Page: My Sight Notts loss story (case studies)

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Case Studies

At My Sight Notts we’re privileged to work with some extraordinary people, here are just a few of their stories about themselves and sight loss.

Rex and Helen’s Story

Rex:

“I first noticed there was something wrong with my sight back in 2004; it was like permanently looking through a fog, so I went to my optician who referred me to a specialist. I knew things were serious when the doctor told me I had to stop driving there and then – that was the first piece of my independence gone.

“I was eventually diagnosed with Retinitis Pigmentosa and my sight slowly deteriorated over eighteen months until I could no longer watch TV and now I can’t see anything at all.

“My wife of more than 60 years became my eyes and together we muddled along. She read to me and guided me when we went out, I missed doing many of the things I used to do for myself but together we coped.

“But in July 2018 she was diagnosed with dementia and after falling out of bed and fracturing her thigh, she was taken into residential care. Living on my own in an remote farmhouse now feels isolating and lonely.  The most difficult thing is that I struggle to go out alone.  To get on the bus I have to cross a main road, which doesn’t have a safe place to cross. I miss the simple things like getting out of the house for some fresh air, getting some exercise and chatting to people. Sometimes because I’m in 24 hour darkness I fall asleep during the early evening and then I can’t sleep at night, which just makes me feel awful.

“When My Sight Newark opened, I asked someone to take me and I met other people in the same boat as me.  I enjoy all the activities, but I also wanted some exercise and to get out of the house more than once a fortnight for a walk in the fresh air, so they suggested I have a My Guide and that’s when I was introduced to Helen.

“I usually meet Helen once a week and we go out for short walks in the local area. I benefit from the exercise and it helps me stay fit. I also enjoy chatting to people that we meet in the Cafe, the staff there are getting to know me now and they chat to me when we go in, which is grand! When you’re disabled people tend to avoid you.  I think they don’t know what to expect so they don’t engage in conversation and as I can’t see them it makes starting a conversation difficult. Helen helps me to get talking to people in the cafe, and in the park, which is exactly what I need.

“Helen and I hit it off from the start, she’s really chatty and will talk to anybody! I really look forward to her visits, it gets me out from behind my four walls, gives me exercise and the chance to chat to people. Helen helps me start conversations, which is so important. I don’t want to sit at home with no-one to talk to, I want to get out and meet people because talking is one thing you can still do when you’re blind. I really appreciate what Helen does for me, it makes such a difference. ”

Helen:

“Like many women my age, I’ve spent much of my adult life caring for my children, but as they’ve flown the nest I needed to do something to fill my days.

“I haven’t worked outside the home for years and as getting an interesting job without experience proved impossible, I decided to volunteer instead. I saw the My Guide role on the CVS website and thought it looked interesting..

“Once I applied I was contacted very quickly by My Sight Notts, which I think is important for people considering volunteering, if organisations leave you hanging around for weeks it makes you think they can’t need you that much!

“The training was informative and interesting, we wore special glasses that simulate different eye conditions and practiced guiding others and being guided ourselves, which really makes you think about what it must be like to lose your sight.

“I really enjoy the time I sped with Rex, it’s something I look forward to each week. He’s easy to talk to and we get on well.

“Being a My Guide volunteer is really worthwhile, it also gets me out of the house and I enjoy walking and talking to someone I wouldn’t normally meet. It’s good to know that a small effort on my part makes a great deal of difference to Rex.”

Atiqa and Carri’s story

Atiqa aged 25 from Bramcote lost her sight as a teenager due to an accident. She met her My Guide volunteer Carri in 2014. The two get on so well they’ve even been on holiday together!

Atiqa said:

“I’m quite a confident and outgoing person who wants to enjoy life like most other young people in their 20s.

“Losing my sight as a teenager was devastating, but as I began to adjust I found the limitations sight loss imposed on my quality of life really frustrating. Like most young women, I want to be independent from my parents and to go out and do my own thing, but because I can’t see I struggle to be as independent as I’d like.

“My Sight Notts suggested I might benefit from a My Guide volunteer and I decided to give it a try.

“I was quite keen to be partnered with a volunteer who was a similar age to me and had similar interests to myself, so I was delighted when they suggested Carri, who was roughly my age.

“We got on well from the beginning, Carri comes once or twice a week to read my mail and she began by guiding me to my local park so I could get out of the house. This quickly developed into going swimming and visiting the gym together and we soon discovered we got on fantastically!

“Carri makes me laugh a lot; we love to tease each other. She lifts my spirits and makes me smile!

“I would probably say that I’m the more confident of the two, I’ve taught Carri Origami and I was the one who suggested we go on holiday together, but it was important to me that we chose the destination together and we both agreed that we wanted to go to Barcelona.

“Going swimming and travelling aboard without my parents would have been unthinkable before I met Carri. She’s enabled me to be more independent from my family and enjoy things other young people take for granted.”

Carri said:

“I saw the My Guide volunteer role on a local charity website and thought it looked interesting and worthwhile. It was a flexible role, which I could fit around my work. The training was informative and practical, which really appealed to me. It was well thought out and made good use of my time.

“I was quite nervous when I first met Atiqa, because I really wanted to make it work, plus I knew Atiqa needed to put a lot of trust in me as her sighted guide, but I needn’t have worried, it was clear fairly early on we were going to get on well.

“People often think that the volunteer does all the giving in partnerships like ours, but that’s not true! Atiqa is very confident and eager to try new things, whereas I’m quite a cautious person. She’s encouraged me to try all sorts of things, like flying abroad and learning some Urdu! We’re well matched and have lots of fun together.

Carole’s story

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For the first time in my life I’m being encouraged to have a go! 

“I’ve lived with cerebral palsy since birth, but being diagnosed with glaucoma was frightening.

“All my life people have told me I can’t do things because I’m clumsy and because I might hurt myself. Using scissors and paint brushes were always a ‘no no’ because of my cerebral palsy, so I never had the opportunity to try art and to see what I could do.

“When I took up art and choir at My Sight Notts I felt for the first time in my life that I was being encouraged to have a go. I was in a safe place where people didn’t try and stop me trying new things but actively encouraged me – it’s an amazing feeling!

“Sometimes I feel as if I’m living with the cares of the world on my shoulders, but for just a few precious hours a week at My Sight Notts arts workshops and when I’m singing in the choir I’m surrounded by people who see beyond my multiple disabilities and encourage me.

“I’ve seen my art displayed in public galleries and I’ve sung as part of the choir in concerts all over the country. I feel so proud of what I’ve achieved and of what I can do given the right encouragement and support.”

Elsie’s story

 

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Elsie aged 69 from Keyworth is registered sight impaired (Partially sighted) due to glaucoma. 

“I’d been living with glaucoma for some time and was coping with it, but around three years ago I experienced a sudden and catastrophic deterioration in my sight, which coincided with a change of circumstances in my personal life, which meant I had to adjust to living alone.

“I first noticed there was something seriously wrong when I tried to back the car out of my drive and the lamppost at the bottom kept changing sides so that one day it hit my car, causing a not insignificant amount of damage!

“I’d always been quite sporty and my social circles revolved around badminton and golf. I quickly realised that these things needed good eye sight. Because my social life revolved around sports clubs, I lost lost a lot of friends. They were supportive at first, but there are only so many times people are prepared to find your golf balls for you before it becomes a drag!

“My life and my social activities begin to shrink rapidly, it seemed as if everything had changed quite suddenly and life was closing in, it was frightening. I felt bored, useless and really down – it was all too much to cope with at once.

“The hospital registered me partially sighted and I was referred to social services, who referred me on to My Sight Notts for social interaction. I began attending the Thursday Social Group every Thursday, it got me out of the house and meeting new people, which was what I needed.

“I met other visually impaired people coping with far worse sight loss than me and this inspired me to pick myself up and get on with living my life, albeit it a different life from what I’d lived before and what I expected to be living.

“The Thursday Social Group opened my mind up to new possibilities and I began to explore different ways of spending my free time. I could have sat at home looking at the four walls, sinking deeper into depression, but I chose not to. The Social Group and Arts classes have opened up my world again to all sorts of new possibilities.”

Gina’s story

 

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Gina was diagnosed with macular degeneration 12 months ago. Here she describes how devastated she was and how a leaflet and a friendly face at the hospital eye clinic was a lifeline when she needed it most.

“After a routine eye test at my local opticians I was prescribed new glasses, but when I got them I thought they weren’t right. Everything looked wobbly and I was convinced there was a dirty mark in the middle of the lens. After several attempts at cleaning them, I went back to the optician and asked them to check my glasses.

“The optician suggested a second eye test, I said I’d not long had one, but as they offered it for free, I thought I might as well. The optician referred me to the hospital eye clinic for further tests.

“I was convinced my new glasses were faulty and thought trekking to the hospital was a waste of time, but I went along with it. I’d expected to see a hospital optician but the macular clinic at the Queen’s Medical Centre looked very different from my high street opticians. For starters it was full of people much older than me and it looked like a proper hospital clinic with nurses in uniform – it then dawned on me that something might be wrong.

First I had a scan then the nurse said the consultant wanted a more detailed scan and I would need to have dye injected into my arm through a canular so the consultant could take a better look at the back of my eye. I’m terrified of needles; I’d never expected to see a consultant and suddenly it felt like a serious medical procedure. I felt the panic start to rise and I began to wish I’d asked my husband to stay as I felt quite alone and frightened.

“The consultant said the scan showed I’d had a bleed at the back of my eyes. I couldn’t believe what I was hearing, I said my eyes hadn’t been bleeding, I’d have noticed surely? The consultant said I would need regular injections in my eyes, that there was no cure but they would try to manage the disease and slow it down.

“I felt sick, I heard what he was saying but I couldn’t take it in; it was like I was listening to him from inside a bubble. I remember asking what it meant and he said I had lost some sight but the treatment would hopefully slow my sight loss down and I wouldn’t go totally blind. I remember thinking ‘what are you talking about? I came in with a faulty pair of glasses and now you’re telling me I’m at risk of going blind!

“I can’t remember leaving the clinic, but I do remember getting into my husband’s car and sobbing.

“Over the next few weeks, we started to read the leaflets we’d been given and to search the internet for information about macular degeneration. The more I read the move I could see my exact symptoms being described.

“I felt really angry at the lack of support to deal with such devastating news and I couldn’t believe this was happening to me in my 40s.

“The leaflets I’d been given by the consultant focused on the medical side of things but there was nothing about where I could find help, I seemed to be left entirely on my own to deal with it all.

While at the eye clinic one day, I picked up different leaflets from a desk on my way out. I didn’t read them at first because I thought it would be too depressing – ome of them were from the Royal National Institute of the Blind and I didn’t want to associate myself with blindness.

“Some of the leaflets were from My Sight Notts, I just remember the people in the pictures looked happy and they were written in a language I could understand.

“I went back to the desk I’d found the leaflets the following week and that’s when I met Chris the Eye Clinic Liaison Officer (ECLO). Finding that leaflet and talking to Chris was like being thrown a life-line when I needed it most.

“The Eye Clinic Liaison Officer is always there for me to talk to; I feel listened to and understood by him. I’ve sat and cried with him, laughed with him and even ranted with him, he’s like a calm place in a huge storm.

“I’m not sure where I’d be without the support of My Sight Notts and its eye clinic service, I still have difficulties to overcome, but with his help I’ve come to understand that although some doors feel like they’re shut, they’re not bolted and with the right advice I will find a way through. Life doesn’t stop, it changes and I need support to adapt and move on.”

Mark’s story

 

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Mark from Wollaton, was diagnosed with Retinitis Pigmentosa in early childhood and slowly lost his sight until at the age of 12 he was registered blind.

“Like a lot of people in their 50s I’ve always been quite sceptical about technology, dismissing it as being more trouble than it’s worth. It’s also hard when you’re totally blind to find technology that’s easy to use because you can’t see what buttons to press to make it work.

“Then I met the IT officer at My Sight Notts who inspired me to invest in a smart phone and quite honestly I haven’t looked back! This little piece of technology has changed my life to the extent that I now can’t imagine living without it.

“I’ve always been an independent sort of person, preferring to do as much for myself as I can, but there are some things which are just difficult if you can’t see at all. I used to have to wait for a relative to visit and read my mail and to be honest you don’t always want somebody close to you reading your bank statements do you? Just because you can’t read your own post doesn’t mean you want everyone knowing your business!

“With training and advice from the IT officer at My Sight Notts I now use my mobile phone to read letters. I’ve learnt how to photograph printed material and then use an app which will read it out to me. I can use the app to help un-pack my shopping, I’m no longer reliant on someone to tell me which tin is beans and which is tomatoes.

“I use my smart phone to order my shopping and access the internet. Before I was reliant on a sighted person to take me shopping and help me choose what I wanted. Now I use my phone with its speech capabilities to surf the internet and shop online it’s then delivered straight to me door. I use my phone to send and receive texts and emails, manage my diary and tell me when the next bus is due.

“I’ve worked with the IT Officer to find the best apps and to use the accessibility features built in to all smart phones. This little device has given me back my privacy and independence and put me firmly in control of my own life.”

Mike’s story

 

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Mike from Bilborough lives with his guide dog Kristal and his visually impaired wife Wendy. He was diagnosed with Retrolental Fibroplasias in early childhood and is registered blind.

“I’ve always had a vision impairment but I lost my sight totally in 1992 when I took the drastic decision to have both my eyes removed due to persistent and violent headaches. I now wear two prosthetic eyes and the headaches have disappeared (except when I have a hangover!).

I first met the IT Officer at My Sight Notts four years ago. I visited the charity with a CD player I was struggling to access. He taught me to use it and I had many happy hours with it listening to audio books.

“Over the years I kept investing in stuff I don’t know how to use but every time the IT Officer was my ‘Mr Fix It’, he never lets me down and offers advice in a language I can understand, he doesn’t bamboozle me with jargon, but supports me to explore the new technology myself.

“I don’t always get things the first, second or even the third time but he doesn’t get frustrated he keeps at it until eventually I get the hang of it, so you see it’s true, you can teach an old dog new tricks!

“When I invested in a PC to help manage my 5,000 audio books, I was taught basic IT and PC skills before learning to use the specialist software that allows me to capture, edit store and catalogue my precious audio books from perishable cassette tape to a more durable CD.

“After mastering a PC, I decided to invest in a smart phone as a present to myself when I retired from the Inland Revenue. Of course I called on My Sight Notts again for advice on the best and most accessible phone. Smart Phones cost a lot of money and I didn’t want to get the decision wrong, but I knew the IT Officer would give me the right advice, he’s visually impaired too so he knows what he’s talking about!

I invested in an Apple iPhone and have never regretted it. My favourite and most accessible apps are the Met Office Weather App, The Next Bus App, my Fitness App, my iPlayer and Radio Apps.

“The biggest problem when it comes to technology for people of my age is that we’re afraid of getting it wrong, of breaking it and getting in a mess. Working with the IT Officer has taught me to have more confidence, he’s empowered me to explore technology for myself and that’s been empowering and very liberating.”

Norman’s story

 

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Norman from Bulwell lives with his wife for whom he is the primary carer although he has a visual impairment he is not registered.

“A few years ago I developed a blind spot in my eyes, I’ve been to lots of opticians and doctors but no one seems to know what’s wrong. I’ve had two falls at home and because I look after my wife when she’s not at the Day Centre I worry in case I can’t look after her properly.

“I’ve been visiting Sarah, who brings aids and equipment to Bulwell Library for quite a long time now, I always try to go when I know she’s there. She’s pleasant to talk to, she listens to me and she treats me with respect – which when you get to my age not everybody does.

“I get good advice on what to do about my eyes, Sarah even phoned Age UK for me to set up a home visit by somebody who could check that the house was safe and there was nothing that was making me fall. She also arranged for me to visit the eye clinic at the hospital. The doctor there said I had a cataract coming and it was reassuring to know what it was.

“Knowing My Sight Notts and Sarah are there if I need them is reassuring and because they visit Bulwell, I don’t have to travel far.”

Rob’s story

 

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Rob from Mapperley lives with a dual sensory impairment caused by Ushers Syndrome. He is registered partially sighted and wears hearing aids.

I was diagnosed with Ushers at the age of 30. My vision started to go first; I have tunnel vision so it’s like looking through a pair of binoculars all the time. I’ve also lost my hearing so I wear two hearing aids.

“I used to be a motor mechanic and when I was told I had to give up driving I cried like a baby. I lost my job, a large amount of independence and it felt as if my world had come to an end.

“As a former mechanic, I’m quite a hands-on person, I like to be creative and since I lost my sight I’ve come to love expressing myself in arts of all kinds. I’ve designed Christmas cards for My Sight Notts, played leading roles in its drama performances and most recently joined the choir.

“When I first heard about the choir I assumed it would be impossible for me to sing in a group because I can’t even hear the sound of my own voice! I can’t follow a beat and I was sure I wouldn’t be able to sing in time with the choir.

“The Art Coordinator had other ideas though! First they sat me close to someone I could lip read the words from which helped, but I still struggled with the timing and with keeping the beat. Then another choir member suggested I sit next to her and put my hand on her shoulder close to her throat, so that I could feel the vibration when she sings.

“I’m now fully involved in the choir and people tell me I have a lovely singing voice – which is amazing to me as I can’t hear myself. I’ve slowly built up my confidence to the point where I’m happy to sing in public with the choir. If you’d asked me a year ago if I could sing in a choir I’d have said no, how could someone who is deaf and blind sing with a choir, it still sounds daft just saying it!”

Theresa and James’s story

 

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Theresa from Sherwood has macular degeneration, she lives alone since the death of her husband. Here she speaks about the benefit of being matched with James, her My Guide volunteer.

Theresa said:

“I was diagnosed with Macular Degeneration about 26 years ago, it was really hard at first but once I got over the shock I managed fairly well to start with, but over the years things got more difficult. First I lost my husband and then I couldn’t keep up the repairs on the home we’d shared so I moved into a small flat. The flat’s easier to manage but I’m now not as familiar with my surrounding are, which is difficult.

“As I’ve got older I’ve developed painful arthritis and I was recently diagnosed with Alzheimer’s, which means I’m afraid to go out, I suppose I lost confidence.

As I got older so did my friends and as they became frail they couldn’t support me and so I saw less people and became more isolated. Sometimes I felt desperately lonely and some days I wondered if anyone knows if I was dead or alive.

“Loneliness is a devastating thing and my poor sight makes it worse because I can’t read, watch TV, or see to stop the right bus if I do try to go out alone.

“People need human interaction to live, it’s like oxygen and without it you wither up inside. Going out only once a week with a friend to church but sitting alone for six days is really sad; it feels like the world’s shrinking.

“When someone from My Sight suggested a volunteer My Guide I was hopeful but nervous. The volunteer they had for me was a young man and I couldn’t understand why a young person would want to sit and listen to an old woman like me but I was so desperately lonely I decided to give it a go.

“My volunteer, James is a lovely young man; he’s very kind. We meet once a week for coffee, cake and a chat. He listens to my life stories and I listen to his. He sometimes reads my mail but mostly we talk.

“His visits made me feel better very quickly, I couldn’t wait for him to come and see me. His visits are something to look forward to, something to live for and there’s nothing more important than that.”

James said:

“I guess I’m a typical medical student, I study hard and enjoy anything outdoorsy like tennis and mountaineering.

“Before signing-up to be a My Guide volunteer I looked at various volunteering opportunities on the do-it website and thought being a My Guide for a visually impaired person would be a really worthwhile thing to do. It also worked out with my schedule as I could do it in the evenings and fit it around my final year studies and medical placements.

“We meet at Theresa’s flat and mainly just chat over tea and cake – lots of cake! Theresa has many stories to tell about her interesting life, especially about the Second World War and her move from Poland to the UK. I find her stories really interesting, you don’t always make time to get to know someone from a different generation but I think more of us should! I share with her stories about what I’m doing and I help read her mail. On my last visit, she took me to her favourite Polish restaurant where I tried Polish food for the very first time, which is something I might never have done without Theresa.

“I enjoy volunteering as a My Guide. It makes me happy to know I’m making a difference to a lovely lady like Theresa, it also helps me put my own final year exam stresses into perspective, so it works for both of us.”

Paul’s story

 

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Paul aged 42 from Nottingham was diagnosed with retinitis pigmentosa four years ago and is registered blind.

“When I was diagnosed with an incurable, degenerative sight condition my world changed forever.

I quickly went from the outgoing sporty person I had been into an anxious unfit recluse. I stopped cycling with my local club and after trying to run on my own I soon gave that up too.

I was soon at one of the lowest pointes in my life and I knew I had to do something about it, so I contacted My Sight Notts and their sports coach put me in touch with the blind cricket team – the Nottinghamshire Knights. The enthusiasm and camaraderie of everyone involved, from staff to players, was infectious and just what I needed to get me out of the house and back into a healthy life style and a more positive attitude.

“I’ve travelled much of the county playing cricket and I’ve made new friends developed new skills and am feeling both mentally and physically healthier again. I’ve also regained much of my old self-confidence – especially when wielding a cricket bat!”

Shamaila’s story

 

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Shamaila is in her early 20s and lost her sight at around the age of eight, she plays the paralympic sport of goalball for the Nottingham Sheriffs elite goalball team and also enjoys blind cricket.

“I felt completely excluded from sport at school because of my sight loss, when you can’t see where the ball is to kick it into the goal, hit it was a cricket bat or even pass it to one of your netball teammates, there really is nothing on offer for you at school. I was always told by PE teachers to sit on the sidelines because they really didn’t know what to do with me in lessons.

“That all changed when I came to Nottingham as a student and was persuaded to give blind sports ago – I didn’t even know there was such a thing as ‘blind sports’ to be honest!

“My first goalball tournament was just two weeks after I started training with the Nottingham Sheriffs Goalball Club, I remember we came last! Fortunately that didn’t put me off and since then the team has steadily moved up the ranking, winning loads of competitions. ”

“Incredibly this resulted in me being spotted by Goalball England and being invited to join the national squad and travel to international tournaments all over Europe.

“I’m now addicted to sport, playing both goalball and blind cricket and getting involved in taster sessions in a range of sports from rambling to self defence, but goalball remains my first love. Everyone’s equal when they play goalball, there’s no discrimination against me because I can’t see the ball anymore!

“It’s a great way to keep fit and make new friends goalball can be brutal as you’re basically using your own body as a goal post, but the adrenalin rush is fantastic and I love it! It’s a great team sport but also a brilliant one on one test of your reactions, you just can’t beat it, it’s a great sport for sighted and visually impaired player alike.”

“I’ve made life-long friends through goalball and I’ve travelled to places I would never have got to otherwise. I come from a family that didn’t encourage girls into sport or independent travel – especially girls with disabilities who should be sheltered, protected and in my opinion smothered.

“I’ve grown in confidence since playing sport, helping to coach the youngsters and volunteering as a service user representative at My Sight Notts, which helped me find my first job. Sport has opened up my life opportunities without a shadow of a doubt and I’m so grateful.”

 

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