qualification, so I hope that is because you are all enjoying lovely summer holidays and you will contact me when you return.

If this is the case, why not send us a write-up of your adventures. It may just help others if they are planning to visit in the future.

We had a couple of members having issues with their appointments. It appears, Moorfields have changed the appointment system and they can only book them a maximum of 6 weeks in advance.

I have written to Mr Perez and he is discussing a resolution with other managers in Moorfields. So, please let me know if you have any further problems and I will continue to pursue this.

I only found out about this by chance on WA. This is what the support service was founded for, to help members when they are facing problems. However, I can only resolve issues if I am told about them.

We need to communicate more if there is a problem. If you have an issue, about anything, you must email me. If we fail to communicate, then we lose the services we have fought so hard to get in place. This is why I asked everyone if they could post at least once a month on WA, to keep communication going.

You know the drill and I am not going to keep on about this, but as mentioned before, if we don’t use it, we lose it. This means all the hard work done with the website will be for nothing. Please consider this and use the services provided and above all, communicate with each other, including me.

So, lets take a look at what’s on offer this month. Also, I am running out of topics to cover, so please, give some suggestions you want covering, or, the newsletter will be reduced to 2 or 3 pages, which I don’t want to do.

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PRE-OOKP SURGERY – BUILDING YOUR PERSONAL SUPPORT NETWORK BEFORE YOU NEED IT!

One of the most common things we hear from patients preparing for OOKP surgery is that they spend a great deal of time thinking about the operation itself, but much less time thinking about the weeks and months around it.

This is completely understandable. Surgery naturally becomes the focus. It’s the big event on the horizon. However, many patients who’ve already travelled this road often tell us that one of the most valuable things they did was build a support network before they actually needed it.

When people hear the phrase "support network", they often imagine family members helping with practical tasks. While that’s certainly part of it, support is much broader than that.

For example, many patients find it helpful to identify one person who can accompany them to important appointments. Medical consultations often contain a large amount of information, and it’s surprisingly easy to miss details when anxiety levels are high. Having another person listening alongside you can provide reassurance and help you remember information later.

Others find it useful to identify people who can help with practical day-to-day tasks during recovery. This may be collecting prescriptions, helping with shopping, preparing meals, or simply checking in regularly. The key is not necessarily having many people available. It’s knowing who you can call and what they may be able to help with.

Emotional support is equally important. Many patients describe periods where they simply wanted somebody who would listen without immediately trying to solve problems. Consider who in your life provides that type of support. Sometimes it’s a family member, sometimes a friend, and sometimes another patient who has experienced similar challenges. Remember, this is exactly why the OOKP Support Service was created.

Technology can also become part of your support network. Calendar reminders, shared family calendars, medication reminders and voice assistants can all reduce pressure during stressful periods. Check out our video tutorial section of the website for useful assistance.

Perhaps the most important lesson shared by experienced patients is this: build support before you feel desperate for it. Asking for help is often easier when it’s planned calmly rather than during a period of crisis or exhaustion.

By the time surgery arrives, knowing that support is already in place can remove a significant amount of anxiety and allow you to focus more fully on your recovery.

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MANAGING EMOTIONS & DOUBTS – COPING WITH “WHAT IF” THINKING!

Many people preparing for OOKP surgery describe a constant stream of "what if?" thoughts.

* What if the surgery does not work?

* What if recovery is harder than expected?

* What if I’m making the wrong decision?

These thoughts can be exhausting because they rarely lead to answers. Instead, they often create new questions.

One technique many patients find helpful is recognising the difference between productive thinking and repetitive thinking. Productive thinking usually leads to an action. For example, if you’re worried about transport to appointments, you might arrange travel plans in advance. Repetitive thinking often circles the same concern without producing a solution. It may feel active, but it usually increases anxiety rather than reducing it.

Some patients find it helpful to set aside a specific "worry time" each day. This sounds unusual at first, but it can be remarkably effective. Rather than fighting anxious thoughts throughout the day, you give yourself permission to think about them at a chosen time. Many people discover that concerns feel less overwhelming when they are contained rather than constantly present.

Another approach involves focusing on facts rather than predictions. Facts are usually available today. Predictions involve trying to guess the future. The mind often treats both as equally important, but they are very different things.

Talking openly with trusted people can also help. When worries remain inside our own heads, they often become larger. Speaking them aloud frequently makes them feel more manageable and realistic.

Most importantly, remember that uncertainty does not automatically mean danger. OOKP is a journey that naturally contains unknowns. Learning to live alongside uncertainty is often part of the process.

Many patients later report that the things they spent the most time worrying about never actually happened, while the challenges they did face were often easier to manage than they had imagined. If you need help, simply contact us by email or WA and one of our members will be there.

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POST-OOKP SURGERY- REDISCOVERING HOBBIES & INTERESTS!

One of the less talked about parts of recovery is the process of reconnecting with hobbies, interests and activities that bring enjoyment.

During periods of illness, treatment and recovery, life can become dominated by appointments, medication schedules and medical conversations. Many people gradually realise that they have stopped doing things purely for pleasure.

The return to hobbies does not usually happen overnight. It often begins with curiosity.

Audiobooks are a common example. Many people start with books they’ve previously enjoyed, finding comfort in familiar stories and voices. Others discover entirely new genres they’ve never explored before.

Podcasts have also become increasingly popular. Whether the topic is sport, history, gardening, technology or comedy, there is now an enormous range of content available through accessible apps and smart speakers.

Music can provide another valuable connection. Some people create playlists linked to positive memories, while others enjoy discovering new artists and styles.

Creative hobbies should not be overlooked either. Audio-based learning has opened doors to subjects such as creative writing, languages, genealogy and music appreciation. Many people are surprised by how much can be learned through spoken content alone.

The goal is not productivity. It’s enjoyment.

One member once described hobbies as "a reminder that life is bigger than medical appointments." That observation resonates strongly with many people.

Recovery is not only about physical healing. It’s also about reconnecting with the parts of yourself that existed before surgery became the centre of attention.

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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 – THE GROWING ROLE OF AI POWERED VISUAL ASSISTANCE!

Artificial intelligence is developing rapidly, and some of the most exciting changes are occurring in tools designed to assist blind and visually impaired people.

Many readers will already be familiar with applications that can identify objects, read printed text and describe photographs. However, newer systems are beginning to provide much richer information than was possible only a few years ago.

Instead of simply saying "person detected", some tools can now provide more detailed descriptions of clothing, surroundings and activities. This can help users build a more complete understanding of their environment.

AI-powered image description is also improving communication. For example, receiving a photograph from a family member no longer has to mean waiting for someone else to explain it. Increasingly, software can provide immediate descriptions that allow greater independence.

Navigation is another area seeing significant progress. Some systems are beginning to combine GPS information, artificial intelligence and computer vision to provide more contextual guidance when travelling.

Of course, it’s important to remember, these technologies are still developing. Descriptions are not always perfect, and users should continue exercising caution in unfamiliar environments. Nevertheless, the direction of travel is encouraging.

Many people who’ve used these newer systems describe a growing sense of independence, particularly when carrying out tasks that previously required assistance from another person.

Technology will never replace human support, but it can increasingly help people make independent choices and access information on their own terms. . If you’re interested in what’s available, search our Tech tutorial video library for more information.

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WELLNESS CORNER – THE IMPORTANCE OF CELEBRATING SMALL WINS!

When people think about progress, they often imagine major milestones.

* Receiving a surgery date.

* Completing a procedure.

* Achieving a significant improvement.

While these moments are important, they are relatively rare. Most of life happens in the space between major milestones.

Many patients become so focused on reaching the next big goal that they overlook the smaller achievements happening every week.

* Perhaps you attended an appointment you were dreading.

* Perhaps you asked a difficult question you had been avoiding.

* Perhaps you successfully learned a new piece of technology.

* Perhaps you simply got through a difficult week.

These achievements matter.

Recognising small wins is not about pretending everything is positive. It’s about acknowledging effort and progress wherever they occur.

Some people keep a voice diary and record one positive achievement each day. Others share successes with family members or support groups. Some simply take a few moments before bed to reflect on what went well. Remember, the method matters less than the habit.

Over time, recognising small wins can change how we view ourselves. Instead of seeing only what remains to be done, we begin noticing how much we have already achieved. And during a long journey such as OOKP, that shift in perspective can make a remarkable difference.

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COMMUNITY CORNER: YOUR VOICE, YOUR STORIES

As mentioned in last months newsletter, we now have the story of Karen, from the point of view of a carer for someone with OOKP. I think it adds a whole new perspective to the OOKP journey and I think it will certainly give an alternative view .

So, over to you Karen

My name is Karen, I am the twin sister of Caroline Williams (non-identiical), who underwent OOKP in 2019/2020. This is my story from a sibling/family perspective.

Both my older brother, Ian, (who sadly passed away in 2013) and Caroline, were born with a rare genetic eye problem – Peters Anomaly.

This had never been seen in the family prior to Ian and Caroline, it started with them. I was fortunate, in that I was born with perfect eyesight.

Our parents brought us up to be extremely independent and no favouritism was given to either Ian or Caroline, just because they had problems with their eyes. We were brought up in a loving home, with loving parents, who allowed us to experience our early life , as children should, encouraging us to do the things we wanted to do and were interested in.

Prior to Caroline having to have the OOKP procedure, she went through many, many eye operations and these experiences obviously came with highs and lows, depending on the situation. Caroline and I were and remain, extremely close and so have a very close and trusting relationship. I was somebody that Caroline could rely on, to listen and give advice or opinions if asked.

When it came to having the OOKP, this was a huge decision and one that we looked in to, thought about and talked about a lot. This was very important, not only to Caroline, but to me and the family at large. This was because this was something that meant an awful lot to us all, in what we hoped and expected out of it, but also keeping in mind, the potential pit-falls and how this would affect us if things did not work out.

The decision to have the OOKP, was ultimately Caroline’s in the end, but I know that she took our feelings on it on board also and so it inevitably became a decision that Caroline made, that would involve myself and the rest of the family, in life changing aspects of our daily lives.

I have willingly and gladly been there to help Caroline getting to and from hospital admissions and appointments, which is a big commitment. I was there when she had both stage s of her OOKP, when she was upset, worried, happy, sad, all the emotions, not only does Caroline experience, but myself also, as well as the family. I was able to help and guide Caroline’s decision to apply for a guide dog (David), after the OOKP, which was initially successful, became less so, after a retinal detachment.

Caroline remains fiercely independent, but still leans on me for support, advice and encouragement. I am proud to be able to support her in every aspect of her life that I can, even though sometimes, I can be both emotionally and physically drained by the struggles she faces at times, which obviously hits me sometimes harder than her.

I enthusiastically feel compelled to let people know about the OOK procedure and people with visual impairment in general, as I know from first-hand experience, how life changing a successful operation can be, but also, able to have empathy for those who have not had such a success story.

What I have learnt, is that whatever way the operation goes, life does not have to end for either the person going through it, or the close family members. By providing love, support, encouragement and understanding, both sides can end up having a positive experience and learn so much about life’s experience and people in general.

I encourage all patients and families, to be as open and honest with each other as possible and stay close and grounded. For those who perhaps don’t have a close family member, perhaps a close friend would be a great support and also, the other people, who have gone through the OOKP themselves and are able to give vital encouragement and advice.

I wish you all the very best for the future.

Karen

Caroline’s Sister

Karen, can I take this opportunity to thank you for taking the time to give an account of the role you play in the life of someone undergoing OOKP. It has certainly given us all an insight of how OOKP does not just affect the patient, it affects those people around the patient. However, your story also shows how circumstances can be overcome, with understanding and working together.

So, if anyone else wishes to send in their story, whether it be from a patient or the family, friends or carers around the patient, then it will certainly be helpful to all members of our support service.

It only takes a few minutes to write, but could be the piece of the puzzle someone has been searching for, which changes their world. So, please think about it carefully.

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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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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, Founder

Caroline Williams, Newcastle, Communications Officer

Karen, Newcastle, Carers story

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