Glaucoma suspect

[Fran555]

I saw the consultant several days ago and am still a glaucoma suspect rather than having glaucoma as yet, though I will be monitored much more frequently and closely from now on by the eye clinic as the risk is going up. I have come to realise that my biggest fear is not of getting glaucoma and going blind in itself, but of getting glaucoma, going blind and having no support or help. I have no family so no help there, and I have read that social care for elderly blind people from social services is very hard to come by. Is there anyone on here on here who is elderly and completely blind and who has absolutely noone and no help whatsoever? If so, how do you cope with reading letters (paper ones, not emails) and answering them, cooking, knowing if food has mould on it or not, washing your clothes, sheets etc if you don't have a washing machine, managing the stairs, coping if you fall etc? I honestly don't think I could cope with all these things totally alone with noone checking up on me, ever.

[Jon1988]

I do think about the worst case scenario sometimes because I’m younger (34) and have some vision loss in my left eye quite central. When I find myself going down a dark path I just say to myself I will deal with it, technology is honestly amazing and that’s what I would turn to, I work IT and am an advanced user but you can get it to talk to you. There’s also an app on mobiles called bemyeyes which has over 5 million volunteers, I have picked up a couple of calls and the person wanted help reading a meal packaging and turning the heating down, so you wouldn’t really be on your own.

The main thing I worry about is money actually, I think I could cope if the worst happened if I didn’t have to work and didn’t have to live in poverty, other than that, I could still ride my bike indoors, I can still go for walks, I can still play piano and listen to music, podcasts, audiobooks etc.

[Fran555 in reply to Jon1988]

Thank you for your very nice reply. I am really sorry that you have glaucoma at such a young age and hope that a cure is found soon . Don't you have any people to support you as well as technology? Although technology can do so much, it can't replace people calling in on you in real life too. And when and if it happens to me, I don't know if I would be able to handle all the advanced technology at an older age.

[Jon1988 in reply to Fran555]

I do, I’m married, but you never know what could happen so I try to prepare mentally to look after myself, plus I would not want to be a burden on my wife or family. Regarding the technology, you may surprise yourself, just picking up a little can make a big difference. I’m a volunteer for RNIB and go around to peoples houses when they want help with technology, so you would have access to this support and a lot more. To be honest, even if you were diagnosed with glaucoma today, you would likely be fine and this would never happen, but there is a lot of support you just need to reach out and ask for it.

[VerdiG]

well I do have Glaucoma and have lost a bit of vision. I live alone and my sons are living abroad so I don’t have family nearby. Most of my friends are getting older with their own health issues or family to care for., This was one of my initial fears when my Glaucoma started to get worse. As I am very independent and not good at asking for help. I have simply decided not to entertain these fears . Many elderly people lose vision and other physical health if they live long enough. It’s a shame we live in a society that is unable to support elderly people and for that we need to look at our political choices. I just refuse to entertain these fears and anxieties because none of us know how long we will be here for and worrying about the future prevents me enjoying all the good things in my life now. If things ever did get worse I would make use of the support and gadgets etc that RNIB offer. Good news that you don’t have Glaucoma and that you are being monitored carefully so you will get preventative treatment should it occur.

[frankthebank]

Hi Fran, I just wanted to say please don't panic (I know thats easier said than done) Even if worse case scenario you did get Glaucoma, it doesn't mean you will go blind, people can have it for decades without that happening, I know it's easy to jump to worse case scenario, I've been there myself, but please try to stay positive at every stage; because there is great treatment out there. All the best to you.

[Trish_GlaucomaUK Partner]

Hello Fran,

A person who has suspect glaucoma may never be diagnosed with the condition but are, as you say regularly monitored.

Some consultants prescribe eyedrops as a preventative measure to stop glaucoma from developing, or even offer laser treatment. While others, if they feel there is no urgency to start treatment, will just arrange for the person to be monitored closely. This would change to treatment if they felt it time to do so.

In your case, if glaucoma was diagnosed, it will be in the very early stages. This is good news, although understandably, the person being told this, doesnt normally see it that way. Early diagnosis and treatment, reduces the risk of anymore progression and will help to maintain their vision for the rest of their life.