Helen and Jill’s stories
Helen Brazier and Jill Aldred were both diagnosed with glaucoma in their forties and have personal experience of various treatments. They became friends through volunteering at Manchester Royal Eye Hospital and have shared their stories with us.
There are ways of successfully managing daily life and having a good time even if you can’t see very well.
My glaucoma was discovered after my mum was advised to get the family checked when she herself was diagnosed in her seventies. I hadn’t noticed any changes in my eyesight but I wasn’t surprised because glaucoma runs in the family. In fact, I may have had reduced visual fields all my life because I was never good at ball games as a child.
I was registered as partially sighted in 2018. For many years I didn’t realise that my glaucoma was considered quite advanced but most of the time I’m not particularly aware of my sight loss. I do have to be careful when I’m out hiking, as I’m inclined to walk into branches. Of course, daily living is a little trickier this year in the context of Covid. In new environments I find it difficult to quickly take in all the signs.
When my visual fields deteriorated, I had to surrender my driving licence. Luckily I live in a place with reasonable shops and public transport, and I now have a disabled person’s travel pass.
I’ve used a huge variety of glaucoma drops over the years. I didn’t get on with beta blockers or with some drops that made my eyes red and sore but others were fine.
Ultimately though, the drops alone didn’t keep my pressures low enough. 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 drops. My pressures were still variable and in 2017 I had to have a scleral graft, then later that year a Baerveldt tube. Unfortunately it wasn’t fully effective and the following year I had a Cy-Pass stent. In February 2020, I had micropulse diode laser treatment which seems to be keeping my pressures stable for the time being.
I wouldn’t want to give the impression that everyone diagnosed with glaucoma will need all these treatments because most people respond very well to eye drops or surgery. The procedures I’ve had were occasionally uncomfortable but I was never in pain. With the trabeculectomies, I was off work for a couple of weeks but after the Cy-Pass I was back to normal activities the next day.
Eye drops are important so you have to be conscientious and organised. At one time after surgery I was taking different types of drops 17 times per day so I made a spreadsheet to keep everything in order.
My tip for anyone living with glaucoma is always to 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.
I’ve had a lot of support from people at Henshaws, a Greater Manchester based charity. The glaucoma UK website, magazine and helpline are also useful sources of specialist information and advice. The glaucoma nurses at the eye hospital have been very kind and informative too.
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 sympathetic husband but I don’t want to be dependent on him. My friendship with Jill is a great support because we can share concerns and experiences.
In terms of the future, pinpointing the precise cause of glaucoma would be an achievement. In the meantime, I hope to see successful research into new management strategies. I’m hopeful that I won’t lose all my sight. I don’t want to be defined by my eye condition, I just want to get on with my life.
I hope that my consultant, who has done so much for me often against the odds, never gives up trying.
I was diagnosed after a visual field test at my optician that clearly showed two dark eyebrow shapes in my vision. But a long time before that I had noticed that letters were missing when I was reading. I told my GP but he’d never heard of such a thing.
I’m not sure whether glaucoma runs in my family. Dad was only recently diagnosed with glaucoma in his eighties, as he hadn’t visited the optician for many years.
I’ve been registered as partially sighted for quite a while as I have glaucoma in both eyes. I used to work as a language lecturer and when I was marking students’ work, I began to notice that I missed adding up some marks. I’d have to repeat the process three or four times!
Like Helen, I don’t drive as too much of my vision is missing. I also have a disabled person’s travel pass and until this year I used the train and bus a lot. When I can’t get somewhere by public transport, I’m 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. I feel more disabled as I used to have a car and now I don’t. I particularly miss it this year because travelling on public transport is not so appealing in the time of Covid.
I try to explain to people that glaucoma means parts of my vision are missing. For example, there have been occasions when I couldn’t see a light switch or the top of a bus. People find it amazing. However, it’s annoying when they say “You look OK” or “You seem to be able to find your way”. Visual impairment is not well understood. This has caused more problems than ever this Covid year; for example, people with sight problems weren’t given priority online shopping slots until a successful campaign resolved the situation.
I’ve had all the same problems and procedures as Helen, apart from the scleral graft – but I can add two deep sclerectomies and a Paul tube to the list!
I get nervous before surgery and I prefer to have local anaesthetic if possible. Aftercare can be tricky: a friend once tried to help wash my hair but I got water in my eye even though my face was swathed in towels. I would recommend having your hair backwashed at the hairdresser.
After surgery, there is always a punishing drops regime. I find it useful to put a timetable on my mobile phone with alarms. I also 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.
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. Appointments have inevitably been delayed this year due to Covid.
My tip to anyone attending an appointment is to find out from your consultant when they want to see you again and what you should do if you don’t get an appointment within that time. Take a list of questions, and don’t worry about voicing your concerns.
Having met Helen, I realise I’m not the only person experiencing these issues. We have become good friends, and if it hadn’t been for our situation our paths would never have crossed, so every cloud has a silver lining!
My hopes are that researchers will develop a procedure that works long term or drops that stop further sight loss. It would be wonderful if a means could be found to restore 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.