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VISIONARY HORIZONS
- 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
Please enter “Newsletter” in the subject line
Or visit our website below and click “CONTACT US”
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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 2 of the OOKP newsletter, VISIONARY HORIZONS.
Apologies for this edition being a little late, but let’s call this the official launch of the OOKP Support Service. Why? Because we now have a LIVE website, a monthly newsletter and our very own WhatsApp group. That’s right, I’ve been a busy little beaver and got everything up and running live.
So, lets start with the website. I sent everyone an email saying it was up and running. I’m a little disheartened, as I asked for feedback (as it took over 5 weeks to produce) and only 3 people commented. Guys, this is for you and your families benefit. It can have anything you want on it. It gives you the information you asked for at the meeting. So please, visit
and please start using it and volunteering to assist with the services, because as good as I am, I can’t run all the services myself!!!
This brings us to our new “WhatsApp” group, specifically set up for the OOKP Support Service.
Unfortunately, I’ve never been a big fan of social media. Too many people telling me what they had for dinner (smile). However, Caroline has agreed to be the “Chief WhatsApp Communications Director.! Its easy to join. Just visit the website above. About half way down the home page is a “WhatsApp” link. Click the link, which takes you to the invite page. Click the join now button and there you are; an instant member of our dedicated group.
Please use this as much as possible. If organising a coffee morning or fund raising event (we need funds) just post it on WhatsApp and everyone knows. Also, send me an email, using the email address in the “INTRODUCTION” and I’ll put it on the home page. Again, simply scroll down the home page and you’ll find the “EVENTS” section. Click this button and it instantly tells you “WHATS ON” to help the OOKP community.
We can only become famous and respected by using the site and have volunteers help provide the services we’ve been requesting for years. This is your time. Get in touch and lets create a service we can be proud of.
If you remember, I published the first newsletter as a draft of what could be expected. Again, I asked for feedback, but only received 3 comments. These websites, newsletters and groups take a great deal of time creating and running. I listened and included the services you asked for, in the website and newsletter, but without feedback, interest and help, it will be short lived, as there’s simply not enough hours in the day for one person to run it. Follow the example of Caroline. PLEASE, OFFER YOUR HELP, IT’S ALL DONE FOR YOUR BENEFIT!!!
On a more positive note, we had our first enquiry for help. A client asked for help with finding holiday insurance. Using my Citizens Advice skills, I directed the client to helpful sites, and they were extremely happy with the service received. See guys, just giving a little help, not only puts a smile on the clients face, it put a smile on my face, knowing I helped someone. Its a great feeling, so lets all join in.
I think that’s all I have for this issue. I promise, I’ll now be offering a monthly newsletter and look forward to you giving suggestions of what you want covering.
Just a final note, feedback asked for more regarding my OOKP story, so, I’ll continue the story in the “COMMUNITY CORNER” section. If you want the story from the beginning, go and read the first section in Issue 1 and please, let me know if my life is boring (smile)
So, on with the newsletter
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PRE-OOKP SURGERY – BUILDING YOUR SUPPORT TEAM BEFORE SURGERY.
Preparing for OOKP surgery can sometimes feel overwhelming, but remember, you don’t have to face it alone. We’re always here to help. Creating a strong support team before surgery helps ease anxiety, achieve practical tasks easier, and give reassurance at every stage of your journey.
Think of your support team as three circles, which work together:
Family and Friends. Your close circle may not fully understand OOKP at first, but by sharing information with them, you help them become a valued part of the process. Ask a trusted family member to accompany you to appointments. This way, they can listen, take notes, and help remember details you might miss. Even simple things like preparing meals, helping organise your home so essential items are within easy reach, or offering a hand to guide you safely can make a huge difference.
Peer Support. Speaking with people who’ve already experienced OOKP surgery, provides emotional comfort which no medical leaflet or doctor’s explanation can match. Hearing someone describe in detail how they felt and managed feelings, before, during, and after the surgery can help you feel calmer and more prepared. Our peer network is here to provide that lived experience, reminding you that you are not alone.
Healthcare Team. Your surgeon, nurses, and counsellors are all part of your support system. Don’t be afraid to ask them to explain something more than once or to describe procedures step by step. Requesting clear verbal descriptions is your right, and it will help you feel more in control. More importantly, it reduces stress and anxiety, reducing any resistance to surgery
Remember, a support team doesn’t have to be large; it simply needs to be reliable, patient, and consist of people who can guide, reassure, and listen. When you build you team, following these simple rules, you will step into surgery with more strength and confidence, meaning recovery will be reduced to a minimum.
Ask your peers, they’ll all agree, they wished they’d have had this knowledge before undergoing surgery, as it would have made all the difference. Learn from their experience.
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MANAGING EMOTIONS & DOUBTS – DEALING WITH THE WAITING GAME.
One of the most challenging aspects of the OOKP journey is the waiting. The days, weeks, or even months between appointments and surgery can feel endless, leaving space for worry, stress and anxiety to grow. Many patients describe this stage as being harder than the operation itself.
Here’s some tried and tested strategies which can help:
Create a Routine. Without structure, waiting time often feels like wasted time. Build small routines into your day. Set times for meals, short walks, phone calls with friends, and quiet moments for rest. Routine provides stability when everything else feels uncertain. It also prepares you for the routines you’ll experience during your stay in hospital.
Set Daily Achievements. Choose one achievable task each day, like cooking a new meal, learning a simple technology skill, or reorganising a room so it’s easier to navigate. Each completed task builds confidence and helps the days feel purposeful. It also allows you to become familiar with a task, so it becomes a pre-learned habit, before your return home from surgery.
Stay Connected. Talking with others who understand can lift heavy emotions. Call a fellow OOKP member, join one of our virtual support groups, or even have a family chat about your hopes and worries. When emotions are shared, they often feel lighter. Use our website to access our peer support service. We’re here to impart our experience, to make your journey as relaxing as possible
Use Mindful Breathing. When your mind races with “what if” questions, pause. Inhale slowly through your nose for four seconds, hold for two seconds, then exhale gently through your mouth for six seconds. This simple rhythm signals your body to relax. Doing this for just a minute can quickly calm your nervous system.
Think of the waiting period as more than empty time. It’s your preparation period. By filling it with connections, small goals, and calming routines, you transform waiting into a stage of growth and resilience. Remember, there’s numerous exercises and routines we can access, aimed at improving well-being, but one of the most effective, is talking about your emotions and doubts. Whether to a professional, friend, family member or peer, talking about how you feel, almost instantly reduces anxieties.
Remember the saying
“A problem shared is a problem halved”
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POST-OOKP SURGERY- PROTECTING YOUR EYES AFTER SURGERY.
After OOKP surgery, your eyes need careful protection as they heal. While your surgical team will guide you, it helps to understand the “why” behind each instruction, so you can feel confident in your daily care.
Hand and Face Hygiene. Always wash your hands thoroughly with warm water and soap before touching your face or applying eye drops. It’s recommended, gently rubbing your palms together and between the fingers for around 1 minute, then drying with a clean soft towel. Clean hands mean fewer germs, which could harm your healing eye.
Protective Eyewear. Sunglasses are more than a comfort, they shield your eyes from dust, wind, and bright light, which can all irritate healing tissue. Choose glasses that wrap slightly around the sides for extra protection; and ensure they’re UVA and UVB certified, to protect your eyes from damaging ultra-violet rays. From experience, I find Amber lenses prevent the halo effect from bright items, seem to give sharper focus and enhance vision in limited light situations,. Ask your optician for a demonstration, you may be surprised with the improvement.
Daily Routines. Avoid bending too low, lifting heavy items, or straining, as this increases pressure in the eye. Instead of leaning down to retrieve something, ask for help, or use tools like a grabber stick. Light activities, like gentle walking around your home or garden, are safe and actually aid recovery.
Be Alert to Changes. Listen to your body. If your eye feels painful, if you sense unusual warmth, or if discharge increases, don’t ignore it. Contact your care team immediately. Quick reporting prevents small issues from becoming serious. Again, from experience, I didn’t take action fast enough and contracted an infection, which eventually damaged my retina, reducing the sight OOKP gave me. Your surgeon will always prefer you to take immediate action.
Healing is a gradual process, and protecting your eyes each day is an act of self-care. By following these steps consistently, you give your body the best chance to recover fully and protect your new vision.
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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 – A.I TOOLS FOR THE VISUALLY IMPAIRED.
Technology is becoming a powerful companion for those with visual impairment. Thanks to artificial intelligence (AI), everyday tasks are now more accessible than ever. These apps can read text aloud, describe objects, and even guide you through new environments.
Seeing AI (Apple & Android). Developed by Microsoft, this app acts as your eyes by describing the world around you. Point your phone’s camera at a document, and it reads the text out loud. Aim it at a product barcode, and it identifies the item. It can even describe people’s faces and their expressions. If you’re interested, visit the “VIDEO TUTORIALS” section of our website and there’s a video for beginners, showing how to use this app.
Envision AI (Apple & Android). Envision uses AI to read documents, recognise objects, and help with navigation. For example, you can point it at your mail, and it will read each letter clearly. It can also connect to special smart glasses for hands-free use. As above, there is an instruction video on our website.
Be My Eyes (Apple & Android). This app connects you to sighted volunteers around the world who can assist you through live video. Recently, they introduced “Be My AI,” an option where artificial intelligence gives instant descriptions without needing a volunteer. Imagine pointing your camera at a kitchen shelf and hearing a list of the items sitting there. It’s not science-fiction, it’s now a reality. See the instruction video on our website.
All these apps are free to download and use, with optional paid features for those who want more. For many clients; including myself; they become part of daily life, helping with shopping, cooking, reading, or even recognising friends. If you’ve not tried one yet, why not watch the relevant videos on our website (and they are growing on a weekly basis) then download one this week? It could open new doors to independence.
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WELLNESS CORNER – SIMPLE CHAIR EXERCISES FOR ALL AGES.
Movement is vital for keeping the body healthy and the mind positive, especially after surgery, when you may feel limited in what you can do. Chair-based exercises are gentle, safe, and suitable for almost everyone, no matter your age or ability. Best of all, they can be done right from your living room, in a matter of minutes.
Here’s a few guided examples you can try:
Seated Marching. Sit upright with both feet flat on the floor. Slowly lift your right knee a few inches, then lower it, then repeat with the left knee. Imagine you’re marching gently in place. Continue for one to two minutes. This boosts circulation and warms up your legs.
Arm Raises. Sit with your back supported. Slowly raise both arms out to the sides and upward, as if you’re reaching for the ceiling. Lower them back down. Repeat this 10 times. If lifting both arms is difficult, try one arm at a time. This improves strength and flexibility in the shoulders.
Ankle Rotations. Lift your right foot slightly off the floor. Rotate your ankle in a slow circle clockwise five times, then anticlockwise five times. Switch to the left foot. This eases stiffness, improves balance, and reduces swelling in the feet.
Neck Stretches. Sit tall and gently tilt your head to the right, bringing your ear towards your shoulder. Hold for five seconds, then return to the centre and repeat on the left. This relieves tension and improves posture.
Always move at your own pace. If you feel discomfort, stop and rest. Even a few minutes of gentle movement each day can increase energy, reduce stiffness, and lift your mood. Remember: small, steady steps lead to big improvements over time.
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COMMUNITY CORNER: YOUR VOICE, YOUR STORIES
In the limited feedback I received for the newsletter, one comment did actually ask me to continue with my Blind journey.
I’m happy to do this. I hope it gives you strength to see how losing sight, doesn’t mean losing your life. Also, how being strong, even when told you can’t do something, improves your confidence,; and shows others, whatever their position, they can learn from our experience. It’s for us to teach others, how we wish to be treated.
So, let’s continue my fairytale story (smile).
I had been told I would be blind, I couldn’t ride my dream machine motorbike and I had no job. Poor little Cinders I thought.
Not only this, but I lived in a bedsit, so would need to find elsewhere to live. What do they say, it doesn’t rain, but it pours. Still, I was processing all this and was strangely looking forward to the challenges, now I’d accepted being blind. Believe me, from experience, the sooner you accept your fate, the sooner you begin achieving and enjoying life.
Mummy bear said I could live with her. Slightly strange, seeing as I left home to pursue my wild child life at 17, but that was my accommodation sorted. Now, it was just sorting everything else.
As many of you know from meeting me, I’m always happy, smiling, laughing and joking. None of us know why we’re here, but people seem to get enjoyment and inspiration from me, so this must be the reason for my life.
So there I was, in a ward of injured people, all feeling sorry for themselves, and there was I, on a drip of Morpheme every 5 minutes to curb the pain, drifting in and out of consciousness, with 8 or 9 mates around my bed, laughing and joking as though in the tap room of a bar.
I was reprimanded by the nurses, but in secret, they loved the life around my bed. In the end, I was placed in a side ward, so other patients could heal. I apologise to those people, but will never apologise for my humour and strength of character.
Each day, around 5 nurses visited me during their break, just to laugh and joke with me. All said they’d never been around such a patient, who spread joy and sunshine. This sometimes backfired on the nurses, as I’ve never been good with operations, needing a couple of days recovery. I had 13 operations in 6 weeks,. The nurses would breeze in, looking for a laugh, then realise, I’d been in surgery and was not my jovial self for a couple of days. One nurse actually said to my mother, “we hate it when Martin’s had an operation, there’s no laughter on the ward and it feels so gloomy.”
I was in hospital around 4 months. My burns were healing and I become more familiar with being blind. However, there were a couple of strange things which happened. Firstly, when being led down the corridor to go for a smoke (told you I worked hard and played hard) I would walk holding the nurses elbow, then, suddenly, my brain would tell me there was a flight of stairs down, directly in front of me. I would stop and the nurse wondered why.
When I told the nurse, they said this happens a lot when patients instantly lose sight. Their mind becomes confused. Luckily, I worked through this, simply by stopping in the corridor, listening to the nurse saying their was nothing there, then slowly sliding my foot forward, until it was over what I thought was the first step. When my brain realised there were no stairs, they instantly disappeared and I set off walking again. It was strange, but it took me around 2 weeks concentration, to manage this hallucination. However, the nurses said, some people never conquer this, and it then turns into delirium, which is a horrible state of mind (yes, later in life I faced this and it was as difficult as dealing with blindness. BUT, I did it, because of my determination and motivation to be who I wanted to be, not what an illness could turn me into). It takes effort to achieve results, but they’re worth it. Remember this when facing obstacles.
So, I was laughing and joking with friends and I wanted to get out of hospital, back into the pub, where I could listen to music, take part in pop quizzes, laugh with friends and return to my “normal.”
I was still healing, but I wanted to get out and I was determined to make it happen. I had nurses taking me outside, even on their breaks, because we had a laugh and joke. I had interaction with doctors, learning what I could to heal faster and I had OT, trying to help me rehabilitate.
I say trying, because they asked me to try things I could already do. I wanted bigger and better challenges. They wanted to teach me to find my way to the toilet. I’d been doing this for weeks, and when I showed them, they were shocked.
One OT said I could not progress until she’d taught me to make a cup of tea, as this involved a number of processes. I said “I can already make a cup of tea,” she was a little patronising saying, “it’s not like before, I would need to learn new skills.” Well, me being a good little boy (NOT) decided to show her how much help I needed and why I should move forward. When she arrived the next day, I asked her to bring the kettle and some tea making facilities.
When she arrived,, she always had notes to write, before I began my learning sessions. While she wrote notes, I collected the kettle from the table, filled it from the tap in my room and found the tea making facilities. I boiled the kettle, poured my tea (as I have black tea no sugar) placed my finger in the cup and poured the boiling water until it reached my finger. I gave a short intake of breath and began pouring a cup for the OT. She saw my finger in the cup, but before she could stop me, I filled the cup to my finger, removed the tea bag, asked if she wanted sugar and milk (which she did) put 2 spoons of sugar in, flicked the milk bottle until the liquid in the cup hit my finger again and said “now you have a cup of tea, made by me, so can we please move on to learning something useful.
Strangely enough, she never held me back from learning again. I learnt to read the MOON alphabet., which helped me label things and I enrolled with RNIB talking books, so I could read the autobiographies of comedians, which was a love of mine.
I tried Braille, but could never master it. As I possessed builders hands, I had little sensitivity to feel the dots. When I did finally master Braille (or so I thought) I read to the teacher, the sentence, I think it was “Janet and John walked along the road. (a 30 year old builder reading Janet and John books (smile). When I finally read the sentence, I was so pleased with myself. My teacher said well done, but maybe I should stick to listening to audio books, as while concentrating and feeling the raised dots, I’d been so heavy handed, I’d actually press the dots back into the page and it was now flat again, meaning nobody could read Braille after me. I stopped reading, to help other develop (smile)
This was my encounter with learning new skills and dealing with people who say I can’t do things. I knew what I could do, and what I wanted to do,. I needed challenges and what was on offer was not challenging enough, so I had to make this clear.
I include this section to encourage you to learn. Whether you’re successful or not is irrelevant, it’s the fact you’re challenging yourself. By doing this, you’ll have the confidence to try anything, meaning you become more confident and competent. Remember, it’s not that we can’t do it, it’s that we do it a different way to others, and its just discovering this different way.
In next months saga, you’ll see how I continued my learning, progressing from using a guide cane, to instantly being taken to the white cane and getting out of hospital for afternoons. Bet you can’t guess what I did during these afternoons? No? Well you’ll just have to wait and read the next thrilling episode.
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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
We now have everything you asked for. Our own website, packed with information and services. Our own newsletter, offering news and developments relevant to everyone. Our own WhatsApp group, to chat and ask questions we want answers to.
BUT, and it’s a big BUT, we must use these facilities. At our July meeting, we agreed we need to communicate. Some asked for more meetings to get things running. We must respect, people can’t just travel to London, have a meeting for a couple of hours, then return and not talk until the next meeting. This is why the WhatsApp group was created. To chat,, video conference, video message, whatever you want to do. Just send a message and you’ll receive a reply.
Ideally, we should be asking questions and giving answers at least once a week on the WhatsApp group. Think of it like your Facebook. How many times a day do you use Facebook or other social media?
Then we need to be using our group WhatsApp the same
And how many times do you Google a question? Then why not first look for answers on our website. The information will be more reliable and much more informative. If it’s not there, let me know and I’ll include it.
This brings me to making the website more accessible. I’ve had a look and we can get the memorable name:
Which is much easier to remember, than the current google-site address. However, the address above must be bought.
It can be purchased for 1 year at £4, then it would be £19 per year after this. Or, we could obtain the address for 5 years, which would cost £39
So, I’m asking everyone who attended the meeting, all who asked to be placed on the mailing list and all who requested the WhatsApp group, can you please begin fundraising, in the easiest manner, to first raise the £40 we need to get our website personalised. Once we have this, we can begin advertising, and people respect a .come name, but often think a google-site address is for hobbies.
Again, this is YOUR support service, which YOU requested, so please, help make it respectable.
So, let’s have more chat on WhatsApp; more use of the website; with fundraising and volunteering; then we can have a great group.
I’ve been trying to fund raise myself (along with other tasks needed for getting this up and running) sending requests to computer suppliers and phone providers, to ask for donations of phones and phone plans, to get a dedicated phone advice service arranged. No joy yet, but I’ll continue trying.
If you could also assist by asking your phone suppliers and local businesses, as it’s my personal mobile number we’re currently using, which helps us get started, but is not helpful to my personal life.
OK, I may be having a moan, but when we were together, everyone was so enthusiastic; and now; there seems to be very little interest. Am I wasting my time? Are people not interested? Were people just moaning for moaning sake?
Yes, a little controversial, but if it gets people talking, I’m prepared to put my head on the line.
PLEASE, PLEASE, PLEASE, BEGIN USING THIS SERVICE MORE, BEGIN CHATTING MORE OR IT WILL BE LOST FOREVER, AND UNLIKELY TO BE PURSUED AGAIN, BECAUSE OF NO ACTUAL INTEREST.
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Website
www.ookpsupport.org
Phone
07483 880268
Mail
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
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