Living with glaucoma
The majority of people diagnosed with glaucoma today, will retain useful sight for life.
If prescribed eye drops it is vital that these are used as prescribed - eye drops are for life and not just for a short course of treatment. The eye drops and how to take them section provides useful advice on how to store and how to use eye drops.
Driving and re-applying for a driving licence is a significant issue for people living with glaucoma. We have worked with the DVLA on this, and the Driving and glaucoma section gives and overview of the regulations, the tests and what to expect.
Other issues covered in this section include: leisure and sports, flying, pregnancy, drinking, smoking and frequently asked questions. This section will be added to over time, so do please come back or post on our Forum if there are new areas that you feel we should cover.
Jill Aldred and Helen Brazier
Jill Aldred and Helen Brazier were both diagnosed with glaucoma in their 40s and have personal experience of various treatments. They became friends through volunteering at Manchester Royal Eye Hospital on the Information Desk run by Henshaws, a Greater Manchester based charity that supports people with sight loss to go beyond expectations. Jill loves baking and gardening, and is Chair of an “In Bloom” group. Helen is a keen hiker and also a Trustee of Henshaws. When Jill and Helen read that the IGA was keen to collect stories from glaucoma patients, they met for a chat…
Jill: How did you find out about your glaucoma, Helen?
Helen: When my Mum was diagnosed with glaucoma, in her 70s, she was advised to get the family checked. So mine was picked up then, relatively early when I was in my 40s.
Jill: I was diagnosed when I was 48, following a visual field test at my optician that clearly showed two dark eyebrow shapes in my vision. Had you noticed anything different about your vision at that time, before your test?
Helen: I hadn’t noticed any changes but I wasn’t surprised about the diagnosis because glaucoma runs in the family. In actual fact, I think I may have had reduced visual fields all my life because I was never good at ball games as a child.
Jill: Now I come to think of it, neither was I. I’m not sure whether glaucoma runs in my family as Dad was only recently diagnosed with glaucoma it in his 80s, as he hadn’t visited the optician for many years. I used a nasal spray for a long time which listed glaucoma as a possible side effect but at the time I didn’t even know the meaning of glaucoma.
I had been noticing for a while that things appeared to be missing: for example, numbers above the doors at work; people’s heads on TV; and I couldn’t see the whole of myself in the mirror. But a long time before that I had noticed that letters were missing when I was reading. I told my GP but he had never heard of such a thing.
Helen: That’s a surprise, isn’t it?
Jill: I don’t think the impact of glaucoma is well understood. Perhaps GPs need to be better informed of the symptoms as not everyone goes to the optician regularly. Another GP thought an operation I was having would cure my glaucoma and as we well know, that isn’t the case. What treatments and procedures have you had?
Helen: I’ve used a huge variety of glaucoma drops over the years. I didn’t get on with beta blockers or with some other drops that made my eyes red and sore but others were fine. Ultimately, the drops didn’t keep my pressures low enough on a permanent basis. In 2005 and 2007, I had right and left trabeculectomies combined with cataracts, both followed by numerous bleb revisions in clinic and in the operating theatre. The drainage channels would continually scar over and I continued taking eye drops. My pressures were still variable and whenever my right-eye pressure exceeded 17 my consultant noticed loss of visual field. After a bleb revision in 2017 I had to have a scleral graft, then later that year a Baerveldt tube. Even that was not fully effective and in July 2018 I had a Cy-Pass stent which appears to be working satisfactorily, although ironically the manufacturer has now taken it off the market.
Jill: I’ve had a similar experience; all the same problems and procedures as you apart from the scleral graft – but I can add two deep sclerectomies to our list! They were carried out in Huddersfield because they were unavailable at Manchester at the time. I once travelled as far as London for another expert opinion.
I was allergic to most of the drops, one of which made me swell up so much that I looked like a giant squirrel! My eye has also been pumped up with a solidifying gel when the pressure went too low and caused wrinkling and low vision. But unfortunately no surgery worked for long, and I’m back on drops in both eyes, with regular check-ups and field tests to monitor the situation. My pressures need to be 12 but are often higher. Oh dear, it sounds quite a horror story, doesn’t it?
Helen: I think we are unusual, aren’t we? Most people respond very well to eye drops or surgery. I wouldn’t want to give the impression that everyone diagnosed with glaucoma would have to endure all these treatments. Should we form an Extreme Glaucoma Club?
Jill: Yes, I think we should!
Helen: To be honest for many years I didn’t realise that my glaucoma was considered quite advanced. Perhaps my doctors were very tactful and they were always very positive about new treatment options. I’m not sure whether it’s helpful to know but it certainly explains the strange visual effects. So how is your vision now Jill?
Jill: I’ve been registered Sight Impaired for quite a while as I have glaucoma in both eyes. My central vision is affected more than my peripheral vision. My sight is cloudy in one eye, and I find that things are missing, such as tops of buses, red traffic lights, the flag on a For Sale sign, small items on my plate, light switches... I once saw the kitchen-roll holder without the kitchen roll, even though it was actually there, because my brain fills things in.
Helen: I’m also missing parts of my visual field so I have to be very careful not to bump into branches or miss unmarked steps and I find it difficult to scan details of a busy scene such as a station. I sometimes struggle to find small objects that I know I have just put down. I can’t see well in the dark and I prefer a bright light. I’m aware that my brain is filling in missing parts of my visual field with a blank space or a wrong word and I think I may be unconsciously taking all these issues into account by moving my eyes or my head more.
Despite various treatments, my right-eye vision is rather a lot worse than it was even a couple of years ago. I’ve just been registered as partially sighted. I have 13% vision in my right eye and 48% in the left, and I was a bit shocked when I discovered these measurements, but most of the time surprisingly I’m not particularly aware of my sight loss.
Jill: When I look at a bright white surface I can see the shapes of the missing sight. I can even draw them and they resemble the printout of the fields test and even show missing vision the test hasn’t yet picked up, which I find really scary. Apparently, I’m very “symptomatic”... which means that I’m aware of what’s missing whereas most people apparently are not.
Helen: I think we’re both quite observant about our own condition, aren’t we? To my mind, the effects of glaucoma aren’t well depicted in the professional literature because they’re often illustrated as a dark peripheral ring in the vision but it’s not like that for me. A few years ago I participated in a research study that involved writing a diary about what I noticed, which was a very useful exercise even though it was disheartening to realise that the condition was getting worse. How did you feel as your glaucoma progressed? Were you worried?
Jill: My first reaction was perhaps a bit extreme in that I said to myself “I’m going to go blind. I’d better dash off and see the world now before it goes, but I’m having so much treatment I can’t do that”. I hated to catch a glimpse of the shapes on the wall and see that an extra bit had been added. My feelings haven’t changed all that much now. I still haven’t gone on a world tour, but in fact I think it’s the everyday things I’d miss the most, as I love flowers, colours, scenery; I’m much more a visual person than an auditory one.
Helen: I’m hopeful that I won’t lose all my sight though I’m highly reliant on my left eye. Through my past work and current activities, I know a lot of people with sight problems so I’m aware that there are ways of successfully managing daily life and having a good time even if you can’t see very well. I’m lucky to have a supportive husband but I don’t want to be dependent on him.
Jill: How does your vision impact on your daily life?
Helen: I can manage quite well day to day. Other people wouldn’t necessarily know that I can’t see very well so sometimes I have to ask for more light or large print. I’m not averse to pointing out accessibility issues.
I love hiking and I find walking on rough ground requires more concentration as does gardening. I can’t see dust or bits on the floor which is a great excuse not to do the cleaning!
Jill: I have trouble finding my way if I’m in an unfamiliar area, and finding things on supermarket shelves. I’m never sure if I’m seeing everything, especially in poor light conditions, and I have a tendency to knock things over and trip on steps. Round the house, my eyes get tired easily when doing jobs that require concentration. I try to remember not to bend over to pick things up, as I’m told that that if my head is below my heart, it can cause increased pressure. When I’m reading, I don’t see chapter headings and I misread words.
If someone hands something to me, I might miss taking it from them properly and recently I got stabbed lightly in the hand by a pair of scissors! I see better outside than inside, long distance than middle or close distance; perhaps something to do with focal length?
Helen: I stopped work a few years ago and I would find it hard if I were working now. How about you?
Jill: I no longer work, but I was finding I got tired easily, and my employer had to make allowances for me especially after one of my numerous operations. I was a language lecturer and when writing on the board I would think I’d missed accents off words when in fact they were there! When adding up marks on students’ work I’d miss some and have to repeat the process 3 or 4 times.
Helen: What about driving? I’ve had regular DVLA tests and this year I had to surrender my licence because my vision has deteriorated. Nobody wants to give up driving but I wouldn’t want to be responsible for an accident. Luckily I live in a place with reasonable public transport and shops and I have applied for a disabled travel pass.
Jill: I don’t drive either as too much of my vision is missing. I already have a travel pass which I find invaluable as I use the train and bus a lot. When I can’t get somewhere by public transport, I am reliant on other people to give me lifts. It definitely affects my independence because I feel as if I have to wait for invitations: I can’t just drive to the shops or pop round to see my father or a friend. I feel more disabled as I used to have a car and now I don’t. I always explain that the reason is that I don’t see well, in case people think it’s to save money or worse because I’ve been done for drink-driving!
I sing in a choir but find it hard to share music with the person next to me as I can’t see the whole score unless I hold it directly in front of me, so I suppose I might come across as stand-offish. It gets quite tiresome to keep explaining and I don’t want to feel different from the others. How do you explain your sight problems to other people?
Helen: I find that many people are squeamish about eye surgery so it’s not helpful to give too much detail. They often imagine that surgery will cure my eye problems so I have to explain that it only prevents the situation from getting worse.
Jill: I’ve found the same. I try to explain that glaucoma means that parts of my vision are missing and give examples which people often find quite amazing. It is annoying when they say “You look OK” or “You seem to be able to find your way”. People don’t understand visual impairment and that there is a place in between seeing well and total blindness.
Helen: Is there any equipment or technology that helps you?
Jill: I find it tiring to look at small type so using a Kindle is helpful, as is having a larger font on my computer, Smartphone and tablet. If type is small and lines are close together I can see the shapes of missing vision which is off putting and makes reading more difficult.
Helen: I appreciate a good reading light, clear print and the option to magnify text on screen. I also find that I listen to the radio and podcasts more than before.
Jill: How have you managed your regime of eye drops, Helen? They can have quite an impact on our daily lives.
Helen: Eye drops are important so you have to be conscientious and organised. I know that some people have difficulties with the bottles or even the concept of putting drops in their eyes but it hasn’t been a problem for me. At one time after surgery I was taking different types of drops 17 times per day so I compiled a spreadsheet to keep everything in order. You gave me a good tip, Jill, to put the timetable on my mobile phone with alarms.
Jill: Yes, I found that really useful as there is always a punishing drops regime after surgery. I found it useful to have a handwritten tick list of what to take and when.
As for routine drops, I’ve got used to putting them in at about the same time each morning. Drops that have to be kept in the fridge are a real nuisance when I’m away from home during the day. But putting in any drops can be a challenge when out and about, especially as I like to use a mirror.
Helen: How do you feel about surgery?
Jill: I get very nervous before surgery. I’m always afraid for weeks beforehand that I’ll have a cold and it will be delayed. I prefer to be awake as I’m scared of general anaesthetic even though I’ve had 10 or more procedures. I get very nervous because of all the waiting around once I get to the hospital; then I have trouble getting home as there isn’t always someone who can pick me up at the time I’m ready to leave. It’s a long way from the ward to the taxi rank, which is a challenge when you have a shield on one eye and can’t put your glasses on and there are no staff available to help.
Helen: Surgery is never a great prospect, is it? However much I know that there’s no need to worry, I always feel apprehensive because my imagination tends to work overtime. It’s very reassuring when you can talk to someone else who has been through the same experience. But I have to say, I have never been in any pain during or after surgery. With the Cy-Pass I was back to normal activities the next day though I had a haemorrhage that lasted several weeks; with the trabeculectomies, I was off work for a couple of weeks.
Doctors naturally focus on the technical aspects of surgery and have less to say about managing daily living. I was sorry not to be able to wear a bit of mascara and I had to take care washing my hair for a few weeks
Jill: I can remember terrible scenes in the bathroom with a friend trying to wash my hair and, even though my face was swathed in towels, water still got in my eye. I would recommend having your hair backwashed at the hairdresser.
Helen: It’s always frustrating for me that surgery changes my vision and I have to wait some weeks or months before obtaining a new lens for my glasses.
Early on, I read a book about glaucoma which explained that surgical treatments tend to make your sight worse but the objective is to stop it getting much more worse in the long term. That was quite a hard concept to get my head around because I do notice that my vision gets worse after surgery and that’s always frustrating. But I try to take the long-term view and think about the benefits.
Jill: How do the numerous follow-up appointments after surgery affect you?
Helen: Generally I am happy that the hospital is carefully monitoring my vision so I don’t mind attending appointments even on a frequent basis after surgery. I have had regular eye tests of different kinds, including the visual field test. Nobody likes doing this test; I don’t know why but it’s the most stressful part of the situation.
Jill: I hate those visual field tests too. I really appreciate that I am seen at frequent intervals after surgery, even though it’s a long journey which is not easy when you can’t see very well.
Helen: What about regular appointments for monitoring your condition?
Jill: It can be very frustrating and upsetting if you are told to come back after two months and it turns into three or four months. I wonder if part of the problem might be that the system doesn’t differentiate between patients who need an appointment after two months and those needing one after six or twelve months? Even if you have an appointment, you can receive a letter or phone call close to the date (or even on the day itself) to say it has been cancelled “due to unforeseen circumstances”.
Helen: I haven’t had experience of appointment dates being badly delayed but there is usually a wait in the clinic. It’s always busy but I appreciate that the doctors give everyone the time that that they need and I’ve never felt rushed. I try to remember to take a book or magazine to keep myself occupied.
Jill: Have you any tips for other glaucoma patients?
Helen: Always take your drops as recommended. If you have the appetite for it, read about your condition so you are aware of what’s usual or unusual and can take more control of your situation. I have found it helpful to request a copy of my visual field tests so that I can see for myself how my vision is changing.
Jill: My tips would be: find out from your consultant when he or she would like to see you again and what you should do if you don’t get an appointment within that time. Take a list of questions to ask during your appointment. Don’t worry about voicing your concerns. See or phone the Henshaws’ Patient Support Officer or equivalent if you are upset or worried about anything. On that topic, what organisations or people have helped you, Helen?
Helen: I have had a lot of support from people at Henshaws, especially the Patient Support Officer. Many years ago I joined the International Glaucoma Association and have found their website, magazine and helpline a useful source of specialist information and advice. The glaucoma nurses at the eye hospital have also been very kind and informative.
Jill: Having met you, Helen, I realize I’m not the only person with these issues; I didn’t know anyone else until our paths crossed. I’ve had a lot of help from the same organisations, as well as telephone support from RNIB. 12 years after being diagnosed I can still see, but no one has been able to take away my fear of going blind.
Helen: I understand how you feel. Thank goodness for friendships like this which help us keep a sense of perspective. You often say that it is important to have a sense of humour.
Jill: Yes, if it hadn’t been for our situation we wouldn’t have met but we have many interests in common and have become good friends so every cloud has a silver lining. So what do you expect or hope for the future?
Helen: Nobody seems to be able to pinpoint the precise cause of glaucoma so that would be an achievement; and in the meantime I hope to see successful research into new management strategies. For myself, I hope my left eye holds out. I don’t want to be defined by my eye condition; I just want to get on with my life.
Jill: I hope that a procedure can be found that works long term or that drops I can tolerate will stop any further sight loss, and that ultimately a means will be found of restoring lost vision. Most of all I hope that my consultant, who has done so much for me, often against the odds, never gives up trying.
Helen: I agree; we are lucky to enjoy the benefits of the NHS, new research and support from some fantastic people.
© Jill Aldred & Helen Brazier